Fibromyalgia
Ive just got back from seeing my doctor, i've got a long list of health problems including arthritis and see him regularly about them (not a hypochondriac!), at the weekend i met my cousin who has fibromyalgia and when we were talking i realised that a lot of the symptoms fit...anyway, i saw my doctor for my usual medication chek and asked him about fibromyalgia and he told me it wasn't a real thing, he said its a diagnosis given when nothing can be found...usually hes a good doctor so i was a bit surprised at this and asked to see someone else, so hes sending me to a rheumologist.
im not really sure what advice i want but guess im wondering what does the rheumologist do to diagnose this ?
and has anyone had problems being diagnosed?
im not really sure what advice i want but guess im wondering what does the rheumologist do to diagnose this ?
and has anyone had problems being diagnosed?
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Once you know what it is then you can start to fight it. There are a few drugs coming across from the US that can help handle fibromyalgia greatly.
I have been to a pain management clinic a few years ago for my chronic back pain, i found them very helpful but because ive been once im not entitled to go again...
Who has told you that because that's nonsense! My wife has been referred to pain management clinic numerous times for numerous reasons.
I wasn't aware that fibro could cause paralysis...
Arthritis would have physically visible symptoms, with fibromyalgia that isn't the case. Certainly not like arthritis, anyway.
My doctor told me, i went to the pain management clinic for 6 sessions over a few month period and when i asked recently i was told i wasn't entitiled to go again, that they 'taught' me everything at the clinic the first time....these were group sessions which lasted all day, they covered medication, meditation and exercise. I never actually saw anyone one to one...and i came home with a sheet showing exercises for people with limited mobility and a cd on meditation.
I'd be interested in what other peoples experiences are but I'm sorry to say I think you've been seriously underchanged there.
Also, I'm starting to think your doctor might not fully know what he's going on about, unless your local NHS has far stricter rules about PMC referrals but we've dealt with two NHS areas (Surrey and Greater Manchester) and both have allowed multiple referrals to PMC for various reasons (arthritis, degenerated spinal discs, fibro...) and management has been varied from drugs, steroid injections, physio to meditative and alternative therapies...
I'm wondering if a change of GP might help...
im seriously considering changing my doctor and luckily my gp surgery is in the middle of merging with another so soon i can opt to see a different doctor...a choice i was never given before, in the past my doctor has been wonderful but just recently everything seems to be too much of an effort...hopefully the rheumologist appointment will come through quickly and i'll get some answers.
I hope you do get to see a specialist and soon. I do have some experience of this condition, and whilst some practitioners dispute the condition, others are very receptive. It can be very debilitating so you have my sympathies.
Have you considered hydroxychloroquine? I am aware of many people who have found it very helpful.
no ive not heard of that drug before, my doctor was going to change my medication today, ive been on co-codamol and naproxen for years for a problem with my back but they just dont work any more, after i mentioned the fibromyalgia he said he wouldnt change my meds yet...but thank you, i will definitely look into that.
welcome!
I once had Lyme disease which can have symptoms that mimic many other conditions, including arthritis and fibromyalgia. But getting the right diagnosis is important because the treatments are different!
With rheumatoid arthritis, I think there are specific (but not foolproof) blood tests that can be done, as there are for Lyme (however if you do have the latter, it can be very difficult to get a doctor to take even a positive test seriously). It might be worth bringing it up anyway just to eliminate it.
I've just read up on Lyme Disease. That would be very difficult to spot as the symptoms overlap so much with other illnesses. It appears as if it is quite widespread, did you get the bullseye rash?
Yes I did, although I didn't think it significant at the time; the symptoms started a few years later. I asked for a blood test, which was positive for one type of antibodies, but 'equivocal' for the other (so I'd had it once, but was now free of it, according to the GP).
This all made ordinary GPs sceptical, and mine wanted me to see a RA specialist. However the treatment for RA (which I think inhibits the immune system) would have made the Lyme worse! In the end I saw a private Lyme specialist who agreed I still had it. But the whole subject of Lyme is very controversial.
I have secondary fibromyalgia coming from my hypermobility Ehlers Danlos Syndrome, as do other members of my family. The pain and other symptoms (fibro brainfog etc.) can be extremely debilitating.
All of this does make me think that in the future they will never find a test for fibromyalgia because everybodies symptoms are probable caused by all different viruses/ bacteria.
i know someone with Ehlers Danlos and she is often in agony.
I take a combination of pills ,and while the pain never disappears it does manage it some days so that i can get on with everyday tasks ,depending on the level of pain i'm in
I have an underactive thyroid, so at first all my symptoms made me think that my meds maybe needed altered, but all my blood tests came back fine and my Rheumatoid factor came back negative, so as you have said. Fibromyalgia does seem to be a diagnosis based on that being the only thing left that could be wrong with you.
I was referred to the CFS/ME/Fibromyalgia specialist in November when my doctor came to his diagnosis, I got a phonecall in January saying I was on the waiting list and to wait for an appointment letter, but it could be another 6 months and I would have to go to Newcastle. I have just got an appointment through for the end of May, so hopefully, by seeing someone who knows what they are dealing with, I will be able to know for sure if I really do have Fibromyalgia, and get the right treatment.
I had never heard of it before my doctor mentioned it to me in November, luckily for me, My doctor has been great and I see him every 2 weeks to see how I am coping and to talk about how I am getting on and to get painkillers etc..
The thing about Fibromyalgia is that every day/week/month is different and when one day you could feel like you don't want to get out of bed, you forget everything and every time you move is like you're whole body is in quicksand and it hurts just to think about moving. the next week, you could feel fine and like you had imagined how bad you felt the week before. and when people only see you when you are not at you're worst, they don't believe that there is anything really wrong with you,
Only a rheumatologist can put you on hydroxychloroquine but once s/he has done so then your GP can do repeat prescriptions.
We went to the Doctor's this morning for the results of my Daughter's blood tests and were not surprised that she has an extremely low Vitamin D count. The Doctor has prescribed her an intense 12 week course of Vitamin D and will refer her also to a rheumatologist in the meantime. Many of the symptoms she has described relating to Fibromylagia can also be linked to Vitamin D deficiency. At the moment she is just happy to know that they actually found something and hopefully her symptoms will improve. Whether or not she actually has Fibromylagia we will not know for a little while until the treatment kicks in, but for anyone who hasn't had this blood test yet, it may well be worth suggesting it to your GP as apparently the problem is very very common in this country. Will keep you all informed of her progress.
I take this twice a day. I haven`t really noticed any difference sadly.