Arms Arms arms

[Hellerup]

I've had RA since the pandemic. Methotrexate and hydrozychloroquine solved stiff wrists but oh my goodness my Arms! Arms, shoulders and neck but particularly arms. Cant reach, lift, bend behind etc. Very painful 24/7. I wake up at night with the pain, and dream about RA! Only other problem is fatigue. Otherwise, am OK. My consultant not v interested, said see u next time and sent me an appointment for a year hence! She did say she'd book my shoulders for a scan but said the waiting list for scans is 7 months. Advice v welcome!

[AgedCrone]

Have you tried any physiotherapy? Often the fact that we tense up with pain makes things feel worse.

You can self refer for physio at your local hospital on line….,then you are taught exercises to help…it,s ongoing…not just a one off…but it’s well worth a try.

[wishbone]

Tell me about it! I've had trouble raising my arms above the horizontal for a long time. They've gradually got worse over time and are now so bad the pain starts as soon as I move them and it gets worse the more I use them. Rheumy reckons my shoulder joints are the problem and need replacing, which I presume must be causing nerve pain along my arms. I try and keep as much pressure as possible off my shoulders when I lie down or even sit back in my armchair. My elbows, wrists and hands are also arthritic so I guess that doesn't help.

I've had trouble controlling my RA for many years. When under reasonable control my shoulders, arms, etc would ease, but rheumy reckon there's so much wear in my shoulder joints now he doubts if meds will help much. I'll soon find out as I've just started a new med as the previous one wasn't working like it used to and my arms and shoulders, especially the left, are currently giving me hell and that's no exaggerating!

[3LittleBirds2]

Hi

I've had this ever since I went into a flare at the beginning of February and has been unbearable , not able to drive, get dressed without a struggle and I've gone from sleeping like a log to very disturbed sleep because of the pain, has made me feel very low. I can't start my new RA Meds at the moment due to other issues but have been prescribed some oral steroids which I hope will ease it as naproxen didn't do much. When I had it before a few years ago , a steroid injection into the shoulder joints helped enormously too.

If you are struggling and your quality of life is affected also , please consider going back to your Consultant to see if they can consider some pain relief or steroids as I know how miserable it can be. Good luck and I hope you get some relief soon xx

[wishbone in reply to 3LittleBirds2]

Steroid tablets did little to help me, injection gave some relief but only lasted a few weeks so rheumy don't think it's worth having another. I take the max dose of tramadol with paracetamol daily, which does help. Naproxen used to, but is not as effective of recent. I shouldn't be taking it anyway and only take a lowish dose when I do, but the pain gets so bad on times I have to do something.

What really gets me down is having to ask my wife to do lots of things that I used to do, and I'm not just talking about small maintainence jobs around the house either. Fingers xxx this new med will give me sime relief.

[3LittleBirds2 in reply to wishbone]

Oh no that's not good! I really hope these steroids help me as the pain is awful plus the loss of life quality. I really hope you get some relief soon from your new meds. I will starting my new meds asap as soon as my lung issues are sorted...it's been awful. I never had any of this whilst on Rituximab but they don't think it's as effective for me anymore but I rarely had to take anything extra while on it. Good luck! X

[wishbone in reply to 3LittleBirds2]

Steroids should help you with a bit of luck and bare in mind that I've had problem shoulders for a number of years hence much damage done. My shoulders could be OA as Kitty suggests, though as they used to respond to rheumatoid meds maybe not. I have lung disease as well, which unfortunately has been progressing this past few months after a long period of stability. I'm not in a good place at the mo and can but keep my fingers crossed that things will improve.

Hope the steroids work for you and the nrw meds once you get going on them.

Take care

[3LittleBirds2 in reply to wishbone]

Let's hope so and hopefully I can start Sarilumab soon. You are having a tough time too and so sorry to read your lung condition is progressing , mine was discovered on a routine Chest X Ray for my new med check came as a shock just before Xmas. Here's hoping we all get some relief soon, I've had a good few years on Rituxumab without any real issues apart from the damage I already had. Best wishes to you and to Hellerup too. 😊

[wishbone in reply to 3LittleBirds2]

As was mine during a chest x-ray to see if I was ok to start Mtx. That was 8 years ago and thought I'd got away with it but it doesn't look as if I have unless it stabalises again, which is possible according to my GP.

Thanks for the nice words and good luck to you.

[KittyJ]

could it be OA, ( not sure how old you are) if it’s not responding to RA meds then it could be that. I’d call and get put on the cancellation list as 7 months is a long time to wait.

[welsh12]

Hi I had big problems with my arms couldn't lift one or put behind back this was when meds were not controlling tenitinus had rotary cuff issue. I saw physio and was given exercises hard to do when in pain saw osteopath who eased the pain they were waking me up too. But get them to review meds and bloods too.

[Haz58]

Ring the scan department and ask them to be out on the cancellation list. I got that I couldn't do anything with anywhere. But you are talking about your arms. I couldn't dress, lift my arms, lie on them etc etc. my meds weren't working well enough plus having to change them regularly plus a T9 vertebrae fracture.

I was on 6 prednisolone pills for 5 days a started tapering down every 5 days to 1 one day then 2 a day, alternating. It worked.

I still get arms/ shoulders now on and off now on Etanercept but nowhere near like I did. I can mostly use my arms but they do flare if I Do Too much.

When i had to stop Etanercept for a month in Feb due to antibiotics, infection then COVID my arms got worse again. Now settling again back on the meds after 7 weeks.

It's not good enough you just being left. It's hell, I know!

Try and get that scan sooner rather than later. Ring PALS say you are in a dire way and need help now. If you can afford it get a private scan, I used my small savings for an MRI scan just over a year ago but it was worth it. We shouldn't have to do that but....

I truly hope you get help very soon! Like i said to them all 'im not living I'm just about surviving!'

[sylvi]

Complain to PALS at your hospital and tell them how unhappy your are.xxx

[Bails67]

Speak to your GP. Had similar with odd joints turns out to be OA. Physio, trip to OT and painkillers if desperate. A X ray would be quicker and it will show OA.

[BoneyC]

Sounds like you need painkillers on top of DMARDS for RA. Not sure of your age, but could you have OA as well as RA? As others have said, self-referral to physio might help and they might be able to expedite scans. Otherwise, could your GP refer you to a different scanning department, if it's OA and Rheumatologist not interested, surely GP could do referrals for scans/x-rays elsewhere and prescribe painkillers - treat it as a separate issue from RA?

I've had painful shoulders since the 1980's (dx. 1971) but put off replacements until now. I'm currently on the surgery waiting list for left and right elbow replacements. My left elbow is covered in bruising caused by bleeding inside the joint, the joint is swollen, heavy, reduced movement, extremely painful but nobody is interested and I am left to wait in agony. I've taken Naproxen and Codeine for years, but Codeine doesn't touch the sides! The heaviness from my elbow is aggravating my shoulder pain and it's a vicious circle. As anyone with shoulder and elbow pain will know only too well, it's very difficult, if not impossible, to do the simplest of tasks which frustrates me no end and the seemingly endless waiting lists don't help either! Hope you can sort something out for yourself.

[Hellerup]

Thanks very much. I'm 77 so I guess generally falling apart comes with the territory. I will press harder to all possible avenues!

[Happy5]

Ah yes the dreaded neck, shoulders, upper arms pain and weakness hideous I know.

Left side is worse for me had it x-rayed to ensure nowt wrong with the joint, which there wasn't. Was referred to physio who were helpful and I have exercises I do to strengthen the muscles round the joint. I do them it helps but the pain remains so take pain relief.

Doctors diagnose and prescribe, whereas the specialist nurse support your care plan, have you got an advice line? If so call it tell them about the problem see what they can suggest to help. They give me intra muscular steroid which helps me. As I type this top of my shoulders hurt in a way only RA can provide.

All the best 🙂

[Alice70]

I was going to write a post on hear today it would of been dame as yours my arms are so bad starting at neck shoulders tops of arms not wrists just fingers ,the muscles of top of arms are slightly swollen stiff and very painful ,I saw my rheaumy nurse at hospital a few weeks ago she gave me injection in worse arm that didn't work ,I was lucky I had shoulder xray same day showed no osteoarthritis, why my muscles in top of arm are so painful I don't no, ithought rheaumy pain was in joints ,like you I can't shower wash my hair can't lift my arms so painful ,I wonder if it is refered pain ,if you find out what is the cause let me know ,I'll do the same

[oldtimer2]

Sounds like PMR (polymyalgia rheumatica)? When I had a bad flare in the early 2000's I had mainly PMR symptoms initially, then, after ten months, an absolutely classic flare of Rheumatoid Arthritis with swollen red hand joints etc.

I find that doctors often don't give high enough doses of steroids to really make a difference to PMR, you may need to nag them with your symptoms (and CRP level?) to give a clear improvement on steroids. Then you can think about pushing for a biologic suitable for Rheumatoid Disease with PMR characteristics - have a look (or ask) on the PMR website for advice on that.

[orange33]

hi. I have RA I’m due to take Hydro . On MTX Had shoulders X-rayed and it showed Bursitis in both shoulders. I have good and bad days with it and take paracetamol but I have to be careful not to aggravate my shoulders. There was a mention of steroid injection but I haven’t followed that up yet.