I’ve suffered from a stiff neck for as long as I can remember, it was an early RA problem for me, soon after my hands and feet. Fast forward twenty years and I started having bad headaches but I’d just started on biologics so I blamed Enbrel. It was decided that Enbrel was giving me sinus headaches but I persevered because of the quality of life Enbrel brought me despite the headaches.
Fast forward another 10 years and I’ve developed pins and needles in my arms and hands. I was sent for an MRI to establish whether I had carpal tunnel again. Er, no! Medical emergency! I have a compressed spinal cord. The surgeon was blunt: your spinal cord is like the M4: it has four lanes. Two of yours are closed, soon it will be three and then none. You’ll be paralysed from the neck down.
I now discover that the headaches were cervicogenic and caused by the damage in my cervical spine which is extensive. The risks involved in my impending surgery are huge but infinitely preferable to paralysis or death. Either way it’s not good!
So the moral of my story is this: don’t suffer in silence if you get headaches and restricted movement in your neck. I wish I’d insisted on tests and caught this earlier. I may never fully recover my balance and fine motor control in my fingers - hopefully 50%. Plague your consultant for x rays and if necessary an MRI. And don’t attribute everything to your meds as I did!
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Witness2
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Witness thanks so much for posting this and I’m so sorry for what you’ve been through and still have to go through. I really hope so much that the surgeon can recover as much as possible.
An HU friend just alerted me to this post and I’m very grateful to her for this. I’ve had terrible headaches for 4 or 5 months - now daily. My GP has diagnosed cervicogenic headaches. Also my neurologist has agreed. I’m under rheumatology and neurology for Sjögren’s - originally diagnosed 8 years ago as RA.
Like you I had severe neck pain when my RA symptoms were causing polyarthritis and also my shoulders and the rest of me were madly kicking off at the start- in 2011.
An MRI of my cervical spine confirmed “significant” degenerative disc disease last year with some compression of my spinal cord but no cervical stenosis yet. The prolapsed discs are the C5-7 so this wouldn’t affect my neck or cause these headaches. My doctors are apt to blame ongoing dental work, small fibre neuropathy, Trigeminal Neuralgia and my posture while working and muscle spasms for this but I’ve tried high dose Diazepam with very little affect and my dentist assured me that my mouth and face pain is neurological not topical/ dental .
I saw my neuro physio today expecting her to give me exercises to help me - however she refused saying it could be that my C1 and 2 are affected by inflammatory or osteoarthritis but the MRI of my neck last year didn’t include them.
She examined me quite thoroughly and said none of it tarried with anything neurological or muscular so she asked me to go back to my sector rheumatology physio now (who referred me to neuro physio in the first instance) and request that she see me urgently.
I’ve been nonplussed ever since this appointment earlier and will phone the rheum physio tomorrow.
But meanwhile the daily headaches - which are far more intense than tension headaches - are a bit of a nightmare.
So your awful story is the kick I needed to push harder for more imaging and a referral to a neuro surgeon. I don’t know who to push exactly but I’ll make some phone calls tomorrow because I know my GP thinks it’s arthritis related but as the headaches have started quite recently and I’ve never had real headaches before - I think I need rheumatology or neurology to refer me for further imaging of my upper cervical spine now too.
Thanks Witness2. The reason I hadn’t thought it was my neck is that the headaches are so dominating and I don’t have much pain or stiffness in my neck. It just feels wobbly and strange all the time. My GP says this is classic cervicogenic migraine and the pain is referred. So I guess it has to become fairly bad in order to cause headaches like migraine rather than stiff neck as you’d expect. X
I have had a stiff neck for months now and I have been told it is arthritis either or oa/ra its hard to tell. I am going to see if I can have scans on it and the rest of my body so I know for sure how bad it really is in my body.xxxx
Maybe you’ll decide to seek advice Louise. I don’t want to imply that all stiff neck symptoms suggest a situation as dire as mine but I do think it’s best to get them checked out. I had x rays three years ago which flagged up a problem which wasn’t picked up. Perhaps if I hadn’t been quite so stoical it might have been! I’m not blaming my rheumatology team - if the patient is ‘asymptomatic’ (not reporting any symptoms) they don’t have the time or resources to focus. I always thought the headaches were Enbrel related so didn’t press for further investigation. Bit of a mistake as it turns out!
I had spinal cord compression in 2002. I visited GP (locum) 6 times and on each occasion she dismissed my symptoms, numbness and tingling down arms, shaking legs, extreme tiredness, could lay down and sleep for England, etc. etc., but on every occasion mentioned diabetes(?), BMI 21, 8 1/2 stone, healthy diet?? I knew it was neurological and suspected MS, but she never did a hammer test and in the end, after 6 weeks, I asked to be referred to a neurologist privately.
Within 2 minutes, the neurologist said I had a spinal cord lesion and I would need urgent neurosurgery on my neck. He knew a Neurosurgeon and I might have to stay in and have the operation that weekend. As it turns out, I had a laminoplasty, cervical decompression and fixation C3-C6 2 weeks later, to the tune of £8,250! I was told despite it being urgent, I could trip and be paralysed from the neck down, or even dead, there would be the normal 3 months wait on NHS. My children were 6 and 8 then and I was concerned they would be left without a mother.
I am left with a stiff neck and loss of sensation in finger tips, but other than that recovered ok.
I can only reiterate what Witness 2 says above, don't ignore numbness and tingling down your arms and if you think its neurological, insist you see a neurologist and get an MRI.
I have Sjögren’s with small fibre neuropathy and have lost most sensation in finger tips, face and feet. I have been told today by my rheumatologist that my cervicogenic headaches are likely due to confirmed wear and tear/ degenerative disc disease related due to prolapsed C5-7 with some compression of the spinal cord.
She informs me that these headaches can be due to muscle spasms caused by wear and tear to any part of the cervical spine. This doesn’t help me with the debilitating headaches much and I will continue to pursue this with my neurologist. Also it doesn’t explain my CRP of 26 last week, given that according to my rheumatologist, I don’t have RA.
I continue to feel unsure but I did just want to put the other side to cervicogenic headaches and to neck problems - it’s not always a sign of anything critical anymore than lower back pain and loss of sensation in feet or legs is usually a symptom of a medical emergency such as Cauda Equina.
These issues always need checking out of course but please don’t panic if you have these symptoms. Apparently much less urgent conditions can cause them too.
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It's all feeling a bit scary now!
Hi wonder if you can help me RA ?? 
If its not one thing it's another!
