Neck pain

Hi everyone, I was diagnosed with RA 2 years ago, at first it was just sore feet and swollen painful hands, but the past couple of days have been suffering with bad neck pain at the back centre of neck, I have a really bad headache with it to 😔do you think this is related to my RA, I went to see my GP today and he has prescribed me some naproxen, I've never taken this before, but I'm in so much pain today, 😔x

[jinirules]

I take naproxen when I don't feel great what immunosuppressants are you on? The bad neck pain may be sometimes the position you are lying in bed. Hot water bags help a lot trust me . you cannot use voltrol if you are taking naproxen .take it for few days continuously so you knowhow you react to it. My GP prescribed meloxicam I took it for three days and the fourth day I couldn't get up. So now I know. Naproxen will help with the headache.. Hope you feel better trust me it will get better

[Hidden in reply to jinirules]

Hello jinirules, thanks for your reply, I'm taking sulfasalazine, 4 tablets a day at the moment, with just nurofen and paracetamol, but yesterday the pain was so bad, they just wasn't touching it at all, so went to see GP for the naproxen, hopefully it will work for me 😊 I will try the hot water bottle for the pain, thank you very much for your advice, and hope you can manage also to stay pain free, it's not an easy disease to live with this. Thanks Lady B 😊x

[jinirules in reply to Hidden]

Do you know what your ESR level is? If your pain is so bad they should just not let you be.. Sulfasalazine I thought was the weakest I used to be on it. My ESR level was over a 100 when my RA started so my RA doctor went in aggressively and started me on hydroxychloriquine which at that time I thought was not good for me then started me on a heavy dose of methotrexate and sulfasalazine and it was still not getting better so she put me in for anti TNF injections I am now off sulfasalazine and on hydroxychloriquine and a lower dose of methotrexate. She told me to read all I could on my condition and set goals you are a long way off but let me tell though I am scared of going to town in fear of getting tired I started learning Indian classical dance and it is really hard coz you have be graceful which even in the past I was not. But that was my goal and I did it. Ask you doctor for light exercise. You have to do it. Coz it's never only RA it affects your body in many other ways including RA I now have Sjodgrens lupus and A touch of Reynauds. But on the plus side I am dancing 

Happy thoughts 

[Hidden in reply to jinirules]

Thanks for your reply, I know I wonder if I'm not on strong enough medication, when I first got diagnosed 2 years ago my consultant treated me with methotrexate and hydroxychloriquine but after a few months on mtx I got a really bad rash and had to stop that and the hydroxychloriquine made me sick, so they changed me to sulfasalazine. I'm due to see my consultant in a few weeks , I'm going to ask her if I need to try something else, as it may not be working for me. I do wonder sometimes if I'm developing something else alongside the RA. The dancing sounds great, I am myself trying to get more exercise, which the doctors says helps a lot 😊thanks again, hugs.                                Lady B 😊x

[jinirules in reply to Hidden]

At the beginning I thought I was having breathing trouble after taking hydroxychloriquine so she stopped it then last year I got sunburn on my not my chest my lips started having boils and every morning it was bleeding gps could not do anything went to the doctor she took one look at me increased my folic acid reduced mtx look at my burn and tested for lupus she told hydroxychloriquine is one of the best tablet coz it's good for the skin I told her I will retake it so she started me one every alt day then one everyday and now I am fine. 

What I mean is can you start with smaller doses. I think sometimes our minds can be .... When we are really ill. I am just saying this coz I have been in your place and can feel your pain. 

Hope you have enough family and friend support too. 

[Hidden in reply to jinirules]

Hi jinirules,

Thanks for your reply and that could be right as when I started on the mtx with hydroxychloriquine I was on the highest dose as they was treating me aggressively, maybe I would be ok on a lower dose of the hydroxychloriquine . Thanks for your advice I'm seeing my consultant soon, I will ask her see what she thinks. Hugs.                 Lady B 😊x

[nomoreheels]

I can empathise LadyB. I have cervical spondylosis & as a result have periods of cervicogenic headaches, they're real doozies. Does it feel like a steel rod starting in the top of your spine, up your neck, all the way over your head & across your forehead, like someone's tightening it? I'm having problems at the moment, nothing I'm prescribed for OA pain or inflammation is touching it & it's knocking me sick. I hope the naproxen helps you but if it doesn't improve in the next week do see your GP again. I've got my heat pad on my neck which helps with movement somewhat. My GP's on holiday so I'm just going to have to see another partner. I've tried gabapentin for this in the past but it did nothing despite getting up to 1800mg so my GP said to taper off it. I've resisted trying anything else hoping I can manage it but it's got to the stage now I need to dis use alternatives! I hope the naproxen helps & it eases for you. x

[Hidden in reply to nomoreheels]

Hello nomoreheels, thanks for your reply, and sorry to here you also have this awful pain, and it does feel like you described, it's awful and I also feel really sick with it, it's so painful. Hope your medication you've been prescribed helps you also, I'm going to see how I go on the naproxen, fingers crossed it can help with the headache, and I will also start to use heat on it, I've never done that before, it seems like a good help with the pain. Thanks again, hope you feel better soon to nomoreheels. Lady B 😊x

[nomoreheels in reply to Hidden]

I can say amitriptyline has helped quite a bit, particularly as it acts as a relaxant so has helped me with how uncomfortable I was & as a result restless, only getting a couple of hours a night. My back & neck in particular were very painful despite changing to a very comfortable mattress & suitable base but on the whole except for the odd 'attack' it's made quite a difference having proper restful sleep.

[Hidden in reply to nomoreheels]

Hi nomoreheels, thanks again I shall ask my GP when I ask about the neck pillow, I think that's what I need something to relax the muscles, I myself just changed my mattress but still the same in pain, thanks again

Sending hugs

Lady B😊x

[nomoreheels in reply to Hidden]

It's frustrating isn't it when you make a not inconsiderable purchase & it doesn't help the reason you bought it? I'm pleased actually because it is comfortable now! I started off on a low dose (10mg) & my GP arranged monthly pain relief reviews (to control OA pain & she prescribed BuTrans at the same appointment). The dose was increased over the months until 50mg a nigh, that seems to cover all bases.

[Hidden in reply to nomoreheels]

Thank you nomoreheels, and I know I spent an absolute fortune on a decent support mattress and was still the same, so frustrating 😔, sounds like you have a great doctor nomoreheels, this helps a lot, I will see my GP soon. Thank you

Lady B😊x

[Mandalou]

Hi Lady B

So sorry you are suffering this rotten pain and let me tell you it most definitely is likely to be your RA. 

RA does spare most of the spine but it does affect the cervical spine at the base of the skull where there are joints connected to the upper cervical vertebrae.

In my period of explosive polyarthritis last year I suffered the pain you describe along with my jaw being affected. I was unable to close my mouth  until the rescue dose of steroids kicked in.

I sympathise hugely but it sounds like you are flaring currently so anti inflammatorys will help, pain killers obviously and a call to the Rheumy team who might want to up your medication.

Since I have been on anti TNF Biologics I haven't had the back of the neck pain. 

Good luck to you, hope you get sorted very soon.

Mx

[Hidden in reply to Mandalou]

Hi Mandalou, thanks for your reply, so sorry to here you had this awful pain to, I know they do say biologics are stronger and help with the affects of RA .  And I to do think I'm in a flare to, I also get a burning pain in my shin with pain. It's probably all connected, never felt as ILL just lately, I see my consultant in a couple of weeks, I'm going to ask for advice on my symptoms and the pain I get everywhere even my chest hurts a lot to, sorry to ramble on with my complaints, I know we're all going through this together, I'm so glad I have this sight to talk to people who understand how we all feel everyday. Sending hugs.                                           Lady B 😊x

[ambita]

Hi LadyBrunette68, I have a terrible time with my neck and upper back, was diagnosed with cervical spondylosis over 20 years ago and the physios could not understand how I got it so young as it is wear and tear but it is because of the RA which had not been diagnosed for years and years later!  I still get headaches, upper back pain, jaw pain etc etc and have been having physio, been given exercises and its how I sit, postural.  Find it difficult to read or do any hobbies such as sewing, knitting etc. I rub PO HO oil from the Health food shop on the area, which helps and when I get headaches I use a Migraleve stick from Boots and sometimes put an ice pack on my head. I do take paracetamol too. I get very dizzy and light headed at times.  Its such a pain and have had this for about 30 years now and because of it I have not been able to do much with my life so consequently have suffered from depression for a long time and still do! But I have to keep going and pace myself! Good Luck!

[Hidden in reply to ambita]

Hi Ambita, thanks for your reply, and so sorry to here of all the pain you have been suffering with for all them years, I do hope one day there will be a cure for all us sufferers it's so hard work coping with all this pain constantly. Some very good advice there for me about the po ho oil and migraleve stick fr the headaches, I shall give it a try, anything is better than all this pain. Thanks again gentle hugs

Lady B 😊x

[ambita]

Thank you and you are welcome and I forgot to add sometimes especially during the hot summer weather I use BIOFREEZE Roll-on which helps too.  You can also buy it in a tube but I find I get hand, wrist, finger, and arm ache trying to rub it on whereas with the roll-on you don't have to.  I also get that from Boots. When my neck is bad and I have a migraine I put on a soft neck collar until it passes as I find if I move my head/neck it makes me feel worse, sick and dizzy so the neck collar just keeps me steady! Also I sit in darkness as the light makes me feel ill too!

[Hidden in reply to ambita]

Hi Ambita,thank you for some more very useful advice for me, I will certainly be trying some of these, especially the collar, that sounds great it will soothe the pain and give you comfort at the same time. 😊 I will go and bye one of those tomorrow. I do go into a dark room to when I get the bad headaches it does help.i know just how you feel as I do get the sickness with it and dizziness it's awful, thanks again for your good advice, hugs.                         Lady B 😊x

[ambita]

Before you buy the collar, get advice as you can get different ones.  I have the ones filled with those beads thingys as I found the others a bit restrictive. The shop or a physio can give you advice. Hope it helps and all the best!

[ambita]

I wish we did not have to put up with the neck, upper back pain and headaches, sickness and dizziness.  I had one since I got up this morning and had to resort to taking paracetamol but around my neck area, down the sides of my back and now my lower back are so tight and painful to touch! I get so fed up with it all but I just have to keep going! 

[Hidden in reply to ambita]

Hi Anita, I'm the same woke up this morning exactly the same, and your right, we just have to keep going, hopefully there will be a cure for us all one day, 😏 thanks for advice on the neck collar, hope you feel better soon.hugs

Lady B 😊x

[nomoreheels in reply to Hidden]

I'd ask your GP or Rheumy for advice on a neck collar Lady B, he may even prescribe one for you, or your physio. They differ greatly & can cause more problems if incorrect for your needs. I've been advised only to wear the one I was given by physio to only wear at night despite having freqent problems which of course are also there during the day.

[Hidden in reply to nomoreheels]

Thanks nomoreheels for your advice, I will see my GP to make sure I get the correct one, thanks again

Hugs

Lady B 😊x

[ambita]

I have had a lot of problems with sleeping and pillows.  I now have three different neck pillows which I use at different times as sometimes they are too high or too low and depending on how my neck pain is I have to keep changing them.  Also sometimes I tie a ribbon in the middle of a feather pillow so that it becomes like a shape of a butterfly and sometimes that helps! But for years I had terrible sleeping problems.  Its a bit better now as I take two co-codamal at night which helps me sleep and now I have these pillows.  They are not perfect but for now they are ok! Yesterday I felt better, again today I have woken up light headed and headachy! Also, you could ask your GP to refer you to physiotherapy as they will assess your neck and posture and give you special exercises for you to do which might help! All the best and take care! Today I am feeling extremely tired and a bit down so I am not going to do much and just try and relax. I find the tiredness and no energy gets me down too on top of dizziness and headaches! The general public really do not know or have any idea what we have to go through and on top of that you put on a jolly face for show! Oh, keep going, keep going as I keep telling myself! Hope you feel better soon LadyBrunette! 

[Hidden]

Hi Ambita, 

Thanks for some more usual advice sounds a good one about the pillow, good idea, I shall try that 😊, and I know Ambita people do not have a clue what we go through day to day as to look at us, we just look like there's nothing wrong with us, we do put a brave face on and just smile 😊

Hope you feel better soon and thanks

Lady B 😊x