Comments on: Fibromyalgia Syndrome

By: Andrea

Andrea — Sat, 19 Nov 2011 20:18:14 +0000

I am in the process of applying for disability pension as having had Fibromyalgia for 10 years it has now got to the point where working is becoming too stressful to cope with due to the pain and fatigue.I would like to find some way of supporting myself from home so I could rest when I had to but that appears to be difficult. I barely sleep.And in the day if I try I tend to jolt awake as I’m nodding off all the time. Fatigue is such an issue as is the relentless pain. Can anyone tell me how hard it has been for them to get the disability pension in NSW ? I am seeing the Job assessor on Wednesday. I just don’t know what I am going to do financially if this falls through.My doctor is supportive but I know the bottom line is centrelinks decision.

By: Debbie

Debbie — Thu, 14 Jul 2011 13:57:50 +0000

After many many visits to the dr I was finally diagnosed with FM last year. I hate it and am having to go prove myself tomorrow for an application for a disability pension, which my dr dosen’t believe I will get, I also have osteoarthritis in every joint in my body and osteopenia which has now resulted in my second stress fracture, I am just so over it I am sick of the meds and wish that the people I have to deal with could feel like I do for 5 minutes and then they might understand. If anyone knows of a good rhumatologist in sydney I would appreciate there contact details. Thank you for listening.

By: admin

admin — Thu, 02 Jun 2011 06:48:47 +0000

Hello Madeleine

The following organisations may be able to give you some answers to your questions:

* Fibromyalgia Australia: http://www.fibromyalgiaaustralia.com.au/ Ph: (08) 8358 6086
* ME/Chronic Fatigue Syndrome Society (SA): http://www.sacfs.asn.au/ Ph: (08) 8346 3237

By: Madeleine

Madeleine — Wed, 01 Jun 2011 23:14:26 +0000

Hi,
I have had fibroymyalgia for about 5years now. When I was living in country Victoria, eventually, I found a doctor who referred me to a rheumatologist and physician who he said was the “guru”. I spent two weeks as an inpatient learning meditation, relaxation and undergoing hydrotherapy and gentle exercising. I felt soooo much better.

I now live alone in the Adelaide Hills and once again feel awful- quite full of despair at times. I was going along to a physio and doing hydrotherapy for a short time, however, the cost was very prohibitive.

Can any tell me is there any scheme where you can obtain physiotherapy services that are bulk billed for fibromyalgia sufferers?–or something similar. Also are there any support groups in the Adelaide Hills or Murraylands area?

By: San

San — Wed, 18 May 2011 10:26:34 +0000

Hi everyone i’ve been reading all your comment and it’s great to know i am not the only one, i was diagnosed with FMS in Feb this year after spending nearly a year being told i was depressive. I am currently going through the disability process with centrelink ( first app has been rejected). I’ve had to leave my job as i haven’t been able to work since June last year. i have always been an active person always on the go and suddenly one morning i couldn’t get out of bed. I am a single mum bringing up a 14 yr old on my own, i was always tired and aching and specialist kept telling me it was all in my head, finally i was referred to a Rhuematologist who diagnosed me in 10 mins. I am in Melbourne if anyone would like to get in touch can at aussie_mustang@hotmail.com

By: Cassandra

Cassandra — Thu, 12 May 2011 15:53:19 +0000

Hi everyone! My name is Cassandra and I’m 29 years old. I live in Albury/Wodonga on the border of NSW and Victoria. I was officially diagnosed with FMS in 2007 but I believe I’ve had it since I was around 11 or 12. Just reading everyone’s comments has been very comforting to me. I have been through so many jobs and only last around 6 months to 1 year before I finally have to leave due to exhaustion. I always use the excuse that I want to pursue other career options as I have been concerned that employers would not understand my circumstances. After reading about everyone’s stories I now know that I need to go at my own pace and not try to keep up with everyone else. I need to acknowledge what my body can handle and nurture myself instead of pushing myself into overload!!! Thank you all for sharing your stories and making a difference,
Cassandra

By: Jo

Jo — Sun, 26 Dec 2010 07:53:30 +0000

Hi everyone – wow, it’s Boxing Day and I am exhausted. I have had FMS since birth and I am now 51. As a child, I was continually told that I was making it up, stop being stupid and that I was a hypochondriac. HHmmm…18 years ago, I was formally diagnosed with FMS but not given any information. I thought it was just what the specialist was calling the terrible pain in my back. It landed me in bed for 8 weeks.
6 years later, I had the back problem again..and again diagnosed with FMS and again, not given any info.
It was only when I was studying to be a Massage Therapist, which included Anatomy, that I read a tiny section on FMS in the text book.
The light went on and I took it to the doctor..who checked my file from 18 years before and he was slightly embarrassed for missing it.
So, after a further visit to the specialist and a truck load of blood tests, the diagnosis was FMS!!
Now I am on Lyrica (anti-convolsant) Lovan (anti-depressant) as well as vitamin D, drops for eyes, nasal spray for hayfever symptoms and trying Panadol Osteo – which seems to be helping more than the others I have tried.
I only work 4 hours a week as a Massage therapist, the day after is a complete right off.
I finally sat down with my adult children and told them what was happening and gave them some information to take home to read.
They now understand that I am not just a crazy whinging person.
At the moment, I just need some serious sleep..but even though I fall asleep quickly and sleep 8-10 hours, the quality of the sleep is poor and as we have probably all heard..I don’t reach stage 4 sleep.
My doctor was happy to do the Dental program and I am happy that I can get my teeth fixed from all the clenching. He also did the GPP for the 5 visits. Ok, I’m tired of thinking now.
cheers, Jo.

By: Imelda

Imelda — Sat, 20 Nov 2010 07:17:48 +0000

Hi everyone – just thought I’d touch base. To date I’ve survived the part-time work which is 12 hours a week over four mornings but some weeks it’s just hard and I do very little in the afternoons and sometimes even sleep. On a Friday afternoon I go to an art class which I sometimes have to drag myself to but do enjoy. The bouts of fatigue still come out of the blue and leave me winded, the superannuation insurance claim is still going after more than 12 months (they keep requesting updates from my doctor!), and I’ve now discovered that I’m clenching my teeth so much at night that it has caused hairline fracture in a second tooth for which I now have a night splint.

What I did discover this year, that I would like to share with you is the government EPC (Enhance Primary Care program). If you have a chronic illness the government gives you 5 specialist visits a year and you only have to pay the gap, or nothing at all. My dentist told me about it but it has to be your GP who sets it up as agreements between doctor and ’specialists’ have to be signed. The funding runs from Jan to Jan and each year you get the 5 visits. I have an appointment to see a physio (who will not charge) and a dietition (who will charge for the first visit’s gap). Between the two I get 5 appointments. The dental work is separate funding outside of the 5 appointments, up to $4,000 provided over a two year span, so the mouth splint was free.
Cheers, Imelda

By: chrissy from Frankston Heights

chrissy from Frankston Heights — Sun, 24 Oct 2010 06:50:12 +0000

This is a follow up to my post above…I went to the Rheumatologist who initially thought it could be the following – 1. Spondylitis. 2. fybromyalgia. 3. psioratic arthritis He has now diagnosed the last two… As its so expensive to see such a person he is happy for me to be managed by my family doctor in consultation with him….what a relief to hear that…he costs hundreds of dollars.

He also advised me that the federal government has taken arthritic injections off the pbs scheme..so they are now 46.00 a pop. How about we all lobby the Government to put them back.

Its so unfair, I was also watching during election time an ABC program and my ears pricked up when I heard sexual thereapy visits are covered by Medicare and yet arthritits injections are not.

Anyway I am now on Fish oil tablets, predisolone, oroxine for my thyroid condition, diet control for my diabetes, strong pain relief, mycardis to name a few …I hate having to take all this but to have quality of life I have had to come to terms with it that this is inevitable.

If anyone has ideas and can offer support please let me know.

My sister and brother also have the same conditions..and our specialist said he has never seen such a strong presence of auto immune illness in anyone family.

By: Russell

Russell — Thu, 24 Jun 2010 07:50:35 +0000

Hi, I am a 34 yr old male from Adelaide, who has just been diagnosed with FMS. I have 3 young children, and are the sole wage earner in my family. I can not sleep and are in constant severe pain. Has anyone locally been prescribed sleep medication or pain relief that has been affective for them. Any help would be a godsend. Thanks in advance