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Nodules in the muscles and tendons?

  • By StillFlaring

    Anyone else? With “nodules” in your tendons and muscles?

    I just came from appointment with my orthopedic for hand pain. Apparently, I have nodule in my hand between the 1st 2 fingers, which is irritating the tendons and nerves in my hand. He gave me a steroid shot and said if it helped, we could do it again. If it did not help, we would discuss surgery.
    I followed up that appt with the neurosurgeon, and mentioned this to my (most excellent) neurosurgeon who did my back surgery in February and he said, “You know, I did see nodules in both your muscles and tendons when I was working inside your back, which did not show on the MRIs or Xrays. It is in my report from the surgery.”
    We now have a pretty good idea why I am having excruciating hip pain and pain lower down in my back below the surgery area; which steroid injections do help temporarily; as well as my feet: Nodules are irritating the tendons, muscles and nerves.
    Now, I just need to send his medical report stating this to my Rheumy & GP and see where we go from here. Fortunately, the neurosurgeon works with the pain clinic doctor I see for the injections in my hips/back.
    Has anyone else had anything like this happen?

  • By StillFlaring

    FYI – My RA (RF of 413) is currently uncontrolled. I am taking plaquenil, but have tried Humira & Actemera in the past year.

    • By Jillian S Moderator

      Thanks for posting in our forums.
      RA nodules are one of the most common manifestations of RA that occurs outside the joints. I am so sorry to hear that they are causing you pain. That being said, it sounds like you have a good team of medical providers on your side and that they will figure out a way to reduce your discomfort.
      In addition to the feedback I hope you get on this forum, I wanted to suggest one more place to post your inquiry publicly- Visitor’s Posts on Facebook:

      In the meantime, I wanted to share an overview of RA nodules with you:

      Feel free to let us know what your rheumy and GP say once they get your medical report.

      Jillian ( Team)

  • By Mariah Z. Leach Moderator

    Hi StillFLaring,

    Unfortunately it can sometimes be a long and frustrating process of trial and error to find the right combination of medications – but I hope you can manage to stay hopeful, because if you can find the right combination it can make a huge difference in your quality of life. I am currently on my fourth biologic, but I am doing better now than I have in years! So I recommend you keep working as closely as possible with your rheumatologist to come up with the best plan for you.

    Hang in there and remember that we are here to support you!

    ~Mariah~ (Site Moderator)

  • By Anonymous

    When I first noticed RA nodules, it was an eye opening moment. It’s really something when you begin to actually see the disease start to physically change your body.

    At my worst point I did have nodules about an inch under my elbow on both sides. The nodules didn’t hurt on their own, but if I leaned on them, they would hurt. Mostly, they were just a bothersome reminder of this new disease. As I began treating myself aggressively with supplements, those nodules went away completely. I do still have either a nodule or some kind of cyst on the ball of one of my feet. But, I am hoping that as I continue my alternative treatment, this will go away as well. Only time will tell.

  • By StillFlaring

    Update time: I was diagnosed with a squamous cell cancer in November, surgery in Dec 2016, healed mostly now, and I thank God they were able to get all of it and have clear margins.
    So, in the past 2 years, I have gone from working a full time job and running a household to diagnosed with (severe and agressive) RA, Fibromyalgia and Sjogren’s Symdrome, had multiple epidurals, regular cortisone injections, a spinal surgery, Humira, Actemera, (followed by a weird cancer), cancer surgery and lots of drugs, including a blood pressure pill for the hypertension caused by high levels of pain and weight gain. And the nodules are still there – on muscles and tendons, not just at the joints.

    My rheumy has said, “No more biologics, for now.” I agree as I was seeing no improvements and this cancer scared me, esp since I have none of the prerequisites for it .
    I am presently on plaquenil, lyrica, opiod pain meds, sulfasalazine, soma, vitamins, minerals, probiotics and supplements.
    My pain levels were excruciating during the cancer time as I could not have any cortisone injections until healed. I usually have shots in both hips every 3-4 months and hands 6 months. After getting the shots, ‘most days’ I am down to just teeth grinding pain. Though there are always exceptions, esp if I overdo it. I have to use a cane to walk and can not stand longer than 5 minutes. We were finally able to have a stair lift installed, so that helps tremendously!

    I am mostly bored out of my gourd, as I can’t concentrate enough to finish anything, my hands (even after shots) are not able to do any of the things I liked; jewelry making, crochet, even coloring. I used to be so smart & creative and now between the brain fog and the pain meds, I feel like such a failure. You can probably tell, today has not been a good day for me. Was up most of the night with pain.