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New ** I'm trying to understand the pain

  • By jena801

    I understand that my joints will hurt, but lately it has gone beyond just joint pain. By the end of the day, I can barely move. It hurts in my arms ( bicep, triceps), neck, hands feet. But sooo much more then just where the joints are. I hate reading on Google, but find myself doing it. Does anyone ever hurt beyond the joint? Does anyone find themselves in tears at night because you literally struggle to get in bed?

  • By jena801

    I see a rheumatologist every 3 months, and go again next month. And I will discuss this with him, just curious if others feel this type of pain

  • By ktinflorida

    Yes, I hurt all over in my muscles too. There was discussion that it was fibromyalgia or polymyositis. They finally got me on enough immunosuppressive drugs to get whatever it was under control. Keep discussing it with your Rheumatologist. Never just assume you have to endure it. They will either figure it out or accidentally get it under control like they did for me. Either way it is a win.

    Hang in there.


  • By jena801

    Thank you! Seriously a relief to kniw I’m not alone! No one arou d me understands.

  • By Frazzled

    I have the same symptoms – sometimes it is just joints, but mostly it is “all over pain”. I think that is why I was originally diagnosed with Fibro, because I just hurt all over and had a rising RF and elevated SED rate and CRP, but was not sero-positive. At least not then.

    I am finding ways to cope with it, and have been on a whole host of medications to combat the pain, stiffness and soreness from muscle relaxers to clonazepam (current) to Tramadol (current).

    It takes time I am finding out. I will see my Rheumatologist in January – that will be my six-month check-up. After doing yoga yesterday, I am much more sore in my arms, elbows, legs, etc. but is an ok pain. There are other types of pain that are not ok.

  • By rebeccav

    I was originally diagnosed with fibromyalgia as well and that diagnosis changed when joint damage started occurring. My doctor told me something interesting about RA. He said think of that all over achy tired feeling you have when you have the flu or even a bad cold. He said that all over suppressed feeling comes from your immune system working hard. Your body pays for that extra work that your immune system is engaging in. Therefore since we have an autoimmune disease, our immune system is always on overdrive, ultimately resulting in that constant achy state all the time. It is taking a toll on your whole body, not just the isolated joints.

    I agree though with a previous post. Always discuss your pain with your doctor and don’t assume you have to endure it.

  • By Richard Faust Moderator

    Hi jena801. Welcome to the community, but sorry to hear you are struggling. As you can see from the responses, you certainly are not alone and many here understand what you are experiencing. On top of all he great information posted, I thought you might be interested in this article from one of our contributors looking at the nature of and some of the science of chronic pain: Also, this article looks at RA and muscle pain: Hope this information proves useful. Know that you are always welcome here. Please keep us posted on how you are doing. Best, Richard ( Team)

  • By frostli

    I think its a form of formic type acid.
    In India they say this is the worst most painful of all diseases.
    They compare it to a Scorpion sting at its worst.
    On a moderate day it feels like ant bits.

    The diet in the east focuses on sours and amino acid containing foods.

    I think its an incomplete digestion of acids turing into a mother of a sting.

  • By MaxDrave


    I’ve had RA for around a decade, a pretty bad case; I am in a power wheelchair with it.

    If one gets the medication right the pain is tenable most of the time and is mostly around joints… I find that it moves constantly … … One day it is mostly in my feet, then the next mostly in my hands, then the next day my neck and shoulders etc.

    What you are describing I have had on numerous occasions, often for months at a time when the drug regime goes hay wire… Indeed I am in one such period now… I can do nothing, I cannot point because I can neither lift my arm nor move a finger; no joke…. Al joints, all muscle groups hurt like nothing on earth, my eyes are shot and my digestive system dysfunctional. I sleep in a recliner chair or my (very posh!) power chair………….. This is being typed via voice…. which also hurts because my jaw is seized up presently

    It is different and difficult for all of us for sure, but I have learnt… Know the RA and pain drugs, know the contraindications of those drugs, know about Biologic drugs, the xxxxxxMAB family drugs and the very real dangers of them…………. In my experience it won’t be long before you know as much as the average specialist… They are highly intelligent, educated people, but they do not have your drive to find answers because ultimately, they do not have RA.

    Many people find pain relief with a pant based diet and probiotic drinks from your local supermarket… A large steak, beer and a few cigarettes really does not seem to help RA and similar conditions.

    Good luck