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RA can be a Literal Pain in the Neck

RA can be a Literal Pain in the Neck

There’s been a nagging wondering over the past 18 months if RA was impacting my neck. Radiating sharp pain in the neck, shoulders, and arms increased in intensity. Numbness and tingling in all fingers began to be felt. I had an x-ray, saw a chiropractor, had massage therapy, did gentle exercises at home, took muscle relaxants, applied lots of muscle lotions, got an MRI, went to a physical therapist, saw multiple doctors, got an epidural steroid injection, had a nerve conduction and electromyogram (muscle) test, progressively took more and stronger pain medication, and eventually ended up in the emergency room. The final diagnosis was degenerative arthritis in vertebrae C5 through C7, two herniated discs pushing into the spinal cord (stenosis), and bone spurs pushing into radiating nerves. A four-hour surgery is in store this week. The neurosurgeon will remove the two damaged discs, cut away bone spurs, and fuse three vertebrae with titanium hardware. A long recovery is in store but the notion of no longer dealing with the symptoms provides motivation to proceed.

Various views from multiple specialist doctors about whether or not the neck problems were caused by rheumatoid arthritis were declared. Some tended to avoid the question probably because they weren’t exactly sure. But the diagnosis notes from several doctors including an emergency room doctor, an orthopedic surgeon, a pain medicine doctor, and a neurosurgeon stated the following (ICD diagnostic codes included): cervical degenerative disc disease, degenerative joint disease, chronic neck pain (723.1), cervical disc herniation (722.0), cervical radicular pain (723.4), cervical spondylosis with myelopathy (721.1), AND rheumatoid arthritis (714.0). I’ve had the RA diagnosis for sometime now. But the fact that it was included on the list right next to the neck problems lends evidence that these doctors believe that RA must be contributing. When I asked the neurosurgeon, he quickly stated that is was probably caused by a combination of the RA and genetics.

When it comes to RA, we tend to focus on the traditional peripheral joints that are impacted like fingers, knees, and toes. But it is clear from the research literature that RA can impact the neck.1 Up to 90% of RA patients show changes in the neck via x-rays.2 One of the more serious neck conditions related to RA is atlanto-axial subluxation which involves a stair stepping of the vertebrae. This condition occurs in up to 30% of RA patients.3 When this situation occurs at the C1-C2 levels right next to the skull, it can put dangerous compression on the brain stem resulting in permanent nervous system damage and even death. Up to 12% of RA patients show this symptom.4 Given the seriousness of this condition, some researchers recommend surgical intervention at an earlier stage before irreversible damage occurs.5 In addition to RA, this dangerous condition can be caused by several auto-immune arthritis diseases including ankylosing spondylitis, psoriatic arthritis, and lupus.6 Radiologists know the critical impact of RA of this part of the neck. On my latest neck MRI, the report stated, “Mild degenerative change at the C1-C2 articulation, but no significant canal stenosis.” This report indicates that I need to pay attention to these joints over the long run but that my current symptoms are likely not related to C1-C2.

If you have RA, don’t ignore neck symptoms including the more common pain, stiffness, numbness and tingling in fingers, and pain radiating down the shoulders and arms. Most importantly, if you are experiencing a change in bladder and bowel control and/or gait disturbances, please seek medical attention immediately as these may be symptoms of serious spinal cord compression.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. http://rheumatology.oxfordjournals.org/content/45/10/1183.long
  2. http://www.rimed.org/medhealthri/2012-04/2012-04-105.pdf
  3. http://www.rimed.org/medhealthri/2012-04/2012-04-105.pdf
  4. http://www.rimed.org/medhealthri/2012-04/2012-04-105.pdf
  5. http://www.ncbi.nlm.nih.gov/pubmed/8606562?dopt=Abstract
  6. http://radiopaedia.org/articles/atlanto-axial-subluxation

Comments

  • Angie
    4 years ago

    Wow Andrew, good luck with your surgery! It’s funny you post this, as I just happened across it today (one year later), but applies to me. I am having surgery this week. Due to being under the anesthesia for 5+ hours, they did an x-ray of my neck (I think my whole body minus my neck has been x-rayed for my RA).

    “One of the more serious neck conditions related to RA is atlanto-axial subluxation which involves a stair stepping of the vertebrae. This condition occurs in up to 30% of RA patients.” I just got diagnosed with a mild atlanto-dental subluxation, which is apparently what they were checking for since your neck is hyperextended for the breathing tube. Now they’re putting it down via a camera.

    I hope your surgery went well and your pain is less, if not all gone!

  • Angie
    4 years ago

    My surgery is a breast reduction to get some weight off my shoulders/neck, so it’s a little (but not really) related to the subluxation they found. The surgeon told me I’m going to need to see a neck specialist. I also get blinding headaches and have torticollis, which he says may be caused by it. Considering migraine medicine doesn’t work and I’m waiting on Botox approval, it’s interesting timing!

    I’m sorry to hear that you’re having trouble. I can only imagine what the recovery is for neck/back surgery. I hope you get good news and I will keep you in my thoughts!

  • Andrew Lumpe, PhD moderator author
    4 years ago

    Angie, what kind of surgery are you having?
    My neck surgery went well and at 6 months pain was diminished and strength was returning. But now I’m having problems again and am getting a CT myelogram this week of my entire back.

  • Ava
    4 years ago

    Hi Andrew, I have just read your story and know this has been over a year for you so hope your neck surgery has gone well an you are doing well.. I so enjoy reading all your articles they are all so informative. I too have been diagnosed with RA since 2003, an have had migraines since then also.. Have never put the two together until reading your story. Lots of things are making sence as the years blend together, and being able to read others stories help understand a little what is happening to my body.. My shoulders have always been a “sore” spot but they are now continually aching at night they are really bad… I can barely turn my neck at night…I keep thinking its the way I sleep, but I have now realized after reading this, that maybe that might not be the case.. I have had massages, been to the chiropractor, physical therapy to no release so now I guess, I must be a little more aggressive in my talk with my RA doc.. I just had a MRI on low back because my low back went out for no reason… I get so frustrated when you really don’t do a lot, a then you end up in so much pain… I read my MRI report and there are a lot of “spondylosis/chronic degenerative disc disease, canal stenosis, don’t understand a lot of what Im reading so until I see my Rumy, Im at a loss for words.. Im to go on a trip to Texas next week so to say the least Im a bit nervous…I can barely walk on my knees, Ive had Hyalgan injections in the right Knee, that have not helped, and steroid in the left… but I am going to see my grandson and daughter… what can you do… I guess theres always the dreaded prednisone, an pain meds OH JOY>>>> If this is the golden years…. Anyway thanks again for opening my eyes to what may be happening, I take charge of my life, I don’t believe all I read, I study an am well prepared for my dr visits… May all whom suffer from this dreaded disease find some peace,,,,Peace out….thanks again Andrew…

  • Andrew Lumpe, PhD moderator author
    4 years ago

    Hi Ava, I’m so glad you like my articles. Sometimes it’s hard to connect everything to RA and some of these issues may or may not be related. But that doesn’t diminish the fact that we’re suffering. Spondylosis means arthritis of the spine. Degenerative disc disease means that the discs between your vertebrae are breaking down. Canal stenosis means that something is pushing into your spinal cord. A lot of it depends on how severe these things are and what symptoms you’re having. Please make sure to see a good neurosurgeon or orthopedic surgeon who specializes in the spine and can develop a good plan for treatment (usually starts with physical therapy or steroid injections). Take care. Andrew

  • Shirley Sanders
    5 years ago

    Thank you so much for sharing this. I too have ” degenerative disc disease “, C3-C5. I never gave it a thought that my RA could be the culprit. I have gone through therapy and injections with no discernible difference.My rheumatologist doesn’t believe in pain meds so I pretty much deal with the pain and numbness. I am unable to take any R.A medications due to infections and violent reactions. I now have information with which I may discuss all of this with my doctor. The discussion of the bowel problems hit home as well. Once again, thanks for educating me .

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Glad you liked the article and hope you find some answers and relief for your neck.

  • Scott Howard
    5 years ago

    I was just diagnosed with RA, but in retrospect, I’ve been symptomatic for 10 years. On top of that I get these terrible headaches which were originally diagnosed as migraines (30 years ago). Fast forward 25 years and, after a move, I found a neurologist who was willing to take another look and not just accept my original diagnosis. He found that I have herniated C4 thru C7. I’m now wondering if my RA is a factor as well.

    How is your recovery going? I’ve always been leery of surgery on my neck.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Hi Scott, sorry for your recent diagnosis. That seems to be the norm…symptoms long before diagnosis. That’s too bad because treatment could be started and help keep the disease in check. Your situation sounds much like mine with migraines. My neurologist said that headaches could be related to cervical nerve issues. He calls it cervicogenic headache. But it’s always hard to tell and also hard to definitively link RA to degenerative disc disease.

    My recovery is going well. It’s been 4 1/2 weeks. Arm pain and numbess/tingling is mostly gone except with I’m more active. Still have some on and off muscle pain in shoulders but it can take months for nerve damage to heal. Any surgery should not be taken lightly. But when it comes to the spinal cord and nerves, there comes a point when permanent damage could become a concern and even an emergency situation.

    Take care of yourself.

  • Briana Doran
    5 years ago

    I’ve had RA since I was 2 in 1975. It has always been severe. Many failed meds, and several joint replacements. My numbness in my arms and legs started in March of 2008. It progressed fast, and by the end of the year, I was in a wheelchair. When I tried to walk, I had horrible leg spasms. I couldn’t even write for a while. I saw 4 different neurosurgeons, and none would take me on because of my advanced RA. It was too risky for them. I had stenosis in the C4 to C6 region, along with severe problems from the RA, like very mushy bones. The outcomes were death or paralysis, which I feel would be worse than death. My pain doc told me about a surgeon in St. Louis that is one of the country’s very best, Dr. Riew. People come from all over the world to see him. So we drove from CT to have him operate in August 2010. It was the scariest and worst time of my life. I owe my pain doc, and Dr. Riew, my life. The day after the surgery, I was up and walking again, it was like a miracle !!

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Briana, that is wonderful that you were able to get surgery and some relief! Stenosis on the spinal cord can be a very serious issue if it progresses. I was also worried that they wouldn’t do surgery since I have RA. Andrew

  • Annette
    5 years ago

    My doctor just said that he prefers to do nothing for atlanto-axial subluxation of the neck – not unless it’s very symptomatic. So far nothing to go to ER about after 32 years of RA.
    I also had CT and MRI of the jaw. He says no RA there but I’d be darn surprised if my jaw joints deteriorated to bone on bone with no help from inflammatory arthritis.
    RA feels like a ticking time bomb some days.

    I’m glad you got your answer and are doing well. That sure crimps your style a bit I bet.

    On the plus side my Dr is doing a study on pre-arthritis so will be following family members to see who does or does not develop RA. One son is worried since he had an experience with gout so this will be great.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Hi Annette,
    That’s wonderful that you’ve been able to stay away from drastic treatments for atlanto-axial subluxation!
    It seems that many RAers suffer with jaw problems. At my recent neck surgery, the anesthesiologist asked me to open my jaw wide to make sure he could get the tube in. He said that he has found that many RA patients have problems with the jaw.
    I do hope that RA does not visit your children!
    Andrew

  • Dana Sebek
    5 years ago

    Andrew: thank you for this wonderful article. I was diagnosed in 2010, and have had neck problems for years. Mine sounds similar to yours, but affects C2-7, so my surgeon said no way. Even if he fused some of them, it would put too much pressure on the rest. I trust him, as Others might be too quick to go to the knife. Unfortunately, I live in such pain. My rheumy says it isn’t RA, but I don’t believe him. I’m not convinced that doing x-rays is the best way to see RA. My initial dx, started with an MRI of my hand. Anyway, thanks for confirming what a lot of us already know, RA can occur any where.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Dana, I’m so glad you enjoyed the article. Sorry that you are dealing with pain. Andrew

  • Kathy P.
    5 years ago

    I’m glad your surgery went well, Andrew, and that you seem to be doing well in your initial recovery. Here’s hoping that all of your recovery will be a piece of cake! Get well soon.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Thanks for the well wishes Kathy! It’s been a week today. I’m doing as well as to be expected although I have an ice pack on my throat right now! Andrew

  • Kim Whitman
    5 years ago

    I was diagnosed with RA just this past winter. The symptoms came on suddenly last fall out of the blue. Initially, I was plagued with foot and hand pain, but over the last 2 months, the neck pain is increasing and it is so depressing. I wake with awful stiffness and I can barely turn my neck any time of the day. I have headaches and my jaw throbs. The pain radiates from the base of my skull. My rheumy doesn’t act too concerned and prescribed Tramadol, but hasn’t even done x-rays of my neck. WT__ is what I think most days. She I ask for them, go see an ortho? I am not sure.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Hi Kim, sorry for your recent diagnosis. This site is a great place to learn more and connect with others. Your symptoms sound a lot like mine. There could be many reasons causing this but it might be worth having a spine specialist (orthopedic or neurosurgeon) check it out.

  • Kimberly Alioto
    5 years ago

    I have had RA for 41 years. My dad had it. We both needed neck surgery. His was C1- C2 fusion with a battery pack and he wore a hard cervical collar. I had C 3-6 fused with a micro discectomy and instrumentation. I was petrified but sick of the continual pain and all of the other symptoms you described. It was one of the EASIEST surgeries I have ever had, and I have had many. I no longer have pain, I feel better than I have in years. I did not wear any type of collar post operatively. I did use a magnetic bone growth stimulating machine daily for 30 mins for 6 months. I am VERY PLEASED with the results. Try not to worry so much, it will be easier than you imagine. Good Luck!

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Thanks for the encouragement! The surgery actually went very well. I’ve had very little pain. My throat is sore but it hasn’t stopped me from eating anything. They didn’t send me home with a collar either. They actually want me to keep moving as long as the neck movements are small and not fast. I can already tell a difference as my fingers are no longer numb or tingling (could tell that even in post-op), and the shoulder/arm pain is way down.

  • Wren moderator
    5 years ago

    My thoughts are with you, Andrew. May the surgery go smoothly–and your recovery, as well. Keep us posted.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Wren, things went very well and I can already tell that it’s made a difference. I just have to keep telling myself to take it easy.

  • Betty Erard
    5 years ago

    This is a controversial subject. I also have had major neck problems with compression of the spinal cord. I was fused from C4 to C7 with instrumentation in 2010. I had been diagnosed with RA in 2008. I’ve been told that RA only affects the C1 and C2 levels as these levels have synovium and the other levels don’t. It would be interesting to hear other comments on this.

  • Jane Burbach
    5 years ago

    I too have had neck pain for almost 20 years and was diagnosed with RA finally in September 2013. While waiting for rheumatologist appointment, my GP ordered MRIs and found something similar to Andrew’s neck situation which significant neurologic symptoms and pain. Plus, we found an old and undiagnosed/untreated clay shovellers fracture of the C-7 – which is a broken spinous process. Who knew! I saw an orthopedic spine surgeon who recommended fusion surgery. The second opinion said I don’t need surgery now but will later. My rheumatologist recommended I hold off on the surgery and see if the methotrexate and plaquenil bringing down the inflammation would help. She also prescribed Cymbalta and gabapentin. I have been very fortunate that some or all of the above have really helped with the neck pain, et al and the RA appears to be in clinical remission. Clearly, Andrew, RA can affect more than C1 and C2!

  • Andrew Lumpe, PhD moderator author
    5 years ago

    I don’t buy the notion that RA only affects C1-C2.

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