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Fybromyalgia

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renluop:
My daughter, 50 with kids 19, 15 and 10 has been diagnosed, finds life very hard with it. it seems also associated in her case with gut issues. Eldest has ME/CFS.

Le Fanu wires Fibromyalgia in today's Telegraph. Apparently some argue it's psychosomatic, but it seems some get relief from medicinal cannabis, which, Le Fanu suggests, tends to disprove the theory.

kitz:

--- Quote --- finds life very hard with it
--- End quote ---

It's certainly life changing :(   Diagnosis is difficult and can take a long time.  I also have the added complications of arthritis, spondylolysis and ulnar palsy so those took priority for a while, but when I started having difficulty with vocabulary and remembering certain things, my daughter grew increasingly concerned.   I had tests which ruled out dementia & Alzheimer's, but it was so frustrating that some days I just couldn't read anything or remember which words to use.  I quite often say its as if someone has cut my vocabulary in half.   It's even more annoying to know that in the past I could just soak up knowledge and remember numbers no problem.   

It was the Neurosurgeon who when looking at MRI results for spondylolysis said he suspected I may have also FM, but it was outside their specialist area and I'd have to be referred to Muscular Skeletal for diagnosis.   Up until then I'd never really heard of FM.  When I saw the MSK consultant, the diagnosis was immediately confirmed.
The really hard part is getting medication right.  Some of the pain killers have caused havoc with my digestive system... and I didn't do too well on Gabapentin - I think I was off my head a lot of the time - but they swapped that to Pregabalin which is suiting me better and at least gives me some respite from RLS if nothing else. 


--- Quote ---but it seems some get relief from medicinal cannabis,
--- End quote ---

It is something I have only just started to research.  All I'm really aware of from others on the FM groups is the H&B version isn't strong enough for MS & FM as its too dilute.  :/

Weaver:
I’m very pleased that after about eight years they got my pain under control with fentanyl and morphine and various other drugs whose names I can’t remember, all together. I’ll have to ask Janet about the vital other drugs which I forgot; that’s half the problem, my brain is wiped out and my short term memory is quite worrying and a big problem. I’m very fortunate. Janet looks after me and she’s far more ill than I am.

Alex Atkin UK:
I consider myself fortunate I do not have it as bad as my mum, yet.  But those days I get up and suddenly everything hurts really suck, though its the inability to stay awake that really ruined everything, no way to hold a job like that.

But I seem to have arthritis (not diagnosed but seems the same as my mum had before it was detectable), IBS which sets off severe back ache from trapped wind and if its feeling really fancy some sciatica.  Got 3 hours sleep last night.

Still, I normally DON'T get what my mum does, which is if anyone touches her its agony.  I do get sensitivity to touch (like that area feels burnt) but it moves around and isn't constant.

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