Diagnosis of FMS

I now know I have had Fibromyalgia for the last two years as everything now makes sense. I initially went to my docs with extreme back and joint pain. She then referred me to a Rheumatologist who did his relevant tests, found nothing so referred me to an orthopaedic surgeon. He crossed off every other possible cause for my disabling pain which included me having steroid injections in my spine 8 months ago due to degeneration in 2 of my lower discs in my spine. The pain did subside a little but after going back to work properly in January this year the back pain has returned with a vengeance along with other debilitating symptoms.

I went back to see the orthopaedic surgeon 3 weeks ago as my all over body pain was worse than ever and after repeating all the tests again he mentioned (in passing) that he thought I could have FMS. I had never heard of this condition before so did what everyone does and googled it. The more I read, the more I knew he was right. But this was out of his area of expertise so he then referred me to a Pain Specialist. After an hour long appointment with him yesterday, I asked if in his opinion, he thought I had FMS? His reply was:

'You have a chronic pain condition. I personally think the test I am supposed to carry out where I prod you in 18 areas to see if you say Ouch! for 11 of them, seems a little vague but yes I suppose if you need a label, you do have Fibromyalgia. But do you really want a label?'

I don't know now............do I? Will it help other people in my life understand? What happens then with work once they know I have a chronic condition?

So many questions but the main one is.........have I actually been diagnosed? If not, would it help if I was?

I would really appreciate your help please?

Thanks

Gail

18 Replies

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  • The expert you saw seems to be lacking in knowledge in my opinion. I wish pain was the only symptom of fibromyalgia, unfortunately it is far more complex than that. I for one have quite a team of specialists to help me, never encountered one with a dismissive attitude like the one you encountered. This talk of labels, I call it diagnosis. Lou x

  • Thanks Lou, you are lucky to have a good understanding team behind you. I suppose I just need a reason why my quality of life has changed so dramatically in 2 years. I have gone from going to the gym 4-5 times a week to not even being able to walk for 10 mins without having to sit down or stretch out. I just feel so frustrated!! I can't understand why a diagnosis for FMS appears to be so difficult for me to achieve when my symptoms are clearly, as you say, much more than just excruciating pain x

  • I fully understand your frustration, I am indeed one of the more fortunate in that I do have good support. I suggest you stay with this forum it has helped me a great deal. xx

  • Hi Gail. Im sorry that you have been diagnosed with this horrid illness. On the up side you now know what you have and can start to learn how to live with it.

    I for one was glad to be given a `label` I could stop fretting that i may doing all this suffering for nothing,that there may be a cure or i was going mad or dying.

    Over the last couple of years i have learnt a lot and mostly thanks to my wonderful fibro friends on this site.

    This is the link to our mother site.

    www.fiboaction .org

    There is a lot of info about fibro . take look and then come back to us on this forum.

    Hugs sue xx

  • Huge thank yous 😃. I have never needed outside support during my life but I have never felt as alone as I do now. It's good to know there are other people in the same position as me who will offer their support. I will definitely know where to come in the future...........thank you. Coping with this cruel illness is obviously not an easy one day to day but I do know the more I learn, hopefully the easier it will be x

  • hi Gail,

    I agree with mayrose - and you said yourself 'it all makes sense now' - that was my sentiment entirely, even approaching FMS diagnosis. Yes, you do want a diagnosis and I think you have got one. You may need GP to rephrase it on record from orthopedic mumbo. And you are entitled to support in the workplace (if you can get it) and through the benefit system (if you are unwell enough to meet their criteria) and stubborn enough to resist their attempts to throw you out (I hope!).

    Best wishes,

    Barb

  • Others have replied to you and given you brilliant information so have nothing to add in that way but would just like to welcome you to the site. They are a great group of people who have wonderful knowledge unfortunately from first hand experience on everything fibro related. None of us are medically trained but it is so good to be able to discuss the strange symptoms that fibro often brings us and know that we are not alone. The forum also has fun, you might think some of us are a chip short of a butty with some of our jokes but it is actually our way of keeping sane. Please pop back if you have any questions and there is nearly always someone out there who can help or at least emphathise with you.xx

  • What a patronising comment from the pain 'specialist' ?? He is supposed to help you and having a diagnosis means more understanding and knowledge you can aquire to help your own situation. Of course people want a diagnosis, why does he think you subjected yourself to 2 years of testing ? And why else would gp send people to see him if not for a bl.... diagnosis, sorry getting angry on your behalf.

  • I just wanted to say that I am so sorry to read that and I wanted to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Gail, I am in a similar situation. I got sent to a rheumatologist who tested me and sent my doctor a letter saying I fell into the category of FM. For me that was like a sitting on the fence diagnosis. Which must be their way of saying go away I have given you a name for it, use it if you want. So that is what I do. The consultant bought up some other issues around my blood tests that meant little to me. My doctor didn't ask to see me so I told my work I have FM, based on what the consultant told me at the hospital and the letter. Trouble is I put everything down to FM now and recently had quite a serious kidney infection. The only symptom I had was a very bad back and frequent urination. You have to think about how FM is affecting your ability to work. Have you a stressful job and so on. If you need help doing your job contact Access to work jobcentre plus, they were very helpful to me after I was diagnosed with glaucoma and lost some sight. They can even arrange for taxis to and from work if you find the journey too tiring. They are there to help you carry on working. So my advice would be to give them a call. Are you in a pension scheme that can give you the option of ill-health retirement? That is worth investigating as well.

    In answer to that consultant should you ever have the misfortune of getting someone who asks if you want a label - the answer is yes it is useful to have a label for your condition. That is what he is paid a fortune to provide you with afterall :)

    Take care,

    Blueby

  • Hi Blueby, thank you so much for your reply. Sorry to hear you have been in a similar position. I have now received a report from the pain specialist which says:

    'On examination, Gail has widespread tender points and although I didn't formally assess her, I feel that she would fit the diagnosis of fibromyalgia'.

    I asked my doctor what I need to do to get a firm diagnosis and she said this report would probably be the best I would get as FM is very difficult to pin point. So I'm stuck now. Because he has written this in his report, my employer is now aware of the situation.

    The problem is I now know that my job has aggravated my symptoms and I know that it will be impossible for me to return to my previous responsibilities..................I'm so scared about the future. I am a Sales Manager and 4 days a week I am on the road driving on average 2000 miles a month. On the fifth day I work from my home office. My working life is mainly sitting down and having to be in the same position for a long time is excruciatingly painful for me. I don't know whether my employer can create a new position for me otherwise I will be out of a job!! Then who will employ me with a chronic condition??? I'm now waiting for a meeting to be arranged with my boss to discuss my return to work...............but deep down I know this can't happen if I have to manage this pain for the rest of my life 😞

  • Hi Gail, sorry to here how worried you are. Its a terrible thing when you are forced to change your life because of a health condition. I have worked as a librarian for 33 years and started to lose my sight. I have glaucoma. Anyway i spent a good deal of time worrying myself sick about what it and what will I do if I can't see well enough to do my job and to be honest I do have problems with some aspects as I have to use computers a lot and more often than not I can't actually see what I am doing. Anyway as I said I worried a lot and you get very little support when going through these changes. the medical profession are not interested in your life until there are proven things you can't do. Then they put you on a list so you get some help.

    My job is very well paid and I have worked hard all my life to get to my present position and I feel sad that now my health is going and so I will probably end up losing my job and my friends and my income. But there is nothing I can do about it. I do the best that I can and Jobcentre Plus access to work have helped me. But at some stage I won't be able to do it anymore. But I will be able to do something. I have already noticed that my local charity for the blind has a terrible website and its awful for signposting information so I would really like to help them improve this provision, I have the skills to help out if they want me. If I don't have a job to go to I at least will have time to volunteer. This has helped me a bit. As far as money is concerned I will have to see how I manage I think, again if I don't have any money no one else will be able to get money out of me. I have faith that there will be help on hand. So I would advise you to have similar thoughts if you can. Try not to get overwhelmed. You are coming to terms with ill-health which is hard and something you get little emotional support for. You are worried about a future you can only imagine as being disastrous - which there is no point in doing as you don't know until you are there and when you are there different things will come into play that you aren't aware of at the moment that will make it easier.

    As far as work is concerned I would urge you to contact Jobcentre Plus Access to work - just Google it. They are there to support you to carry on working. They are really helpful and will advise on the sort of changes that might make life a bit easier for you.

    Hopefully you will get some help with the pain. My doctor just put me on Naproxen I am taking 1 tablet a day and despite what everyone else is saying I am finding it helpful. So they might find something that will help you to. I also have found that if I avoid processed foods I feel much better. So I am eating a simple diet now. Just protein and veg not much bread at all and even then I only eat rye. Sometimes these kinds of changes can help so it is worth experimenting.

    Good luck,

    Take care,

    Blueby

  • Thanks for all your advice. You have had to cope with a lot and I admire that you are still pushing through successfully. I am taking tramadol and paracetamol four times a day and amitriptyline at night and I'm still in pain :-( I am willing to try anything if it will help and my diet is one area where I know I can make changes. As far as work is concerned I will definitely look into the Access to Work and will just have to wait and see what my employer says. Maybe I am worrying too soon?

    Thanks for taking the time to help................much appreciated :-)

    Gail

  • Hi Gail, I really feel for you, I was in much the same position. My doctors never listened to me when I was telling them how I was feeling, all they did was throw more tablets at me. In the end I did give my job up as they didn't understand, because there is nothing to "See" they think im ok, even now people say to me "Well you look ok". I'd give anything to have just 1 day pain free!!!. I don't deal with my pain very well, im by myself most of the time, which means ive too much time to think usually the rubbish things ive been through. There is help out there. If you want something for your friends to read to help them understand, your famly too. "The spoon Theory" is amazing, it tells a story about how your days will be. I did this printed it out for people to read and they said that they didn't realise this was how I was on a daily basis. Take care and if anyone offers you help, take it. Sending lots of gentle hugs your way. xxx

  • Hi Gail I am waiting to get diagnosed with fibromyalgia - which has been a long road of tests and examinations etc

    Meanwhile I read , learn and cope with the awful symptoms-

    But you do tend to think about what help is it when you are

    Diagnosed - I guess some friends and family may realise I

    Am not lazy (so exhausted sometimes) - and that I am in genuine pain

    Neese

  • Hi very near now having my diagnosis of having fm after seeing so many specialists - feel like you - do I want it confirmed? - yes because I need help to deal with this

    Awful condition

    You take care of yourself. neese

  • Hi Neese, thanks for your reply. I am sorry you are still waiting for a diagnosis. I was very lucky that I had private health care with my job so my diagnosis only took 2 years. It does help once you are diagnosed as this will then protect you if you are working. Fibromyalgia is recognised in the UK as a registered disability and once diagnosed you are protected from unlawful dismissal. I have recently been in a situation where my company were trying to dismiss me on capability grounds. My incapability was purely down to my Fibromyalgia symptoms so they couldn't sack me. We have now agreed on a settlement agreement so that they can replace me with an able bodied employee and I can hopefully move on to a job where I can have time to manage my condition. I wish you all the best with your diagnosis and hope you can learn to live with this awful condition as best you can. It does take time but listening to your body and giving it what it needs is the answer.

    Best wishes, Gail

  • Hi hope you are well today - thankyou for

    Your reply - I am afraid I had to give my job up 2 years ago I was self employed I was a child minder for over 30 years but in the end was not fit enough to work but I have a fantastic and supportive partner who works and helps me so much - he has been to every hospital appointment with me and we are working together to combat this awful condition

    You take care Neese

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