hi,i have joined site despite no diagnosis,but as i read everyones comments i have tears in my eyes as i believe i have finally found a reason for my constant pain.My legs are permanantly painful.i cannot sit for long before they stiffen totally and i cant walk.I get shooting pains all over my legs and feet,,this has been getting steadily worse for years,now my arms are affected.I have a foggy brain,forget things,have headaches,dizzy spells and permanent exhaustion.I work,but find it hard to do anything at home as i am so much pain.I have been to a nuerologist twice,with no diagnosis either time,and my doctor keeps giving me different pills (gabapentin at the moment) which dont really work.The worst thing is no-one can see your pain,and dont believe in it.Your site and the poeple on it seem really kind and thoughtful,i feel a little better just for writing this xx

31 Replies


  • thankyou so much,i think i should do that xx

  • wellcome to the sight i am glad you feel better and you are most welcome .. saddly it is a battle to get a diagnosis but it is worth it at least for you.. dont give up use the NHS web sight and go back to your GP ( i am sure someone will send the proper link) be good to your self ... gentle dyslexic hugs

  • thankyou for your reply,i am definately going to try,was close to giving up xx

  • Just keep on at your Doctor, you need to know what you are battling. It sounds like FIBRO. Gentle Hugs. x

  • thankyou,you all so kind xxx

  • Hi I agree it sounds like fibro maybe you need to be refered to a rhumonologist ( sorry cant spell lol)

    they can check for the trigger points and give you a definate diagnosis

    but welcome to the site it is really goos and helpful


  • thankyou,i will do that x

  • i had the same and had to keep going back to the docs and keep being a pest in this time they found other things wrong to which all relate to the fibro and now at least i have a answer to my aches and pains but at least i no im not going mad keep pestering take info you have found into your doc and show him what you have found. i found newer docs know more about it.

  • that sounds a good idea,my doctor is a bit 'old school' thanks xx

  • My GP ordered a full spectrum of blood tests - for rheumatism, thyroidism, liver and kidney function - the whole gamut. When the blood tests all came back as clear, she immediately recognised my condition as FM as I had text book symptoms of this syndrome.

    However, despite having a proper diagnosis, the treatment has been poor. I also have Bi-Polar disorder, for which I tale quitiepine, but in a bid so save money, my GP has changed my meds to a cheaper variety. It IS a constant battle - and we with FM are such easy targets as we havevry little to fight back with! Read as much as you can about FM - we can help ourselves to a degree, but we do need medical assistance xxxx

  • yes i agree it is a battle,i cant explain to anyone how much pain i am in all the while ,you feel so isolated dont you? i am so glad i found this site,if fibro is what i have (i am sure it is) at least i know its not all in my head.thanks for your kindness xx

  • Hi so glad you have found this site, it's brilliant and loads of lovely people, who are always on hand to help you and answer your questions, and just to know that you are not alone and it's not all in your head ........ it does sound like fibro from what you are describeing, as fairylady said i think you should ask your GP for a referal to a Rhumonalgist it took years before i was sent to one and he diagnosed me within 5mins after years of pain and made to feel it was all in my head,

    take car good luck and gentle hugs xxxx

  • thankyou so much,i feel better just chatting to everyone..i have seen 2 different nurologists but not a rhumonalgist -i had reached the point of giving up with doctors altogether, i have had so many appointments this last year,but this has given me fresh hope of a diagnosis,as bad as it is i just need a name for it!thankyou for your kindness xx

  • Hello and welcome to our lovely forum Myagi, great to have you here with us. I am so sorry you are having such a hard time at the moment. I can so relate to how you are feeling, that is exactly how I felt at the start before I was diagnosed. I suggest you see your GP and ask for a referral to either a Rheumatologist or a Neurologist who may be able to help you and help you manage your pain and other symptoms. Whilst your symptoms certainly sound comparable with Fibro, it's always best to get checked out to rule out other conditions, I expect you will have blood tests and a full examination after your referral, this will hopefully lead to a diagnosis. Feel free to air your concerns and worries, we are all here to support and help each other. Take care. :) :)

  • thankyou,i have already found it so helpfull just to chat to poeple who scares me that it is getting progressively worse,i am working at the moment (i am 55) but it is getting harder each day xx

  • HI Myagi, good that you found the group. There's nothing worse than being on your own with all these symptoms without any name to call it. Maybe ask your gp to send you to a rheumatologist who will hopefully diagnose you. It's all been said here already, really, just wanted to say welcome. Soft hugs

  • thankyou for your kindness,i dont feel on my own anymore,and that is wonderful xx

  • Hi it does sound like you have fibro but obviously none of us on here are proffessionals or Gp well i dont think there are any GP on here but even if thry aree you need to go to your GP with a lkist of all your symptons written down and then mention fibromyalgia and ask him toi refer to a rheumatologist and hopefully they will confirm it for you that is what i did

    but even when it is confirmed there is not lot to be done just sort out your medication and you really jus have to deal with it bless you

    i am lucky i have a fantastic GP she really does back me in everything so that is good some on here there GP say it is all in there head

    Good luck and get yourself to your Doctor and dont forget to write everything down thayt you have and what you want to ask love to you Diddle x

  • if it does turn out to be fibro i shall at least know what i am dealing with,i know it is not going to get any better now,but i shall at least know that it isnt all in my head .thankyou for your kindness xx

  • Hi myagi,

    Welcome to our fibro world...I'm sorry you haven't had a diagnosis. I was 'lucky' in the respect that my fibro is the result of a stroke so I was diagnosed quickly.

    I'm sure you will make lots of friends here, I have and I've only been here a week or two. It really is a very good site with lots of helpful people :)

    I hope you can find a Dr who understands, I know your not the only one with trouble with Dr's.

    Take care


  • oh you poor thing,my dad had a stroke last september that is enough to deal with without fibro as well,i have a 4 hour round trip on the train to see him once a week,that cripples me up as i cant sit for too long.thankyou for your kindness and support xxx

  • Hi Myagi,

    Welcome to the sight, its really friendly and helpful. Like others I think you should ask perhaps to see another G.P. and ask for a referal to a Rheumatologist.

    Hugs x x x x

  • thankyou for taking the time to reply,i am overwhelmed by everyones kindness xxxx

  • It can be difficult to get a diagnoses but perservere .ive had it 38 years since I was 10 now struggling to get a diagnoses for my son despite family history but hallelujah I think they listening at last xx

  • oh my goodness thats a long time,i think mine started about 10 years ago (if that is what it is) but was sporadic at first,and has steadily got more and more frequent until now i am in permanent pain.thankyou for your kindness,i shall definately persevere xxx

  • yes i agree with everyone else...i think u need a new doc and it certainly sounds like fibro 2 me....glad uve joined this site ..its great 2 ask others if they r goin thru simular really makes u realise ur not alone.good luck xxxxxxxxxxxxxxxxxxxxxxx

  • thankyou you are very kind xxx

  • Best of luck pursuing a diagnosis. It is worth it in my opinion - although some doctors don't realise it, there are now many treatment options for Fibro and it can be managed so it's not like the bad old days when there genuinely was nothing that could be done for it. If you know it's what you have, you can at least pursue treatments and management strategies yourself, even if your doctors won't help much,

    It's probably worth taking in information from the FibroAction website and/or the NHS Choices website (which we have helped them update for the last 4 years). Your GP may simply not have considered Fibro.

  • I first saw my GP about this problem last September and was told yesterday that I have Fibromalgia. I had been to the GP 6 times and had 3 lots of tests covering absolutely everything all to no avail. Finally I can start looking into helping myself and looking for the right solutions

    Keep at it...

  • thankyou that does give me hope.i have a docs app next week and am writing down all my symtoms and will present them to him with my thoughts.Each day i read everyones posts and it gives me strength to keep fighting xxx

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