Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
So I've had RA for more years than I care to think about...most of that time it was pretty well controlled. A flare here and there. I am currently on Enbrel which I have taken for the last 12 years and ibuprofen. For the last year I have been in quite a bit of pain from head to toe. I have mentioned it to my rheumy, who I love btw, and he will always say that we can change things or offers to give me a 2 week dose of prednisone to knock the inflammation down, but I have refused. I just always think, I'm fine, I can handle it and try and keep going. I work full time in an office...lots of sitting and computer work. About 3 mths ago, my neck and shoulders started getting really sore and tight. It gets so bad some days that I literally go home, put my pjs on and my husband sets me up in bed with a heating pad and the remotes, while tears run down my face. He has rubbed muscle cream on it and massaged it....and the next morning it feels much better. But then by about 11 it starts getting tight again....I almost have anxiety from it, waiting for it to happen. Then the other night it was so tight that I had trouble swallowing food! wth! When its not tight , I'm fine, so I'm thinking it must be from my muscles getting too tight? Anyhow, I go see my rheumy tonight and think I will tell him I need help. This is getting out of hand now....I want to live my life, not work and then go straight to bed at 6:30 :( Has anyone ever experienced this?
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I've been on high dose prednisone for pneumonia, and now I am slowly weaning. But lots of symptoms I don't like having, plus overeating has put at least 10 lbs on me. The food is "loud" as the GLP-1 users refer to it.Also pressured speech. Which comes out in my posts. Sorry I posted so much. I just need an outlet for my agitated and irritable brain. Just scroll on by my posts, if they are too...
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I haven't been around in a long time. I am admin in a private group, and I would like to upgrade someone else to that position. I thought I knew how to do that, but the prompt has gone missing. Or is it not allowed to upgrade someone else to admin? I just find "ban and demote" under "Edit." I don't get notifications to DS anymore, but I wil come back in a few days to find out the answer. There...
Definitely mention it to your rheumy.
Rheumy ordered an MRI and it came back that I had cervical spondylosis....a fancy word for arthritis of the spine that had caused the spinal canal to close up around my cord as well as slipped disks hitting the nerves at every level in my neck.The neck pain was so severe because the canal was so tight, I was becoming paralyzed from the neck down. It was "warning pain" before it was too late.
That doesn't mean you have the same thing but what it does mean is that just because we have Ra, we still need to investigate severe pain....especially when it brings us to tears. We tend to chalk everything up to Ra and it was anything but. I ended up needing major spine surgery to free up my spinal cord and prevent paralysis.
Please, let us know what the doc says and what tests he orders. Sounds like you need an MRI to see if it's soft tissue pain and even a Ct to see if Ra has hit your cervical spine. I'm not the only one here to have major neck problems.
gentle hugs.................Jen
So do get the neck checked out, but also the pain from head to toe. Adding prednisone or even ibuprofen seems to tell me that Enbrel has failed. Some rheumatologists are reluctant to change biologics, even when it is becoming obvious that the drug is failing or has failed.
The reason is that there are only so many biologics, and if you are young - a long life to use them up. So in some ways, I don't blame them, but in other ways, RA causes damage, and when you are young, you really want to prevent that.
I hope you find a solution and feel better soon.
I had been on MTX for over 20 years - in the days before Humira - and felt myself going downhill. I staunchly refused pain killers or any help. I was a brave little soldier and suffered through it all [until I went on Humira].
Here's the thing: studies have shown that if you knock down pain BEFORE it reaches a chronic level, you'll avoid a plethora of problems that are difficult to eradicate.
For years I refused pain killers and finally was so bad that I opted to take Tramadol. As most know, Tramadol isn't very powerful; for me it's just enough to take the edge off the pain and make the rest much better tolerated. I keep a stash of Tramadol on hand. I might go months without it, then dig into it for a couple weeks.
This disease waxes and wanes for most patients. Do what you need to to keep yourselves from being debilitated with pain. Get the rheumatologist to tweak your DMARDS or add a temporary pain killer.......just don't "tolerate the pain."
[Even if it means it's a PT manipulating the joint.]