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 been in a terrible flare for like two weeks( I think). So much pain idk where to begin. I have called the rhuematologist at least six times during this time and unable to get past the receptionist. He ordered an MRI of my thoracic spine and not the cervical spine and the receptionist refuses to allow me to speak to the nurse or dr to explain my increasing pain in my neck and down my arms and hands. Today I went to the primary and explained everything she right away put in the x ray and plans to add the cervical to the MRI I'm so worried the rhuematologist will read the MRI and still not change my medication! So frustrating! So painful! RA can definitely damage the spine! I have already made a request for a second opinion dr and I think I want to change dr no matter what at this point . So is everyone treated this badly? And it takes so long to get help? To get another appt. plus approval for a new doc
My neck is an issue. I have to sleep with a cervical pillow or not be able to turn my head without much pain and stiffness.
I am staying with my rheum and she is not involved in my back or cervical care much at all. She treats to target the RA.
I can not say the dmard or biologic care I have received over the years, for myself only has stemmed the stenosis in my neck or my back. Has helped my wrists, ankles, hands, elbows, my match joints. My neck? no. My back? no. Wish I could say, yes. I can't. But I am sure there are others on here that might be able to answer yes. As my RA factor goes up I keep treating to target the RA. I wish I could wave a wand and make the stenosis go away.
for immediate pain palliatives: rock solid neck pillow - essentially a piece of lumber - unmoving with a pad on top - I can NOT let my neck sink when sleeping. Physical therapy: trigger point crap. Moist heat (snake wrap for neck with the rice in it put in microwave). Steroid injections. Hot hospital pool physical therapy. Neck bracing (all types). working other muscles around (the traps, scapula, rhomboid, delts if you can). Hope I am not boring you.
imaging: keep your MRI's together once you step on this tread mill. ask for a referral to an orthopedic or neurologist for your neck if you want to have additional electrical stim testing done to see if you are losing sensation permanently in your arm, foream, hands.
I see a cervical neurologist (and the neurosurgeon in the same other department) for my neck. Both the C5 that was operated on when I lost function of my left arm and hand and post surgery now that C-4 has a post surgical herniation (here we go with the erosion working it's way u p) sigh. This is NOT my rheumatologist.
I see a ortho internventional pain management steroid needle sticker for my back and L 5 S1 injections, facet injections et al.
These two doctors are NOT my rheumatologist (the neurologist and the ortho) unfortunately. They all copy each other but I would not say they work quite as a team in concert.
I find that the only one that understands the whole shooting match, is well, like me.
If you are taking mthx, and it does not help, then perhaps you may have to consider that the pain in your neck and back is not auto-immune, even if it started at the same time you got sick.
The trouble with RA, is that it affects so many joints. Then we protect joints that are hurting, which twists other joints. I have a bad whiplash from 1985. I also have had some lower back injuries. All improve when I exercise regularly, strengthening and stretching the muscles, and then the muscles take the place of those overstretched tendons. However, the first 6 years I had RA, I stopped exercising. Things got relatively much worse. I always knew that I was in trouble, when the neck or lower back hurt more than the RA flares. Then it would be a few trips to the chiropracter, and the physiotherapist, to get it under control.
My xrays show damage at the first rib, and osteo damage. But that is a small comfort when I am in terrible back pain! I have to remind myself to do those exercises. Last night, I did my weights and stretches, including the lat pull down, which really helps my neck. Well, a few hours later, my shoulder hurt me so bad I was gulping down the pain killers and anti-inflammatories like there was no tomorrow. I googled shoulder impingement injury, which is what I have been diagnosed as having. And apparently the worst thing you can do is repetitive overhead movements, especially with weights. My bad! So the neck suffers, and will continue to suffer, until the impingement injury gets fixed.
Can't win, it seems these days!
@Depot - thanks for reminding me to get a harder pillow. This might really be a help for me right now.
we don't diagnose on here or play doctor - but your questions are valid ones. for my own humble beginnings of neck and back - started probably with scoliosis back in my teens with my first back herniations impeding function in my 20's and started to become very problematic in my 30's. my neck surgery was in my early 50's. none of this is elderly territory but very much degenerative. For myself I have multiple diagnoses.
For you - let us know what all your specialists say in the end, in concert.
The advice to keep your imaging is excellent. As you make the rounds you will need your studies be they MRI, cat scan, x-ray, or electrical impulse.
think of yourself as the healthcare administrator of your life (smiling) - and yes the rheumatologist is key but with my neck and back involvement,, unfortunately she is not the only physician on my team (I wish though ) :)
hugs
depotblue
Also there are some very serious conditions with C1 and C2. And instability. Symptoms can include neurological. Issues.
These are so scary!
My rheumatologist and neurologist and my orthopedic (lumbar and S1 and L5) happen to have treated, only me, of course, and one is the chief of cervical neurology at a teaching hospital, and I am OA - my stenosis is not caused by my RA per these two physicians. Makes sense to me, and me alone, since my years of biologic and dmard treatment have not stemmed the onslaught of cervical stenosis.
I have no C1 and C2 involvement which would be a minuscule percentage of all cervical herniations and stenosis.
I started at C7 and I am up to C4. I will keep you posted. Neurological? well of course since a herniation pressed on my C6 and C5 eventually, in my case, affected my spinal column and necessitated surgery and removal the insertion of a cadaver bone, a plate and four screws (but years and years and years and years after first symptoms). I did not operate until I lost function of an arm and that was well something like multiple decades. Stenosis is slaying me but at least it is kind of slow. My rheumatoid in my match joints bugs the crap out of me daily.
for me only, since the RA drugs did nothing to stop my cervical stenosis marathon, I have benefited from:
1. seeing an orthopedic for steroid injections - a whole lot
2. seeing an orthopedic for PT scripts for cervical PT: pool and land - a whole lot
3. neck braces from the orthopedic and/or the neurologist
4. nsaids from the rheumatologist (on rheum drugs also but they do not help my neck)
5. followed closely by a neurologist and neurosurgeon with periodic MRI's to monitor impingement
I am very very sad about this new herniation at C4 - of course in my feeble mind it is caused by the fact that I caused instability to my own spine by doing the C5 surgery Changing. But what choice did I have? the fat lady had sung after 20 years and my left arm was not working.
I have been bummed out about the new C4 herniaton. Like really bummed out.
I will post an update when I go see the chief of cervical neurology for a consultation in a couple weeks. I will also post the rheumatology update as I kind of see both of these docs around the same time.
For myself in closing, I am not going to see a zebra, for myself. C1 is possible (death of course) but if over 99.9 percent of folks with cervical stenosis live chronically to old age with impediments of pain and such I am going to focus in on that. I will keep the rarity of the possibility open but not dwell in it. That is just going to pull me down. I have been dealing with neck stuff since age 20 changing and I am in my mid 50's. stay in the hope. feel free to pm me. I have been at this neck crap for a long time and I offer you support in your journey.
there were a few women on here that had cervical surgery before me. 51% did. and Lynne D from LA - who was a huge support to me! I want to pay it forward!!! where are you Lynne?
I find it helpful to make myself a team since the rheumatologist is a script writer only and the biologics and dmards have not stopped my neck stenosis. that is my strongest point. My rheumatologist has NOT been my savior in my neck stenosis, my neurologist has.
depot
So sorry for all you have been through and are going through. Hope your next steps are encouraging. This is so lifelong. And the pain is unbearable.
I am still in pursuit of putting all this together. Idk what is the actual cause of the cervical and thoracic disease is and idk the extent of it either. MRI has been approved for feb. 16 Th. However. I have the x rays back and not looking to good i think.
I'm so scared of the thought of all this. Treatment, surgery,
I just want proper treatment for the RA and can't even get that! I'm still not ruling out that the spinal arthritis is or Isent RA.
I think all must be related even if we just relate it to our weakened body from RA ? That we could have such extensive back problems at such a young age.
I feel a little better this past couple days . I must have been in a terrible flare for the two weeks prior. A flare with unbearable back pain and fatigue that I could not function.
Take care. Please keep us posted!
My primary said the steroid injections would really help idk. But I think she forgot I have diabetes. Instant relief sounds so good to me. But idk.
Just hope we all feel better. Take care.