Fibromyalgia

monkey03 · 22 October 2008 at 9:32PM

i was diagnosed the cfs after 2 1/2 years of numerous tests and being told i was "imagining" my symptoms. I have been suffering for more than 4 years and have recently tried for DLA but been rejected twice because my condition is variable. I work full time (but have used my 12 weeks sick pay allowance for the year in the last few months!) I'm at my wits end trying to get some help..some days i feel like i could just curl up and die i'm in so much pain and so exhausted! How do you get anyone to listen to you when all you do is fill out 45 page application forms, only to be turned down a month later, without anyone ever meeting you and seeing how you struggle getting in/out of the car, having to hold onto others to be able walk anywhere, being too scared to go anywhere alone for fear of collapsing or not being able to park close enough not to be exhausted before you reach the checkout.....

yellowrock · 22 October 2008 at 9:40PM

Hi All

I too hav fms, been struggling of late with my osteo arthritis too. am waiting to see endocrinologist at local hosp due to lots of hypoglycaemic attacks, my blood sugar is all over the place! Recently have been trying to keep to a low GI diet and have noticed a slight improvement in my fms symptoms, when I did sneak some chocolate I got a real nasty flare! Not got diabetes though, but have heard low blood sugar is a common symptom of fms. I work part-time but sometimes it feels like it is 70 hours a week!! Well I suppose it is if you take into account running a house and looking after my son. My hubbie is great but I do feel guilty sometimes that he has to do so much to help me, I just want my independence and social life back! Would be lovely to hear form other fms suffer's and have a chin wag? Anyone tried the epileptic drug - gabapentin I have heard it is really good for fms.

try to keep positive,

bdmum1 · 22 October 2008 at 9:58PM

Hi all.

Another member of the Fibromyalgia clan here!

I was diagnosed as having ME/CFS with Fibromyalgia and IBS around 6 years ago after many many years of investigations. I suffered cancer in my 20s (I'm now 49) and many of my symptoms over the following years were put down to the menopause, stress, depression etc. The ME/CFS Specialist suggested my illness may well have been triggered by the cancer 20 years earlier as I had suffered repeated bouts of unexplained ill heal health / fatigue / burnout ever since.

I attended a Graded Exercise Programme for 18 months, and whilst it was useful to have a clinical explanation of the illness and its' effects, and it was really helpful to meet other sufferers, my health improvements were minimal.

I now receive Long Term IB, DLA including Higher Rate Mobility (used for a Motability car) and Middle Rate Care. My former employers have also accepted my illness as permanent and have awarded my pension rights early.

Great to "meet" so many fellow sufferers, and hope we can help and support each other in any way we can.

Penny-Pincher!! · 22 October 2008 at 10:25PM

jansart wrote: »

hi there i have had fibro for 4 years following a car accident. which came first the fibro or under active thyroid?
will add more at a later date, should you want to contact me [EMAIL="jansmail@hotmail.co.uk"]jansmail@hotmail.co.uk[/EMAIL]

Hi Jan

I think it would be a good idea for you to remove your personal email address for security purposes.

I was DX'd with FMS 4 years ago. I have it alongside SLE and alot of other health problems. I am in a wheelchair. I also have an underactive thyroid. I see a Rhumy and Encronologist professor at Kings College with regards to the FMS & SLE.

PP
xx

vivatifosi · 22 October 2008 at 10:33PM

Hi all,

I'm posting for my aunt who is also a fibro sufferer. She contracted it after an accident, so I was just curious to see who else is in the same boat. Interestingly, she also has Sjorgrens Syndrome, which I've also seen noted, so wondered again if there's a link.

BTW, thought you might like to see one of the presents that I got her for her last birthday, though please don't click link if you are easily offended... She liked it anyway...

http://www.cafepress.com/cp/moredetails.aspx?showBleed=false&ProductNo=4369816&colorNo=0&pr=F

Edited to add: sorry forgot to mention because its late. My aunt doesn't have net access which is why I'm posting for her.

tightperson · 22 October 2008 at 11:00PM

Hi, well I'm in the process of being diagnosed with FMS. My specialist is sure I have it, I'm sure I have it but I still have to see a Rheumatologist who specialises in FMS to finally confirm. I'm male which makes it unusual as FMS mostly effects women, I think my GP thinks I'm just making everything up or doesn't believe I have all the problems I do, I am going to change GP. I have had FMS for 8 months and it came on after sustaining whiplash injuries in a RTA and have been unable to work since then. I also have two prolapsed discs in my neck, severe osteoarthritis in both shoulders, back & hip problems, buckling left knee plus many of the problems you all know are associated with FMS. I have chronic pain 24/7 ranging from severe to very bad as well as chronic fatigue. I have been taking strong painkillers, Buprenorphine, for the last 8 months and Amyltriptoline for 3 months.

I find the condition so debilitating, I used to be fit & full of energy, now even the simplest things are exausting, can't sleep, when I do I still feel crap the next morning and can't get out of bed, then have to sleep or doze through the day. Walking is extremely painful, I drag my leg due to the hip and knee problems and my overall condition seems to be getting worse, not better. I have pain throughout my whole body, the only place that is pain free is my head and face, apart from the headaches. I am on ST IB, have applied for IS and DLA recently but I'm still waiting to hear. This condition has ruined my life and I am becoming more & more housebound, my parents take me out from time to time, wife doesn't drive, otherwise I venture out when I have to. Today I went to the supermarket as we were out of food, even hanging onto a shallow trolley I felt exhausted and wanted to give up and go home. When I did get home I collapsed for 2 hoursunable to do anything. My wife has been unable to work for 10 years due to severe scoliosis but has never claimed DLA as I as working, she didn't want the "stigma" of being disabled, she has now applied for DLA and waiting to hear. I am thinking of joining the local support group for FMS, there are several all over the country, I am tryng to get to grips with living with this. I'm going as my hands/wrists are hurting too much and I keep having to go back and fill in missing letters, since I've had FMS I miss letters/words out when I type or write.

welshbit · 22 October 2008 at 11:01PM

I also have fibro, amongst a few other problems (arthritis, depression, long term back problems due to accident at work). I'm on long-term incap and DLA. I use my mobility allowance on a motability car.

For those who haven't applied for DLA or have been turned down, try applying with the support of CAB. Most branches have advisors who specialise in sickness and DLA benefits. I applied on my own for DLA and got nothing. 2 years later went to CAB who filled in the form for me and got awarded higher rate for both care and mobility straight away.

It helps to have a supportive GP, if you don't have one then try a different GP at your practice. I have 4 GPs at my practice, 3 of them have had me in tears, but the other 1 is absolutely fantastic. She encouraged me to apply for DLA and to use CAB. She advised me about a blue badge. You need a supportive letter from your GP stressing your problems with mobility. You then fill in a form and include the GP letter. Hopefully they'll reply asking you for a photo and a chq to cover admin (either £2 or £4, can't remember). I]Does anyone else suffer with memory problems? don't know if it's the FM, depression or the meds.[/I NB you don't need incapcity benefit or DLA to qualify for a blue badge.

If you are awarded high rate mobility DLA then you automatically qualify for a motability car (or wheelchair/scooter). I went to an assessment centre (motability will pay for this) and was recommended to have some adaptions made. Motability pay towards some but not all adaptions, You can find this information out on the motability website.

I have been very lucky with my GP, she referred me to pain clinic (waiting lists vary locally) who sent me for hydrotherapy, physio (for learning how to relieve pressure points) and appointments with a hospital pharmacist. One of the drugs he prescribed was gabapentin... I have found this fantastic for nerve pain (shooting pain) although suffered side-effects on a high dose but I've now settled on a dose that's right for me, although I still get double vision but have corrective glasses.

OK, I'm a bit worn out now, I hope that some of what I've mentioned will be helpful to at least one person. If I think of anything else that might help I will post some more.
Hope you have the best day you can, but if you need to rest then DON'T feel guilty about it. (That's my biggest problem - guilt)
take care,
Ali

SteveCat · 22 October 2008 at 11:10PM

Regarding the Fibro sufferers, I would like to ask a question regarding something I experience. Do any of you suffer pain in and around you rib cage, I do and its horrible. It usually starts from my back and shoots through to the front, I hate it and find it worrying sometimes thinking its something else. Anyway just thought I'd ask.

tightperson · 22 October 2008 at 11:17PM

SteveCat wrote: »

Regarding the Fibro sufferers, I would like to ask a question regarding something I experience. Do any of you suffer pain in and around you rib cage, I do and its horrible. It usually starts from my back and shoots through to the front, I hate it and find it worrying sometimes thinking its something else. Anyway just thought I'd ask.

Sorry that's one problem I don't have, no pain in my ribcage or face, just everywhere else.

welshbit · 22 October 2008 at 11:19PM

vivatifosi wrote: »

Hi all,

I'm posting for my aunt who is also a fibro sufferer. She contracted it after an accident, so I was just curious to see who else is in the same boat. Interestingly, she also has Sjorgrens Syndrome, which I've also seen noted, so wondered again if there's a link.

BTW, thought you might like to see one of the presents that I got her for her last birthday, though please don't click link if you are easily offended... She liked it anyway...

http://www.cafepress.com/cp/moredetails.aspx?showBleed=false&ProductNo=4369816&colorNo=0&pr=F

Edited to add: sorry forgot to mention because its late. My aunt doesn't have net access which is why I'm posting for her.

Thankyou for posting that, I SOOOO want that mug :T :rotfl:

Fibromyalgia

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