Fibromyalgia help

[Ianrussell69]

Can anybody help me my daughter was diagnosed with a s but the diagnosis has now changed to fibromyalgia can anybody tell me what treatment there is and has it helped thanks

[whisperit]

Hello Ian,

Sorry to hear your daughter's in this situation. As you know, FM is a poorly understood condition (or maybe a whole lot of different conditions lumped into one). There doesn't seem to be one treatment that suits everyone. I have been given the FM label and referred for 'graded exercise' with a physio (no help), anti-depressants and gabapentine (like pregabalin) to improve sleep and retrain my brain to process pain signals differently, and cognitive behaviour therapy (the mindfulness and meditation stuff is quite good). For me, nothing has really got to the root of the problem - but then, I believe that's because the FM diagnosis is incorrect.

My mother also had very severe pain with FM some years ago, so much so that she strugged to get out of bed. She was referred to a specialist pain clinic and this was a massive help to her - she's now more active than many women half her age.

So I guess it's often a case of 'try this and see if it helps', rather than there being a set course of treatment that everyone follows. This NHS page gives quite a good overview of the options nhs.uk/conditions/fibromyal... x

[Ianrussell69 in reply to whisperit]

Thanks for the reply I was originally diagnosed with lupus then after 12 mth was told no we think it’s m c t d so we assumed my daughter also had this it’s been 2/3 yrs and 6yrs of physio and as you know there are no outward signs so people think you are trying it on she is now 19 and now gets very upset angry that see now thinks no one believes her she’s on gabapentin which up to press dose not seem to help ,we have a rumi appointment next week 🤞

[Cann]

Interestingly, this was a subject on my local radio yesterday afternoon - BBC radio Devon. Many people phoned or emailed to say how they had helped themselves because drugs and conventional treatment didn't help with the pain. It was an interesting programme and may be you could get information from them. Just a thought.

[Ianrussell69 in reply to Cann]

Thanks

[Goldyukr]

I’m sorry your daughter is sick. Must be very difficult to see. They were leaning towards fibro for me too because they couldn’t figure anything else out. Then I saw a neurologist who thinks outside the box and gave me a whole slew of tests, one of which tested for small fiber neuropathy. That came back positive. After that, things started falling in place. You may ask for that test as many who are labeled with fibro actually have this. The treatment is very similar. I also take Gabapentin. It was a huge help to me at the beginning and still helps me maintain the nerve pain.

[Ianrussell69]

Thanks