RA and Fribromiagia pain

Posted , 3 users are following.

I was diagnosed with RA and Fribromiagia back in August. I am seeing a Rheumatologist and he has gradually increased the medication Methotrexate to 8 pills a week and several different doses of Prednisone. He also has put me on Gabapentin and Sulfasalazine. I am finding no relief from these medications. Also every visit he's asking me to pinpoint my pain as RA or Fibro. Because my pain varies I do not know what to tell him. I just hurt somewhere every day. If my hands are swollen and my fingers can't bend I assume it's the RA. When my neck and arms hurt I assume it's the Fibro. I'm going stir crazy not getting any relief and I'm on all this medication. Do I need a better doctor who can tell me what is causing each area of pain. Some days I will hurt all over my body and I will be so weak I need help to even walk. On those days I also run a high fever and my body feels lifeless if that makes any sense! I am searching any advise because I'm about to lose my mind!!!

0 likes, 7 replies

7 Replies

  • Posted

    You certainly need a doctor with a bit more imagination! If you haven't gained any relief from the medicaiton you areon after well over 6 months - it isn't right. My assessment would be he hasn't got the diagnosis correct but won't admit it.

    Has anything of that mix helped at all? 

    • Posted

      Yes my Rheumatologist has confirmed that I have both RA and Fribro with my blood work. He began the Prednisone starring out with higher doses then lowering them till I was off completely and the same way with the Methotrexate. Started at 4 a wk, to 6 a wk to 8 a week. For awhile I was feeling some better then boom like a ton of bricks back to daily pain somewhere in my body. The Sulfasalazine is new and I've taken that about 2 weeks. So basically I've been on different medications for exactly 7 mths. I woke up on August 3, 2015 and couldn't move my legs and it's been down hill ever since. I have never experienced anything like this before and I was always active. I had some issues with lower back pain and that's it, but this stuff is kicking my butt physically and emotionally! Thank you so much for all your input!
  • Posted

    So sorry to hear what you are going through.

    i can only speak from the RA point if view, but had pains in my neck, shoulders, arms as well as fingers ,wrists, knees and feet. At one point the shoukder pain meant I couldn't stretch my arm forward to pick up a mug of tea- couldn't turn key in car or do up seatbelt, turn on taps , lift anything.

    So RA can affect far more areas than you think. You are especially aware of joints being stiff, swollen, painful, but improving during the day until you sit for a long time. The fatigue is all part of it. If your RA does not improve after 6 months on methotrexate and sulfasalazine you may be eligible for a biologic which has made a difference for me. The fever is def linked to RA.

    My friend with fibro says there are particular areas on the body which hurt if pressure is applied. I don't really know how you d tell that until your RA is under control . It might be good to assume all the pain is RA unless its a pain in response to touch nowhere near a joint. She has good days and bad. Rest helps her, whereas sitting/ lying for a long time with RA makes me stiffer. I don't know if any of that is helpful for you? Hopefully someone else on the forum will have experienced both and can give you more insight.

    • Posted

      Thank you so much for all the information you provided. It means a lot!
    • Posted

      Reading Eileen s post and your reply gave me some thoughts. I checked on Arthritis research uk website and fibro can't be diagnosed with a blood test. It s not easy to diagnose and the condition can only be managed . Whereas RA can be improved with the right meds - and I think you would really notice improvement in your joints (whichever ones have been hurting) if the meds were working. I guess I m thinking similarly to Eileen that you need your RA brought under control or you need more expert diagnosis of your auto immune conditions.

      You mentioned you were beginning to feel better- then downhill again. Was that linked to finishing the course of prednisolone or not really?

       

    • Posted

      Did the pred you were on make any difference? Not 100% but a noticeable difference to muscle pain and stiffness in particular that then returned as soon as you stopped the pred?

      Fibro really is a"left over" diagnosis once everything else is ruled out - because as Rowbirdie says, there is no real test, the dx is made by saying there is pain at specific trigger points of which there are 18 and you must have pain in at least 11 of them (I think, that's off the top of my head). Something called polymyalgia rheumatica also produces pain in some of those trigger points and it is easy to confuse the two - though it is also possible to have both. The difference is that PMR responds to pred at about 15-20mg/day, fibro doesn't. PMR also looks very like RA in terms of the stiffness and other things Rowbirdie mentioned - but there is no joint damage and some of the RA blood tests aren't positive, but then, they aren't always positive from the start of RA and about 1 in 6 patients is first told they have PMR but the diagnosis is revised to RA later. 

    • Posted

      I started to notice less pain while on the larger doses of Prednisone but when the doses were down to like 5mg a day some pain returned just not in as many areas of my body and less often. I could tolerate a little hand stiffness/pain in the morning which would usually feel better in a couple hours while off the Prednisone completely but yes the pain has returned to daily and in more areas and more intense. I called my RA Dr and told him this and he put me back on 10mg of Prednisone and the Sulfasalazine 500mg on 2/21/16. I am not feeling better and have seen no improvement! I feel like I did when I was first diagnosed having no relief at all.

      I will discuss the possibility of PMR with my doctor, thank you!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.