What is Fibromyalgia?
Fibromyalgia Syndrome (also called ‘FMS’ or ‘FM’) is a complex, chronic condition, which causes wide spread pain and fatigue.
Its effects are felt primarily in muscles, tendons and ligaments throughout the body. FM is also sometimes called Fibrositis.
The pain of Fibromyalgia Syndrome is usually described as aching, throbbing or burning and is unpredictable in nature. It’s severity varies from mild, tired, to feeling all consuming exhaustion and weakness.
Who gets Fibromyalgia?
Although Fibromyalgia seems mainly to affect women between 30 and 50, increasing experience is showing that males and all age groups can be affected.
It can be set off or triggered by having another medical condition, especially Arthritis.
It is not uncommon to find that people with Rheumatoid Arthritis or Osteoarthritis have Fibromyalgia at the same time. This can sometimes complicate the diagnosis and the management for some people.
Is Fibromyalgia a form of Arthritis?
It often surprises people to learn that Fibromyalgia is not a true Arthritis as such.
The world Arthritis means inflammation of the joints and is a term that is used to describe that large groups of different conditions that affect the joints of the body.
Fibromyalgia refers more to pain that is felt in the non-bony or ’soft-tissue’ structures around the joints, such as muscles and tendons.
How is Fibromyalgia diagnosed?
None of the signs and symptoms of Fibromyalgia show up on diagnostic tools such as blood tests, x-rays and diagnostic scans. This makes diagnosis more difficult than for most other syndromes.
With Fibromyalgia, diagnosis has to be made through physical examination of the person, and through listening to their history. This means finding out about what triggers symptoms, and the course and pattern of the symptoms.
This way of diagnosing can sometimes lead to controversy as the diagnosis has been based mainly on the person’s opinions and thoughts, rather than something more measurable.
To help this process, some key diagnostic points to make diagnostic more definite have been established. These include the presence of at least 3 months of widespread pain, tenderness, and at least 11 out of 18 recognised ‘tender points’, It is known that the body is more tender at these points in everyone, but these points are particularly tender in FM.
What are the Symptoms of Fibromyalgia?
The symptoms of Fibromyalgia vary a great deal. People with Fibromyalgia often complain of varying degrees of muscular pain, stiffness and fatigue.
Pain is present when people are resting but may be worsened by exercise. Pain is felt in all four limbs and almost always in the upper and/or lower parts of the spine, and/or the head, face and jaw.
Fatigue may be a prominent feature and when severe, makes it difficult to tell the difference between Fibromyalgia and Chronic Fatigue Syndrome.
Stiffness, body stiffness is a significant problem experienced by most patients. It can occur upon awakening or remaining in one position for prolonged periods. It can also accompany weather changes.
Increased Headaches or Facial Pain. Headaches are a common complaint for many with FMS. They may be caused by referred pain from tender neck and shoulder areas, or they may be associated with pain in the muscles and other soft tissues around the temporomandibular joint, or TJM, which is located where the jaw meets the ear. In the latter case, jaw or facial pain is usually present too.
Abdominal Discomfort, FMS-related symptoms include digestive disturbances, abdominal pain and bloating, constipation, and diarrhoea. As a whole, such symptoms are known as irritable bowel syndrome.
Irritable Bladder, Fibromyalgia patients may notice an increase in urinary frequency or experience a greater urgency to urinate. Often no accompanying bladder infection is present.
Numbness and Tingling, also known as “paresthesia”, symptoms usually involve a prickling or burning sensation, particularly in the extremities.
Chest Pain. Persons with FMS sometimes experience a condition called “costochondralgia” which involves muscular pain at the spot where the ribs meet the chest bone. Since costochondralgia mimics cardiac symptoms, it is always a good idea to check with a physician if chest pain occurs.
Cognitive Disorders. Frequent complaints, which vary from day to day, include difficulty concentrating “spaciness”, “fog”, memory lapses, word mix-ups when speaking or writing, type of stuttering (difficulty getting words out) and clumsiness or dropping things.
Disequilibrium. FMS patients also experience dizziness and balance problems. Typically, there is no classical, spinning vertigo. Rather difficulties in orientation occur when standing, driving or reading.
Environmental Sensitivity. Allergic-like (but not true allergies, i.e. non immune mediated), reactions to a variety of substances are common, including sinusitis, as are sensitivities to light, noise, voice (when tension head/headache is present) odors, and weather patterns. Dryness of the skin, eyes and mouth is also common.
Other Symptoms. Fibromyalgia Syndrome is often described as the “Irritable Everything Syndrome” increasingly, additional symptoms and syndromes are being associated with FM.
Correct diagnosis of Fibromyalgia is imperative, as there are many over-lapping disorders with similar symptoms.
What is the Treatment for Fibromyalgia?
To date, there is no cure for FMS. Treatment consists of managing symptoms to the greatest extent possible. There is growing evidence that an individually tailored self-management program, where people develop techniques to control their own symptoms is the most effective way of dealing with the syndrome.
Because FMS sufferers vary widely in their responses to available treatments, several approaches may need to be tried before a satisfactory program can be established.
The following treatments, used alone or in combination, generally help FMS sufferers improve their quality of life.
Medication: For pain relief and improved sleep, low dose anti-depressant medications which increase the body’s level of serotonin (a chemical in the brain that regulates pain and sleep) are often prescribed.
Physical Therapy: Among the many types of available approaches are: massage, myofascial release, posture and movement training, the application or heat (ie moist heat packs, hot baths or showers), the application of cold/ice packs, physiotherapy, ultrasound and heat creams.
Exercise: Gentle exercise can be helpful in easing sore muscles by increasing blood circulation and range of motion. Medical practitioners usually prescribe stretching and low-impact exercises (ie. Water exercise in a warm pool, and walking).
Alternative Approaches: Increasingly, Fibromyalgia patients are finding some relief from such treatments as biofeedback, yoga, tai chi, stress management, nutritional counselling and acupuncture.
Occasionally psychological counselling is required if psychological issues are prominent.
Due to the complex and confusing nature of the syndrome, a good relationship with a particular and understanding Doctor is also essential. The Doctor must not only support and help co-ordinate care, but must be ready to re-evaluate and reassess the person with Fibromyalgia if new symptoms appear.
Another positive means of getting help is to join a Support Group such as the one run by the Arthritis Foundation which provides the opportunity for mutual support, education and for the sharing of problems and solutions with other people with Fibromyalgia.
What is the cause of Fibromyalgia?
The cause of Fibromyalgia is unknown and it is a syndrome that is discussed and debated often in the medical and scientific community. Research into the syndrome only began in the 1980s but it has been established that Fibromyalgia is a specific and identifiable condition.
Overseas studies indicate that various types of syndromes where people have these symptoms, including Fibromyalgia, may affect up to 4% of the population. This figure would make it one of the most common causes of musculo-skeletal pain in the community.
While researchers continue to seek the cause of Fibromyalgia Syndrome, there is evidence that FMS is triggered in pre-disposed individuals by such precipitants as illness, physical trauma to the body, or acute emotional stress.
FMS also seems to run in some families, although no genetic component has yet been identified.
Many people with Fibromyalgia are found to be physically very unfit but an exercise program, while helping in the overall management of the symptoms, appears not to be a complete answer.
Some people with Fibromyalgia experience difficulty with sleep. This has been supported by the presence of a characteristic pattern of the electrical brain wave activity in the brain. However, improvement of sleep still does not relieve all the symptoms.
There has been wide spread belief that Fibromyalgia is a psychosomatic disorder, that is, one that occurs because psychological disturbances and distress, rather than something physical.
However, many studies have shown that not all people with Fibromyalgia are psychologically distressed, and several have suggested that the incidents of such distress is the same in people with Fibromyalgia as in those with chronic painful conditions, for example, Rheumatoid Arthritis.
Encouraging research is now occurring in the fields of Neuroendocrinology, Immunology, Cardiology, and Exercise Physiology, amongst others.
This research is beginning to offer some new insights into possible causes.
Evidence is now being found which suggests that many people with Fibromyalgia have altered chemical levels in the fluid surrounding their brain. These chemicals are responsible for the transmission of pain and sleep signals. Subtle changes in the nerves and the blood hormone levels have been seen.
Fibromyalgia Syndrome simulates diseases eg Raynards, thyroid, sinus and eye diseases.
Together with its other features, Fibromyalgia could be described as a Generalised Pain Amplification Syndrome, where minor discomforts are magnified to be felt as major pain, and even non-painful sensations are felt as discomfort. FM may also be described as the body coping with a specific stress or trauma in an abnormal way. It could, therefore, also be described as Disordered Sensory Processing.
This might result from a ‘resetting’ of the way in which the central nervous system processes information about pain from the body. Therefore, once the syndrome of Fibromyalgia has developed, it could be said that there is no one single ’cause’ of the problem.
* Source : Arthritis Foundation of SA Inc
I am so delighted to find this comment, I have been diagnosed (possibly) with pain amplification syndrome within a workers’ compensation claim. From my understanding of the comments from the specialist – aurhorised by my employee, that this condition relates to “personality and psychological influences”. My pain area relates to my hands, fingers and wrists. I am a post office box sorter. It is good to read from your site that my pain is real , and I can keep fighting for my claim.
July 2nd, 2008 at 2:39 pmi am 32 years old and have gout for 15 years now ,in the last 12 months is has turned into cronic tophaceous gout affecting my hands, feet,elbows and wrists .I feel as tho i may have Fibromyalgia as i expierence alot of upper and lower back pain and my body constantly throbs with no respite making it hard to sleep and live ingeneral if anyone out there who is suffering this condition would you be kind enough to let us know of your expierience and what medications/exercise programs or diet you undertake to relieve your condition thanks
September 4th, 2008 at 5:45 pmThis comment is for Peter Rock, Lesley Weekes and Diane J Larsen. I work for DIRC and do not have Fibromyalgia and so can’t speak from personal experience. However, I hope some of the organisation contacts we have may be of use to you. You may already be aware of all these services but on the off chance there may be something useful here I’ll keep going. The Arthritis Foundation in South Australia is the parent body for Fibromyalgia SA. There is a specific peer educator available to talk to others experiencing the condition on Tuesdays from 1pm – 4pm. If you ring, email etc out of those hours one of the general staff will speak to you and send a fibromyalgia specific information pack. They will also take your name and number so that you can have a return phone call from the peer educator, Jenny, on the Tuesday. They also do this for people living outside of SA, as some State arthritis organisations are not as well set up as they are here in SA. If you live outside of SA you can of course approach the arthritis organisation in your state as well.
September 9th, 2008 at 3:58 pmFIBROMYALGIA SA
Unit 1 / 202 Glen Osmond Rd,
Fullarton SA 5063
8379 5711 Freecall: 1800 011 041 Fax: 83795707
Internet: http://www.arthritissa.org.au
Email: fibromyalgia@arthritissa.org.au
Here are two other organisations who may also have something to offer.
I am not sure if these two groups offer services outside of SA but they may know of interstate based organisations or support groups. And you can always look at their websites.
In addition to this service there is also the
ALLERGY AND ENVIRONMENTAL SENSITIVITY SUPPORT AND RESEARCH ASSOCIATION (AESSRA) (Head office in Victoria)
Contact Josie Lee : SA Contact 15 Manoora Dr, Hallett Cove SA 5158
ph: 8381 9286
Internet: http://www.vicnet.net.au/~aessra
Email: acsa@ihug.com.au
SOUTHERN CHRONIC ILLNESS LINKS NETWORK / CHRONIC ILLNESS PROJECT CENTRE
Cathie Powell : Services Manager & Social Worker
Flinders University Post Office Box 10,
Bedford Park SA 5042
8358 6086
Internet: http://www.communitywebs.org/chronicillnesscare
Email: bpprojects@telstra.com
cathiepow@e-access.com.au
Hi, i have recently been diagnosed with fibromyalgia, i am 43 and have thought that i was mental, i really thought it was all in my head, after experiencing some very non understand doctors…. I have pain everywhere and it moves, its like a stretching feeling and if i stand to long i feel a stretching feeling in my back, if i sit in the car i cant get out my back seizes and im bent over, i also have trouble sleeping and need medication. I sometimes feel like my whole body is overcome with the feeling to sleep during the day, i just get so tired that i cannot even think straight. I get alot of pain just siting here typing… I have bowel problems, bloating, running to the toilet, and the list goes on! Deb
September 9th, 2008 at 7:06 pmWe have eighteen items in our library collection that directly address issues around fibromyalgia, some of them quite recent publications.There would also be others in the collection that might make reference to fibromyalgia in books/DVD’s etc concerning related illnesses or conditions (ME/CFS, arthritis and items dealing with chronic pain) We also have six articles in our journal collection. Any person in South Australia can borrow from our collection (we have over 2,500 items in the collection all with some connection to disability) and the catalogue can be viewed on the website. Library staff are only too happy to discuss your needs. We will post items to people in the rural and remote regions asking that the items be returned via registered post. Other than return postage there is no cost for borrowing items from the library. Contact us via email library@dircsa.org.au phone (08) 8236 0555; or for rural calls in SA only (at the cost of a local call) 1300 305 558; TTY 8223 7579.
September 10th, 2008 at 11:24 amI have been diagnoses with FMS only experience the terrible burning in my head and face anyone with same situation – also fatigue..
September 22nd, 2008 at 5:18 pmI was diagnosed more than 10 years ago I’ve have had endless support from fibromyalgia SA . I’m 37, have 3 teens and I no longer work. Working as a chef with FMS is not possible, but I lasted 15 years after the pain started.
October 1st, 2008 at 12:11 pmI’m hoping to set up a charity to raise money for research and services desperately needed. Any one wanting to help or sponsor or know someone who could be a sponsor let me know.
There are more and more people being diagnosed younger and younger we need these services so they don’t have to deal with the same “diagnose and dump” attitude some doctors have, credit given to the doctors who don’t treat FMS sufferers as hypochondriacs and who acknowledge that there is actually something wrong. Bec
I was diagnosed with Fibromyalgia in 2001 but think i have probably suffered from this since i was a child (i am 36), i had an accident at the age of 3 where i was knocked down by a motorcyle. I find that all of the medical practice i have come across have little sympathy or understand for this condition. I always come away from appointments feeling deflated and frustrated. I too suffer with extreme tiredness, although i have bouts of energy where i end up doing too much then regretting it afterwards. Most afternoons i could just sit at my desk and fall asleep! I suffer with ‘full package’ symptoms (basically everywhere). its hard when you have something which no one else can actually see!
October 8th, 2008 at 8:58 pmH.
I have just found out that I have FMS and hypermobility. I am just starting my journey through this at 24. I have had symptoms for a long time though. I almost always feel tired and it is a struggle to keep my eyes open and I often get a ticking in my eyebrow and/or upper and lower eyelids from being so tired. It is a struggle to concentrate and get the energy to do anything – which is problematic when studying at uni. I am in almost constant pain – the only thing that varies is the location. I also have the uncomfortable/awkward and embarassing at times IBS. I have often felt that I am going crazy or just being weak and exaggerating the pain. All the little things are now starting to click together and make sense, which is such a relief (if only short lived). The hardest thing about this is like Heather says – having a problem that no one else can see. You appear fine to everyone on the outside while you are wincing in pain within. The one thing that has/does help is reading the comments of others who suffer the same thing – the knowledge that you are not alone.
October 16th, 2008 at 9:12 pmIf any one knows of a doctor in NSW that specialises in Fibromyalgia please send me an email. I see so many saying their family gp has no idea, after almost 4 years undiagnosed I would like to look into this area, lots of my symptoms match..
October 30th, 2008 at 11:46 amI have been Recently diagnosed with fibromyalgia. How life changing is this condition.
Pain extreme tiredness and non ability to enjoy the things I like to do.Not being able to think straight, hold a conversation is difficult as I loose my thoughts, but I try so hard to continue my normal life, fighting the exhaustion. I have not been able to attend my work as a School Admin Manager, a very demanding job. But I am positive as I have 3 beautiful grandchildren, to love and adore, started new hobby and spend time in my garden planting vegies and flowers and watch them grow. Giving my hope and strength. I am lucky with the support of a loving family and a couple of great friends who are the family God didnt give me accepting when Im tired and washed out and in pain have the thought when we will have rest for a while.
Being Diagnosed in late August by a specialist, but under treatment by a very caring GP for weeks prior to that, I have been on predisone 10mg recently reduced to 7.5mg,
2 neofuron + 3 times a day, Exifor (antidepressant 150mg morning and 75mg evening
and 5mg normison at night to help sleep.
Yesterday was biggest achievement since becoming sick, I drove from Goulburn to Sydney Airport and return. This made me so happy!! Today I am very tired but I made it to see my son of to London for 12 months.
Hope and Be Positive. Little Achievements means so much!!
October 30th, 2008 at 12:36 pmI was diagnosed with FMS in June of this year, whilst I have always been rather on the tired side, the pain and tiredness became worse after a bad fall in my backyard. I am wondering if that triggered this off? My Dr is good but not very effective, thankfully he’s known me long enough to know I’m not being a hypochondriac, now I just wish my family would understand that too! I was on prednisone for a while, gained 10kg and set off a steroid induced diabetic reaction… so I stopped them, tried Norsporan patch last week, side effects were worse than the normal nausea I feel..so now am just taking my Efexor XR and hoping this pain will one day go away.
November 27th, 2008 at 11:32 ami was diagnosed with FMS just two days ago and the relief that there was a reason a real reason was fantastic. Although trying to explain to my family is hard as I hardly ever complain they all just thought it was in my head. I look after two two year olds (neither of them mine) and no one understands why at 4pm al I want to do is go to bed. I am tried all the time and feel unbelievable amount of guilt. I’m 20 years old and I have trouble bending over t pick up kids or pick something up off the ground. On top of everything else I have size 14H breast and it just adds to my pain. I am now looking for all the information I can, mainly because my Dr want to put me on tricyclic anti-depressants and I all ready suffer from depression so I want to avoid anything that can make me feel weird, so if anyone has information that could help me or websites you know that could please email kellie_parker_@hotmail.com. Its so great to know there are people out there.
November 30th, 2008 at 11:31 amBec i live in QLD and im 20 anything i can do please let me know my email address is with a comment above i made a few minutes ago
November 30th, 2008 at 11:52 amKellie, I have had fibromyalgia for 20yrs, starting at age 15, but doctors & specialists didn’t have a clue what was wrong. I was diagnosed with chronic fatigue syndrome at 17 by a naturopath. For years doctors didn’t know/care so I gave up on them and just struggled through life the best I could. I was officially diagnosed 4 years ago but still didn’t get much help. Through my own research I found that a low-dose of a tricyclic anti-depressant called amitryptiline (Endep) was often prescribed for chronic pain conditions such as rheumatoid arthritis & FM. (When I asked my Dr about it he thought it was a good idea – why didn’t he suggest it himself!) This has been really helpful for me, improving sleep & decreasing pain & headaches. It certainly doesn’t ‘fix’ the condition but helps. When starting I only felt ‘weird’ for a few days then normal. I would recommend that you do some research on this medication & discuss further with your Dr about whether it may be right for you.
December 13th, 2008 at 9:20 amI was diagnosed just over 3 years ago with FMS. I am 22 years old.The pain I get is all over my body nearly all the time, and it so extreme at times that I cannot move parts of my body. I have been known to fall over in the past because my legs give out.I have to agree with everyone above that being in this much pain all the time when no one can actually see it is very hard to deal with. My biggest problem at the moment is do I tell my job what is wrong? the last two places I worked I told them and ended up getting treated differently. I do not want that to happen again. Could someone tell me if I should advise my work, as the pain and tiredness has become worst in the last few months.
December 15th, 2008 at 10:40 amI have sent an individual response to Olivia but here are some links on the subject of disability and disclosure that may be helpful to anyone.
Victorian Equal Opportunity & Human Rights Commission online publication ‘Disclosing Disability in Employment – Guidelines for people with a disability and their advocates’ at the following link http://www.humanrightscommission.vic.gov.au/pdf/disclosure_employees_web.pdf
This next link takes you to an Australian article ‘Choosing Your Path. Disclosure: It’s A Personal Decision’ written for people working or studying and wondering whether to disclose or not. The document discusses a variety of issues.
http://pubsites.uws.edu.au/rdlo/disclosure/index2.htm
Also people looking for support, understanding and information can contact ARTHRITIS AUSTRALIA Freecall 1800 011 041 http://www.arthritisaustralia.com.au and find out about local support.
Here in South Australia we have a developing and improving support network that many people have commented has been of assistance to them. The contacts are:
Fibromyalgia SA Jenny Bennett : Education Services Manager
8379 5711 Freecall: 1800 011 041 Fax: 83795707
Internet: http://www.arthritissa.org.au
Email: fibromyalgia@arthritissa.org.au
SOUTHERN CHRONIC ILLNESS LINKS NETWORK / CHRONIC ILLNESS PROJECT CENTRE have been working with people experiencing chronic pain for a number of years. They have recently established a new group specifically for people with Fibromyalgia
FIBROMYALGIA AUSTRALIA (SOUTH AUSTRALIAN GATEWAY)
Contact for both organisations is:
Cathie Powell : Services Manager & Social Worker
Flinders University Post Office Box 10,
Bedford Park SA 5042
8358 6086
Internet: http://www.communitywebs.org/chronicillnesscare
Email: bpprojects@telstra.com
cathiepow@e-access.com.au
This group also have information about the management of Fibromyalgia
December 17th, 2008 at 10:42 amALLERGY AND ENVIRONMENTAL SENSITIVITY SUPPORT AND RESEARCH ASSOCIATION (AESSRA) (Head office in Victoria)
SA Contact Josie Lee : 15 Manoora Dr, Hallett Cove SA 5158
ph: 8381 9286
Internet: http://www.vicnet.net.au/~aessra
Email: acsa@ihug.com.au
I hope this information has some value to people. Here at DIRC, where this blog is located, we are very keen to link people with any disability to support and information and help develop connections. Please feel free to contact us as well as using the blog to facilitate and enhance communication between each other.
There is one thing we would ask and that is that you indicate which state in Australia (or country in the world) you are writing from so that we can attempt to tailor a useful response. Our resouces are limited and our knowledge is mainly around South Australian information but we do try to send at least one useful link in response to any disability relelated question.
I have had fibromyalgia for 12 years. I decided that if this pain was all in my head I must be insane to bring it on myself. I didn’t believe I was mad but I did a lot of study on the mind-body connection.
Candace Pert “Molecules of Emotion” is a neurophysiologist who has researched the mind-body connection [.www.candacepert.com } Roll over Descartes for science can now show that the father of modern medicine was wrong and the mind and body are intrinsically linked.
December 18th, 2008 at 8:22 amI wondered what enabled Indian fakirs to lie on a bed of nails. I discovered that pain receptors can be calmed with self hypnosis. [ http://www.mindperformance.com ]contains a list of doctors and psychologists in Australia who are trained in clinical hypnosis. Once I developed techniques to control my pain I could at least get on with many other things in my life that were once dominated by the pain.
I also found that attention to diet was essential. Foods are fuel for my body. I put clean petrol in my car so why should I put garbage fuel in my body? So many food are adulterated with unknown chemicals. E,g imported garlic is soaked in a very toxic chemical just to pass quarantine. What else are we not being told about our foods? I seek organic where possible and limit myself to a short list of foods when I have to.
I could have bought a health food store with the amount of supplements I consumed. There are different types of fibromyalgia and I found nutritional supplements that work for some may not help another. I didn’t find a magic pill.
Exercise nearly kills me but I can swim and I found paddling in the sea to be the best rejuvenator. The salt water seems to reduce swelling.
My weight has been a constant battle. I had a sleep study and found I am severly sleep disrupted. I have been told growth hormones needed for repair are only produced during deep sleep and meditation. I am learning to meditate for it seems 40 minutes of deep meditation can achieve as much repair hormones as four hours sleep.
I know I am not mad, my body has been affected by something, my brain gets just a bit foggy sometime but my mind is clear.
I don’t talk about it much as I found very few people understand and I do not need negative vibes. I have become a bit stroppy for some people try and push me around but call it “encouragement”. I know I can pace myself and if I try their faster pace I fall over. “Excuse me for being alive” Hey this is my body and although it does have a remarkable ability to heal that takes time. In this lease on life only small parts can be relaced.
Just read all of the comments and thought I would add mine – I am 27 yr old in Adelaide and was diagnosed with FMS in 2007 after an accident in 2005 took that long to be diagnosed properly. Although the specialist reckons that I have had this for ten years due to previous accidents. If anyone needs information about FMS ring arthritis foundation SA they have been fantastic help for me and they run support meetings bimonthly etc. I agree with above comments about being treated poorly with this condition it is because not many drs in SA believe this condition exists then we are treated as physchological patients. Also it is hard because of my age (I have family who dont understand what is happening to me either) and you cant see pain. Education is the key because once you understand what is wrong and why you can learn how to manage. I hope everyone else is OK and have had a good christmas and new year!
January 1st, 2009 at 10:53 pmHi I am so thankful that I have been fortunate to read everyones comments. I am a 29 year old mother of 3 boys and my husband is a recent lower leg amputee, therefore I struggle to care for my family on a daily basis while my husband is still learning to walk etc.I also work part time on the checkout at Kmart I came home totaly exausted and in excrutiating pain which is constant in my neck and lower and upper spine I also have pain which radiates throughout my body. My memory is really bad and i am always exausted and can hardly think let alone talk straight sometimes. I take 5 to 8 panadene forte a day, which I hate to do. My doctor said I have a severe case of FMS and is refering me to a Psychologist because aparently thre is new treatmentment for FMS sufferers (and suffer we do!). He said that most people with FMS have similar personality traits and obsessions and by working with a psychologist that there has been a 50 to 70 success rate of reducing the syndrome greatly. I figure if I can stop taking Panadene sometime 3 at a time and get thru a day feeling 29 8nd not 99 then i’ll be happy. We will see though. I am returning to complete Uni after defering it and would like to have a functioning brain again. Its realy good to be able to talk to FMS sufferers as most doctors, friends and family think its all in my head. Well hang in there all I can truly know understand your pain
January 6th, 2009 at 9:02 pmShelley, I think that you are currently managing a very difficult time in your life and perhaps the overwhelming nature of your overall situation is such that you haven’t realised you are entitled to, and will hopefully be able to find some additional supports, at least in the short term. Three young children, a husband recovering from major surgery and learning to cope with a major life change, and you yourself having a diagnosis of a significant illness – some people may never have to confront even one of these situations – coping with them all at once is a testament to your resilience but seeking some assistance is more than reasonable. If you live in South Australia you should approach Disability SA and request some assitance while you and your family adjust to your husband’s new situation. Their phone number for their information and intake line is 1300 786 117. If they recognise FMS (they only provide support arond some disabilities and conditons) they may offer you some ongoing support around your situation as well.
There are also some support services for people who have had an amputation mainly in terms of speaking to other people who have also had an amputation and are familiar with, and managing, the situation.
Amputees in Touch SA
PO Box 83,
Seacliff Park SA 5049
8377 0034
tonysllivan@gotalk.net.au
Hampstead Amputee Support Group
Ward 2A Dining Room, Hampstead Rehabilitation Centre,
207 – 255 Hampstead Rd,
Northfield SA 5085
8365 2832 Mobile: 0404 624 406 Ian
belltown@senet.com.au
Mareeba Rehabilitation Social Club
46a Ranelagh St,
Woodville Park SA 5011
8268 5472 (Maggie & Bill Stewart) Mob: 0403 545 847
maggbill@iprimus.com.au
Hampstead Rehabilitation Centre
January 7th, 2009 at 11:33 am207 – 255 Hampstead Rd,
Northfield SA 5085
Main Switchboard: 8222 1600 Outpatients Dept: 8222 1627 Fax: 82221608
http://www.rah.sa.gov.au/hampsted/hampsted.htm
In an earlier reply (to Peter Rock and Lesley Weekes) on this page I make mention of the South Australian supports that are available to people with FMS. These services have a very good reputation. If you live outside SA you may still find useful information and links to other services on their sites.
If we can be of any help on any of these issues or you need clarification of any infromation please contact us.
I have been reading everyones comments, and I have to agree with Shelly that its really good to have other FMS people to talk to as I can’t really talk to my friends etc about it as they do not understand what I am feeling. I know all you do though!
January 8th, 2009 at 9:21 amThank you Jane for the email you sent me with all the info regarding work. I have read through it all and decided that I do not need to say anything at the moment.
I think everyone in SA are lucky to have such a great support system for FMS. As I live in VIC, and I’m sure other people in different states are thinking the same thing, how come there are not more organisations around where people like myself can go in our own states?
I have to say reading this blog everyday has helped me alot, as I now know there are others like me out there. So thank you everyone for all your comments.
Dear Olivia,
January 8th, 2009 at 2:35 pmI have heard that the Arthritis Foundation also offers support in other states. Could people comment on whether or not they have found this to be true? In South Australia I don’t think there is a lot of government or other funding, but rather a lot of dedicated individuals working hard to build up a supportive community. I think it has taken a long time to achieve what we have here for people with FMS and I presume it is not perfect. I myself don’t have FMS, but am only aware of the situation through working for DIRC. The comments on this site have been very informative and helpful to all of us at DIRC in gaining a better understanding of the condition and an insight into the impact on individuals and families.
i have just been diagnosed with FMS and i am hoping to find support group in South Australia and i have heard that there has been 90 min release documentary called Fibromyaglia fitting the piece together and i was hoping to find out if Dirc would get copy for there libruary as i would be very interested in watching it to learn how to cope with it. Also i am reaching out to other that have this with pain management side as i already have disc injury in lower spine and take Oxycodone each day and i now have the pains of Fibromyaglia i am unable to take tramdol as i have severe reactions to it.
Jacqui
January 12th, 2009 at 12:16 amInformation that people with FMS may find of value: The ME/CFS group in South Australia have a very well resourced site that is regularly updated with the latest reseach etc. The address is http://www.sacfs.asn.au They also take a particular interest in Fibromyalgia (FMS) and keep that page on their site regularly updated. There is a lot of information that would be of value to people with FMS, not least the link to Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overview of the Canadian Consensus Document which gives an outline for GP’s, to help them correctly diagnose and treat FMS. You can read the document online, download and print it, give the web address to your GP or do all of the above if you want. There are other valuable and interesting items there as well.
January 14th, 2009 at 2:16 pmI went to the library at got all their books on FMS out to read. I have to say I am finding them very helpful, and recommend to anyone with FMS, that reading and learning as much as you can about FMS is a great help. One of the things suggested was that the best thing for someone with FMS is to know other people with it.
January 16th, 2009 at 1:22 pmI am wondering if there is anyone out there in Melbourne who has FMS that might be willing to meet up, or if anyone anywhere in Australia might find it beneficial to be able to email and talk to someone who is also affected as we all know what each other is going through, more than our partners, friends and family can ever actually understand.
I’m in Victoria too, I’m 17 and I was diagnosed with Fibromyalgia a few months ago, until that point I was diagnosed with Ankylosing Spondylitis, which may still be present.
I agree with Oliva, it’s too difficult to find support for Fibromyalgia. It is a legitimate disorder, and needs to be treated as such, especially in people who are limited as far as treatment options go. More support needs to be available for sufferers throughout Australia and the world.
January 19th, 2009 at 12:21 amDear Shae and Olivia,
January 19th, 2009 at 2:12 pmI did a quick Google search entering ‘fibromyalgia support group’ into the google search bar and choosing the ‘pages from Australia’ option. That bought back a number of links for groups in Australia which looked as though they would be of value. People are, of course, welcome to use our site as you already are or we can seek to support you in other ways. Let us know what we can do for you and we will give it our best shot.
I was ‘googling’ for something else when I came across your website and felt compelled to leave a comment.
January 27th, 2009 at 4:57 pmI was diagnosed with FMS 20 years ago – I’m only 40. I was married for two months and was involved in an industrial accident at work. For four and half years, I was misdiagnosed from ‘nervous newly wed syndrome’ to ‘ it’s all in your head’. To complicate matters, I went to phsyio where I was left on a manual traction machine. The therapist left the room and the machine jammed which caused damage to C6 and C7 (bulging discs). My symptoms are the same as other writers: aching pain all over, insominia, severe fatigue, chronic tiredness, headaches, migraines, etc. I’ve seen specialists from different fields until I found a Dr who (after the 1st visit), diagnosed FMS, referred me to arthritic specialist, changed my medical regime and gave me hope. No one understood what I was going through and 15 years later, my marriage was over. I’ve tried Endep, panadeine forte,anti inflammatories, anti depressents, sleep medication, natural therapy etc, etc.
To cut a long story short, as my injury was misdiagnosed for so long, my body is a permanent state of constant pain. My employer doesn’t know of my illness (only that I get migraines) as I fear the ridicule. As I live in rural Victoria, my resources are very limited.
I constantly remind myself that there are people who are worse off than I and consider myself lucky that I can maintain the image of being a normal health person.
Love this site and the links are brilliant.
Dear Carrie,
January 28th, 2009 at 10:27 amThank you for your feedback concerning our site. We are keen to make the site as relevant and effective as we can. In our reply to Olivia’s first post we have some links to articles about disclosure that you may find helpful.
I have just had a quick look at the Arthritis Victoria site fibromyalgia page at http://http://www.arthritisvic.org.au/pages.asp?d=5A4C5A717251477C7008060A070103 and then a quick look at the Arthritis South Australia fibromyalgia page at
http://www.arthritissa.org.au/asp/branches_fibromyalgia.aspx They both have written information about fibromyalgia but the South Australian organisation also has education sessions, support groups, Lay-Person’s guide to Making Sense of Fibromyalgia presentations, telephone advisors 5 days a week, with specialist fibromyalgia advisors one afternoon a week, etc. If the Victorian group do not offer these things could you and other Victorians affected by fibromyalgia ask them to develop some of these things, using the SA ideas as a template? Plus there is also the ME/CHRONIC FATIGUE SYNDROME SOCIETY (SA) INC site at http://www.sacfs.asn.au which has excellent information about fibromyalgia and a facebook page to help people connect and /or the SOUTHERN CHRONIC ILLNESS LINKS NETWORK / CHRONIC ILLNESS PROJECT CENTRE website at http://www.fibromyalgiaaustralia.com.au So there is no reason for other organisations to reinvent the wheel – there are many good ideas and sites to use and practical support and education just needs to be added on. We do understand that the difficulty faced by many people with disability is that living daily life is enough of a challenge and trying to fight to have necessary supports established is often too exhausting. Hopefully existing, funded organisations in other states will be able to take up the idea of fulfilling the need. In the meantime anything that we here at DIRC can do via our site we are only too happy to try.
Hi Everyone.
February 2nd, 2009 at 8:25 amCarrie, I agree with you, I love this site, I find myself checking everyday to read the new comments written.
Here is an update on myself, since writting on here last, I have told my bosses at work what is going on with my health and about FMS, and they were really supportive.
I feel so much better being honest with them and they are doing what they can to help me out, ie if having bad day I can leave work for hour to two until I feel better or if I have to have extented time off, they are ok with it.
I have started taking Tramal, which is greatly helping with my pain, and also Baclofen which is given to people with MS to help the musles relax which I take to help me sleep.
I have had to see my doctor a lot in last couple weeks, and have been advised that I have a very severe form of FM, which he thinks could mean I end up on disabilty (I’m too young for this!!). Jane could you advise how FM is seen by the government in Australia, as my doctor is from Ireland and says it is classed as dersevering of disabilty over there,however he is not sure about over here.
Hi Everyone,
February 2nd, 2009 at 12:29 pmAns gentle hugs to those who are having a bad Fibro day. I was diagnosed in 2004 after I kept going into my doctor’s all bound up like I had tendonitis all over my body (Oh! And I had Bursitis in both shoulders too), but he couldn’t figure out why I was so bound up and stiff, so he consulted with his entire medical team, and female locum who was filling in said I may have Fibromyalgia who had seen it before. Well he sent me off, and sure enough I did. Anyway my wonderful doctor left that practice and I found dud doctors in between until 18 months ago. I had deteriorated because of the lack of support from the dud doctors, and have ended up on a pension. I got severe headaches, facial spasming (right sided), Jaw ache, neck felt like I needed a brace on it, spasming right through from toes to my fingers and all four quadrants of my body. I could hardly walk. The pain was between pins and needles to severe burning and acute spiking in areas. Yes, I got the body throw over too! I was exhausted and yet could not sleep at night, but then in the middle of the day I would sleep? I have got Raynauld’s syndrome now and Complex Regional Pain Disorder as well. My doctor now has finally put me on Tramal, valium, sent me to a pain Management doctor and Neurologist, who have prescribed Baclofen, Endep and Topomax. Aparantly I was having cluster Migraines on top of the Fibro tension headaches. Now I feel I have a life. I still have bad days, but not bad months anymore. And I recommend anyone with this disorder to join the Arthritis Foundation of your state as well. They made me feel sane throughout all of this, and this year I’m going to Uni part time…so wish me luck guys! There’s alway’s light at the end of the tunnel.
Dear Olivia,
sorry not to have responded sooner. It has taken me a little while to track down information that I hope you will find helpful. As far as I can see there is nothing on the Centrelink site that says “Here is a list of conditions that we say make you eligible fo the Disability Support Pension”. However there is a suggestion that they are more interested in how your condition affects your activities of daily living with regard to your ability to work. see this link.
http://www.centrelink.gov.au/internet/internet.nsf/payments/qual_how_dsp.htm Information on who can get the Disability Support Pension
http://www.centrelink.gov.au/internet/internet.nsf/forms/claim_forms_dsp.htm Information on how to go about claiming the Disability Support Pension, links to the necessary forms etc.
February 3rd, 2009 at 1:27 pmIf your doctor understands the impact your illness has on your life and work then he can reflect and explain that on the Centrelink form and that will make the process much easier and more streamlined. (Not that it will necessarily be easy or quick.) From personal experience many years ago when applying for the pension for my son the doctor forgot to tick two boxes so the forms had to come back to us and then on to him which delayed the whole process. Now before filling in the form there is an ‘intention to claim’ form to try to improve that situation http://www.centrelink.gov.au/internet/internet.nsf/forms/claim_forms_dsp.htm#intent
Some of the information on that page says “Intent to Claim: You can register an intent to claim for Disability Support Pension. This will ensure you are paid from the earliest possible date. Once you have registered your intent to claim, a Centrelink Customer Service Officer will contact you within 2 days to assist you with your claim and send you a claim form. You can also register an intent to claim by visiting any Centrelink Customer Service Centre, or by telephoning us on 13 2717. If you cannot telephone us yourself, someone else can telephone Centrelink for you, so you can register your intent to claim as soon as possible.”
Olivia, we appreciate the positive feedback and comments that you have made. It is very exciting to see a community emerging based on communication and mutual support. Glad your decision to disclose went well. Hopefully many employers will take a similar approach in the future so that eventually all employers see that it is to their benefit to allow employees to be honest in the knowledge they will be treated with common courtesy and understanding.
Dear Trudy,
February 3rd, 2009 at 1:44 pmGlad you have finally received some help. Perhaps your doctor might still benefit from looking at the information contained in the document Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overview of the Canadian Consensus Document which is available on line at:
http://sacfs.asn.au/download/consensus_overview_fms.pdf
Hoping you enjoy your uni studies and looking forward to reading about your triumphs.
Thanks Jane,
February 8th, 2009 at 7:12 amI’m actually having a “bad day”! Had to get the locum in last night because for the first time in a very long time, I ended up getting a massive migraine. Heat related the doctor presumed (me too!), and not drinking enough I must admit on these 43 to 46 degree days. The Topomax didn’t even touch the sides. But I’ll know I’ll be better by tomorrow. This is such a great community. Keep positive everyone!
Hi – like ‘undiagnosed’ (Oct 30, 2008) I live in NSW. I have suffered with my symptoms now for over 20 years – which means I was being investigated in the mid to late eighties. After being to new doctors over and over and being tested for everything and tried on a number of treatments all to no avail I decided that I was just better off emotionally to get on with my life and ignore the constant pain and fatigue that was my reality (some days I manage this much better than others!). However – I have come to realise that there has been much research in the last 20 years and perhaps it is time for me to go to see a doctor again. I just want to start with a good doctor as I can’t bear the thought of again being told it is in my head, or that if you just do these exercises it will make things better. Did you ever find a good doctor ‘undiagnosed’ or can anyone suggest an expert in this field in NSW.
February 11th, 2009 at 12:09 pmAlso – interested to know if any of the other readers suffer constant thirst – apparently that is all in my head too but I suspect it is linked in with the body’s faulty feedback mechanisms.
Dear Nicola, Arthritis SA provide support, telephone counselling, information and contacts for GP’s and medical specialists for people with fibromyalgia. I know the NSW group have some information on their web site, have Warm Water Exercise & Tai Chi Classes and may offer other services. Their contact details are:
February 11th, 2009 at 3:30 pmName: Arthritis NSW
Address: Locked Bag 16, Post Office North Parramatta NSW 2151 Australia
Van Peters Cottage, 13 Harold Street, North Parramatta NSW 2151 Australia
Phone: Freecall 1800 011 041 (NSW residents only – outside NSW please call 02 9683 1622)
Fax: 02 9683 1633
Email: info@arthritisnsw.org.au
Web address: http://www.arthritisnsw.org.au/index.html
If you can’t find a doctor with experience of fibromyalgia you might find a doctor with compassion, intelligence and an open mind could find the following would help them equip themselves to assist you: the PDF document is titled: Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overview of the Canadian Consensus Document which is available on line at:
http://sacfs.asn.au/download/consensus_overview_fms.pdf
You might like to give an indication of which area in NSW you live in and hopefully some one will be able to reccomend a good doctor.
Jane
Hi everyone, Ive got it too! Id like to tell Nicola just above me that I also have an unbelieveable thirst. I drink so many litres of water a day that I am seriously worried about the effect it will have on my kidneys. I have almost a phobia of leaving home without a massive bottle of water. I have 3 kids and have just weaned my youngest(breast feeding) and the pain has intensified so much since her last feed that I am considering taking it back up again.( she is 19 months old and if I didnt do it now Im going to be feeding her till she’s 21!) I find that my symptoms disappear when I am pregnant, and are only mild while breast feeding, has anyone else found this? I am doing the best I can but it is so hard chasing a toddler when I cant move or keep my eyes open in the daylight hours. I also have post natal depression on top of my regular FMS depression so Im a whole bucket of fun right now! I am taking tramadol which helps with the pain and strangely also a little with the depression which is good because I have reverse effect with anti-depressants( I go from down to suicidal in a matter of hours on them) I live in a very small town in country NSW and nobody here seems to understand. There are no support systems you can rely on here, they either dont exsist or the people running them have no regard for patient confidentiality (yes Ive had the whole town discussing my medical history). I am dreading returning to the level of pain that I was in before I fell pregnant. I could barely move at all and I had lost so much weight that my husband thought I was going to die.( I am 5′ 5″ and was 42kg) I am dropping weight again now and I find myself trying to hide it from him along with the pain and exhaustion because I think it is harder to watch than it is to live with. I am so glad that I stumbled onto this site tonight, I dont feel so alone now.
March 13th, 2009 at 9:29 pmCarolyn replying on behalf of Jane
Dear Sheridan,while looking to find some support for you ‘nearer to home’ I sent an email to the NSW ME/CFS society
Here is the reply I have just received:
Hi Jane,
Thank-you for your enquiry.
You are more than welcome to refer any people with ME/CFS or FM living in NSW to our Society.
We do encourage people to become members of the ME/CFS Society of NSW Inc however this is not essential to access our services.
Kind regards,
Kerry Hill
Social Welfare Officer
MECFS Society of NSW Inc
On their website it says that full membership is $40 and concession is $20. I know many people in SA have found a connection with our state’s ME/CFS group an invaluable source of information and support so I can only hope you find a similar welcome in NSW. We are of course only too willing to have you and all others interested in using our site to communicate and share ideas continue to do so. We would appreciate it if any contributors to the site came back to us with feedback about your experiences because that would be of benefit to us and others.
March 20th, 2009 at 10:08 amThe Arthritis NSW group also have information and services for people with Fibromyalgia.
Although I am writing the majority of the replies to the Fibromyalgia discussion I discuss the ideas with my colleagues Carolyn and Doug and pick their brains before typing the comments. We hope that the ideas prove useful and look forward to continued discussion.
I am a 42 year old working mum, and now living in our blended family of 5 boys plus hubby last 10 months. 9 months ago I suffererd a bout of pneumonia, and a few weeks into it an ongoing headache , debilitating muscle pain and weakness and extreme exhaustion which has not gone away. Chest pain, and breathing difficulties compound this as does the bladder function. On a good day, I can function, albeit with pain. After numerous visits to the local GP who inferred this was all in my head and I was depressed (as you would be with no acknowledgement or support for this), saw neurologist who thought I should see a rheumatologist. Today I was diagnosed at Flinders Hospital with fibromyalgia. I sat there looking at my specialist with joy. He told me it was not all in my head , and it was not valid for others to tell me to get over my neurosis or mood swings, that it was actually something that was very REAL. I finally have a diagnosis. I have fibromyalgia.
March 31st, 2009 at 2:32 pmFinally, I can try and do something about this, to learn to manage my pain, and to acknowledge that this is an actual disability that I can learn to live with.
My employer, I work for the public service has told me that I have had an excessive amount of unplanned leave and this causes me stress when I feel compelled to go into work, I am not sure of my standing with fibromyalgia and whether on a really bad day, I have to go into work and endure the pain and suffering and dragging the legs which cause me grief. Stairs are another issue altogether, the weakness, fatigue and the pain on walking leads me to avoid this.
I am so thankful there is so much support out there, and reading the comments from fellow sufferers led me to shed a few tears. I understand you. That is me.
My only worry now is my employer, who calls themselves an equal opportunity employer that embraces diversity, I fear the repercussions on whether or not I advise them of my condition so I am not compelled to go into work when I am having a really bad day.
To all , I thank you for your comments, and to this wonderful support service, to my diagnosing doctor, I feel such incredible thanks, for the time it has taken to diagnose, and to see this person in one sitting , I can move forward and onward with my life. Blessings to all
Dear Julie,
you don’t say which state you live in so it is not possible for me to send specific links to any available services in your area. We have been advised people looking for support, understanding and information can contact ARTHRITIS AUSTRALIA for information about support in their state Freecall 1800 011 041
In an earlier reply to another contributor I included some links to two sites on the subject of disclosure. These are from the Victorian Equal Opportunity and Human Rights Commission online publication ‘Disclosing Disability in Employment – Guidelines for people with a disability and their advocates’ and an article, also written from an Australian perspective, ‘Choosing Your Path. Disclosure: It’s a Personal Decision’ written for people working or studying and wondering whether to disclose or not.
April 7th, 2009 at 9:35 amThe web addresses for these three sites are:
http://www.arthritisaustralia.com.au
http://www.humanrightscommission.vic.gov.au/pdf/disclosure_employees_web.pdf
http://pubsites.uws.edu.au/ndco/disclosure/index.htm
Maybe of interest to some but I have effectively beat Fibromylagia. I had to do my own research though. But at least I had a doctor who finally nailed it.
The latest research suggests that it is caused due to a combination of factors including prolonged exposure to pain and lack of sleep. The upshot is that brain cells in certain parts of the brain do not get regenerated fast enough. They are not dying per se but they are attrifying. This causes the body to become hyper sensitive to pain and explains why it is not just joint pain but muscle pain as well.
This is the abriviated story and you should consult your doctor before trying any of this.
At the same time a discovery about anti-depressant medication showed that the theory of function which was assumed about serotonin, over the past 20 or so years, was entirely wrong. Most of the research into anti-depressant chemicals focused on brain chemical balance but that is not the case evidently. SSRIs work by accelerating the brain’s ability to regenerate brain cells. The general SSRI function inhibits the reuptake of serotonin and effectively bathes the brain in it.
The big anomaly that no-one could explain about SSRI medications over the past 20 years was that the effect on Serotonin in the brain was instant when taking it. And yet the anti-depressant effects were not seen for up to two weeks after commencement. The reason is that the depression is actually caused by a similar degradation of brain cell regeneration. An SSRI is not a pain killer, yet many people report that they feel less chronic pain when taking them.
The trick seems to be to forget about the anti-depressant notion of SSRIs. Take them for the ability to regenerate wasting brain cells. You will have to find an SSRI you can live with however since all of them have certain side effects. Most notably on the libido.
Problem # 2. And this has yet to be proven related but I include it here for completeness…
Vitamin D deficiency is endemic in Australia. This seems counter intuitive since Australia is generally a sunny country and vitamin D is generated through exposure to UVb from the sun. However, it seems that Australians have generally taken the “Slip Slop Slap” message to heart and cover themselves liberally with 30+ sunblock whenever they go outside. You can’t even buy 15+ sunblock anymore. The practical upshot is that many people are dangerously low on vitamin D.
But there’s a catch. Vitamin D is toxic in large amounts. You MUST be tested to make sure. Most doctors will dismiss you because they’re just not up to speed on this stuff. Even though it’s been known for the past 10 years. You need to know your D3 levels in advance before shoveling down lots of vitamin D supplement.
The other chemical you need to boost in your body is glycogen. There’s only one way to do this. Exercise. You’ve all heard the mantra coming from your doctors by now no doubt. But how do you exercise when you can’t even move?
OK, So here’s the anecdote:
I spent all of 2008 suffering Fibromyalgia with a story similar to those presented here. I had no idea what it was. I ended up in hospital and told to just go home. You know the story. I had a doctor that was less than helpful and it wasn’t until I finally changed doctors and found one more on-the-ball that things started to happen. We ruled out all manner of ailments until we finally realized that the symptom set matched Fibromylagia.
Armed with the above information I started taking zoloft. Not the most in-favor SSRI medication these days but I knew I could live with it. I also started shoveling down D3 and cod-liver oil but the hand full. After being tested of course. Cod-liver oil is good because it contains D3, A and Omega3. I started with a heavy dose of zoloft to begin with then scaled it back over the first week to something less than a standard dose by breaking the tablets in half. Within two weeks, I was moving again. Then it was time for some exercise. I bought a bicycle.
I could still hardly walk because of the pain in my feet but I COULD ride a bike. Barely at first. Once I could ride around the block I ventured out further till I was riding round the district. That was proof of concept so I bought a better bike. All up I went from hobbling with a walking stick to riding 30Ks a day in around a month. My body started generating it’s own cocktail of chemicals and the process accelerated.
To cut a long story short, today I cycled 67Ks in just over 2 hours riding time. It’s been 3 months. Including 3 weeks where my original bike was stolen and I had to scrape the money together to buy a new one.
There are still problems but they are mitigated by about 80%. And most of the muscle pain I feel now I can write off as having worked too hard. I have many other health problems. Relating to a very rare cancer which was removed 10 years ago. And damage to my neck from a motor vehicle accident many years before that. I am never pain free. But to be honest, the most severe pain at the moment is from sitting in the saddle too long. Quite literally a pain in the a*s.
For the record. I don’t necessarily advocate getting a bicycle. What ever works for you. But that’s what has worked for me.
One final note. The research also suggests that Fibromyalgia is almost one and the same thing as Chronic Fatigue Syndrome. The distinction seems to be that in the case of CFS, it will run it’s course in about 2 years. Fibromyalgia however is permanent. So I will have to keep working at this for the rest of my life. Having said that, chances are further research is just around the corner and will reveal a better diagnosis. But if you’re like me, you can’t wait that long.
Hope this helps.
April 20th, 2009 at 9:14 pmHI Julie,. I was just reading what you wrote, and am glad that you feel better now that you know what illness you have. I agree with what you wrote about work, and I too was really afraid to tell my boss. After a few months of stressing over it, i did tell them, as my condition is longer in the stage where I can hide it (I now have to use a walking stick or crutches to get around, my FMS is so bad is can hardly walk anymore). My boss was really understanding, and was completely fine with the amount of time I have taken off and still need to (no you can’t go to work when its really bad, theres no point, because it is to hard to function in that much pain), now that he knows what is wrong, he understands that I can’t always come in, your boss may not know why your taking all this time off so may be unhapy about it.
April 21st, 2009 at 8:26 amIn taking about work, I have a little good news about my job, my FMS has come to the point, where my dr doesn’t know what to dfo anymore, he has tryed all the meds he can (currently taking tramadol up to 3×100mg pills a day and not working) so i have been referred to the pain clinic of melbourne. Well as im sure you can tell, im in a lot of pain all the time adn coming into the city for work everyday is really taking its toll on my, as im sure all of you can understand!!, so I asked my boss if I could work from home, im lucky because I work in Travel so may able to, anyway my boss is really supportive of this, so we are currently waiting on everything being set up so we are bale to do this, so i should be working from home in the next few weeks. yay!!. something good has finially come out of being this ill. Thinking of all of you and hope for you all have many “Good Days” ahead.
Hi Olivia, I am so pleased you have such a supportive boss and have the ability to work from home, that will alleviate so much in the way of travel for you. I am at the point some days I feel a walking stick will be easier, i cant believe the lack of support from my GP, who is still waiting on the report from the rheumatologist who diagnosed me. He said I look better now, and must be healed from a myalgia! my husband and I sat there in total disbelief, this is the same clinic who kept telling me its all in my head, that i am depressed – tell me one person who out of sheer frustration and pain does not get down when ridiculed! My GP stated that when i feel sick i need to go in on the days I dont go to work for a separate medical certificate, at $58 a pop upfront for a 5 minute visit – to get there out of bed when i am in excruciating agony and pain, i prefer to go into work and suffer the consequences. I have learnt that when fatigued i must REST, or the next day the perpetual headache is a semi trailer going full pelt and i need to crawl to go to the toilet! It now takes me 2 hours to get going in the morning to the point i can walk without falling down all over the place to go to work. The pain relief clinic sounds good, i just need to find a GP with my specialist report that will be able to help me. I am hesitant in the use of anti depressents albeit they rejuvenate the attrition of the brain cells. . I am learning that I cannot let this define me, I am intending to live and be happy and learn the triggers for the really BAD days which seem to be coming on so much more frequent. I send blessings of love, health and an abundance of good days out to you Olivia and to all of fybromyalgia sufferers. I dont feel so alone anymore, My thoughts with you all.
April 24th, 2009 at 10:37 amps. I live in Adelaide South Australia in the southern suburbs Happy Valley, PLEASE does anyone mind recommending me a real doctor that recognises this condition, eternally will be so grateful. have a healthy good day guys.
April 24th, 2009 at 10:51 amDear Julie, I hope this information is useful to you and you find the medical support and expertise you are entitled to.
the four following organisations offer support to people in SA with fibromyalgia. I am hoping at least one of them will be able to suggest a doctor who will know what they are doing. I’m sending the names of the organisations with their contact details.
If you can’t find a doctor with experience of fibromyalgia you might find a doctor with compassion, intelligence and an open mind. They could find the following would help them to educate themselves to assist you: the PDF document is titled: Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overview of the Canadian Consensus Document which is available on line at:
http://sacfs.asn.au/download/consensus_overview_fms.pdf
BRIDGES AND PATHWAYS INSTITUTE INC
Cathie Powell 8358 6068
Internet: http://www.communitywebs.org/chronicillnesscare
http://www.fibromyalgiaaustralia.com.au
Email: bpprojects@telstra.com
cathiepow@e-access.com.au
Mon – Fri 10am – 3.00pm
Cathie, on the same phone number, is also involved in:
FIBROMYALGIA AUSTRALIA (SOUTH AUSTRALIAN GATEWAY)
Cathie Powell : National Project Manager
8358 6086
Internet: http://www.fibromyalgiaaustralia.com.au
Email: fibromyalgia.australia@gmail.com
FIBROMYALGIA SA (part of the Arthritis Foundation of SA)
Jenny Bennett : Education Services Manager
8379 5711 Freecall: 1800 011 041 Fax: 83795707
Internet: http://www.arthritissa.org.au
Email: fibromyalgia@arthritissa.org.au
Mon – Fri 9am – 5pm
ME/CHRONIC FATIGUE SYNDROME SOCIETY (SA) INC (excellent website)
April 27th, 2009 at 12:15 pmInformation & Support Line: 8410 8930 Admin: 8410 8929 Fax: 84108931
Internet: http://www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
Wed 10am – 3pm. May vary depending on availability of volunteers
blessings and many many thanks Jane.
April 27th, 2009 at 12:44 pmThe following comment was forwarded to us by Pauline:
I’ve had fibromyalgia for 17 years, which became very severe and painful about four years ago. My back was like a board and I could only sleep on my back. My arms often became inflamed and I was very weak. Putting on clothes was painful, cutting up vegetables, washing up all became very painful and tiring and I felt very ill. I started a careful routine, something I call my back care program, which was initiated by my physio. This was the basics of it: I had a Feldenkrais treatment every two weeks with my physio, went to a Feldenkrais class regularly, had massage once a fortnight, walked once a day, rested when ever I was fatigued, took no medication except Panadol when desperate and swam once a week. It has been enormously difficult to manage, but after four years I am free of pain and hugely better. This last summer has been the best summer for many years. As the heat increased my muscles softened and on many occasions I’ve had a sense of well-being and connection, something I can barely remember. Despite the fact it is difficult to manage it has been really worth the struggle, there have been no roadmaps I launched into the ether and trusted that it would work. However this is only a partial recovery so far. I still have bad days when I’ve done too much, a stiff neck, aching shoulders, slight headaches, but I find I can do something about them. I do hope this helps someone.
Pauline
May 27th, 2009 at 9:27 amI entered “feels like muscles are attrifying” in my browser and this was one of the websites I was directed to. Reading the information and the comments, I’m right there with all of you. I am in the US and most doctors kind of lump everything together because it is not in their expertise and so much is still unknown. I doctor with gastroenterologist for IBS, dermatologist for skin conditions, MD for sinusitus, endocrinologist for thyroid, rheumatologist for polymyalgia rheumaticia (chronic joint inflammation), a massage therapist, and finallyI am getting some relief from a compassionate chiropractor & nutritionist.
May 27th, 2009 at 4:46 pmHi, i am married,39, 6 kids,live on the gold coast, qld and just been diagnosed in april with fibromyalgia. I am lucky in a way, my mother was diagnosed 4 years ago with fibromyalgia & polymyalgia rheumatica. She and i discussed various symptoms and i went to my gp (an absolute gem) and asked- who do i see for a diagnoses? He wrote the referral and i ended up at her rheumatologist who spent five mins on physical exam and said ” you are NOT going mad, you are suffering from a disease. it won’t kill you but on some days you may feel it’s going to, if you feel like that ring me asap for further info.”He believes the combination of broken ankle in oct and relapse of glandular fever in jan are what triggered the most violent symptoms: some i have had for three years or more, just didn’t pay much heed as too busy with all the kids. He is fabulous. Knowing for certain it’s not in my head is FABULOUS, dealing with it isn’t. My teenagers & hubby cant understand why mum can’t even carry the washing basket to the line, or is exhausted after her casual work, (two to three hour shifts.)’how can you be tired if you’re in bed all day? you only washed up, whats wrong with you?’ A twenty minute round trip for sport and work pickups and dropoffs leaves me shattered! Inability to work long hours hits the hip pocket too. Have had to take unpaid leave from main job at supermarket as cant work on registers, grocery dept.(packing and lifting) or nightfill,( my hands keep freezing like claws) Other job easier, selling raffle tickets for six hours a week over two or three days i find manageable. (some days even that’s a struggle!) It was suggested i try warm water swimming ,which helps the joints,and it does, but i wish i could stop the constant “burning” in my hands and shoulder joints.I have food and drug allergies and sensitivities + a kidney stone of respectable proportions so a lot of the usual drugs are contraindicated for me. Sucks a lot i tell you! panadol osteo can only do so much.Most mornings i find i’m in my jammies till lunch as i simply dont have the oomph to get dressed. I’m trying to find out if there is a group on the coast who can give me more practical type tips, doc’s great but he doesn’t have it himself and as he admits most of them argue over it too.Thanks for any help or info, Juanita.
June 5th, 2009 at 10:47 amDear Juanita
June 5th, 2009 at 12:05 pmThere is a support network in Queensland that covers fibromyalgia (the ME/CFS/FM Support Association Qld Inc)
The contact nos. are (07) 4632 8173 and (07) 4659 5239.
The web-site is at http://www.users.bigpond.com/mefmtba/index.html
I hope they will be able to assist.
Hi fellow fibromyalgia sufferer’s
June 6th, 2009 at 7:08 pmWhat a great website this is. After being diagnosed just recently I have been in constant search for info, etc. as you can all relate to.
My doctor isn’t sure how long I have had it for but when I look back I feel it as been at least 15yrs with symptoms worsening over the last 10. I’m 47 I have worked part-time over the last 20 yrs inbetween having our children who are now 19 & 22. In the last 18 mths I have started an apprenticeship, in the field I have wanted to work in since
I was 15, which I was stoked about especially at my age.
As a child I had reoccurant chest/ear infections, whooping cough & the occassional soar on my face diagnosed as school sore ,(so we thought) I had a bad car accident in 1982 wich left me with bad whiplash & never treated. I always felt exhausted and the days I would have energy I work like a crazy woman and pay for it the next day. 1985 after having another sore on my face, that was then diagnosed as “shingle”s mmm interesting.. An operation on my nose during this same year because of constant sore throats due to nasal drip, I never seemed to get back to full health after that, constant sweeting generally unwell.after tests results came back ,it was glandular fever. 3 months later after still not feeling a 100 % tests results revealed
( 2 positives glandularfever “still” & yep pregnancy) oh wow I gess when your younger you dont really wonder about yr health to a certain extent, but now when I look back. I cant; help but wonder what contributing factors all of this has had on my health now.During this time I lost my precious father to a sudden heart attack at the age of 53, it was a terrible terrible shock……………..
After a time my health wasnt to bad other then being tired and fatigued,I thought it was mother hood and life in general.Them about 7yrs ago I had that sore on my face again , yep shingles. Getting more and more tired and lethargic with reoccuring ear/sinus Infetions and continuos antibiotic use.
As a family we went through a business failure in the process loosing our home etc. In the last 15 months I’ve had shingles 3 times and it seems that everytime I get an infection/ shingles my fibro seems to get worse and worse. I was supposed to have my gallbladder out 2 wks ago but wasn’t well enough to go under anasthetic, so i have been off work for that time and will be until I go back in to have them done on the 16th June. My concern is my job of course, and that is ok at this stage.I just wish that fibro was accepted more . I ache all over , constant facial pain, headache , I could sleep the day away mmmm the list goes on. If we wore a cast from head to toe I guess people would understend.or at least wonder. I have found a gp/natropath who has been giving me b12 and vitamin c injections wich pics me up for sometimes 1-2 days or just a few hours, he also suggested cod liver oil ,wich someone commented earleir about and how it has helped them .I think I’ll buy a carton of it : ). No seriously it is horrible and I’m thankfull I have found others who understand exactly.
Looking back
Could I have had this for longer?
Have all my illnesses over the years contributed?
How much has stress contributed?
Did I grieve for my dad ?
The list goes on……
Thankyou all again & thankyou for taking the time to read this.
Hi I am a 38 year old single mum of 5 (2 mine and three foster children). I was diagnosed 10 years ago with fibromyalgia, but I have only come to terms with it just recently. Mainly due to no one believing what pain I am really in. I have not joined any support groups. I suffer very bad pain all over, IBS, type 2 insulin dependent diabetes, depression, I am constantly tired and cannot sleep at night. I have alot of trouble driving because of the tiredness. I am on Cymbalta which makes me feel like I have the shivers all the time. I have to handle alot of stress at home which doesn’t help at all. It is really good to hear from other sufferers, so I am not the only one with it.
June 16th, 2009 at 5:14 pmHi carolyn, huge thanks. Did not realise it was that close to my mum’s place. Fab! Extra excuse to pay a visit, Ha Ha. Was reading Jan, june 6th and apart from the shingles ,several major ilnesses the same. How the hell did we function and raise our kids??? Guess we are a bit more resilient than we think. My illnesses started from around twelve, including 6 mths recovery from whooping cough, Test + to varicella but never had spots,( will watch for shingles now). Post natal (9yrs) and “ordinary” depression for total 14 yrs. Gland fever at 15, hit by car and pressure injury to my leg, no furthur probs with that tho,and the lists go on. At least i haven’t had Bubonic Plague yet! Are they sure its defunct? Four broken bones including pelvis and scafoid and six challenging children. Yes ma’am you are anaemic, oh and pregnant too, congrats. Oh what we put our bodies thru.No gall bladder, appendix, waiting for something else to go now,kids laying betting odds now.I had 4 fab pregnancies where i was told i ‘glowed’, two with probs but physically”I” felt fabulous,no aches, pains or twinges- Heaven! Mum & i thought post nasal drip was normal, both had for years! Does Jan know about the antiviral drug you can get for shingles, you need to take asap when you feel pain/itch start. (Hubby had it twice and swears by it, swears a lot but that’s another story, ha ha) Have threatened to DIY my own cast to have a more visible ‘injury’. Maybe we could wear big badges or ribbons saying “Fibromyalgia Sufferer, Make way b4 we fall over you from complete exhaustion.” Due to my intolerences and allergies i’ve tried diet and vitamins to help. Im the healthiest exhausted woman i’ve ever been! Wish i was game to try tramal, seems to help heaps of people but my doc nearly had a fit when i asked, due to kidney stones etc. Are there other drugs that don’t annoy k stones? He’s looking for me but thought maybe someone may know? Well, thats my ramble done for the evening. Taken over an hour to type this but at least the kids can’t fault the spelling, hehe.
June 18th, 2009 at 7:44 pmHi Everyone
June 25th, 2009 at 12:53 pmI was just reading over the stories that have arrived since I wrote here last, and I have to say that I completely agree with juanita, that perhaps we should wear a sign or cast so people actually know there is something wrong! I am stick of people thinking just because we look fine means we should feel good too.
Well nothing much has changed for me since I was here last. I know I said that I was going to be working from home soon however that has been delayed even more! its been 4 months since it was approved however waiting on some phone system that actualy allows me to stay home. It means that I am struggling coming in to work everyday though at the moment which includes driving 2 suburdbs to train station then taking a train for 35 minutes and then walking 3 blocks!
I just found out i have 4 stomach ulcers, and according to the doc one is so big that he is shocked as I am only 23! They dont know why yet but it could have a lot to do with all the diff meds I take.
I do have to say that if you can take it, that Tramadol is the only thing that gives me any relief at all these days. however even that doesnt work on the really bad days. I am waiting to get into the Pain Clinic here at Royal Melbourne hositpal, I am on the waiting list. Hope that helps some what.
Can I ask all you mothers out there, did you find that when you were pregent that your systoms got worse? I have a 9 yr old step son whom I love to pieces however am considering having one of my own also, but my partner is overly worried that having a child could make the pain even worse, and it will be hard to raise a child when i am having a bad pain day. any comments would be great on this. good or bad, because I want to know the truth as I am not going to make my life any harder than it already is.
Hope everyone is having a good day today and that you are all getting some relief from you pain. thinking of you all ….
hello
June 28th, 2009 at 8:41 pmjust responding to jaunita.Like the bit about the healthiest exhausted woman around, we’re hearin ya.
Yes I have the shingles drug perscriptionon on hand all the time. Thankfully I have an exellant GP who is very understanding and tries to minimise every little infetion/ bug that comes my way.
Thankyou though.
Like I said last time its so nice to here of others out there and we’re not alone.
Take care all of you.
Hi everyone, I have just found this great site. I have had fibromyalgia for 10-15 years, if not longer. I have a wonderful supportive partner and 3 adult daughters as well as 3 grandchildren. I have tried most of the drugs available for FM and now my Dr has left the practice. I saw a new Dr today and after a 5 minute consult I came out very disappointed and angry. She gave me a script for Panadiene Forte whereas I was on a stonger drug than that before. I also suffer badly with Restless Legs Syndrome and I have been taking Clonazapam but lately have had to increase the dose to 2 x 0.05mcgs at night. She wrote on the new script to take 1/2 tablet at night!!!! Would not help me with Temazapam either.
June 29th, 2009 at 4:33 pmI live on the NSW/QLD border and was hoping that someone here knows of any good Drs that understand this unbearable pain. I have been to pain clinics, rhuemmys etc, etc. PLEASE can someone help me????
Take care
Hello Gayl
July 1st, 2009 at 10:00 amThe ME/CFS Society of NSW lists a Support Group on the Tweed Coast – perhaps someone in head office or in the support group will know of a doctor – this is the link to the page listing support groups http://www.me-cfs.org.au/node/10
The contact details for the Society and their open hours are listed on this page.
Hope this might lead to something positive for you.
Hi Olivia, in regards to pregnancy, “I” never felt better! After the births tho the usual baby blues and bigger dose of depression with some of the kids.(6) I found i had about three months of good days then it slipped back slowly, the quicker i weaned the quicker my symptoms returned. Our last two children i fed for eighteen months+ and it held off a lot of symptoms, but this is with benefit of hind sight as wasn’t diagnosed till this year.A lot of drugs we can take are not good for developing babies, so may have to stop them. If hubby wants to support, do it. If he’s worried,maybe delay til symptoms and ulcers settle. If you get pregnant now he might feel ‘trapped’(not sure if this is the right word) into a caring role he doesn’t feel confident with or off. He will have a baby and a wife to care for, and thats a pretty big call .You will also suffer heaps having pre existing ulcers. You tend to get bad heartburn whilst pregnant towards the end of it, due to baby filling tummy and no more room to go anywhere. That said, i had six children, i had joint pain i thought was due to preg hormones and a general tiredness again i thought was the pregnacy. Yes it was good, bad and ugly but i got through it with family support and occasional child care for the older kids till they hit school. Some days it was bloody hard! Your ulcers could be caused by a heliobacterium, treated by specific antibiotics. I had those at 12yo, since treated and no more probs. Best of luck with whatever you decide to do, you are young and you have a bit of time b4 that ol biological clock starts to tick loudly. Hope all goes well.
July 3rd, 2009 at 8:22 am.
Hi Juanita
July 13th, 2009 at 11:38 amThank you for your feedback. I know have a lot to think about lol. long way off though I think. I have been having a few better days the last few weeks, so thought I would brave it and goa for an hour walk yesterday with my family taking the dogs. I also had a short go on my sons bike and I’l tell you what I am paying for it today!!
And people wonder why guys like us with FM find it hard to exercise.
Any way no news from me, except that I am still waiting to start working from home. Starting to lose hope at the moment, but I know it will happen eventually.
Well I hope you are all having good days.
Thinking of you..take care..Liv
Hello, just wanted to let people know about a Feldenkrais class held on Thursday mornings 10 till 11 at the RSL Hall in Mary St Unley. Its a bit cold in winter so wrap up warm. Feldenkrais has been enormously helpful in helping me recover from fibromyalgia. I have been going to these classes for about 4 years and for example when I first went I couldn’t even lift my arms above my head, now I can stretch them up and over and do it easily. It’s a really friendly supportive class with maybe 6 to 10 people with an excellent teacher and has been subsidised by Unley Council so only costs $5.00 a time. I can highly recommend this class. Pauline Muir.
July 22nd, 2009 at 8:04 pmHi all, just found this website. Thought i would share some info. I was formally diagnosed in 2003, but i believe i have had FMS since i was 18yrs old. Through the years i have tried many things…all of them help for a time, but then all relief ends. I take ibuprofen, vit D, antihistomines and magnesium on a daily basis and found these to be most effective. I work within the disability community and find working helps my mental state. I was dadnosed with severe fibromyalgia, and back in 2003 I could not even walk. Today with experimentation, I can live a full life. Just had a setbackback though…swine flu. This flu blows out all symptoms, I am getting better now though, thankfully. So keep up your daily regime and it will pass. Caroline
July 23rd, 2009 at 11:30 amHello to all, I was diagnosed with fibro in 2003 yet like most others think had it a lot longer than that. Can remember pregnancies being great and mostly symptom free although suffered major backpain last trimester. Thought I would share some of my coping skills with you to help avoid major problems. Found airconditioners to be source of bronchial and pneumonia-or like infections. Medications after time will definitely make you ache more although did find tramal helped with pain levels but for those of us that suffer gastrointestinal unfortunately can’t take them. Diet is essential if unable to exercise, source out organic foods including quality water, especially mushrooms, yakult milk and variety of nuts I’m sure these items helped save my life! Dieticians can help make 7 day plan to include coverage of all vitamins and minerals needed for balance. Remember our bodies are hypersensitive therefore do not need extra stimulus from any source including conflict. If nobody believes you so what believe in yourself. You know what your dealing with and act accordingly even if you do appear a bit crazy at times. For me personally it usually takes a few weeks per season except winter to adjust fully with minor ailments. I had successfully lived without IBD and major gastro problems for 7 years until centrelink sent me on the merry-go-round a year ago and will now take a while to correct. If your mental status can’t deal with it, don’t deal with it, retreat, unless of course it can’t be avoided and in these times pay particular attention to relaxation techniques. Avoid chemicals at all costs. Slow Full-bodied scratch massage has left me pain-free for half hour and is a very pleasant feeling indeed. Listen to your body. When you start feeling anxious, fatiqued teary-eyed or angry it’s time to rest. Work on 1 thing at a time and definitely important things first-It is a harsh road/jigsaw puzzle for us all but information is power. Above all keep your sense of humour and laugh a lot if nothing else it does help your appreciation of how we truly value life now. It is surprising me how many are starting to suffer this infliction. Environment will play a big role in the solution, with air/water/stress/pollution, lack of vitamin D,being a large factor in toxicity levels. Remember that G.P’s fix problems they can see and can’t accept themselves that they are dealing with something at the moment that has no cure. My suggestion source out a good physician. Starting to see connections in other families with Raynaud’s disease/lupus/Scheuermann’s disease as musculoskeletal and bipolar/hormonal imbalances with emotional. Told recently there is one in Mildura long way to go but at least they look at the whole picture. Will try to get there though eventually after a few month’s of daddling. Definitely get referral to neurologist too if not happy with overall health even if it is to rule out other things that could be sinister but at least they can also run tests that are not usually covered by G.P.s. At the very least you get to have a say and can work on what you really need even if it is a further referral to psychotherapist. Cover all bases as a whole.Like one other post found antidepressants to cause major deppresive outbursts proceed with caution and not recommended.Despite tests being run are any of you finding sub-normal, high levels or inconclusive results with anything at all e.g thyroid, heart, etc. over course of Illness/Disability. just interested.Good luck to us all. p.s. how many of you find it’s a cyclic event (pattern emerging). Many thanks to SA Arthritis foundation for their obvious support.
August 17th, 2009 at 4:58 amOh my god its so good to know that its not just me!I have been feeling ill for 2 years now it started with low iron level(2) normal is 15-200 and for the past 2 yrs I have been backwards and forwards so many times to the doctors I too thought at times that I was mad but no one would wish this pain on themselves or anyone else.I have had countless blood test seen 6 different doctors at my surgery to finally find a young lady doctor that has suggested that I have Fibromyalgia and is referring me to a Rumathologist.What a relief to find that I am not going mad!Having seen a list of symptoms I tick all the boxes and have done for some time.I am worried about work as they are not very understanding but I cannot push myself anymore to go on a” bad day”.Best wishes to all those suffering with this horrible illness.
August 20th, 2009 at 8:43 amkeep smiling.
I have fibromyalga have had it all my life and have only just been diagnosed. I have found that exercise is critical and must be maintained as a daily part of life. It is hard to excersise but harder if I dont as I also have artheritis. I take ultra muscle ease with helps with the fatigue, I also take st Johns wort which releves the nerve pain. I also recommend taking the 100grams of aspro a day it certainly clears the brain fog or fibro brain, as people call it. I also take paracetamol for the pain that never goes away.
August 21st, 2009 at 2:55 pmPain and more pain…unfortunately it is an ingredient in my every day life.
September 14th, 2009 at 12:02 amI am 52….and have had this since my mid 20’s….Finally i was diagnosed when I was 45….. My local MD was wordly/innovative enough to suggest it after exhausting all the usual suggested syndromes…and a strange occurrence was my brother in law ( a vet) had only just suggested the same diagnosis 2 days earlier..He saw a book and bought it for me . He said ” this is what I think u have….have a read ..”. I then went to the MD as I was in very much pain and no sleep….and muscle spasms in my arms …I would have a spasm in my arm before going to bed and next morning it was still frozen ! Prior to this I had spent many years being prodded and blood tested for every form of arthritis known..taken all the medications with no relief…and finally had decided to get off the medical treadmill as I had had ENOUGH. My current MD did the trigger point tests and pronounced ” Congratulation unfortunately you tested 100%.” After an extensive medical history from childhood …he came to the conclusion I had fibro! I was relieved …I didnt care what I had by that stage as long as it had a name….I could deal with it. He has been supportive and caring….and so is the other MD I see .
The only thing that has offered relief is Endep…a nice sleep but that also goes up and down..25mg was good,..then I go through patches where it doesnt have any affect….increase to 50mg and lo and behold its nightmare time!!…My job is stressful….I find the environment (new job of less than 1 year ) overwhelming…noisy..and office temperature is warm ..and in my case TOO WARM…The owner/managers are not understanding….and so I am now considering not being there anymore..even if it means going on unemployment. I hate not working/contributing however it is self defeating being there when my stress levels go through the roof..and the pain increases…and it goes round in circles…..I am currently building up an online home business with the intention of working at home where I can control the majority of the environment. My heat and light sensitivity is off the scales. There is a history of trauma in my life…and I agree with the findings that it can be related/a factor. I welcome the recent findings in Scandinavia with working MRI’s which SHOW the pain registration in our brains compaired to “normal” population… I hope the “old style” doctors who thought it was “just in your head” actually feel guilt for their lack of support/acknowledgement of Fibro as a REAL condition. Good luck to you all…..and well done with this site DIRC…..
Hello Jules, hopefully an additional benefit of this site, aside from enabling people with fibro to communicate with other people experiencing the same thing and sharing their knowledge, will be an increase in understanding among the wider community and particularly medical staff. We can only hope so and keep plugging away.
September 14th, 2009 at 9:37 amJane
Hello all, It’s nice to know there’s a site like this. I have come across you all while trying to find an exercise class for FM people – I was looking up isometrics, so it was interesting to read that someone was doing Feldenkrais. I was finally diagnosed last year – it took three years. I had Ross River Fever in 2001 and thought the symptoms were associated with that. It took a change of GP who encouraged me to continue looking into what was wrong. I was referred to a rheumatologist at Monash Medical Centre (Melbourne). In the last 18months I’ve gone from working full time in exec administration to re-inventing myself. I stopped work last December and recently was granted a disability pension. Through a Centrelink provider I got into an integration aide course – something I find less demanding but still stimulating. I finish the course in about 5 weeks and will then be able to look for a job 1-2 days a week. For anyone interested, my GP gave me information about CoEnzyme Q10. It’s in the general healthfood area of supermarkets and is generally give to heart patients. However research has found it can be beneficial to FM patients as the enzyme boosts energy at a cellular level. I found it gives me that bit of extra energy even though I can easily sleep 10hrs a night. I still get soreness, stiffness and fatigue in varying amounts on varying days. I’m just changing from Lexapro to Cymbalta at my doctor’s suggestion as I mentioned sweats. Not sure if it’s being a 45yo woman with possible menopausal onset or the medication! Will see how it goes. I also take magnesium, evening primrose oil (as that can help joints and chronic fatigue), Omega 3 (Flaxseed oil), Gingko biloba (for the fibro-fog and memory fuzz), and Fish oil to ward of flu etc during winter. My doctor also got me to have a flu injection. Regarding sleep. I desperately needed a new mattress and early this year bought a latex one – they are often used in nursing homes as the latex supports and moulds to the body reducing possible pressure sore spots on the body. I found this helps the stiffness in the morning. It’s been an interesting time for me and I wish you all well in your daily management.
September 15th, 2009 at 9:07 pmHi all, popped back for a chat. Amazing how all of us who ‘were imagining it’ are finally being vindicated. Feels good! I’ve been doing ok, dropped heaps of hours at work and the gentler daily routines have helped me manage to a big degree. Finances suck though. Have tried a new medication for the hand trouble i have,(clawing & extreme burning) and have been extremely surprised that it appears to be working very well to the point of thinking of increasing work hours! It’s called ‘PLAQUENIL’ and is an anti-malarial drug. Never would have dreamed of taking it but the specialist read in an American journal that it can sometimes help. Looking back i used to drink a lot of that soft drink, Indian tonic water, which contains Quinine.(active ingredient) and I have a lot during summer and usually cope well during that season. Now i know why. May help some of you out there, if so , Good. Have been hearing that too much Vit. D. can be a problem for Fibro sufferers so just be careful with your suplements guys. My Doc takes quarterly bloods to check all Vit. levels and some months i have to take them double dose or drop back to every second day. At the moment the left calf is having a hissy fit, they keep thinking its DVT. I tell them it hasn’t been in fifteen yrs, but they still want to ultrasound it. Now they know i have Fibro they don’t panic like they used too. Slowly info is filtering to the Docs & Hospitals out there about Fibro. The cynic in me thinks some specialist or family member has it and thats why,…. bad cynic.. But you still need a good Doc & Rheumatologist or they still think you are one IQ point step away from a grape. Some days i think i actually agree with them. At least the grape doesn’t almost forget their head some days. Last week i stood looking in the ‘fridge for about five minutes ’till the teenager asked what i was doing.I was apparently trying to find the SR flour, (mostly kept in the pantry, for over twenty years.) She rolled her eyes and explained where it was, almost like talking to a mentally challenged Grape. Scary when on some days they do know more than you cause you are having an acute Fibro Brain Fog day. I don’t think she was convinced i was just testing her tho. Will have to try & do something brilliant to retreive my position i think. Too bad i cant think of any thing. Well, survived the dust storm we had on the coast on wednesday, boy that was nasty! All of us locked inside with only ourselves & the DVD player. Massive chest probs from the dust but at least we know which door leaks now.Haven’t needed puffers for about two years but boy did it cop a flogging on wed. Rang Hospital and they said don’t bother unless you are dying, too busy with all the ‘fit’ people with lungs full of dust from their morning constitutional. Local doc wants me on steroids but convinced him i need my family more, not a nice creature on those things, may not stay married, hehehe. Well, thats my latest ramble, hope you all stay as well as you can and remember, WE know we’re not nuts. (teenager says- brainless grapes) At least i know she can read! Good luck too you all, Juanita. xx
September 25th, 2009 at 2:50 pmi would like to hear from anyone who has been diagnosed with fibromyalgia after visiting a chiropractor thank you
October 11th, 2009 at 9:44 amWell, it is an extremely difficult time for me currently only about 3 or 4 weeks away from reaching the 20 years of FM milestone, I think the hardest thing for me to still cope with is not so much the pain, mind fog, shakes, depression, anxiety, isolation, IBS, etc, etc, but the fact I still cannot find a Doctor or Specialist to treat me with respect as an individual.
October 16th, 2009 at 11:40 amEach and every one of us who suffer this relentless torture do so in different ways, some respond well to one treatment or direction, while others need something totally different.
Where in many cases exercise is considered essential, in others it is a simple fact of “the more you try to do, the less you are able to do” and for these the “snowballing” effect can quickly take our illness to an unmanageable and unbearable level.
I have had to move home on far too many occaissions accross 3 States now, and it is breaking my Soul that I have to deal with idiots all over again who think they know FM from what they have read about, yes I know many sufferers have underlying arthritis, but in others there is no evidence of such, and those should not be treated the same way.
I wonder often; there is Fibromyalgia and Polymyagia, could there be a 3rd?
Me again, there is something troubling me, my new Doctor is pushing the anti depressant line with me, which I have had terrible problems with in the past.
October 21st, 2009 at 7:27 pmWhen we moved here to SA we were warned by 2 FM sufferers that the local Doctors were pushing Lyrica, Cymbalta, and Savella, one of which has been pushed at me by a Specialist who, how can I say this? was in a state that I suspected the medication wasn’t working for him.
I also know 2 other people who have had their medications changed to these new ones and their lives have been destroyed by the loss of stability, yet the Specialists just keep prescribing them.
Is anyone willing to stand up and say if any or all of these medications have been positive or negative in their personal experience please?
I am happy for anyone to contact me direct for confidentiality.
Hi Leon, in regards to the effects of Lyrica, my rheumatologist prescribed it about 3 months ago, it needs to be introduced gradually, or the side effects are unpleasant, i have found it has helped me with the muscles spasming and in conjunction with the tramadol, am able to “function” albeit with pain. I was diagnosed with chronic fibromyalgia and chronic fatigue syndrome7 months ago after almost a year of “its all in your head, pop an antidepressant and your “myalgia” for the moment will go away” type of doctor,
October 21st, 2009 at 11:06 pmI have avoided taking anti depressants suggested to me by those type of doctors, the Lyrica does have some type of sedative effect, but I will continue to use it , as before i started using it, the pain was so debilitating I could not walk,both legs spasming and would fall constantly, my husband would have to carry me to the toilet, and it literally took me 3 hours in the mornings to get myself going to go into work. (Work – that is another issue)
I am blessed to have found a lovely supportive rheumatologist, my new GP does not know much about fibro, however, he is educating himself which is a wonderful thing , and I could not have gotten through this year without the wonderful support from the Disability assoc and the fibro support meetings, it is a great way to network , and to validate oneself as a legitimate human being.
I am still having issues with my work, i am working 3 days week now, as my team manager has been unhappy with the 35 days off work in a year, and i find i just work harder when i am at work .
I have also swallowed my pride and using a walking stick to help me, the pain is so bad, and i am tired of bruising myself ffrom the falls.
The community needs to be educated, it is a misunderstood severe disability.
prayers and blessings and gentle hugs to all fibro sufferers
Thank you so much Julie, you have confirmed what the Doctor refuses to tell me, I am the only driver in my family as my Wife and stepdaughter both have intelectual disabilities, these doctors do not care that whaen one is already fatigued, exhausted, and suffering the fog that such medication takes away our ability to drive a motor vehicle safely, something I would rather drive that same car off the cliff than lose, as FM and public transport do not mix well.
October 22nd, 2009 at 7:16 amI also use a walking stick as my knee and foot give out without warning, also lose my balance, get the shakes, and often pass out with little warning, and it helps my posture as I cannot walk upright without it.
Also, I find trying to get to, and survive through meetings impossible, not only can I not cope with the duration but cannot cope with the way they are run, I cannot even sit through a Church service anymore.
I am making an offer as I can see the comments on this article are going to continue to a level of of being impracticle to continue, and basically this is the best group of people I have come accross in trying to join so many forums, and attending meetings.
October 22nd, 2009 at 8:14 amI have the facilities on my own web site of a secure chat program, and a forum I can set up for sub topics to help keep all in some type of order.
I do not want to take away from this web site in any way, it has started incredibly well, and it might be worth considering keeping this special group together?
At least I could do this in a way that is not controled by government or medical directions.
I am really sorry, I wasn’t going to post here again but I have discovered 2 things in the past 24 hours that have scared the hell out of me.
1- I just heard on the radio there is a plan by Canberra (a term used when the people responsible don’t want to take responsibility) to pay doctors a $100 fee for taking on new patients, this apparently will also include incentives for doctors to ensure patients are treated within certain time frames, the cost to us as patients will be that we will lose our rights as to which doctors we will be able to see making it difficult if not impossible to change doctors as needed.
This is insane, firstly to think some doctors won’t abuse the $100 gift in taking on patients they have no skill, knowledge, or ability to help, also anyone dealing with Fibromyalgia knows we cannot always stick to a time frame, we have to do what we can when we can, I know myself on several occaissions over the past 20 years all I have been able to do for up to 3 months at a time was lay flat on my back on the floor, and to not be able to change doctors as needed condems us to forced mistreatment, and completely takes away our rights to search out treatment that might actually work. If there is any honour at all left in Australian medical profession this insanity must be stopped immediately, which leads us to the second finding.
2- I have uncovered that current steps are being made to develop a “Best Practice” approach in the treatment of Fibromyalgia and I suspect that is why this particular web page is here, and I also suspect it is linked to the proposed changes from Canberra, I am pasting an article I just posted on my web site here to address this insanity and stupidity.
Every so often I scan the search engines for updates on Fibromyalgia treatments, I also look in depth to see what fellow sufferers are saying about their experiences in their journeys and treatments, in nearly all cases it is the same things over and over again, forums that start off with good intentions are taken over by the latest “miracle cure” with nearly every entry jammed with product spamming, either that or the forums are run my pharmaceutical companies or government agencies which make open and honest discussion nearly impossible.
October 25th, 2009 at 9:41 amThis time was different though, it has hit me in absolute horror to discover that Australian agencies are trying to develop a “Best practice” approach to this relentless illness, and to make matters even worse one web page I came accross was by a person linked to Arthritis SA asking for donations who only a few weeks ago was too busy to talk to me on the phone, promised to call back, and never did until I called the person who refered me to her and complained. This brought back the time I was misdiagnosed by a prominent QLD Specialist (in his own mind) with Psoriatic Arthritis, I was terrified what was causing this incredible pain throughout my body, wondering how I could ever keep my job and my home, which I didn’t as the Specialist used up every cent I had, I called the Arthritis Foundation for information, when it arrived I opened the envelope and on top was a form for me to bequeath my assets to them! How distressing was that?
Anyway, getting back to this “Best Pracice” garbage, many people who suffer from long term, chronic, and terminal illness in Australia soon learn how incapable medical paractitioners are of thinking for themselves and actually listening to their patients, Fibromyalgia patients especially seem to suffer the consequnces of this over and over again, many GP’s and Specialists follow Arthritis Foundation guidelines already, and in many cases this treatment is slightly effective but only for those who do have an underlying arthritic or rheumatic condition, in other words the underlying condition is being treated and responding which eases the Fibromyalgia symptoms, not the Fibromyalgia.
Anti depressants can also be beneficial to many but in others they can be so harmful with effects similar to bi-polar behaviour to sedation and even constant shivers
With so many differences and variations in Fibromyalgia patients the only effective approach can ever be on an individual basis, and even within that individual basis there must be flexibility as one persons symptoms can change overnight, so the treatment they have received yesterday could very well be dangerous and harmful today.
To relate an expample, one Fibromyalgia sufferer I know well has to go through the nightmare of finding a new GP all over again, this person tried to explain to their GP that anti depressants cause a multitude of unpleasant side effects especially bi-polar “manic” type behaviour, since saying this to their doctor the pressure has been on to see Psychologists and Psychiatrists to be medicated for bi-polar, in the meantime the patient has tried to ask for help on 2 occaissions for internal bleeding, with a history of bowel cancer in the family, the doctor ignored both requests for help, the patient also asked for Advocacy help, increasingly essential for any person with an illness or disability in this country, the doctors response “I don’t know any”
If a “Best Practice” approach is put to Fibromyalgia treatment this is only going to get even worse, patients will lose what little rights they still may have to guide or influence their treatment, medical practitioners may even be at risk of legal action, or voided insurance policies if they do not follow “Best Practice” procedures, patients will be under even more pressure to accept incorrect treatments and medications, and patients who cannot tolerate such will be even more at the mercy of certain government agencies who will take every opportunity they can to refuse service.
The fact that Best Practice is even being considered for Fibromyalgia patients proves that Australia still does not understand or accept this terrible illness.
Well done Leon for turning what has been a helpful and supportive site into something negative. It is not the medical profession’s fault that we have this unexplainable disease, and thanks to their efforts there has been much progress in understanding during the 20+ years I have been suffering. I have not been able to find a good doctor in this time, and at times that makes me despair. However, people are trying and I think the fact that fibromyalgia has reached the level where someone is even considering ‘best practice’ for its management to be an amazing positive. I would like to say thank you to Arthritis SA for the work they are doing. To those who have set up this resource, please don’t be discouraged by negative posts. Kind regards to all.
October 25th, 2009 at 5:18 pmHi Nicola, after 20 years of the same over and over again, if we are not honest about the real truth of what many of us are put through then the issues will never be fixed.
Eg
2 websites explaining how a US doctor is about to be charged for fabricating information about the benefits of Lyrica
http://www.scientificamerican.com/article.cfm?id=a-medical-madoff-anesthestesiologist-faked-data
and
http://online.wsj.com/article/SB123672510903888207.html
This is the point I am trying to make, you cannot trust what is told to your doctors, we must have the right at all times to help guide our treatment and choose the doctors who do listen.
October 26th, 2009 at 12:26 pmMy last post.
Dear Nicola, thank you for your supportive comments. With regard to not being able to find a ‘good’ doctor I don’t know if you’ve seen the comments posted a considerable time ago about the Canadian medical protocols to inform doctors who are wanting to know more about FM so they can give their patients appropriate treatment?
October 26th, 2009 at 12:42 pmThe link I put here earlier in the day appears to have broken down. I will insert a working one tomorrow, Tuesday. If you don’t have access to the resources to print or view a copy contact us via our site or our email dirc@dircsa.org.au or phone (08) 8236 0555 and we will post it out to you.
The Bridges and Pathways Institute, an Autralian site, based in SA, has a page about Fibromyalgia Syndrome and Australian Health and Community Services http://www.communitywebs.org/ChronicIllnessCare/fibromyalgia_03.htm
Regards
Jane
Nicola, I admire your positive attitude.
I recommend the support group for fibromyalgia, its a great place to network and talk to fellow sufferes, and ask them who their doctors are personally.
Leon, you misunderstand the forum that is available to all fellow sufferers here. This is a forum where we can all try and help each other, and to to educate ourselves on how to self manage. Change is inevitable, it may take some time, but 20 years ago Chronic fatigue syndrome was misunderstood and most people and practitioners accept this. It is up to us to lead by example, and if we conduct ourselves with anger and negativity its no wonder the medical profession in general tells us its all in our heads!
October 28th, 2009 at 2:07 pmI thank you so very much Jane for your support and this wonderful forum where fibro sufferers can communicate.
And to the Disability Assoc of SA, for their wonderful telephone line where on a very low day, I had the opportunity to talk to a fellow sufferer , I can’t thank them enough.
Gentle hugs:)
Dear Julie, Jane & Nicola
Not being in South Australia, I find the support forum extremely valuable. As Julie says, I believe the forum is for sharing ideas, which I did in my first post back in September. It is a condition that affects us all differently and I have been fortunate to find a GP that is helpful and sharing of ideas, and a specialist that is really positive – she was very pleased with my progress last week when I saw her for the first time since last year, even though I felt I hadn’t be able to be consistent at all! I am coming to terms with the fact that small, constant progress is the way to go.
My specialist recommended a website called knowfibro.com Just now I had a look at it, and thought immediately of sharing it with you all
The small application sits down in the bottom left-hand corner and you click on the expand button to see it emerge onto the screen. It allows you to fill in a questionnaire about your particular fibro conditions and then read up on what can help your issues, how to pace yourself, relaxation techniques etc etc. I suggest you read the intro pages first. I have printed off the relaxation work sheet to fill in and feel like I have a support tool for the times I will be managing by myself in between seeing my GP.
Regarding antidepressants. My specialist advised that two of the chemicals lacking/reduced in the brain are the same in fibro as in depression although the conditions are different conditions. Serotonin was one, I can’t remember the other !!!
This helped me understand why my GP changed my medication – but only when I was ready to try the change and not before. It makes sense to take them and find the right one for me. It makes sense to try some form of movement/exercise (which helps serotonin levels) as well as stretching the muscles. This knowfibro.com website has helped me understand the importance of what do to when and for how long.
Please continue to give your positive support – I believe in being open minded to what may need to change in ourselves, our environment and lifestyle. As I said earlier, I’ve gone from working 20+ years full time to a disability pension. I’m still very open to support, ideas and moving on with my life in the best way I can, at the pace I can.
Thank you all. Imelda
October 31st, 2009 at 1:29 pmHi,
I have really enjoyed reading the comments. I don’t feel so isolated or crazy. I live in outback Queensland and have just been diagnosed after gradually going down hill since about 2002. Having become sober 15 years ago and having depression I thought this was all because of my own mental problems. I have been really hard on myself because I can’t go out any more for very long. I’m lucky to be able to do my shopping. I can’t garden any more, my yard is a mess. Cooking has lost its fun. I am just soooo tired all the time. Excercise is okay but I pay severely the next two or three days. My doctor has just put me on Tramadol for the pain. I feel really tired and that is also an effect of the Tramadol. I live alone. I don’t have many friends. My mum lives here. Thankfully I have a cat and a dog for company. I can’t afford health insurance any more, I have bills I am slowly paying off. Food costs, electricity and car rego have gone up. Not that I can afford petrol any more for my car. I am on a Disability Support Pension and am buying the house I live in so I don’t get rent assistance. This illness really frightens me. I am just amazed at how my dreamed of future has just disappeared.
Sorry about the sadness but this is how I feel right now.
Regards Lois Langley
December 6th, 2009 at 10:16 pmHi Lois
December 8th, 2009 at 3:26 pmDon’t let the illness frighten you – just allow yourself to acknowledge it and do what you can, when you can. Small steps… When I went on the disability pension I was fortunate to have been a bit ahead on my mortgage and so was able to stop the payments. They will need to start again next year but I have learned to accept “what will be, will be”. If the worst thing that happens is that I have to sell my home, then I will. I would rather have my health than stress about where to find mortgage repayments and have that stress affect the fibro. If you have superannuation, see if you can claim the disability insurance. Usually you have to be unemployable for 6 months. I’m currently trying this path… I too live alone (with my cat!). Be gentle on yourself but empower yourself by finding out what options are there for you – both healthwise and financially. Regards, Imelda
hello all, just a welcome to lois. i know how crappy you can feel but dont panic, if you follow your docs recommendations it will slowly resolve to give you a decent level of function. a lot of it is trial & error, but if tablets dont work in a reasonable time they probably wont work for you. be prepared to be flexible(haha), and change it to one that may. i love the garden too but wasnt able to do it for months. it really hurt not being able to do it, but i eventually decided it was “going fallow”. a whole year of nothing; but by jingies its doing fabulous now! it will all come together if you take it slowly. i feel well enough to return to work part time and have taken a pilates class twice a week for last month. most modified exercises but feels good to stretch gently, helps posture too, as we all tend to hunch forward in anticipation of the next pain spasms. dont give up , we do survive. my mother is currently going thru what she calls “remission” of fibro,but she knows not to push it too much or it swings back again. dont give up, we all been there done that and know how you feel. good to know its not in our heads. if it is, we’re all in good company;) a happy pain free (reduced) christmas to you all and your families, enjoy x x.
December 9th, 2009 at 7:43 pmI sent Lois a personal reply. I had intended to get the generic Queensland links I found up here more quickly in case they were of value to someone else.
I must say, as someone without ‘fibro’ but an increasing understanding of its impact, I find the patience and gentleness exhibited by most people in their dealings with the condition and their support of one another most arresting in calling me to pull myself up about my own attitude to the minor frustrations of my day. Hoping that Christmas can be for all of us a time without pain or stress but full of joy, peace and laughter.
Here are the links to support in Queensland:
ME/CFS/FM SUPPORT ASSOCIATION QLD INC Phone: (07) 4632 8173 or (07) 4659 5239 They will return STD phone calls to try and save people some expense.
http://www.mecfsfmq.org.au/support.html
Fibromyalgia Support Service Johanna Geoghegan 123 Pohon Drv Tanah Merah 4128 State: QLD
Johanna doesn’t have a web address but tells me she sends her information packs and newaletters all over Australia, particularly to individuals living in isolated areas, and she also keeps in touch by email.
Services: Telephone counselling; information packs; monthly newsletter
Address and Contact Details:
Phone : (07) 3806 0552 (Phone/fax)
fairhaven@hn.ozemail.com
Arthritis Queensland has support groups and information. http://www.arthritis.org.au
From us here at DIRC wishing a Merry Christmas to everyone and hopefully a fabulous New Year for all (We will be here until the 23rd Dec and back on 4th Jan so the chatting can continue apart from that interruption.)
December 10th, 2009 at 11:24 amHi all
Just a note to say that after a year off work looking after my health and getting some retraining to be an integration aide (paid for by Centrelink provider), I got offered a part-time job to start at a school next year. It will be between 9-12 hours per week so I’m hoping I will cope okay and be able to maintain a balance that won’t flare up the fibro. In addition, I’m hoping it will be enough to restart the mortgage repayments and live very frugally!
Although I always try and be positive on this site I need to share that this was a good outcome because last weekend I thought I was going to die… due to side effects my doctor took me off a medication the specialist wanted me to try and I then had the worst withdrawals symptoms that left me dizzy, nauseas and with diahorrea. I nearly missed my sister’s 50th family get together on the Monday night and didn’t know if I’d be able to drive to the interview on Tuesday. I felt as if I had been hit by a Mack truck and at one point the tear-gates opened. I usually cope pretty well on my own and don’t usually ask help, but I learned in the last week it’s okay to ask when you really need it – even if it’s just to have someone visit if you’re feeling miserable, walk to the shop with you if you’re dizzy, or give you a lift. I had a debate with myself about asking for council help to do some housework and then decided that’s what they’re there for when you’re on a disability pension and am not coping. A rough week later I’ve been slowly coming good (back on old medication) but still aching. At least I can end the year knowing I have a positive start to look forward to – which I know will be good for the fibro.
I wish you all a peaceful, restful and happy Christmas/New Year. Be gentle on yourselves. Kind regards, Imelda
December 19th, 2009 at 8:21 amWe received this email here earlier this week. I wondered if the information would be of interest to any of you and whether you would like us to add links of this nature to our information. I’m putting into the fibromyalgia page because this is the most active of our forums and because she does talk about pain management and coping with the changes that a chronic condition imposes on your life. Let me know if you think additions of this sort are helpful or if you would rather ‘talk’ among yourselves, with DIRC just adding links to fibromyalgia factual information and support.
Hi! My name is Claudia De Mauro and I am the owner and founder of a company called Move Through Your Challenges http://www.movethroughyourchallenges.com My email address is mtyc2@optonline.net and I’m located in New York USA. I am a 38 year old professional woman with Spina Bifida who is proud to say that I have overcome 43 surgeries so far. My husband and I are happily married here in NY and I now run my own private practice serving the disabled community in many ways. I’m sure it’s pretty safe to say we have all known someone at one time or another who has been overwhelmed by their medical/physical challenges. Well, I assist those individuals in discovering the resources within themselves to successfully navigate the emotional aspect of living with a disability and all the challenges that come along with that daily. Although I have my Master’s Degree in Special Education, I chose to move on to receive additional education and training where I now have become a full-time Life Coach for those with medical/physical challenges. I offer 1-1 coaching, workshops, seminars (all of which can be run via phone as well), as well as school programs where I facilitate Disability Awareness days or weeks for students grades K-12. I make it a point to tailor my programs and services to the specific needs of the organization and/or individual I am working with. So, as not to take up much more of your time, I would like to ask if it would be possible to start either a forum or submit postings in some way shape or form, in an effort to reach the community I now serve daily. I hold weekly teleseminars (free — no charge for those at all) and am looking to reach out to the community to discover where their needs lie so that I may better serve them along their individual journeys. I am very open to feedback, suggestions and ideas as to how I may more efficiently serve the disabled community and where you may feel there is a need for further support. Below you will find the info for my website so I invite you to check it out before getting back to me so that you have a better idea of what it is I have set out to do. Thank you so, so much for taking your very valuable time to give me feedback and let me know whether it would be possible for me to create a forum in some way shape or form on your website/forum (as a new member of the community now) so that I may reach out and assit others in living their life to its greates potential. Thank you again for your time and I look forward to hearing from you. Please feel free to contact me at any time either via email or by phone. I will get back to you within 24-48 hours of receiving your phone message or email. Thanks and have a great day! =)
January 7th, 2010 at 2:51 pmI have been feeling awful since October 2007…when I started having unbelievable tiredness even though I slept well…walking became difficult for any length of time. wake up feeling sore all over and found it difficult to take steps..I have throbbing feeling like restless leg pain, pain in my arms, legs, feet, hips, groin and my back. I cant concentrate and have lost interest in even researching my family history which I had been doing for over 20 years. something I enjoy…Walking down stairs is difficult, recently after typing or using utensils my hands cramp badly.. If I stand for too long the muscles in my hips and back cease up and I have to sit…For last 7 weeks I have had constant diarohhea.
I read with interest above some people experience symptoms after trauma…which alerted me to the fact that I slipped and hurt my back in 2003 and had major surger in 2004..then in July 2007 I fell on the tiles when washing the floor and tried to stop my fall in so doing i tore the supraspinatus tendon n my shoulder and consequently had surgery to repair it…it was about October 2007 my symptoms started… My beautiful physio lady nursed me through both times and when I presented in March 2009 ask for help she soon quickly realised that something was wrong as I didnt responded at all much to any thing she did…she also said I wasnt the Chrissy she had looked after through my painful shoulder instant and surgery…she noticed a big change in my outlook.. I just feel so much pain and soreness…My doctor is lovely but I had to ask to go see a Neurologist after many many months of acupuncture and physio …today is the day and I am hoping he will be able to tell me what is wrong..
I was a person who worked two jobs after my husband died..in order to raise my children…Now I cant manage even one.
I just want answers and help
February 9th, 2010 at 7:12 amTwo responses…
February 10th, 2010 at 4:12 pm1.. Hi Jane – I’d prefer not to have links here. Many thanks.
2. Hi Chrissy – Rheumatologists diagnose fibromyalgia. It doesn’t show up in blood tests but you may have imbalances all the same… eg. my vitamin D is down. Talk to your GP about fibro if the neuro doesn’t have answers. A good rheumatologist who knows about fibro is important if this is what you think might be the cause of your aches and pains. The first one I went to said I just had myalgia, ie. pain. As my then GP said, a headache can be pain. As you can guess, I wasn’t terribly impressed!!