Hi there. I have had RF positive RA since 2011 diagnosed very quickly due to my GP being very on top of it. I started off being diagnosed with palindromic rheumatism where I would have flares for a couple of days and then go away. These happened from a few times per month to every few months. I am on hydroxychloroquine and sulfasalazine. My rheumatologist says it is progressed to RA even though I don’t have the classic bilateral joint involvement, morning stiffness or any pain or stiffness in between flares. They did determine though (by accident) that I have some erosion in one toe in my foot.
Just recently, I woke up one morning with a really stiff neck which I could barely move in any direction without pain. I also felt tenderness at the base of my skull where it meets the neck and pressure at the back of my head all the way up to the top for a couple of days. I never had any flares in my neck previously, only in shoulders, wrists, hands and feet (but always one joint at a time). The neck pain and stiffness were fairly bad for 1 week but did get better over the next week after that. I am about 4 weeks out and pain is gone and range of motion is good. But I do still feel a bit stiff and tender if I move too far to one side or the other. Problem is my rheumatologist doesn’t think it’s RA as she said I don’t have any other active inflammation (haven’t had any flares in a long while or any stiffness at all). I’m worried because I understand RA can affect the neck and it can cause some scary things to happen if it’s not treated. Sorry for the long post. I’m wondering if anyone has experienced this and I you have any advice on how to approach it with my rheumatologist again.
It sounds as if you slept awkwardly & put pressure on some nerves in the occipital region at the bottom of your skull. As your rheumy has examined you & doesn’t think it is RA related I’d stop worrying about it….as tension is the last thing you need. To be on the safe side ask your rheumy about seeing a physio.
I too was diagnosed with Palindromic Rheumatism & exactly as the rheumy who diagnosed me forecast it morphed into Sero+ RA within two years.
I too never had bilateral joint problems- just most joints hurt most of the time …but that was nearly 30 years ago & I am now comfortably settled on RTX infusions every 9/12 months. So do stop worrying about your neck. Mine was badly damaged in a car accident & I had really scary cervical spine surgery, , but it didn’t cause any future RA problems …necks are more resilient than we think. . .so relax & ask about seeing a physio.I still do exercises every morning.
Thank you for your response! I really appreciate it. The problem is, I wasn’t technically examined by my rheumatologist, she spoke with me over the phone after one week of onset - just as it started to feel a bit better. She didn’t think it was related at all but it is still a bit stiff and tender 4 weeks later.
I get exactly the same thing- its definitely a RA 'thing' (for me anyway) AND my bloods (CRP and ESR) have always been normal when it happens. I call RA a 'hoaxer' disease as it really for me offers the the strangest of symptoms above and beyond the 'normal' ones. I find its a little better if i sleep as 'flat' as possible so my neck/shoulders are not elevated in any way. Keep a diary too so you can see how a pattern may emerge. Mine comes and goes- lasts a few days, or a week and then totally disappears and i think 'oh i must have slept this way or that' to cause the pain. Ive got used to it now as like many things with RA! Good luck x
Hi, thanks for your reply! I wasn’t too concerned at first but it has been 4 weeks and even though it’s much better, it still feels slightly sore and stiff. I just don’t want to ignore it in case it is an RA flare and the continued inflammation of any begins to cause damage. My CRP is also normal right now. It’s hard to know which things are related to RA especially when I haven’t had a lot of flares since being diagnosed (and never in my neck).
Thanks for all your replies! I’m going to follow up with my rheumatologist.
Also ask for a scan/x ray of neck/shoulders/spine/even brain scan etc- they found nothing wrong with mine yet the pain at base of neck, lower part of base of head, also near ears and headaches was awful and as said my bloods were normal. ive had RA for nearly ten years. Came out of the blue at 55 years old. I thought id pulled a muscle (dont we all!!) but it presented in shoulders (thought id had Rotator Cuff thingy, then went to Stomach.. Then the Dr said oh lets try a RF blood test- that came back negative then they Dr said 'lets try the CCP' and it was positive with a titre level of 59. You need a really good experienced Rheumatologist its a complicated disease with many twists and turns-good luck and push for scans/xrays/stats/check what your titre level is now from where it was as the start of the diagnosis!
I had the same issue as you with my neck. I woke up one morning and the pain on the right side of my neck was extremely uncomfortable, I assumed It was the way I’d slept. After a week of no improvement I went to my GP who sent me for an x-ray. It turns out I have osteoarthritis in my neck and the only pain management I’m receiving for this is physio which is helping a lot.
I have alot of issues with my neck,head and jaw, since I have been on biologics it's helped alot.
My symptoms would come and go, I found using the heat pad invaluable and I also use a mouth guard at night and that's saved my jaw (I would also get head pain too, honestly it's never ending!).
I've been diagnosed with "inflammatory arthritis" which they say is probably RA but I belive I have psoriatic arthriitis (or both!).
I've found with rheumatology there really is no definite answer from the experts sometimes. I was told my jaw issues were due to fibromyalgia until I had a MRI and was lit up with inflammation (I had to pay privately for a consultation with an ENT consultant to discover this).
Don't ever doubt yourself, you know your body, Inflammatory arthritis has so many bizarre and random symptoms, so much more is yet to be researched about it. One day it's fine and the next it can be gone too so it messes with your mind a bit.
I would.mention it to your rheumatologist and emphasise how much pain you are in. My bloods are negative for all things RA but my CRP is always slightly raised (but only midly) , I was in a terrible state and my CRP was only a few up, it's not a true reflection.
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