Five Things I’ve Learned about Rheumatoid Arthritis in the Neck

I promised to write about what’s going on with my neck. It’s hard to sort out what would help others to know, so I made a list of five things I’ve learned. Sometimes, it’s about sharing our journey too.

Here are 5 things I’ve learned about Rheumatoid Arthritis in the neck

1) Do not ignore Rheumatoid Arthritis symptoms in the neck; get medical treatment.  Find a doctor who recognizes RA affects the spine. This might be a back specialist because there are myths that RA in the spine is rare.

2) There are no easy answers. If you respond very well to RA treatments, then that will probably be good news for your cervical spine. If you don’t, then it could be a complicated journey.

3) Monitor the “progress” of the RA in the spine. I know it’s a funny use of the word progress, but Rheumatoid Disease is progressive so you’ll probably need to have imaging repeated over the years if symptoms continue, which means finding a doctor to help you with this.

4) Treat the symptoms. It won’t help the progression issue, but please don’t suffer more than necessary. Living with painful spine symptoms also causes you to move other joints in awkward ways, creating more problems.

5) Be careful with chiropractic. The spine of RA patients can become unstable, either because of damage to supportive tissues or to the facet joints themselves. Chiropractic in the neck can actually be dangerous if there is any damage.

My journey with Rheumatoid Arthritis in the neck

strawberry birthday cakeA few months ago, the previous RFA (Radio Frequency Ablation) “wore off,” meaning the nerves around those facet joints had grown back. For me, that meant increased neck pain on the right side, resuming of the old shooting pains down my right arm, and terrible headaches from the back of the head around the right side.

Since the doctor had moved away, I had to be seen by a new doc in the practice before the procedure. Doc said it’s very common for Rheumatoid Arthritis to affect the neck this way and that treating the symptoms is all they can do at this stage. I knew that, but I was glad we were on the same page.

I agree with the doc that an RFA is a good way to deal with symptoms if they can determine which joint is inflamed. For me this has meant less pain medication during the 9 months or so while the nerves are quiet. For some people the relief can last longer.

A couple months ago, I finally got the RFA which was a very different experience than the ones with the previous doctor. I will write a separate post about that experience I guess. A few weeks later, I was still having symptoms. I got another appointment.

Doc said we needed to try an epidural at another location in the neck. And to follow that up in a couple of weeks with a facet injection higher up the neck. The facet injections are usually diagnostic and if they succeed can be followed with an RFA. So if the facet injection at C2 gives improvement, then they will do an RFA there eventually. That part I understand.

The epidural in the neck, however, was a new thing for me last Friday. The injection was very fast after a lot of very uncomfortable “positioning” by the staff. And my neck hurt pretty bad for a few seconds at the end, when I suppose a lot of material was taking up space in there and creating pressure. For the next few days, it was swollen and very painful to look down so I just tried to remember to not look down. I mostly rested and took meds.

It feels better, but it’s still very stiff if I try to look down. It’s a weird experience because I was so limber all my life. I used to place my hands flat on the floor when I bent over. But that was the me who carried 50 lb bags of soil or concrete too…

At this point, it seems that the symptom treatments for RA in the spine are somewhat trial and error. You need to have a doctor who will listen and try to find a way to help. In my case the rheumatologists never examined my neck or put anything in the chart about it, even though I always mention it. I found a practice that specializes in the spine and that’s where I’ve found the most help. They don’t seem to understand I have RA anywhere besides my spine, but it’s been good to know someone is helping me with the neck.

I do realize that one day, the symptom treatments might not be enough. I have friends who’ve had surgeries such as fusions to re-stabilize the spine. For years, I’ve used a soft collar to keep my neck stable when it seems bad. I did request a new MRI of my neck, so we will keep an eye on it as much as possible and I’ll let you know about that soon.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

49 thoughts on “Five Things I’ve Learned about Rheumatoid Arthritis in the Neck

  • August 21, 2012 at 11:20 am
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    I have terrible Psoriatic Spondylosis in my cervical spine. Several vertebrae have fused spontaneously. I too get the horrific “neck headaches” and pain in my arms. I cannot move my head up, down or to the side hardly at all. My facets are almost completely blocked by my PsA. (I have to be intubated through my nose when I have general anesthesia because I cannot tip my head back). My pain management doc told me that epidurals are impossible in the C-spine because of the upper body paralysis that they would cause. I’ve had multiple attempts at epidurals in my lumbar spine, however the facets were so tiny because of the encroachment of the PsA that there was no needle access. One doctor managed to go around the spine to the “front” and got access. I had a marvelous, wonderful, FOUR days of relief. And that was it. The pain was back with a vengeance. What other treatment of the C-spine is there??

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  • August 21, 2012 at 11:31 am
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    Hi Kelly, Did you have crepitus (creaking) in your neck prior to the neck flares?

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  • August 21, 2012 at 1:24 pm
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    My RA affected my spine at the same time it began affecting my small hand and foot joints. It was such a strong effect that for 27 years I was misdiagnosed with atypical Ankylosing spondylitis. Remember that spine pain might well be a symptom of RA and can be quite debilitating. I’ve had a number of epidural injections for pain relief in the neck (they helped for a long time) and for diagnostic purposes in my lumbosacral spine. This blog is the first I’ve heard about radio frequency ablation for pain relief. Thanks and I really appreciate your blog.

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  • August 21, 2012 at 2:30 pm
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    I am going through the treatment now, radio frequency ablation for pain relief. Having spinal fusion on my lower spine L5, L4, L3 a few years ago, I was not looking for more surgery especially on my cervical area. This has and still is a life saver for me. The migraines have subsided to only about 1 or 2 a week. I can now get back my quality of life I deserve, that we all deserve. I have friends that have had the spinal fusion and they are still in pain. I am cutting the pills now to about a fourth of what I was taking and I have only had one side (left) of the cervical completed. Next week I start the right side. Down time is minimal. I go in the morning to the outpatient surgical center and I am home in 3 1/2 hours. What is outrageous is the doctor wants me to do my normal activities around the house. Run the vacuum, light house work in general. What is amazing…YOU CAN WITH NO PAIN!! The noise level is still there due to the damage from the RA but I am not in the severe pain I have been in. My doctor is pleased with my progress and we are concentrating on the progression of the RA and Sjogren’s instead of all the NSAID’s, pain relievers and Imitrex.
    I encourage all to look into this. Find a great pain management doctor also. Get your life back or at least most of it without excruciating pain. My prayers and good thoughts to all of you. Don’t give up.

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  • August 21, 2012 at 2:47 pm
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    Thank God for this article today. I have severe RA and OA and scoliosis. I was athletic all my life despite that my spine is a mess. Various doctors constantly refer me for PT when I complain about the incredible pain. PT feels good at the time but does nothing else. By the time I get home all the pain returns. Most doctors I’ve seen shrug and say did you try asprin? I have pars defects, disc bulges, herniations of my spine. I hurt all the time. I’m so depressed and once again I am going for yet another MRI in the morning this time of the Cervical spine. Living with horrible pain is wearing me out mentally and so many of my doctors say you can’t have RA in the spine. I didn’t know they could do facet joint injections in the neck!!!!! I’ve always had them in my lumbar area but that’s all. Now I’ll ask for more!!!! THANK YOU GOD!!!

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  • August 21, 2012 at 4:35 pm
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    Always, always, get an opinion by a reputable neuro surgeon.

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  • August 21, 2012 at 5:33 pm
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    Kelly – you mentioned being very flexible once upon a time. I was, too, and so are all my kids. Don’t leave me – this is pertinent! I took my 16yo in because he was having joint pain. Of course I feared he had inherited my RA. Turns out he has Joint Hypermobility Syndrome, as do the rest of us. It only rarely causes complications, but they can be from mild to severe. It explained a lot about me that my RA never quite had. I found a link that seems to go with the info the doc gave me, but I’ve never heard of the doctor who wrote it. http://www.dynakids.org/Documents/hypermobility.pdf

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    • July 20, 2014 at 3:23 am
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      Hi Angela
      I know you posted awhile ago but wanted to say myself and children all hyper mobile and all three of us have RA. We were sent to geneticist and we’re told we have Ehlers Danlos. A symptom of it is joint hyper mobility . It can have many symptoms ….. A few of which are joint damage and extra pain.

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  • August 21, 2012 at 5:40 pm
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    Oh, one thing his article didn’t mention that the one I have did. Hypermobile tissues do not always heal well or quickly so surgery should be avoided if possible. Also, some people with JHS bruise easily and may require more blood transfusions during major surgery. Something else to look into.

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  • August 21, 2012 at 9:14 pm
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    I’ve been told that a soft collar won’t do much more than warm your neck (which can make you feel better, but…). If you need to keep your neck stable e.g., when in a car, you may want to check out a “school master’s collar” (at least that’s what my PT called it) like this http://www.necksolutions.com/head-neck-support.html. There are a lot of other interesting products for your neck on that website (I have to go browse now).

    Hang in there, Kelly.

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    • August 21, 2012 at 9:40 pm
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      wow, love this gadget collar! Mine was given to me by a dr & I wear it snug enough to limit movement, but i can see these would give a lot more support.

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  • August 22, 2012 at 12:42 am
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    Hi Kelly, I had RFA 3 times on my lower spine and it helped for periods of time. I wish that more people knew that RA can attack your spine. I suffered with neck and low back pain (two surgeries on my neck) until one orthopedic surgeon finally questioned the location of my pain. It was on both sides of my body and typically herniated disks don’t cause pain in both sides. I have seen so many back surgeons and not one recognized this til this past year. The amazing thing for me is that since I have been diagnosed and started RA medications how much less pain I experience in my back and neck. Of course new problems have cropped up, but I wonder why I had to suffer for so long and why nobody recognized this! I really think that more education is needed about the spine and RA for doctors and patients! Thanks for all that you do….

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  • August 22, 2012 at 7:33 am
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    Kelly, my RA doc always asks about my neck and back and if I have any pain at every visit. It’s also part of the questionaire that I get at each visit. I have some lower back pain from and old injury that kicked up big time with my onset – likely because of inflammation. I have only had neck pain with my onset flare – thankfully! But he has me turn my head and move my neck through a full range of motion at each exam and asks about pain. It’s good to know that he is looking for this. It’s hard to believe that there are rheumatologists out there denying that RA affects the spine – where did they go to school? Maybe we should ask they to get recertified for the updates since they quit paying attention!

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    • August 22, 2012 at 8:36 am
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      I can’t remember if this is your first rheum doc or not – sorry, Leslie. But, either way, THANK you for posting what happens at your appointments because it shows what should be done and that encourages other patients to find a dr who does examine joints, especially the neck, and who does use questionaires. Unfortunately use of those methods is too rare according to published studies.

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      • August 24, 2012 at 8:08 am
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        This is my second rheumatologist, the first diagnosed osteo with fibro with no xrays and in spite of continued random swelling and other symptoms kept insisting it was a “mechanical problem” because I was seronegative. I went to the Cleveland Clinic – the difference is night and day! It is so good to be treated by a doctor who actually listens to you, who takes the time to really examine you, who answers your questions and who treats you like a partner in the process! How I wish that everyone with RA could have this kind of treatment!

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        • August 28, 2012 at 8:10 am
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          Thanks, Leslie. That’s what I thought. So, I’m wondering how we should best ask you if we took a poll about care – your care now is superior & that would be part of what we want to know – but we need to also report on what you experienced with the misdiagnosis/dismissal of your presentation – People often tell us that they have seen a long string of docs before being taken seriously. How would that be measured? Any ideas how to take all of that into account with a poll question?

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  • August 22, 2012 at 8:58 am
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    Thank you for writing this. I can identify with your pain and struggles. I did have a fusion in 2009 on 2 disc’s but I continue to have pain and issues similar to yours. When I write I can feel your pain, I really can, it is a never ending battle.
    Thanks again for this!
    Dianne

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  • August 22, 2012 at 9:13 am
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    Kelly, I had two-level cervical fusion in 2008. At the time of my fusion we did not know I had RA. But, no one had even thought about it being RA related? I am now learning why by reading your blog. When I had my knees replaced my surgeon wondered if I had RA and it wasn’t showing up in blood work yet. He tested me years ago and everything was normal. But he told me years ago that he really felt one day down the line something in my labs would show up. Sure enough, this past Spring my labs that my rheum did finally showed something was going on, my sed rate and C-reactive protein were both high. Finally a diagnosis. It’s been rough since my diagnosis. I haven’t had a normal time since. I know now that my neck problems ate from the RA. And you are right, the rheum never mentions the neck. From what I’ve learned so far my rheum is just trying to find a RA med that will agree with me and work. My RA has been in a constant flare since my diagnosis. I’ve not felt well since. So, I just pray that soon we will find the correct combo that will work. I’m having another facet injection this Thursday and we are talking about the RFA. Thanks for all the time you have devoted to RA and to help the rest of us.

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    • August 22, 2012 at 9:55 am
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      This is one of the frustrating things about RA data – most of what is caused by our RA is not documented as RA. My neck symptoms started a decade before my dx. They could document the problems but couldnt tell me why. Along w/ the flares in feet, hips, and shoulders, it was all just caused by “I dont know”

      I hope the injection goes well for you this week. Yes, you’re right – finding med combo to work – that is best solution & the holy grail!

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      • July 20, 2014 at 3:44 am
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        Hi Kelly
        I about fell over when I found your story and others on here withe cervical issues and the many not so great Dr.s it seems we all have been too. I had RA for 3 yrs and was hanging in there on Enbrel. Then I got an infection that lasted months and I had to stop Enbrel. A month off Enbrel and the most debilitating headaches of my life would happen every time it walked or did anything besides sit there. I went to my RHEUMY who said RA doesn’t hit the neck. I went to Neuro after Neuro. I tried Cryogenic ablation without sedation to the head.NEVER DO THIS! I tried RFA to the head with no sedation. Finally I was sent to pain center after 25 visits to ER in 6 months. Their RHEUMY told me that Before biologics the number one symptom of RA was cervical involvement. Drs now usually don’t see cervical involvement as biologics do a better job of halting RA. So if you don’t see it! It’s not there right?! I was started on RFA treatments to both sides of my cervical facets every six months. I haven’t been to ER since. You might need a letter of necessity from your Dr for insurance company. Don’t give up and push for the RFA if you’ve tried everything else. They have been a lifesaver for me.

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  • August 22, 2012 at 9:55 am
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    I was diagnosed in March w/RA…seronegative. My neck pain/stiffness started about a month or so ago. Naturally, I thought I slept on it wrong or something. It creaks when I turn my head and sometimes it is a sharp pain, but it always feels stiff lately. I see a chiropractor today (and now, Kelly, after reading your post, I’m a little scared!)Hopefully he will be able to give me some relief, but I will tell him to be gentle w/my neck. I also have scoliosis. I am really getting concerned about how fast this disease seems to be working in me. I was on plaquinel(which left me pain free for 3 months!), but Rhuemy took me off because of stomach upsets. I’m now on MTX and Tramadol. Only been on it for 3 weeks now, not noticing much yet. Thank you Kelly for this informative site!!

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  • August 22, 2012 at 12:03 pm
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    Thanks for the great information about RA and the neck. My neck is a big issue for me but not to my Rheumatologist. I have dizziness and pain and I am certain it is damage from RA. I am told that I have “some osteoarthritis” in my neck but probably isn’t causing me any issues. I will definitely research and find someone who will listen to me!

    Thanks!

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  • August 23, 2012 at 2:29 pm
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    Could not move neck – horrific pain turning it even went to Mayo- nothing /pain specialist did two epudurals to no avail/ horrible sleepless pain continued BUT this was the time when me SED went way up. Went to therapist and he professionally manipulated my neck area and back- NO NOT A CHIROPRACTOR! he said tension built up and I was so tight and after some treatments I am much better
    However it appears SED RATE has a lot to do with every single body part and this was the same situation. SED AND CRP are worst enemies
    I have helped it also with adding curcumin, krill and C as well as other RA drugs and experimenting biological. Found that my Interleukin 6 AND TNF ARE BOTH HIGH SO READ THAT Remicade in new study will help both. We will see. /j

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  • August 24, 2012 at 7:17 am
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    Recently I was in a car accident and had some whiplash on my already painful neck. It sure made sleeping difficult. My husband gave me his buckwheat pillow to use. It really made a difference as it stabilized my neck better than my regular pillow. It may not be for everyone, but it sure helped me.

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  • August 24, 2012 at 8:32 am
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    Hi Kelly, I just wanted to ask about swelling, I just have all this swelling, my wrists and hands, my ankles and tops of my feet just stay swollen. My wrists hurt bad. I’ve been dealing with this since March. Is this an RA thing?? Yesterday morning was awful. I did my 6th Enbrel injection and took two prednisone. Finally by late afternoon it was some better. I just can’t seem to get my wrists and hand swelling to go away. What’s your experience with this and any suggestions?? I tried mtx, then Arava, but had tummy issues. I’m so frustrated and feel so alone. I have no energy at all. Thanks for listening. Susan

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    • August 28, 2012 at 8:19 am
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      Hi Susan. I’m sorry I was offline a couple days – I hope youre checking back for replies – The swelling sounds like it could be the RA – especially if the prednisone improves it. Have you gone into see the dr when it’s like that? The “energy” also sounds like RA -that is very common due to the disease activity. Youre right it can leave you frustrated and alone. I hope you are feeling better soon. If the Enbrel does not improve it alone, you might need to add back the mtx – they can start that at a low dose and in an injectible form so there are fewer tummy issues.

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      • August 28, 2012 at 9:15 am
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        Thanks for getting back Kelly!! I know you stay busy. Yea, my rheum did increase my prednisone back up and the swelling is better, so that did really prove to me that it is RA related….Uuuggghhh…..at least I do know. He is having me take 10mg then another 5mg at bedtime. That has seemed to work. I was trying so hard to come off it but I can’t seem to now. Now, my limbs are like noodles. I hate this feeling. I just pray that I can have a time soon where I actually feel better!! I am going in tomorrow so I will talk to him about adding the mtx back maybe in injection form. I have a feeling I am going to need it. I hope I can have some days of feeling better soon. So far its been more down than up. Thanks for responding to me. Hope you are well!! Susan

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  • September 1, 2012 at 9:56 am
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    Thank you for your suggestion to see a neurosurgeon. I’m trying to find one. I got referred by my pain mgmt doc to 2 spine surgeons. One turned me down for my insurance type and the other had horrid reviews on the web. I would never do surgery except as a last resort with proof that it was needed. Can a patient refer themselves to a neurosurgeon? What work ups should I have in hand before I go for first visit ? I 2 week old have a cervical MRI that shows several differing types of damage from C2-T1 that are significant I’ve done weeks of PT that make things worse, etc. Not a new story I’m sure. Again thank you for your reply!

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    • September 19, 2012 at 10:18 pm
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      the neurosurgeon should only operate if it’s a last resort anyway – they are the ones to help you know when that is. the management in the meantime is also important – both pain management and monitoring the structural soundness to know if an intervention is needed.

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  • September 9, 2012 at 4:58 pm
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    Hi kelly, I wrote about my first symptons starting in my neck & back before I ever was diagnosed. That was 1& half years ago. My Rheumy still refers to it as Osteoarthritis of my spine & neck not RA. Have a hard time having anyone taking me serious about my neck ( Drs that is) Don’t know how they can say it’s not part of RA, were talking about more joints after all! I have bad neck headaches and back pain if I look up too long sometimes I get lite headed. Last summer had right hip replaced, showing signs of left one getting worn badly. My Rheumy still tells me to watch my hands, knees, feet nothing about other areas. Getting frustured with Docs.

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  • September 15, 2012 at 4:32 am
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    One treatment I have not seen commented on is the use of Botox injections. I was having major pain and related muscle spasms to the point where I could no longer move my neck. I had went through all the different types of injections including radio ablations. I am having my second set of injections next week, cannot believe I am looking forward to them. We will be backing down on the dosage a bit due to “interesting” side effects like not being able to hold my head up after a long day, all in all Botox has been a new magic bullet for me.

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  • October 20, 2012 at 2:43 am
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    Hi Kelly,
    I just wanted to cry reading your posts about RA attacking your cervical facets. Ive searched internet looking for others with my symptoms. No luck till now.I’m 41 and have been diagnosed since 34. I live in Austin, Tx. I’m sero negative so finding a Rheumy willing to treat me was so hard when u don’t have the positive blood work. I also presented with rheumalogical vasculitis.I was told I was to young to have it and that it came with decades of disease.I had to go to dermatologist for biopsy and then brought results to Rheumy. 2 yrs ago I caught infection which forced me off biologics. Soon after I had such horrible pain in neck and head especially with movement it landed me in ER over twenty times. All the Rheumys here denied that neck was related to RA.mFinally landed at pain cntr. They cryo&RF ablated occipitals.. No help.finally RF to cervical facets and I get great relief for 6 months. Then time to do again. I flew to Cali for 2nd opinion and was told it was RA. My doc here still denies its related. By far it’s been the worst pain I have ever experienced. A little frightening when over 10 Rheumys don’t believe u can have disease there. Some don’t believe u can have RA if sero negative. What kind of care is this?sorry to be so long winded .

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    • October 20, 2012 at 8:32 am
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      Hi Sarie,
      No worries – all those details are important. The experience you had is repeated all over this country (and some others I’m familiar with) so it needs to be told over and over until something is done about it.

      You said: “A little frightening when over 10 Rheumys don’t believe u can have disease there. Some don’t believe u can have RA if sero negative. What kind of care is this?” This has been on my mind so much and I spent the past few days trying to decide the right way to write that in a blog post. I want to try say it just right and address the problem head on, and you sure summed it up well!!

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  • November 30, 2012 at 5:40 pm
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    I have RA and it is affecting L4/5 and I now have a synovial cyst – I get an ultrasound of it next week. By mid afternoon real painful.

    Also have C2 subluxation of 6mm and joint destruction, no impinging of spinal canal as yet. Neck crunches and painful down one side into shoulders and L arm.

    Neurourgeon has not mentioned RFA or Epidurals so will ask next time.

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  • December 3, 2012 at 11:00 am
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    Kelly, you are one of the bravest, strongest people I’ve ever known. I am constantly referring back here more than any other RA help page. You keep me inspired to keep spreading awareness any way possible & you’ve helped me to know I am truly not alone. My RA hasn’t gotten to my neck yet (at least I think it’s still just the fibromyalgia there) but I can imagine how frustrating it would be to have to deal with all the injections & then to be stiffer than usual & not be able to look down. Thank you for sharing all of your adventures & trials so that we may never feel lost or alone with this horrible disease. I’ll be praying for you & your family. God bless!!!!

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  • December 6, 2012 at 1:49 pm
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    I have just been told by my primary doctor I have Rheumatoid Arthritis. I am in a lot of pain in my knees, back, neck and feet. I had thought it was due to a foot injury that caused me to walk “funny” but now I believe I have been suffering for 2 years needlessly. However, reading your posts and blog, I can honestly say I am scared out of my mind. I have my first appointment with a specialist in a few weeks.

    What are some important questions to ask on your first visit?

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  • December 27, 2012 at 1:14 am
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    I have posted elsewhere that I was diagnosed with RA March 2012. My RF and CCP were very high. Ultrasound of hands and feet showed erosions when xrays and MRI (knee only) didn’t. My CRP and SED have always been normal. I know I am deteriorating at a rapid rate. My rheumatologist is incredibly laid-back. I’m just on MTX, plaquenil, and now sulfasalazine + low dose prednisone. I can’t do Biologcs anymore because of predisposition to infections related to another congenital condition. Recently, I’ve watched my upper body deteriorate and mobility become significantly impaired. I have lost range of motion in my neck, have increased pain and more difficulty with walking and lots of activities generally. My rheumy just diagnosed me with a chronic pain disorder – which can be easily discounted as psycho-somatic if doctors so choose. He says it is the chronic pain disorder and not necessarily the RA that is causing loss of function and disability. I have not had any further xrays, CT scans or MRIs to address neck and back pain since first diagnosis. My GP nor the rheumy referred me to any other specialists. They just put me on an opiod and pretty much are saying “have a nice day- and go away”. I insisted on having another xray of my neck a few weeks ago. My GP said he really didn’t want to do it and didn’t want to think about another condition on top of RA. The diagnosis on the xray report is now cervical spondolytis / degenerative disc disease. Compared to my xray in March, there are more discs involved, more severe degeneration (moderate not mild) and now bone spurs (osteophytes). The facet joints don’t show arthrosis (I think this means no arthritis but I don’t know for sure). The initial CT of my spine showed mild disc bulging L4-L5, a chronic central disc herniation with reactive osteophytes formation around it. L5 articulates with the sacrum on the right. Disc space were intact. I would love to hear what others suffering with these symptoms recommend I do – what specialists should I ask to see? What tests and treatments should I be asking for? The occupational therapist that was supposed to be ‘helping’ basically painted a picture of me as a malingerer so now that is on my medical record. You all are my inspiration. When I hear stories of people with RA just plowing through to demand answers – doesn’t matter if it takes 10 rheumatologists or several different specialists. I am inspired. Thanks for listening and any and all suggestions are welcome.

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  • December 27, 2012 at 9:06 am
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    When my neck was very very bad and I could not turn it,it was when my SED rate was high.I even with to Mayo. They did nothing. When one pain doctor did two epidurals that did absolutely nothing. I finally joined a a B cell clinical trial study and that brought my SED down. Inflammation as we know causes all the damage.
    I had waited too long however for help.

    Damage to my joints from a high SED was done. I had joint replacement and still need another hip replacement.

    But, AN UPDATE, I want to tell you that after failing all biologics which at first worked like a miracle (Simponi, Humira, Enbrel – Remicade did nothing) I am NOW taking XELJANZ. I got all the copays from Pfizer and paid very little for a three month supply. normal cost $2500 month.
    IT HAS BEEN TWO WEEKS ON XELJANZ AND I AM 80 PERCENT IMPROVED. I AM KEEPING MY FINGERS CROSSED FOR XELJANZ IS NOT A BIOLOGIC, TAKEN ORALLY AND I DO NOT HAVE TO GO FOR INJECTIONS OR INFUSIONS. SO FAR, IT IS WORKING!

    Call Pfizer for card for copays on what insurance does not cover. And if insurance does not cover anything, perhaps you can get even more from Pfizer, for they want this drug on the market to get results because of the millions they have spent on it thus far.

    Reply
  • April 5, 2013 at 9:45 am
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    Kelly thank you so much for this post! I learn so much from reading your blogs and web site. I was diagnosed with degenerative disc disease several years ago and suffer from severe neck and back pain. It has never occured to me that the neck & back pain could be in any way related to my RA. I will definitely bring it up at my next appointment.

    I was diagnosed about 2 years ago w/ RA, but have had symptoms for years. My regular doc would never refer me to a rheumatologist because I’m seronegative, so he didn’t believe I could have RA. I was finally referred to a rheumy a couple of years ago after a podiatrist did an mri on my left foot & saw that I had bones fused. As soon as the podiatrist saw the MRI, he told me I needed to see a rheumy. And my rheumy has told me based on the bone degeneration in my wrists & hands, she thinks I’ve had RA for several years. And now my regular doctor is convinced I most likely had a form of JRA – funny how he’s changed his tune on if I have RA (LOL).

    Reply
    • April 5, 2013 at 9:54 am
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      So many of us end up realizing the same thing – that it started years before. Reading spine experts, you learn that neck is a common place for RA to attack early or first. I finally realized what caused my cervical spine issues when I realized that RA affects the neck. I hope your rheum doc will examine your neck or prescribe necessary treatment – if not be sure to see a spine specialist anyway to keep an eye on it. good luck.

      Reply
  • June 4, 2013 at 8:32 pm
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    Hi. I was so wondering if you have blood work that showed u have Ra. Like crp, rf, sed rate… Also did MRI show anything for Ra. My reumotigst says I have it And thAts proba my why my neck hurts. But I also have a cyst in my spine at t2 so not sure if spinal fluid pressure is causing pain. I do know my neck is twisted on X-ray. MRI never says anything Do the people u know who have had surgery say it helps? Thanks so much

    Reply
    • June 5, 2013 at 1:26 am
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      Hi Amanda,
      Yes, I do have positive bloodwork, but there is not really any blood test to show one has RA. Many have negative blood tests. http://www.rawarrior.com/blood-tests-for-rheumatoid-arthritis-part-2/
      The anti-ccp is the most specific for Rheumatoid disease. And the crp & sed rate are often normal, even with damaging disease activity.
      Imaging – MRI or xray or ultrasound or nuclear bonescans- can sometimes show damage from disease or give indications of disease activity, but not always.

      If your neck is damaged, you need to see a spine specialist such as a neurosurgeon who can help you know whether surgery is needed or would give you relief. He or she will order the imaging needed. If the spine is unstable, surgery might be needed to stabilize it, but a spine specialist should help you keep an eye on it to know if and when it’s needed. The rheumatologist is usually not the one who can help determine this.

      It’s 130 am here so I hope that makes sense. Good night.

      Reply
  • August 13, 2013 at 11:34 am
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    Hi Kelly. I have been told for the last 4 years that RA doesn’t effect the spine and have been struggling with debilitating thoracic, lumbar, and sacral pain which they have now diagnosed as Scheuermann’s Disease (after 4 years with no real diagnosis). Now I am in the process of doing medial branch blocks and hopefully RFA if my insurance covers it. Supposedly, they don’t like to cover the thoracic spine as it is “investigational”. Well, isn’t an angiogram done for chest pain also investigational and yet that is covered. I feel like I’m at the end of my rope with anxiety of finding effective treatment; they dangle a potential relief measure in front of me like a carrot and then say that it might not be covered. I just don’t have the energy to fight the system anymore and I feel like I’m loosing my grip on depression. My family asks me why I don’t do anything fun anymore and I feel like such a burden. This disease is really so awful. I am always tired from side effects of meds and have lost 25 pounds. I’m trying to hang in there but it takes every thing I have and I am praying to God that he will please help me in some way so that I can have some quality to my life. And people look at me and say that I look so good! When I feel like shit! Just having a down day (days), good to know I’m not alone. My middle toes are now starting to turn into hammertoes too; already got the bunions and tailor’s bunions like you. It’s hard enough to get old (I’m 42) but feeling old before your time sucks! I was also so active and strong before and I am trying not to get stuck in this self pity party. Just want to thank you for being there for us and helping us to know that we aren’t alone. Hopefully there are better (not as constant) days to come. My feverish feeling is better since I started the Methotrexate so that is a positive to be thankful for. Thanks for giving me a place to vent. Keep on keeping on I guess, God gave me 3 wonderful children to live for.

    Reply
  • November 15, 2013 at 1:55 pm
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    Hi, Kelly, thank you as always for this information! I was diagnosed three years ago but have had back and neck pain and muscle spasm for many years (I’m 45; it started in adolescence and I was eventually diagnosed with fibromyalgia and/or chronic myofascial pain syndrome until in my mid-20s I had polymiositis). Lately my neck feels very weird (unstable?) and I have blinding headaches that seem to start at the base of my skull. I’ve had occasional bad headaches before but never this many or for this length of time. I saw my family doc yesterday and she sent me for an X-ray of my neck. Do you know if an xray is sufficient to show whether it is the RA affecting my cervical spine? My rheumatologist says that my spine won’t be affected because my hands and feet show no joint damage on X-rays (good news,although they hurt and I’m exhausted all the time so I assume I’m having ‘invisible’ disease activity and inflammation). I’m wondering whether I need to ask for an MRI or other more detailed imaging to be certain what’s going on with my neck. I’ve been prescribed tramadol and/or morphine, but I’m afraid of their potential side effects and interactions with my other medications, and with two kids to shuttle around I can’t be zoned out all the time. I’ve started using medicinal marijuana (mostly edibles), which help a bit. They don’t really take away the pain they just give me a bit of distance from it if that makes sense. However, if there is a treatment that will offer longer-lasting pain relief with no drugs, sign me up! I have a really good family doc who listens and is willing to do whatever I propose that’s reasonable, but because she’s a generalist and I’m doing so much reading, we’ve reached the point at which I am educating her.. So I am empowered and somewhat freaked out by the necessity of understanding all of the symptoms and ‘complications’ (ie. under-recognized and under- or untreated types of RA damage) to ensure that I ask for and receive the best care possible. I can’t say it enough, what you are doing is amazing and this article alone has probably saved and extended lives of PRDs who would not have otherwise known how to interpret their neck pain and what to ask for in the way of treatments! Thank you,
    Lisa.

    Reply
  • March 6, 2015 at 10:30 am
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    Hi Kelly. Your site is so helpful! Thank you! It keeps me from feeling crazy. My RA is somewhat under control; I have flares once or twice a month in other parts of my body, but my neck is the worst right now. Until I read your site, I was under the impression that my neck was unrelated to my RA. My rheumy doesn’t acknowledge that it is part of RA. My only relief has been my chiropractor. The pain is so extreme that you will do anything to try and help it. And by anything I mean take pain medication that can be addictive. It also hurts to have a husband who thinks you’re just being lazy. Sorry, this is one of those hard days. Thank you again!

    Reply
    • October 31, 2015 at 2:04 pm
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      yes & amen on all counts Cindy. I hope your other doctors can address the neck issues even if the rheum dr doesn’t.

      Reply
  • October 7, 2016 at 8:31 pm
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    Hello there. I have had years of chronic issues, mainly in my neck. I would say it has gotten progressively worse over the last 5 years. I have suffered 2 miscarriages in the past 9 months. Both were very similar. Ending at 5 weeks 3 days and very low hcg levels with both. The biggest comparison that I made is a flare up of pain in my usual chronic pain issues and in addition my wrists and knees. Both these flare ups lasted about 2 weeks starting when the miscarriage would start. Naturally I went to my primary doc with my concerns and they ran several blood test. The only test that came back positive was an elevated CCP. My doc said it could mean nothing and to test again in 6 months. He also mentioned seeing a Rheumatologist if I thought it necessary. Thoughts?

    Reply
    • October 8, 2016 at 4:49 pm
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      Jennifer, I’m sorry about the miscarriages. I understand since I had a few of them too. The positive test for CCP antibodies is very specific to rheumatoid disease, but joint exams are needed to confirm a diagnosis. Fertility problems are more common with RD (and lupus) but it’s also possibly a thyroid problem or something else. However, I recommend you see a rheumatologist immediately because the best chance we have now for a remission of RD is early aggressive treatment. Six months is too long to wait.

      Reply
  • November 10, 2016 at 12:46 am
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    Hi Kelly, i know this is an old post but i thought is try anyways.
    I would highly recommend seeing a geneticist to rule out Ehlers-Danlos syndrome, as a few other posters have suggested. Since you mention being flexible and your neck moving out of place, this is highly suggestive if EDS Not RA. Although you could have both. Things such a treatment for RA (physio) ect. Would make EDS worse. Hopefully you see this and get re examined as many other posters have suggested as well 🙂

    Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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