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str8outtacollagen

392d

I just wanted to have some information that a rheumatologist I saw recently gave me about fibromyalgia that I hadn’t heard in my 8 years of dealing with it so far. Maybe it will be helpful to someone else! 1. She said that even though many neurologists do not recognize fibromyalgia as a real condition yet, that it is a neurological disease. She said that much of the pain experienced is more about nerves firing than other types of pain, which is why medications such as Gabapentin can be helpful. (When she squeezed my toes to test for arthritis I almost jumped off the table from a pain response - she said that this was an angry nerve in my toe and that we get angry nerves all over). I keep getting sent to rheumatology for fibromyalgia, but she told me that rheumatology is a field that is mainly about arthritic conditions but that general doctors tend to send their “tricky” patients to them when they can’t figure out what’s going on because of a misconception about them diagnosing all autoimmune diseases and funky diseases like those. She said even in the autoimmune world they really can only speak into the arthritis types such as RA. That was news to me! 2. She told me that without quality sleep my pain would never improve in any significant way. She said that sleep and exercise are the most important factors of pain management for fibromyalgia and that they often go hand in hand. 3. She said that as far as exercise goes - cardio will help reduce pain even if it feels counterproductive in the moment. She said that strength training could potentially do the opposite, causing a flare, if it is not done in a mindful way.

    • TurtleRose

      391d

      Thank you for sharing. I had fibromytosis since before they had a name for it. I also have fibromyalgia, and many other things. I agree with the over sending us to the RA. I'm always trying to find new info and treatments. Unfortunately I can't stay as active as I would like due to my other medical issues. I found your post very helpful 🙂

    • Tiff86

      392d

      I seen a pain management specialist yesterday who stated the same thing. I will be starting on Lidocaine infusions next week to help calm the “angry/overactive” nerves down. He also started me in Alpha Lipoic Acid, Baclofen, and Magnesium Oxide which is supposed to help also in addition to my Lyrica. Btw, I have been in a current flare for almost a month now. The weather flip flopping/changing everyday is not good for me.

      • str8outtacollagen

        391d

        @Tiff86 I have frequent muscle spasms but I haven’t found a muscle relaxer that my body tolerates well unfortunately. In combo with my other meds they make me too dizzy to walk 😵‍💫

        • faerywyrm

          390d

          @str8outtacollagen that's a nasty side effect. Baclofen is a muscle relaxer... are you tolerating it okay?

      • faerywyrm

        391d

        @Tiff86 same here about the weather. Had two weeks of decent pain level, now back in a major flare-up. I am glad that you have muscle relaxers on board. Those are usually the first step, and a lot of people miss them. It sounds like you're with a good doc.

    • Bubbles18

      392d

      Thank you so much for sharing this!

    • Mamaqueen

      392d

      🙏 thank you for this information!

    • faerywyrm

      392d

      My rheumatologist is great. He told me many of the same things... and then last visit told me about a new paper out on the cause of fibromyalgia. There's new evidence pointing towards fibromyalgia being a case of the immune system attacking the nerves! My rheumatologist deals with a lot of autoimmune disorders, and is very hopeful for competent meds and treatments within the next 5 to 10 years.

      • str8outtacollagen

        391d

        @faerywyrm That is encouraging to hear that more research is being done on it and that new treatments are on the way!

    • dolphinblues

      392d

      My granddaughters rheumatologist told me the same thing!

    • Kingswife

      392d

      Yes my rheumatologist luckily was someone who acknowledged fibromyalgia and told me the same things

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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