Can you get RA in neck and head

bagpuss · 7. Mar 2009, 10:57

Hi I am new to this site and nearly in tears to find other people talking about the problems they are having with RA, I have always felt so alone with RA (although I know i am not). I am 46 years old and have had RA for about 10 years. I have been on and off different medications, but mainly on steriods for years. Since May last year I have pain that I can only explain feels like my RA. I have seen my GP, my RA consultant and a neurologist about this pain and they are all saying it is not RA, you cannot get RA in the neck and head, but no answers to say what is causing the pain. Is anyone experiencing the same thing or know what I should do????
Also I am about to start a new drug called Etanercept. Is anyone on this that can let me know what it is like? Thank you

lindalegs · 7. Mar 2009, 11:35

Hi Bagpuss and welcome to the forum,

Of course you can have RA in the neck, I can't believe they've told you you can't. My neck hardly moves at all now - although I've had RA alot longer than you - my neck has been painful in the past and it's sent pains up into my head and shoulders. I reckon your Docs are talking out of their backsides :shock: My GP gave me stronger painkillers till my neck settled down - some Rheumys also provide soft neck collars for support to rest your neck - although it's best not to rely on these too much as you still need to gently exercise your neck muscles and keep the joint moving.

Haven't been on Etanercept - so sorry can't help you there.

Luv Legs

woodbon · 7. Mar 2009, 11:44

I have OA in my neck, and find the pain gives me headaches and travels along my shoulders and the top of my arms. I also get a stabing pain in my jaw sometimes, which I think comes from my neck. Have you tried heat on the neck? It helps me, some people find ice packs better, but I'm a whimp. :roll:

If its not RA maybe you've got mucsle or tendon problems. These things can be difficult to diagnose, as people here will tell you.

Glad you found us.

Love Sue

bagpuss · 7. Mar 2009, 11:51

Hi Legs
Thanks for your reply. Can I ask you is your neck worse during the night and when you get up? I was given some tablets to help me sleep with the pain, but when I looked this up they were antidepressants.... I think they just want to get me out of the room.
Luv Bagpuss

bagpuss · 7. Mar 2009, 11:55

Hi Sue
I have a heat cushion thing I might try that tonight
many thanks luv Bagpuss

lindalegs · 7. Mar 2009, 12:06

bagpuss wrote:

Hi Legs
Thanks for your reply. Can I ask you is your neck worse during the night and when you get up? I was given some tablets to help me sleep with the pain, but when I looked this up they were antidepressants.... I think they just want to get me out of the room.
Luv Bagpuss

Hi Bagpuss,

My neck was worse during the day when it was having to carry the weight of my head around (please no jokes about having a big head

) once at rest on my pillow the pain would ease although it was very stiff in the mornings. It is definiitely RA that has ruined the joint though but it doesn't hurt these days although it is quite musical with the movement I have left :roll:

Luv Legs

hazelm · 7. Mar 2009, 16:45

Hi bagpuss, yep,you can get Ra in the neck,I've got it, and last May I had sugery on it, as my top 2 vertibre were worn away and my head was very unstable on my neck, so I had an op to put screws in to hold it back in place. The pain was tremendous before the op.
all down once side of my head and nek, and none of the painkillers worked, it only showed up on an MRI scan.I'm ok now though, not much movement in my neck but only mild trouble now compared to what i was getting.Also yes, I'm on etanercept, have been for over two years, I don't get any side effects from it, only know that if I was to be without it I don't know how I'd cope as i've been on most of the other meds. but after a while my body seems to reject them. Sorry its such a long post, but its quite hard to explain in a few words, my advice to anyone with neck problems is to badger the docs for an MRI as I was told that i was very close to being paralysed, good job I'd decided for myself that I was too bad to drive, because no one said not to.I didn't find out until after that It
could have been fatal to have even a minor bump from behind in a car. :shock:
hazelxx

colinone · 7. Mar 2009, 16:59

Hi Bagpuss First of all welcome to the site. As you know by now the answer is yes. I have RA and PA i have RA in my head, Jaw Throat and Kneck and it can affect the muscles as well as the bone.
I dont know much about the drug your on but have you Googled it you will meet someone on the same drug on the site as i think it is becoming quite a common one. My sister was on it for 3 years but is now on enbrel the same as me. I hope you get sorted out keep your chin up
Colin

woodbon · 8. Mar 2009, 07:16

Hi Bagpuss

My neck does get bad at night. I have a memory foam pillow which helps a lot. Love Sue

bagpuss · 8. Mar 2009, 14:00

Hi

Thank you to everyone that replied. I am definitely going to have a word with my nurse Tuesday when I go to hospital to start on new medication. I had an MRI scan last year done by the neurologist, but I think they have lost it because although i have chased and chased it they just keep telling me there is a back log. I will have to be firm and say I want to see it

Once again thanks to everyone
Bagpuss x

colinone · 8. Mar 2009, 16:31

Hi Bagpuss Many MRI scans are now sent abroad IE India for results so there is no need for such a backlog.
Colin

noeltone · 8. Mar 2009, 17:43

Yes you can and it hurts I have now had my neck spine scanned again they do change I am waiting for some injections

lesleygraham · 9. Mar 2009, 02:59

I also have RA in my neck, aswell as all other joints. It can be extremely painful and it limits my head movements.
I started entanercept over a year ago and the results were immediate and fantastic. It gave me my life back for a year, with no side effects. However, it slowly stopped working and now I have been taken off it and I awaiting a new 'infusion'. Hope that works just as well.
Take care and good luck.
Les

pussycat · 9. Mar 2009, 16:05

yes I have Cervical Myelopathy and get regular steroid injections to help cope with this. I am only in the early stages but the pain can be terrible I take dihydrocodeine, ibruprofen and paracetamol to deal with the pain.
As time progresses I expect that I will need stronger pain killers and more steroids and there is a possibility of surgery

...but at the moment I am coping and resting as much as possible when problems arise.

bagpuss · 9. Mar 2009, 17:20

I never realised so many people suffered with their neck and feel slight comfort reading peoples comments on this site. Speaking to specialist, doctors etc and them all ignoring what I am saying about the pain in my neck and head, i was begining to think something mentally was wrong with me :roll: ........ Lets just say watch out nurse when I go up hospital tomorrow

I have been feeling really down lately and seem to be losing the energy to fight against it all

Once again thanks to all that have replied
Bagpuss x

colinone · 10. Mar 2009, 00:17

Hi bagpuss

On Wednesday 8th April we are going to try and set a new record for most people being online at the same time on this site. I think the time is set for 6pm if you can join us please let BADGER know. If you cant locate him have a look on CHIT CHAT FORUM under are we going to break the record. We need your help to do this so please join us.

woodbon · 10. Mar 2009, 06:26

Hello again,
I take amatriptayline (spelling??) and that an old anti-depressant. My GP said that in small doses it acts as a pain reliever, especially for nerve pain. Maybe thats why you have an anti-depressant.

Love sue

bagpuss · 10. Mar 2009, 09:29

Hi Sue
I just checked and yes it is Amitriptyline I was given. I am seeing my nurse this afternoon I am going to take them with me and ask her what she suggests. Thanks for that perhaps they don't just think i am a raving lunatic

cheers Bagpuss

bagpuss · 10. Mar 2009, 09:32

Hi I will find Badger and be online for that time and date. Bagpuss

Can you get RA in neck and head

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