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...

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Smoochiemom 05/18/2016

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?

dorthy 05/19/2016

I had it for about 2 weeks to a month. Not sure what helped but I was so glad when it stopped. I would come home from work and put ice packs one (dr recommended) and then switch with heat for 20 minutes each. Found the ice packs worked better for my neck and shoulder pain.
Definitely mention it to your rheumy.

Smoochiemom 05/19/2016

so I did talk to my rheumy last night and he's sending me for an xray of my neck because of the limited range of motion and then to a physical therapist. Today I'm feeling ok and decided to put one of those sticky hot packs on, hoping that will keep things a little looser :)

51percent 05/19/2016

Smoochie..I'm glad you are telling your rheumy. I've had Ra since 1977 but in 2006, I too had neck pain like yours and tried to ignore the pain, figuring it was all Ra. then I tried to shovel the snow and I went numb from the neck down....only for a split second....but I knew it was not good.

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

MarleneJ 05/19/2016

I would think that after 12 years, the Enbrel has run its course. Although it is not good to burn through the biologics, you have really pushed the envelope on how long most drugs last.

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.

biancavega 05/19/2016

I understand it can be very difficult to manage symptoms of arthritis. Have you ever tried using Absorbine Jr. ultra strength patch? I know you mentioned you are wearing heating pads but maybe you could wear a patch instead when you go to bed. It will reduce the stiffness in your muscles and smooth your pain. It has worked for me countless times! Go to www.absorbinejr.com and check it out. Hope this helps and best of luck!

Smoochiemom 05/20/2016

good morning :) Thank you for all the responses, very helpful. I have thought that maybe the Enbrel isn't working as well anymore but before I started taking it, I could barely walk 20 feet! So I'm frightened to stop it and try something else... he did not give me prednisone and really thinks the physical therapy will help as well as stretching daily. I used to take a stretching and breathing class 2-3 times a week but due to my work schedule I can't fit it in any longer. I need to make more time for me and find a new class:) We will see what the xray shows and how the physical therapy works and we'll go from there. Today, I'm feeling pretty good . Hope everyone has a nice weekend.

RetiredNow1 05/20/2016

I agree with the other comments. Glad you are getting it checked out. Sometimes, though, it might be caused by something as simple as the placement of your computer screen. I had a friend who experienced something similar, and the occupational therapist suggested that her computer screen be elevated so that she would look straight at it, and not at a downward angle. She was provided a type of freestanding shelf to sit on her desk, and it worked. It is nice when we find an easy fix. It sure beats other possibilities.

I hope you find a solution and feel better soon.

Smoochiemom 05/25/2016

Hello...xrays came back normal..no degeneration. Which is of course great news! Now I start PT on Friday...hoping this will help :)

californialynn 05/25/2016

You bring up something that too many of us are guilty of: being stoic in our pain and "learning to live with it."

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."

Smoochiemom 06/02/2016

So PT has started and I can't believe how much better my neck feels! It makes me so happy , especially since I was thinking I would have to either get a dose of prednisone (which I was on before and hate!) or take some other type of pain /muscle relaxer. it's only my second session but the stretching and massage are really helping. My PT says she works with a lot of people with RA, which only leads to my conclusion, I need to make stretching a big part of my day and night :)

californialynn 06/02/2016

The RA mantra: use it or lose it.

[Even if it means it's a PT manipulating the joint.]

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