shoulder and arm pain: Hi does anyone else suffer with... - NRAS

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shoulder and arm pain

junik53 profile image
25 Replies

Hi does anyone else suffer with crippling shoulder and arm pain.I have been on MTX for PsRA since Oct 2019 and had it increased to 8 tabs a week 4 weeks ago,also my doctor is trying me on Pregablin (2 weeks now).My biggest problem is shoulder and arm pain it is driving me crazy and only get some relief at night with the Pregablin.I have had this pain for a couple of years now but it is getting progressively worse ,I also take codeine and paracetamol ,nothing seems to help.I was wondering if I have a mechanical problem with shoulder rather than R A ,but would this have been picked up on xrays I had in October?Problem is its so hard to get an appointment with a doctor or the rheumy at this difficult time .I feel like I just have to put up and shut up and worry that I will do untold damage to my arm and shoulder and end up not being able to use it at all.Sorry for the lengfthy post but I am feeling very low with the pain and worry.

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junik53
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25 Replies
Lyndy profile image
Lyndy

This may seem a little random but have you thought of contacting a physio? I had terrible shoulder pain... I just thought I would have to live with it but a sports physio taught me how to strengthen my muscles and retrained my arm to use the right ones and the pain was gone! It’s tempting to assume all pain is RA related but it might not be .... good luck!

junik53 profile image
junik53 in reply toLyndy

Thanks for your reply .In the last 2 years I have had 2 12 week courses of physio and it definitely improved,I was even able to go to gym twice a week,I still had pain in that arm but I was able to move it a lot more .You could be on the right track but it was getting worse whilst going to gym and had to miss a few sessions due to pain and since lockdown its got into the state it is .I have tried to keep up the excersizes but it hurts so much that I shy away from it.I agree that not all pain is RA.

springcross profile image
springcross

Hi junik. I have had shoulder joint pain for a good eighteen months now. I did have it X-rayed last year (July/August) and it showed a shoulder impingement. A physio gave me exercises for it and although it has not gone, it is a lot better but does start to play up at times. When that happens, I do the exercises again (but only a few at a time) and it helps a great deal. Are any of the exercises that the physio gave you gentle enough to try them again but obviously if any pain occurs, the stop straight away.

junik53 profile image
junik53 in reply tospringcross

I struggle to just lift my arm slightly,so excersize seems a non starter at moment ,but when pain is less I do try and move it.

springcross profile image
springcross in reply tojunik53

That's exactly how I was, I couldn't do anything. I used to try (gingerly) to slightly pull it away from the side of my body and put a pillow in between my arm and my body to try to educate it to move but it didn't work very well. I hope you get some help with yours soon. All the best. x

lornaisobel profile image
lornaisobel

I have RA for many years but just in January this year I developed shoulder and arm pain it was so debilitating I struggled to dress myself. I eventually went to the Dr a few weeks ago and she referred me to a skeletal clinic but of course along came the virus so I haven't seen any one. Over the past few weeks the pain has eased a little but at night it stops me sleeping - I take paracetamol for the pain. I haven't a clue what the problem is the pain came over night but I don't know why - I would be really interested if you find out what the cause of your shoulder and arm pain is and how to make it better. xx

junik53 profile image
junik53

Thanks for your reply

Leonwp profile image
Leonwp

Hi there, have had this at random, sometimes a few days and sometimes for weeks at varying levels. It can effect both sides and sometimes so bad that any movement is difficult even to reach up (I'm in a power wheelchair) to turn on a light switch so I have all my lights on a remote control.

I have had multiple visits to physio and long ago gave up on pain relief.

My consultant put it down to just a symptom of RA but did say it could be fybromyalgia as well although diagnosis would be pointless and treatent no different.

I try to keep shoulders moving regardless as at one point right shoulder froze completely and only remedy was Manipulation Under Anaesthetic and the surgeon told me after that he literally had to swing off my arm over the edge of the operating table to get it to move, he then injected steroid into the joint and although painful after it did free it up.

Sorry no good news there.

Blessings.

Brushwork profile image
Brushwork

I used to get that a lot in the early days. Somehow, it felt like the disease was checking out my entire body before it decided where to settle and concentrate its efforts! See I am a bit crazy, I give this RA thing a character with whom I do battle. Sometimes I win and beat it back into a corner, but it doesn't give in, it pops up and causes chaos in various parts from time to time.... ;-)

junik53 profile image
junik53 in reply toBrushwork

Love your attitude,sometimes I give it a name its a B *****d lol

Brychni profile image
Brychni in reply toBrushwork

I had the shoulder thing a few years ago. One of my the most painful. Every time I lifted my left arm. Bu ti d gradually went away. Had xray which showed damage, did some physio which may or may not have worked but I thought it had at the time. Now that shoulder joint is a lot less mobile than the other and becoming stiffer but that awful pain, which made me want to throw up has never come back. Touch wood!

I’m currently undiagnosed, going through urgent referral, but have had this - I’m going to bed some days in my clothes as the pain of getting dressed/undressed is unbearable. I can’t lift a duvet up and off. My sister is a yoga therapist and has given me a 7 minute morning routine of practices for hands, elbow and shoulders. I take it really slowly but it helps. There are lots of teachers doing online work like this.

Grayling profile image
Grayling

Hi,sorry to hear about your shoulder, I have the same trouble, the consultant thinks the problem was coursed by RA. I've had two operations for rotator cuff which where unsuccessful, followed by MRI scan which proved positive that my shoulder was shot at and required a new shoulder, ok fair enough, but the problem was my age 67, he explained that the age for shoulder replacement was 70 years? as the operation would only last 10 years!! I was due to see the surgeon this May for a review, but this pandemic has put paid to surgery for a while. Hope this was helpful, and you are not on your own, Take it easy and good luck to you.

CagneysMum profile image
CagneysMum

Hi.

I was diagnosed as RA seropositive just over 2 years ago. Initially I was in tremendous pain throughout all the joints in my body, even my jaw. I’m now on 20mg weekly methotrexate injections and take hydroxychloroquin and sometimes naproxen. My joints are all largely well controlled except for my ankles and shoulders. My shoulders in particular have very restricted movement and are painful to move or lie on in bed, so I don’t sleep very well and my husband has to help me dress etc sometimes. I have had steroid injections in them twice with excellent results but of course that is only a temporary measure. My consultant has now acknowledged that methotrexate alone is not working for me and plans to start me on a biologic, however he is not allowed to newly prescribe biologics whilst Covid-19 is doing the rounds, because the drugs will place me at a higher risk. So I’m now waiting for this to be over and hoping that biologics will be the answer for me. Don’t be frightened to push your consultant for solutions and don’t be fobbed off. I did that for year and wish I’d acted sooner now. Good luck with getting a solution.

junik53 profile image
junik53 in reply toCagneysMum

Thanks for your reply,The Pregablin has definately helped me at night,so I am getting a good nights sleep,which I was nt before.Might be a solution for you at night.

Esmereld profile image
Esmereld

I used to suffer severe pain with my right shoulder. I have always had a lot of relief with ibuprofen but of course not everyone can tolerate it. I had two steroid injections into it. The first one lasted 3 months, they decided to try another one which worked a treat. Got to be 15 years ago. On the odd occasion I get a flare there, it’s never as bad now. I had no problem moving it. It hurt the same when moving or still. Good luck with your endeavors.

Wobbies profile image
Wobbies

Shoulder pain is something I get on and off all the time. It sometimes feels like a fire has been lit under my shoulder blade, and then it will reduce after a couple of days but always flares up again. So difficult to sleep. Am on biologics and try to avoid painkillers. No help from GP, so just put it down to the vagaries of the disease and presume that I have to put up with it. Sorry to be so pessimistic. Still, I find each day, the pain moves around. Sometimes ankles are worse, sometimes shoulder, always knees and hips. Good luck with getting some help.

MandiS profile image
MandiS

I had terrible shoulder pain when I started on methotrxate I had physio it did not help. it became so bad that I could not dress shower drive or lift my arm. Eventually the only thing that worked was steroid injection that was about 15 months ago I still get pain but at least now I can lift my arm and sleep . I was told RA can affect our muscles which can contribute to the pain. I struggled for months and wish I had known about steroid injection earlier. I hope you can resolve this soon. I know just how painful this is . I hope you don’t mind me saying but if you are female around mid to late 40S and early mid 50’s it could also be frozen shoulder which is very common in women due to hormonal changes. Something I was advised about when I attended a seminar on the menopause.

Take care hope you can resolve the issue soon

cass24 profile image
cass24

Whilst other joints seem to "take their turns", my shoulders and arms have been the worst affected areas ever since my RA first came on in November 2019 and I was diagnosed in January this year. I can barely raise my arms at all and really struggle getting dressed.

Unfortunately my symptoms really aren't under control yet (currently on Mtx and just about to add hydroxychloroquine) but really hoping that the shoulder pain will finally subside once we find a drugs combination that works.

Sorry maybe not much reassurance except to say that I really sympathise and certainly couldn't personally consider doing any exercise at all of that area right now, although I do find that the heat of a wheat bag gives quite good temporary relief.

Really do hope you have less pain very soon x

Benepaliuser profile image
Benepaliuser

Hi I had exactly the same pains in shoulders and down the top of my arms. I am on Benapali and the doc put added Leflunomide Dailey tablet. Went for physio did not help. Took the new tablets 4 months to kick in and back to normal. Hang in there.

Mumcon profile image
Mumcon

I feel sorry for you I know it’s so painful I have RA and OA and I had this three times It’s utter agony I couldn’t eat or sleep I couldn’t move the arm at all I ended up at a/e and that’s when they discovered I had Tendonitis and gave me an injection, after a few days it was like magic and my arm pain practically gone My doctor said it was over use of my arm I hadn’t been diagnosed at that time but thinking back RA probably didn’t help Keep at them and hopefully you’ll find ease x

junik53 profile image
junik53

Thank you everyone for your kind reply's. Yesterday I used a TENS machine on my shoulder and upper arm and was able to move it a little more than usual,so I will try that again today .I think the key is to keep it moving with a little light excersize so will hopefully help until I can manage to see someone about it.

Gracie2019 profile image
Gracie2019

My RA journey began with horrific sudden shoulder and hip pain that I described as feeling like shattered crystal glass in those joints. I could not lift my arms and could barely walk. One of the tests she ran was... I could not lift my own arms with terrible pain... but if SHE lifted my arm it did not cause pain at all.

My rheumatologist ran many tests and diagnosed PMR (polymyalgia rheumatica). It lasted three years and was ONLY successfully treated with daily prednisone. As the PMR began to resolve, the RA “took over” my body.

Rheumy indicated it was not uncommon to have both PMR and RA. You may want to ask your rheumy this question.

Gowp77 profile image
Gowp77

Hi junik53, so sorry to hear you're feeling so sore and sounds like it's been going on for ages. I've had this kind of pain too and it's really awful. Does your rheumatology dept have a helpline? Might be worth trying to call and they can call back/ advise. What really helped settle this for me was a systemic steroid injection (predisnone) or you can get direct in to joint. The clinic can instruct gp and I am sure this would still be poss in current context if you're in so much pain. They've told me I can now call whenever I need it, but things have now been settled again for 7 months (touch wood!). You might have tried this already, but just wanted to say in case. Might just help get you through until you are back at clinic. Good luck with it and hope you're feeling better soon. Xx

Mmrr profile image
Mmrr

Shoulder, upper arm and wrist pain, heat and burning are my thing at the moment. A MRI scan showed tenosynovitis which is proving difficult to treat.

Movement, trying to do anything brings on a flare...washing my hair, chopping veg and so on, but my rheumatologist keeps saying exercise ...impossible.

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