Neck pain & headaches

[AnonLupi]

For the past week I've had severe muscle spasms in my neck and shoulders causing headaches. Everyday, all day. I have ringing in my ears (high pitched). I'm absolutely exhausted. Now I'm unsure whether to contact my rheumatologist about it because a. I'm not sure it's lupus related and b. I'm sick to death of medication c. My period is late (menopausal definitely not pregnant). Two weeks ago I was in the emergency room with a bicep tendonitis so it could also be that. I was given iv pain med and muscle relaxants... guess what? I had a night sleep and woke up not tired. The first time in over 20 years! Then bam the headaches.I feel like screaming! When people ask if I'm alright I've started saying No. Any advice?

😊

[scarlettyork]

I have lupus and lots of other autoimmune problems I get really bad headaches lately and neck pain think the weather here in UK has a lot to do with it . Also sleeping not well needing to get good pillows I also have aps

[Largather]

Hi, sorry to hear of your pain. You should contact your Rheumatologist, i assume he's a Lupus specialist as you have Lupus? Don't know which hospital you are with but most Lupus clinics have a whole team of different specialist doctors in them re our complex systems involvement. Should have a Neurologist on board for consultations, they are usually Neuromuscular also. Contact your consultant and say whats happening, you have nothing to loose. Might be unrelated but at least you would know. I see lots if patients with stiff necks at our clinic, it is a thing in Lupus. Good luck.

[Cath24]

It's possible that this is a nerve-related issue. How long has it been going on for? Document everything, keep a medical journal if you don't have one already. Do you also get restless legs, convulsions, seizures? All 3 are symptoms of lupus. I would say to do the basics first - make sure you don't have an electrolyte imbalance, or a deficiency in B12 - we always need to rule out the basics. Are you drinking enough water (not too little, not too much!) and being mindful of your sodium intake? High levels of sodium can also trigger flare ups. Balance out with potassium-rich foods. Perhaps it really is related to your tendonitis, and the medicine can cause headaches as a side effect (?), but it's important to rule out nerve involvement, which can happen with lupus, but is of course manageable. Hope it goes well for you and keep getting regular blood tests every 6 months. x

[lufibabe]

Hi, I have disc problems, and recently my neck pain has been quite unbearable with occipital headaches (back of the head), this would then affect my balance, almost a vertigo like attack. Tinnitus was also quite recurrent. I had gone to Pain clinic and mentioned this to the Pain consultant. He checked and told me that my occipital nerve was inflamed and impinged. He suggested a nerve block injection. I had it on Friday and viola...no neck pain, no headaches and no tinnitus upto now...feel like a new person. I wish i can get rid of the pain elsewhere in my body. So its possible its your nerve. Hope this helps and you can get treatment soon. Sending warm hugs

[AnonLupi in reply to lufibabe]

Wow! That sounds excellent! I'd forgotten to mention I also have tmj which I'm sure is worsening the pain. I will see a Dr on Thursday Thank you 😊 and I hope your success continues

[dg70]

I'm on Gabapentin for pain which I try to take just at night. Blocks the pain signals, if you have neuropathic pain, completely. I get to sleep for most of the night until it wears off. I tried without one the other day and woke up over 10 times and laid awake for half hour or more some of the time. Progesterone is good too if you are menopausal helps you sleep if you take one at night every night too but I had to move on to gabapentin to get any sleep in the end. They don't want to prescribe steroids anymore unless its a very short course and only a couple of times of year if absolutely necessary. My Rheumatologist said this week that honestly everyone would do better on steroids but the side effects are just too great which is such a shame as they are such magic pills when you get in a 'so much pain you cry out and can't move hardly' situation. A good rub of hemp cream was recommended to me on the joints that ache and cause pain this has been so helpful too and not as smelly as deep heat. It works very quickly and lasts a few hours. You really need to find out if you have neuropathic pain or wear and tear. I am on that road at the moment, just had an x-ray of back and hips and waiting for an mri next. I am guessing rituximab infusions may be next if its inflammation (rheumatoid arthritis). I always got worse a week or so before a period and then once it was over I got relief for a few weeks. It was like my muscles went to jelly and nothing was supported and the pain could be huge. A bit like when you are pregnant. Any small moves and your joints could be in agony. The same moves after a period were not nearly as bad. Anyway speak to your GP, I got the gabapentin through them not the Rheumy. There are other drugs like amitriptyline you can try but I did not get on with that one, gave me horrible dreams. I don't dream at all on gabapentin. Getting sleep at night puts a better outlook on life as far as is possible.

[AnonLupi in reply to dg70]

Hello 👋

I'm on steroids (medrol) long term , low dose. I have an antidepressant to help with neuropsychiatric lupus symptoms and plaquenil. This neck pain is newish, i have managed to get an appointment with a face dr (cant recall the professional title 😆) on Thursday as i think tmj could be the problem as its been terrible lately. If i have no answers there ill go to see my rheumatologist. I'm unable to use any hormone treatment (Dr's orders, he's a specialist in lupus).

You're right, sleep is so important I'd love to have a good sleep!

Thank you for replying and very best wishes to you 😊

[dg70]

That's good. When you wander into the realms of neck and spine then it can often be a Neurologist that you need to see. Trouble is with Lupus you often find pain is excruciating and flares up anywhere and then within a couple of weeks has gone. It's still totally confusing me but my shoulder, lower back and hips has been months that's why I am under investigation now. I nearly had a £1,000 root filling a few months ago. The tooth pain was next level and then when I was about to spend out on a re-root filling in one already done and it just subsided. It's just crazy all this! If we can't work it out, how can the doctors?

[AnonLupi in reply to dg70]

I know! It's crazy! By the time I've visited the rheumatologist things have often changed! I write it all down and just tell him everything. So far he's been a life saver, it's a three day round trip though which brings It's own problems 😅Take care, and I hope your investigation goes well x

[Bantamdyno]

Rheumatologist 😂 Iuse my tsubo😍

[AnonLupi]

*UPDATE* Ijust had my jaw x-rayed, there is a big problem. I see a maxillofacial surgeon tomorrow night. High probability it's causing the pain