justshea joint/tissue swelling

Discussion in 'Fibromyalgia Main Forum' started by 28years, Jan 30, 2009.

  1. 28years

    28years New Member


    You said in another thread:

    "I to have knuckle joints sore and swelling with my Fibro, but it's not actually in my joints, it's the tissue around them where my pain is. My elbows, hips, knees, feet and fingers have all of the same pain. But, of course, they give me something for arthritis."

    I have recently developed the same thing and I'm trying to find out what it is.

    Some background: I've had CFS for 29 years. Last June I started getting swelling of joints and the tissue surrounding them. In July I got acute lyme (with rash) and was treated with doxy for 3 weeks. But the pain, and swelling have continued and is progressive-- more and more joints are affected-fingers, wrists, elbows, ankles, shoulder and feet so far.

    I have been to a rheumatologist and he checked me for EVERYTHING and found nothing. He did find that in my Western blot I had one abnormal finding (Igm P23). So he sent me to an infectious disease doctor. The infectious disease doctor basically blew me off. He said I don't have lyme and my joints don't look that bad to him!!!

    Have you ever found out what is causing your joint/tissue swelling?

    Does anyone else out there have the same thing? Do you know what causes it and how to stop it?
    [This Message was Edited on 01/30/2009]
    [This Message was Edited on 01/31/2009]
  2. 28years

    28years New Member

    Thanks so much for your thoughts.

    Yes I am still on Valtrex. That part of things is doing well. I continue to have improvement, esp. in my nervous system. For instance, for almost 2 months now my reflexes are back. That might not be the correct medical term. (the reflexes the Drs. test have always been hyperreflextive since I've had CFS.)

    The reflexes that are back are the ones that make you pull your hand away from a hot stove so quickly you don't even think about it. For at least 10 years I would frequently burn myself on the wood stove or toaster oven and only know that I did when I could smell the burning flesh or an hour or so later when I would notice a new burn and not know where I got it. 2 months ago I burned my hand on the wood stove and I jerked my hand back so fast that I almost punched myself in the nose!! LOL!! It's happened a few times since with the same results.

    Other things have improved as well. I find I am walking more and using my scooter less. And I often will type something rather than use my voice activated software. That is my coordination is better. (I'm typing this!! That in itself is like a mirical to me.(OK-- I still can't spell).)

    That is why this new thing is so upsetting and furstrating. I'm just starting to see my CFS symptoms improve and now I've got something new going on. It really doesn't help that my doctors seem to think It's no big deal.

    I'm fairly certain that this joint/tissue/tendon swelling and pain is not related to the antiviral, because it started in June and I didn't start the antiviral until August. I'm supposed to add Valcyte starting next week, but I'm afraid to add it until I find out what this new thing is.

    I also have wondered if it was some kind of autoimmune reaction in the tendons or the connective tissue around my joints. But the rheumy said he found nothing. I don' know if he did a test for circulating immune complex. I will difinitely check into that.

    At this point I really don't know what to do about it.