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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,
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.
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
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.
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.
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.
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
Sorry that's one problem I don't have, no pain in my ribcage or face, just everywhere else.
Thankyou for posting that, I SOOOO want that mug :T :rotfl: