I was just wondering if anyone could help me/if anyone has had this before? I apologise in advance as I don't know everything about RA! ♥️
I've been on Cimzia for a few months after being changed from Benepali due the fact it stopped working, however have been having awful neck pain for the past few weeks/a month or so - it's almost as if it feels like I need to roll my neck but it's so stiff that I can't/almost feels like there's wall filler or something in there! Haha. My neck has been making quite loud popping noises which has been making me feel uneasy, but the main thing seems to be that I've had awful headaches for the past 3 weeks pretty much every day and it feels as if it's coming from my neck? They seem to be worse at night too! I don't know if this makes any difference but I'm 27 and was diagnosed when I was 22.
I was just wondering if anyone else has had this/if it could be related to my RA?
I've contacted my rheumy team but am still waiting to hear back X
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I get exactly what you say (I have it right now) so big gentle hugs coming your way. I find when it really starts going for it a hot water bottle really helps. I bought a special shape one from amazon for necks and Its my new best friend !
I am currently not on any medication and would say it's one of my most painful symptoms of RA and when it really gets going it can make me feel sick.
I get a little dizzy with it too, I told my rhematology nurses about this and was told its par for the course with inflammatory arthritis.
Maybe your new medication needs a little longer to get working ? Maybe have a word with your rhemy nurses about it ?
Sounds like cervicogenic headaches maybe? A posh name for headaches caused by problems in your neck. Horrid!
Do try to keep moving your neck, very small gentle movements of course. But if you don’t it could get worse. And look at your sleeping position and pillows. You might find a memory foam pillow or neck brace pillow helps.
It could be a direct result of RA, or secondary arthritis triggered by the RA inflammation. Or just a temporary pinched nerve... maybe also discuss with your GP.
I think we must sleep in some really awkward positions too and haven’t a clue aren’t doing it! My neck improved a lot over the years so it doesn’t have to stay painful forever. As RA inflammation has become less over the years, so has the neck pain. It’s just background now (touch wood!)
You can get a lot of grizzley noises in your neck. When we turn our heads gently from side to side to look at each shoulder in pilates our teacher (who is also a physiotherapist) says just to ignore any grinding noises we hear (provided they don’t hurt) and that she has them too. Don’t think I get popping noises although I get popping in other joints, in fact in class we all have joints that pop from time to time.
I get what sounds like similar headaches. A locum doctor I saw years ago said they were occipital headaches and prescribed some sort of gel to massage in. I thought it was the weirdest thing ever and that he was completely mad but I did what he said and sure enough the headaches disappeared for years.
I started getting them again recently and so I started massaging the area at the base of my skull where the neck muscles sort of meet my skull and that got rid of them again. I’ve been using Pernaton gel but I suppose you could use anything like that.
Although I’ve said that it’s more to reassure you it’s probably nothing too serious to worry about but I’d still speak to someone about it to be sure.
Good advice about pillow height etc. it can make a huge difference. I now sleep on an almost flat pillow and now I’ve got quite a collection of pillows that unfortunately don’t suit my neck.
I used to crunch a lot .. sounded like eating cornflakes! Neck pain can make some people feel quite nauseous I know. Over the years it has much improved as RA meds gave me more movement and the exercises and posture helped, but often I’ll slouch and forget. Then I’ll be upright!! I tried to send you a little PM midweek and it zapped off sideways in front of my eyes. I wailed! It wasn’t on the screen when I went back to PM so I can presume that never got to you. Argh. Will try again over the weekend but I’m having some PM issues for sure! I may have to type in notepad then copy to PM. Hope you are alright. Hope you don’t have more of those headaches, x
No, I haven’t had a PM for ages. That’s so frustrating isn’t it, I try to remember to use notes then cut and paste onto HU but then I forget until I lose something.
That is a headache that makes you feel sick. Posture and exercises really help don’t they plus I keep reminding myself of how heavy our heads are so that if we don’t hold them up then we are putting an enormous strain on our necks. For me there’s a knack to keeping moving otherwise I seize up but not doing too much otherwise I do more damage that I fix.
My latest discovery is that sleeping with compression gloves on really stops me stiffening up. The physio who has been working on my dodgy shoulder said she has patients that she will suggest that to. So it’s nice to know that I’ve maybe come up with something that will help others.
That’s us just gone into Tier 3 ! Not that we ever went anywhere although most of our favourite places to walk are in Tier 2 which is a nuisance, we haven’t really mixed with people either. The only people who seem to be really suffering are those poor souls in the hospitality business so for us everything else looks more or less as it was before. Have a good day - sun is shining here but we had a massive downpour earlier on.
Some very good advice already given, I agree with the pillow situation. I've tried most pillows known to man over the years, have yet to find the perfect one, but am finding my latex one quite good. As fruitandnutcase says, the height can make all the difference, and as helixhelix says, the memory foam ones can be great too.I've had awful troubles with my neck for a long time, never sure if is RA, Osteoarthritis or Fibromyalgia, having all 3, and I do get awful headaches, was told they could be cerviogenic , and, as helixhelix says, it does sound very possible in your case.
I was also told they may be occipital, as in Fruitandnutcase's case ,and also saw a physio who also worked on the area she describes at the base of the skull, with some relief. Ido also have Chronic Migraines though so I never know what's causing what!?
Hi Niao. I've bought so many pillows over the years and a lot of them are still here unused - drives my hubby mad. I usually get the two pack and try one for a week or so and then discard it. The only comfortable one I have bought recently is a silk pillow, it's the most comfortable one I have ever used but unfortunately, I still have the headaches every day - the culprit being MTX I think. x
Do you think so springcross? I have had a lot since starting MTX but as I say, am rarely without a headache of one kind or another!Pillows, I have hundreds, and use many. One for head, one between/under legs for sleeping, one under shoulder fir sleep, one under elbow fir sleep, and 4 to prop up with on bed with another 3 under legs!!
Goodness, that is a lot so where is the bed? 😂 Only joking Niao, it is a real nuisance. I've had headaches on and off since I can remember but since starting on MTX, they are pretty constant and can occur in different places in my head at different times. It doesn't help because of the shape I am (with kyphoscoliosis) and my neck is a funny shape now as well as my spine. Hey ho! xx
Good grief springcross!!! I simply cannot believe how much you have to contend with! I keep saying this but then I hear of yet more things you endure.! You don't just 'bend one way but the other too!! That sounds a bit odd, sorry! Seriously though, that must cause an awful lot of pain?I do think you're right, I am getting them quite consistently, and in strange places!
Mine was caused by breaking my back some years ago (it was a high impact fracture following a head first fall down the stairs). I suffered with headaches long before that happened though. xx
Oh my goodness! That is terrible Springcross! I really hope that any pain you still get from all this is well controlled? I find it hard to believe it would be though and imagine you'd still have some very bad days, with this and everything else on top!?
Hi Spring, I keep getting ads on my phone for silk pillows/pillowslips and was going to try them as we’ve had also had a vast assortment of pillows over the years some of which were like bricks! 🤪Expensive too. I end up with Silentnight medium firmness hypoallergenic and use allergy pillow protectors over them which are quilted, so bulk up my two pillows. I read the silk pillowslips don’t matte your hair .. a problem I have many mornings as I get hot and then toss and turn at night so wake up with Ken Dodd hair! I read also it’s better for your complexion and helps you stay asleep .. ah if only .. so I’ve got to try them! x
HI Nk. I read a lot about silk pillowcases too before I bought mine and all I can say is that they're OK but I didn't feel it was all I expected it to be. It's lovely and smooth and they don't give you Ken Dodd hair (😂😂 - mine looks like that anyway since I've been taking MTX) but they're supposed to stop your head from getting hot and clammy during the night and mine does to a certain extent but my hair some mornings still feels like it's stuck to my head and I hate that. Also, whilst some say they can be washed in the machine on the lowest temperature, they still recommend hand washing and line drying away from full sun and it's said they should be changed every two days!! I have a silk pillow which I am sure would be fine with my cotton pillowcases - they are like a satiny finish ( I think they're Dorma). A lot of the reviews rate the silk pillowcases but looking back, I wish I had taken a bigger pinch of salt with it although J1707 has one and I think she's quite impressed with hers - you could always ask her. xx
Sorry, meant to add, I don't know very much about the different RA meds and side effects, being new, and it's always advisable to check with Gp where headaches are concerned, just to put your mind at rest.
Unfortunately I suffer this too . RA in the neck. Pain / stiffness / cracking and popping accompanied with headaches . Painkillers and heat until it passes .. feel your pain x
As mentioned here, I agree a lot of neck problems are worsened from poor posture and poor sleeping position. You often get in comfy positions but not always beneficial to your joints. I had some good advice from my physio and he told me to step my pillows and also roll a small towel at the base of the bottom one to support my neck but I wouldn’t wan’t you to do that unless you’re advised as you may make yourself feel worse. Sitting position and how your back is supported also has such a bearing. A lumbar support cushion could help .. I’ve got mine behind me now on the sofa. An OT at rheumatology advised me. Can you ask for rheumy physio/OT help even if on FT etc? I was advised to do gentle neck exercises but they need to be shown by the physio, really. I benefitted from doing his nose circles where you start by drawing an imaginary nose circle in front of you in the air and increasing slowly in size of that circle. It’s a very good gentle movement .. clockwise and anti. As I say you ideally need to be shown, so hope you can get some helpful physio/OT advice. x
My neck used to be just about the worst hit part of me with RA. Piroxicam gel helped a tiny bit, prescribed for all accessible painful joints. I also found that keeping my neck straight ie looking straight ahead, not turning to watch TV or chat to people etc, really helped prevent it setting off sickening agony.
But we are all different... if you don’t hear back soon, write.
I hit my recent face to face review yesterday because I wrote a detailed letter of symptoms etc during the previous four months; my lovely Rheumatologist then sent me an appointment for pre Christmas, bless her.
Piroxicam gel - I think that’s what the doctor who said occipital headaches prescribed for me to rub in. It was many years ago and I’d forgotten the name until I saw your post. I wonder if it prescription only?
Yes, yes, yes! That's me at the moment. Mine is extending from the base of my skull into my collar bones and in the morning the muscles or tendons are tight like string. It really freaks me out. I also have pain in my spine between the shoulder blades which seems to be connected. It all feels like it is seizing up.
Hi, when I started with RA (about 5 years ago) I had all sorts of aches and pains. One area, which I just put down to being tired, was my neck. It was very noticeable when I sat down on a settee to watch TV at night, I even found it difficult to hold my head up.
At the time I didn’t associate this with RA, but later realised that the RA was causing it! After being on various drugs my RA is pretty well under control, and so are my aches and pains - no more neck pain.
Update: before the children broke up and their needs overtook mine, I managed one precious appointment at a chiropractor; I literally don't have time to go back. Anyway the only bit of advice during my initial consultation was to get an exercise gym ball which after nearly a month my husband finally inflated for me last night. You're meant to lie on it (face up) with head down to stretch everything from base of neck, shoulders and upper spine. It may be too soon but I gave it a go last night and I feel quite a bit less achy this morning.
Do you definitely notice a benefit from a chiropractor? I just can’t get past the fact it’s a pseudoscience and the guy who invented it also healed people by manipulating their ‘magnetic field’ 🤦♂️ Must be something to it as it seems like a big industry.
I didn't go for a cure but sensible advice about massage exercise and self help. Also he made it very clear that it isn't a cure . He knew a lot more about my spine than my gp who has never even bothered looking at it. Chiropractor could see the inflammation in one of the vertebrae so there's clearly something going on. He gave me the exercises but was supposed to go back for more advice but I just don't have time.
I had this for a while and it was absolutely horrible felt like your neck was almost ‘grinding’. Went away after my RA started getting better don’t notice it at all now.
I too have neck pain (I’m on my 5th biologic in the last year). My physio from rheummy told me heat is the best thing for it whether from heat patches, hot water bottle, heat pad, ralgex spray and gave me gentle stretching exercises for my neck. I also bought an orthopaedic pillow and I’m amazed at the difference in a couple of weeks. If you get heat patches make sure it is ones that can go direct on skin. Hope it gets better soon x
Yes I've had problems with my neck for YEARS.I've had epidurals s .They helped but my rheumy put me on gabapentin a few years ago .That has helped the most.I only take 100 mg at night.I feel so blessed it has helped.
You have a large band of muscles in your next head area. Pain in the neck can cause pain in your head because of the strain. Speak to GP mine sent me for magnet treatment which I thought was bonkers but it worked a treat. Happy Christmas 🎄
That's really interesting. I , without wanting to sound loopy to many, use magnets myself and ,however strange it may sound to some, I have definitely felt they have helped at times! I've never heard of a Gp recommending them though, I think that's great. Why not give everything a try, you just never do know!
I have not been on those drugs, but sulphasalazine certainly gave me the same symptoms. It was incredibly painful. I was immediately taken off. Good luck.
Thank you everyone for your advice! So sorry for only coming back to you all now - I somehow managed to turn my notifications off so thought no one had replied until I checked this morning! Some amazing advice from you all that has genuinely, really helped!
Just want to say thank you to everyone for being so lovely, kind and helpful. I know I'm not the only young(ish) person to have RA but when you don't personally know anyone else with it, it can be very lonely/hard when people don't really understand. This community is so wonderful and just wanted to say thank you again ♥️ I really do appreciate it!
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