Question For Those With RA and Fibro???

Discussion in 'Fibromyalgia Main Forum' started by ksp56, Jan 3, 2006.

  1. ksp56

    ksp56 Member

    I was diagnosed, with fibro, due to a high RA titer. I made a comment to my rheum. doctor that at least I didn't have RA. His reply was " You might wish that it was RA and not Fibro". He also hasn't ruled out RA completely. Keeping an 'eye' on it.

    Those I know who have RA have really bad times with it. I would like to know, what those of you who have both, think about the comment? Does one bother you more than the other? Do you notice same amount of pain for either? Can you explain how the pain is different, if it is?

    I would very interested in hearing from you and learning from your experiences.

    Thank you very much!

    Kim
  2. fivesue

    fivesue New Member

    Hi Kim...Hope you get some answers soon. It seems you are between a rock and a hard place, dear. With RA you might have crippling, swelling, etc. but there are meds to help. With FM you have pain, no swelling, but no meds to make better. Boy, what a choice.

    Hope you get an answer. I'm very thankful I don't know.

    Love,
    Sue
  3. Lulu28

    Lulu28 New Member

    Nearly 10 years ago when I was 34, I was diagnosed with both RA and Fibromyalgia at the same time. In the ensuing years, I've also been diagnosed with auto-immune hearing loss related to the RA, Neuropathy related to the RA, pernicious anemia and a severe B12 deficiency- all they say- related to the RA.

    For me- the Fibro means feeling like I have the body aches from a bad flu all the time--fever, brain FOG, dropping things, forgetting the names of things, extreme intense fatigue, deep muscle pain. The RA has caused severe erosion in my fingers, hands, wrists, hips, knees, ankles, elbows and just recently - my feet. It has also affected my eyesight, and gone into my spine. I have lost 5 teeth b/c the RA has weakened my jaw.

    The doc who diagnosed me was a GP who knew very little about RA and I was in denial. I've only been on Celebrex (caused my stomach to bleed) prednisone (no longer) Naproxen (stomach problems again) Diflusanal (I take occasionally) and PAIN KILLING NARCOTICS that I would not have any semblance of a life without. I couldn't live without Tiger Balm which gives me brief relief. The pain killers at least--take the edge off the pain. The best time to treat RA with meds is RIGHT away--before too much damage is done. I would do things so differently now.

    So differences? Fibro--deep muscle achy stuff that's constant and terrible fatigue
    RA---deep, intense bone/joint SHARP non-ending pain that has crippled me

    Fibro is NOT walk in the park-that we all know. May you NEVER get RA too. Best wishes--and good luck.
  4. Musica

    Musica New Member

    Kim, I have a definite RA diagnosis and a possible early fibro diagnosis.

    Fortunately, my RA is in control with meds. Without "other" symptoms that appear to be fibro, I would probably be feeling great. However, with RA that can't be controlled, that means the immune system cells eat up first the synovial membrane, usually around joints and organs, then into the joints themselves. Sometimes the organs, as well. The meds they have started using in the past 6 or 7 years (Enbrel, Humira, etc.) can control RA and prevent joint damage better than ever before. But some cases are more advanced or can't be controlled. That's when you see the joints eaten up and deformed hands.

    My guess is that your rheumy made the comment he did because fibro can cause so much pain, have a lot of other conditions/symptoms such as IBS, and there aren't meds that can focus on stopping the course of fibro. I've also read that fibro can cause more disability from pain than RA, but both can cause debilitating pain. RA pain tends to be sharp joint pain - I know people who are walking around basically on ankles that are bone against bone - UGH! But the all over pain/aching of fibro is no fun, either. And of course, it probably depends on the severity of each as to which causes more problem for one individual from another.

    However, if I had to choose between uncontrolled RA or fibro, I might well take the fibro. When I was first dx'd with RA, I was TERRIFIED of ending up deformed and crippled. RA can cause severe pain and fatigue, as can fibro, so the only "positive" to RA is having more effective meds. The main "plus" with RA, again, are the meds that allow a good chance at stopping the disease in its tracks and not having it cause joint damage at all. If I knew that would always be the case, and the meds wouldn't be harmful in the long run, I would choose RA. But with the possibility of joint damage - I might choose the fibro, or it would be a toss-up.

    The people you know may have had RA longer than the biologics have been around, or may not have RA that is well controlled with meds yet. That is a terrifying thing for me, and I do know people who have been on just about everything and the disease continues to progress.

    Unfortunately, many people with RA also develop fibro and have both, anyway!

    Have you had an RF (rheumatoid factor) blood test? The inflammatory tests can be positive in both. It can be so confusing because of overlapping symptoms, and a large percentage of people with RA have a negative RF, to boot! I hope you don't have both and I wish you didn't have either!

    I hope that wasn't too confusing. It's an interesting question and as you can see, there isn't one clear answer!
    [This Message was Edited on 01/03/2006]
  5. Musica

    Musica New Member

    It makes me so angry and so sad to hear about cases like yours!! Even 10 years ago, at least there was methotrexate to work against the immune system, and it has done a good job in many cases! To have a doc who had no idea what to do for you - GRRRRR!!!! I feel so fortunate to have developed RA when I did (diagnosed June 2004) and gotten AND responded to early treatment. You didn't even have a chance. What were anti-inflams supposed to do against an immune system run amok??? I'm so sorry you have all these RA-related problems. Is it too late for any of the biologics to work? grrrr I'm sorry, but it really irks me to no end!

    I guess one other comparison - you can treat symptoms of fibro, but you have to treat the CAUSE of symptoms in RA or it will eat up your body by joint erosions. Treating symptoms (inflammation etc.) will do little or nothing against RA.
  6. fivesue

    fivesue New Member

    Some info, Kim. Hope it helps.

    Sue
    [This Message was Edited on 01/04/2006]
  7. petesdragon

    petesdragon New Member

    I couldn't find a doctor who believed in Fibromyalgia or Chronic Fatigue but my GP told me about a doctor in Kansas City who certainly believed in it. I am now taking Remicade IV's, only recommended for RA. The doctor, however marked the diagnosis of Fibro and Chronic Fatigue. I shared some info with her about the cause of Fibro and Chronic Fatigue and she said "Just because we know what causes it doesn't mean we know how to fix it". I got a Remicade IV yesterday and I asked the PA (I only get to see the Rheumatologist every 4th visit) that he never seemed to address the Fibromyalgia and Chronic Fatigue. He said "Oh, we only treat RA here -- if you need more help you need to go to a Pain Management Clinic." He told me I could go to a couple of sites on the internet and find things that might help give me more energy! Duh. Then, when I in the waiting room, waiting on my husband to come, I overheard one of the receptionists talking to a person that thought she had fibromyalgia and asked if the doctor could help her. The receptionist said "Oh, we don't treat Fibromyalgia here. We send people with that to Pain Management doctors. Now I am feeling crazy. What I thought I was being treated for is not the treatment I am getting! I have the pain pretty well under control but the Chronic Fatigue is debilitating. I can take a half of a caffeine pill if I really need to function but then I can't sleep that night. What can I do for Chronic Fatigue????? I spend days in bed and my friends think if I only got out more and was in the sunshine more and TRIED I would have more energy. I also don't have a clue what to eat. I have diabetes and I do not like meat, fish or chicken except as an ingredient in something.I do not like vegetables. I LOVE carbohydrates. Can someone tell me what to eat for more energy?
  8. ksp56

    ksp56 Member

    I appreciate your responses. It seems the more I know, the less I know in some cases!

    I am due to have another RA test done. I do have inflammation in several finger joints and they are a somewhat mishapend. On my right hand, the middle finger hurts so much more than the other one's.

    Your information was very helpful. For me, and my family.

    Thank you Butzie and Sue for keeping this bumped! You are sweeties!

    Hugs to each of you...

    Kim