Hello

Hi All, thought I'd just introduce myself. I'm on a bit of an emotional roller coaster right now as my perception of my condition has been turned upside down. I was diagnosed with sero-negative RA twenty years ago and osteo in my hands and feet seven years ago. About three or four months ago I was told I also have secondary fibromyalgia. I saw a rheumatologist last month who said they now think I've never had RA but have had fibro all this time. Had a second opinion with a consultant last week who confirmed the "new" diagnosis but did at least take a little more time to talk it through and try to find some help with me. Have to admit I was in pieces as I'd gone to hospital expecting to have my meds changed to something more powerful and come out with the knowledge that apart from a bit of potential help with sleep and pain I was now on my own. I'd thought long and hard before asking for a re-referral as I was in no rush to take cyto-toxic drugs but decided it was better than having my life limited by pain and lack of mobility any longer. I'm still not entirely convinced of the revised diagnosis as 99% of my pain and stiffness has always been in my joints and, until recently, DMARDS have been effective and steroids have always helped - I'm new to fibro but thought neither of these were much use for it. Anyhoo ... I can hardly disagree with the consultant unless any other symptoms raise their ugly heads so I'm now trying to come to terms with the situation and get my emotions under control as I know they won't help matters. The consultant is arranging for a fibro nurse to speak to me and for the physio to arrange some hydrotherapy. Already seeing OT re my osteo and awaiting a podiatry appointment so no getting away from hospitals for the foreseeable.

4 Replies

oldestnewest
  • Oh my goodness now I can't say I am supprised by all this but it must be a big worry to you. I am never 100% convinced by any diagnosis in regart to fibro as they seem to guess their way and the person who knows what is going one, ie the patient gets ignored.

    Well your in the right place for info and support so thats a start. I have found this site to be very helpful.

    hugs Elaine

  • Fibro is a sneaky little pest and disguises things so well. I have had fibro 23 years just over 5 years ago I woke up unable to walk with one ankle and one knee swollen to enormous proportion and the pain.... Was treated for weeks as torn / pulled muscles, eventually went to rheumy who said RA put me on meds that were horrendous... Changed to steroid injections no real help, saw 2nd rheumy who said it was osteo arthritis and the fibro had joined in to confuse the original diagnosis and told to get on with life. My GP got me referred to 3 rd rheumy who confirmed 2nd rheumys diagnosis but got me seen by orthotics for special moulded insoles and social services for house adaptions....so I am not surprised your first diagnosis they are now saying was wrong.... I am convinced fibro is the worst non killer Ilness to have as it plays tricks with your body your mind and fools professionals as well.

    VGx

  • Hello and welcome to our lovely forum Mistymeana, you are most welcome here!

    Take a look around our Questions, Blogs and Tags, there is a wealth of information there, advice, support, personal experiences and friendship too! Please read our FibroAction Guidelines, you will find these under Blogs at the top, please select FibroAction Blogs and then scroll down. We ask all our new members to read these, many thanks.

    There is also lots of info on our main site at FibroAction, please click on the link below to take you there -

    fibroaction.org/Pages/About...

    If you have any worries or concerns, please do not hesitate to ask us, we are always only too happy to help. We all understand, we are all in the same boat here.

    I hope you enjoy your time at FibroAction! :)

    Libs

  • Hello, I am just recently joined here and find it very helpful after years of on/off pain, weakness, stiffness etc I was finally diagnosed by my GP as having Fibro in early DEC just gone (I also have some disc degeneration in my cervical spine) but this has to be confirmed by a rheumatologist which I am on a 9 month waiting list to see. I have found this place very helpful so far and it helps ease my worries and help and receive help from others in the same or a similar position :)

You may also like...