Diagnosed at last but what now? - Fibromyalgia Acti...

Fibromyalgia Action UK
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Diagnosed at last but what now?


Hi,finally had my appointment with a rhuematologist (yay) and have been diagnosed at last with fibromalgia but feel as if the long wait was a waste of time.My rhuematologist basically did the tests,told me yes i did have it,then told me to chuck away my stick (as if i use it for fun) or i would need 2 sticks then a wheelchair and suffer back problems (as if i dont already) ,stop taking my medication ,including anti-depressants,join a gym and lose weight.He dictated a letter to my GP saying as much,bunged me a leaflet and that was it.Feel totally let down,was hoping for some understanding and better pain relief -have made an appointment to see my GP but am so worried he will stop my meds-i feel worse off now than before i went :( thanks for listening,gentle hugs to all xx

11 Replies

oh no that is awful the rhuem doesn't have a clue then , how can he say what will happen in the future ? i was told i would be in a wheelchair by 40 , i am 56 and still walking without sticks etc so they DON'T know, i am sure your GP will know you a lot better and should keep you on the meds, please try not to worry as it can make things worse gentle hugs back to you xx

What a plonker!

It is a recurring problem that doctors, even specialists, have precious little knowledge of what to do with Fibromyalgia. I swear if there were lectures on it at medical school they skipped them or had too much of a hangover to take notice!

Unfortunately there are no NICE guidelines on the treatment of Fibro. HOWEVER it is recognised by the World Health Organisation and there is an entry on the NHS website which I'd advise you to read and print out and take with you to your GP. If the GP starts going all woolly on you whip out the NHS website printout and draw the Doctor's attention to it.

A common description of Fibromyalgia is soft tissue Arthritis. It helps me to think of what I'm going through as Arthritis in my skin, muscles, ligament, tendons, nerves and intestines ... no wonder we feel so ill!

This forum and the charity's site fibroaction.org is a real treature trove of information about this wretched condition

((((( gentle hugs )))))

Julie xx

Hidden in reply to julieevh

I totally agree with you julieevh, learn as much as you can about it and go in armed and confident they are less likely to fob you off then.

Take care

xxRachie xx

Morning I found it a great relief to be told I had Fibro and that someone at last understood what had been happening to me for the last 8/10years. I am sorry you fell fowl of an unsympathetic Doc there are some abaout. If you need your stick use it but if there are days when you dont leave it at home. I had to resort to a stick as I have osteoporosiss in the old back and it reduces the strain on it.

In an ideal world we would all through away are sticks and scooters and walk across water! Unfortunately we have tobe realistic hugs to you (0) keep hold of your sence of humour :) xgins

I saw two rheumatolgists then the 3rd attempt found one that was some use ... He said he couldn't do any more for fibro than my gp was already doing but he contacted social services and I got some aids for the house and he sent me to orthotics to get some mould to measure insoles.. The first two were useless so tell your gp this and he should send you to another one

VG x

Hello all, does Fibro actually show up on a blood test or do they arrive at it by a means of eliminating other conditions? I am sure I have Fibro on top of the Osteo athritis that I suffer from but am finding it difficult to get my Doctor to take me seriously.

Love to you All

Jewell XX

Hi all,

some interesting stuff here. Rheumatologists can offer treatments like cognitive therapist, physiotherapist incling hydrotherapy. Pain management clinics can offer pyscological support and medication reviews. So you need to ask.

The source of more information is from Fibromyalgia association. fmauk.org.They have better booklet for you and ones to send to your GP, dentist etc etc. Its all about understanding what FMS does what you can do etc etc. Beyond that try finding a self management programme in the community it may be best to ask GP if they know about one. These programmes give self mangement techniques in emotional ups/downs/ healthy eating mind managing sypmtoms etc etc. So it all can be positive.It up to the individual... does FMS rule you or do YOU rule FMS?

I cannot believe that the rheumy did that to you. I myself have never used sticks and I actually refuse to as I have real trouble gripping things. But I would never say to a fellow sufferer 'throw up thy sticks and walk'. What a pathetic man he is. I say no one can understand what we go through unless they go through it. It is people like him that lose us our benefits. I am on no pain meds due to other problems but that does not mean you should have them taken from you. I have just learnt to live with it instead of it living with me. But we are all different and we all have our own coping mechanisms. You do what feels right for you and if your GP goes against it then feel free to dispute it xxxxx

i find it terrible how little the drs understand of how to treat people who are struggling. glad you got your diagnosis but not in the way you did. I was just given a leaflet and a prescription no follow up appointments at all . I have now insisted on going to see a specialist in my area and am not prepared to struggle on without help. With any illness we all have to come to terms with not being able to do what we could before. My sister has been to see a psychologist through the M.E/ CFS / fibromalgia clinic it doesn't take away her pain away but helps her to deal with the feelings she has. you should be able to get help with pain management through the nhs they should have a specific clinic for pain.


Hi, doctors are getting worse due to the system. I was diagnosed in aug but have suffered for years. My rheumatologist told me I had fibromyalgia and he was writing to my gp. I asked him for more information on fm and where do I go from here, he replied "look it up on the internet". That was it! Doctors wont say a thing anymore as they are liable,They do their job as in find out whats wrong then pass you off!

The best thing to do is do your home work, then go to your GP and ask for everything possible. The thing is, we are entitled to help and no one can refuse it. We just need to know what to ask for x

thankyou so much for all your kind words,i KNEW i had it and thought when it was finally confirmed i would feel releved but feel let down again by the medics.i have took on board i need to lose weight,and i only ever use my stick when i really need it.i shall go back to my gp and see what he says.thankou all again xx

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