The Treatments don't work for me........ - Fibromyalgia Acti...

Fibromyalgia Action UK

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The Treatments don't work for me.......Why.!!!!?????

hobbbllliiingaround profile image

Its been 15/16yrs now since my diagnosis, At the time I thought I was going to die....I had sudden onset M.E & Fibro-myalgia......Coming on after a lung problem from working with glue and thinners (which took months of anti-biotics and inhalers) Next was a double carpel tunnel for five years...surgery on both hands a success. After a few years of loads and loads of meds Chiro..Osteo..Physio.. Accupuncture..Massage..Even Chinese Herbal.Cognitive behavioural therapy...Swimming...OAPs aerobics (even though I was early 40s)....Nothing worked............After all this the doctors said.....best thing to do is self treatment...try and manage it yourself...with GP help of course. I had minimal medication after a stomach bleed a few years ago. Well......believe it or not I was coping quite well until this all kicked off with ...........ESA>>>>>> I was of course told I am fit for work which is crap...........then started the rounds of appointments and refferals .Tests and more tests...Doctors and more opinions....Try Gabapentin...............6 weeks of feeling absolutely awful..........Come down because it did not suit..Cymbalta/Duloxetine........This was next............Horrendous for me.....So was the come down......I know these meds are a blessing to some but they seem not to do anything for me but make me feel like I am dying....I WISH THE GOVERNMENT HAD LEFT ME ALONE....I am getting worse flares than I have had for years..........................................................................FIND A CURE......................................THAT IS THE ANSWER......

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hobbbllliiingaround
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7 Replies

hi and so sorry you are really going through it what an awful few years you are having to go through i wish i could say something to help but i have no answers all i can say is keep on plodding on like the rest of us

i do feel you have been given a raw deal but you are noy alone we are all here for you and rant on here when ever you can and let off a bit of anxt

i hope to chat again love to you diddle xx

Hugs for you , it is awful I know. I can't take most of the medications prescribed for Fibro because of stomach problems so I'm stuck take Ibuprofen and Paracetamol , along with Diazepam when things get really bad.

Going through the ESA assessment really is a struggle when you're feeling ill anyway , I have to face it in January and at the moment am fighting for the right level of DLA too.

I can't offer an answer but we all pretty much feel the same way here . It's discrimination and bullying at it's worse.

Hugs

xx

kaliquiff profile image
kaliquiff

Hi, My husband is the fibro sufferer and he felt not only is it bad enough to have an illness noone can see or knows much about but to have to fight for benefits felt almost like begging the government, it really did dent his pride. We were successful somehow and all I can suggest is persist and take one day at a time. Try not to worry and use DIAC (disabled information advice center) they really knew their stuff and helped us even through our appeals. But contact them early as they get pretty booked up. Good luck and keep your chin up your not alone x

Hi Hobbling, so sorry to hear you are having a rough time of it lately. I have felt how you feel right now, it can feel pretty hopeless can't it. I went through the guinea pig phase as I call it, where we go through the list of meds trying all of them and their delightful side effects. I went down the pain killer route to Tramadol with nothing working or even remotely helping my symptoms.

In the end I was fortunate, I changed Consultant Rheumatologists as I wasn't happy with who I was seeing, it was quite a lengthy process but well worth it. I now have meds that actually work and I feel in full control of my Fibro and CFS/ME and RLS symptoms. It is possible for our meds to work, we just have to find the right ones for us as we all tend to react differently so it's hard for the medical professionals to know exactly which med to prescribe for us. It's a process of elimination.

Have you considered having a word with your GP Hobbling and discussing your symptoms, how low you feel about it all. Also a review of your meds would be a good idea. As I am sure you are aware stress plays a big part in flare-ups - I am sure once you have the correct meds for you, your symptoms will ease and your flares will lessen. It's worth giving it a try in my opinion isn't it. Hopefully your Fibro would also stabilise and your general well being would improve too.

Wishing you all the best Hobbling, take care.

penny123 profile image
penny123

Hi Hobbling, i have found that using a combination of meds works for me in low doses. Taking one of these meds on its own does not work. There are always side affects which wear off slightly with time. For me my pain is so bad the meds are the less of two evils. I hope you find something that works for you. Also having to deal with ATOS on top of every thing else seems unfair to me. Best wishes from Penny 123

Sthandra profile image
Sthandra

Hi hobbling sort to hear that you can't find relief and I agree the government should leave well alone my husband showed me a news report about a soldier who had his benefits taken from him because he has a prosthetic leg they say he can walk 50 yards or was it 500 yards unaided don't they get it that's his walking aid the tossers sorry it got me going big gentle hugs. Sithy.

Thanks for all the messages , I am a little calmer today. I get so worked up with it all even though I know stress makes me worse...can't seem to help it at the moment. Maybe due to the on and off different meds as well as all the forms to fill in yet again. As I live alone I have no-one to rant at so I suppose ....MY blog gets it..Just glad this group is here....a good rant helps...thanks all...hugs back to everyone..x

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