Lupus shoulder anyone?

So about 7 months ago I started to notice that the pain in my shoulder wasn’t getting better and I was starting g to struggle with some movements. I kept an eye on it and after about another month went to my gp as I thought it was an impingement. After he pulled me about the pain got significantly worse and by the time I saw the physio I’d lost a lot more movement and was struggling with it badly.

The physio decided I had a frozen shoulder and did the thing where they put you in screaming agony to stretch the capsule - I could have punched her but it did help and I was getting better movement by doing the stretching exercises she’d given me. At that point as long as I stretched first I could still do up my bra and my stretching up movement was pretty good. A month later I got hit by dysentery and was in bed for 3 days and couldn’t do my exercises for a week as I had no energy at all. Next time I saw the physio the movement was worse again and I was in more pain.

After she did some more stretching my movement improved slightly that day and then just went downhill from there. The exercises got more painful and I now can’t get my arm behind my back at all. No chance of doing up a bra, can’t put my hair in a ponytail, can’t put on deodorant as can’t move my arm away from m body enough and my upward movement has now gone totally as well. Over the last few months the pain has been unbelievable - and us lupies are generally pretty used to and good with pain. I’ve been on high levels of codydramol and tramadol to try and sleep but they’ve not even touched it. The physio decided she was just causing me more pain and sent me back to the gp for a steroid injection referral.

To speed it up my lupus nurse dealt with it for me rather than the gp and I went in this morning to have the injection done with the team they work with. He insisted on x Ray first which was clear and has done an injection into the back of my shoulder up under my shoulder blade which will hopefully help.

Anyway what was interesting was that he had two student doctors in with him learning - they were fascinated talking to me about the photosensitivity etc and I have them lots of input from the patients viewpoint (whether they wanted it or not - someone might thank me one day lol). While he was talking to them and showing them how little movement I now have he said it isn’t a typical frozen shoulder and is differentiated as it’s a lupus problem. I was just wondering if this is something common with lupus where the shoulder muscles get so bad that it causes the same as a frozen shoulder? I’m now not sure whether this is a frozen shoulder which will act similarly with the same treatments or whether it’s a lupus thing which will follow a different path. From the viewpoint of the pain and movement there’s little distinction but knowing what it isn’t helps me know what to expect from it and whether it’s something I should go back to my gp for to push for surgery if the injection doesn’t help or if it’s something rheumatology should be sorting for me.

Anyone else or is this me being a medical oddity again 😊


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38 Replies

  • Hi, this is interesting, I'm having the steroid jab today 😬. I don't have lupus I've got RD. the X-ray revealed calcium in the joint. I've no idea whether this is down to RD or not. Gosh it's so painful isn't it, I can't take painkillers so not much sleep has been had 😫Luckily it's my left arm so I'm still managing to do somethings. But as you say hair drying etc... near impossible. I've been told there's a four month waiting list to see a physio 😳 so I'm going to have to pay. It's difficult isn't it to gage how much exercise to do. Too much agony to little then it gets stuck. Hoping the jab works for you & me

  • Good luck. The physio happened quite quickly in my area but made it worse - it sounds like the lupus is causing inflammation and the exercises to get movement aggravated that so caused a viscous circle. It’s unlike any pain I’ve ever had though - cocodamol, tramadol and diazepam don’t touch it at all.

  • I had this a few years ago and it was agonisingly painful, I had to cradle my arm and couldn't bear the slightest movement. I got 2 steroid injections at different points and they worked brilliantly.

  • 🤞🏻🤞🏻

  • The guy doing it yesterday did two different points as well so hopefully it’ll be as successful. Did you still have to do all the stretching to get movement back or did it improve that with just the injection?

  • The pain subsided straight away Mifford but the stiffness took a long time to go away completely. You have to keep exercising it, the worst thing you can is not move it!

  • My hips the relief was instant and I was told to rest 2 weeks before starting exercising. This one I’m still getting pain tonight again but it has improved during the day though. He told me to keep it as rested as I can for 48 hours (I may not have been too successful on this one! Lol) but then start stretching it as much as I can and get the physio exercises going again as it’s important to get it moving again as quick as I can. I’ve regained some movement since yesterday immediately so I’m hopeful it’ll help.

  • I too get chronic shoulder pain that does not respond to physio....worked on at my weekly massage but if the weather continues damp and cold then will probably need an injection again this year...prefer not too but seize up otherwise

  • Massage didn’t help on mine but it could be I left it too late. Does it help if you catch it early enough?

  • Oh wow 😳 that was so painful 😖. I asked the GP if it was down to having RD & he yes of course & you'll probably get the same thing happen in all your joints. 😢

    & a merry Xmas to you too!

  • Sorry just saw this after replying to your other reply. The x Ray was excruciating but I didn’t find the injection too bad. I could feel it go down my arm on the first one and up into my head the second one and it stung quite a bit but I think I was already in so much pain that it wasn’t any worse if that makes sense .. lucky me? Lol

    I was hurting a lot last night and I’ve still had to take it easy today but I’m getting times when the pain is reduced so fingers crossed that’s a good sign. Hope you get relief soon

  • Never slept a wink last night 😩 Feel sick with the pain arm swollen & quite hot but I don't have a temperature 🤒 I'll rest today ( don't have much of a choice 😡). Dear oh dear feeling a bit sorry for myself 😞

  • That can be sign of infection in joint Caza perhaps you should get in touch with your GP.

  • I was warned that it can get worse for 48 hours and I was getting strong waves of pain the first night but certainly nothing like that. I’d say ring the team who did it or your gp and double check that if I were you. The injection site at the back is sore as if it’s slightly bruised but the heat in my shoulder has actually gone rather than getting worse. hopefully it’s slightly better this morning but if not definitely get that checked x

  • The swelling is going down & it isn't so hot now. I have done absolutely nothing today & as long as I keep my arm still it's ok 🤞🏻🤞🏻

  • The sheet they gave me warned it can make it worse for the first 48 hours and the guy doing the injection stressed this as well. If it’s still bad after that I’d definitely check though but glad it’s feeling a bit better today

  • They didn't warn me 😡 Of course I still would of had it I'd done but I could of been better prepared. Lot better today although the cold weather isn't helping much.

  • The guy doing mine had 2 students in who were asking questions so that might be why he gave out more info. He was telling them it takes about a week to kick in as well. Did they not go over the risks with you and give you an info sheet before you signed your consent? They went over them with the ones in my hips as well. Never been told it for a normal depo intramuscular injection when I’ve been flaring but it’s always been spelt out when it’s been specific joints being injected

  • Nope just a consent form. He did tell me about the risk of infection & what to do as in go to a&e. But he never said it would be this painful & I didn't come away with any paperwork. I thought it would be like the ones Ive had in the buttock. How wrong was I 😳😖

  • Hi, you are not the only medical oddity... I'm also one that doesn't fit into a neat little box and that doesn't make my Reumy happy at all, in fact he is very frustrated and doesn't know what to do...apart from injections & meds...

    I have calcium build up in multiple tendons - knees, ankles & shoulders.

    For my shoulders the answer was to have surgery to release the frozen shoulder after trying all other things and then get booked back in to have a shoulder repair where they take the end of your collar bone off and shave off the arthritic bits and break up the calcium build up all in a day case and then 8wks recovery.

    It worked well for me, I had my left shoulder done 10yrs ago & fingers crossed it's 75% back to normal and I'm in the middle of waiting for my shoulder repair fingers crossed in the New Year, had the frozen shoulder op back in May only a couple of weeks to get back to some sort of normal as they recommend you use it as much as possible so that it doesn't freeze again.

    I would recommend using pillows to perch you up in bed to try to sleep whihc I know is easier said than done.

    With regards to other bits, I have to make my knees last another 5 yrs as I'm too Young... (50) to have new/partial knee replacements. As for my ankles well I've given up and just learn to pace myself and not do things that aggrevate it which is also very frustrating.

    Hope you manage to get things moving in the right direction soon xxx

  • I’m guessing any calcium etc would have shown up on x Ray? I think mine is purely muscle/tendon by the look of it. I’ve got to admit part of me wants to avoid having it operated on but the bigger part of me knows if this doesn’t work I cannot take this pain any more and I’ll be begging them to fix it.

    Unfortunately ive found I can’t prop myself up on pillows as it makes my back seize. You’re dammed if you do and dammed if you don’t it would seem.

  • Hi Mifford,

    The calcium build up only shows under an ultrasound scan. There is also a treatment called babotage which I also had on my shoulder which worked for a while which might be worth mentioning. It is where they try to break up the calcium under an ultrasound scan as well as a cortisone injection at the end.

    Here is a link to my surgeon and what he does, it really is worth a read and a mention to your own consultant.

    He has said that if you are prone to calcium build up through Lupus, Arthritis as I do it is common and something that can be treated, more than once if needed as well.

    Hope this helps xxx

  • Thank you very much for the info - I am more than slightly surprised that nobody had done an x Ray until yesterday and that I’ve not had any ultrasound or mri. To be fair though the physio did refer me back to my gp and I bypassed him by going through my lupus nurse so he may well have done those if I’d gone back to him. If I don’t get enough movement back over the next few months I will certainly mention this though - I had no idea that calcium deposits were a lupus thing so definitely worth investigating further if needed.

  • Me I am an oddity! Anyway I have had the injections numerous times and they help for a bit, but now both shoulders bad, my hubby has to help me more and more, I have been told mine is R. A. I just put up with the constant pain, as us Lupies do! X

  • Have you found anything that helps Poshcards? I must admit I usually put up with pain pretty well but this is just impossible to keep going through. I’ve totally lost all abduction movement and severely restricted in other directions as well. It’s rapidly paralysing my entire arm so I really hope the injection works. Seems to be fairly common with lupies by the look of it though.

  • Sorry Mifford I haven't,I try not to take any more drugs on top of what I already take, because of side effects. I do find sleeping sat up on settee, sort of sideways on with a pillow along back of settee and side of head tucked into it, takes pressure off my shoulders and I do get better sleep that way, worth a try for a bit x

  • Unfortunately we have an 18 month old big bouncy lab who sleeps downstairs in the living room and I suspect I’d get far less sleep if I joined him lololol. I’m finding that I sleep for about an hour and a half, wake up and get searing agony going all down my arm as soon as I move as the shoulder has got stuck in that time. I slept for 5 hours yesterday afternoon and it was awesome so was hoping it had eased off but it was bad last night and it’s starting up again now. He did warn me it could get worse the first 48 hours though and it certainly isn’t as hot to touch as it has been up to now so I’m hoping that’s an indicator some of the swelling has eased. Plus my laptop has died on me and I’ve spent today trying to fix it when I probably shouldn’t have which may not have helped. Other half is away tonight so I might find it easier getting some sleep tonight I hope - if he’s not here I can sleep at odd angles as I have the whole bed and all the pillows so heres hoping that helps 😊

  • Sleeping in separate beds will help, not ideal I know but we have been doing this for years otherwise my hubby doesn't sleep because I move and fidget all the time, I do hope you get some respite soon x

  • Hi, I had the surgery two years ago after similar issues as yourself and the shoulder is now my best joint 😂. I too have lupus. Interesting what doc said as other shoulder is starting to niggle. Hope injection works for you, it did for me for about two months. Good luck x

  • 2 months will get me past getting married and my January work rush so that at least fills me with hope. Thank you 😊

  • I've been in some pain in my upper right arm and shoulder most of this year

    Saw the rheumatologist in march and he said it was "probably tendonitis" no examination, nothing. Booked a gp appointment about 3 weeks ago, she ordered a blood test at the surgery and I went for an x ray the next day. Bloods came back a week later showing a slight rise in inflammation levels but "nothing significant". A week later I rang the surgery to see if x ray results were back and they were, nothing showing from there, not even arthritis. I have osteoarthritis and thought it might be that...

    The doc asked if I'd like to see a physio so I'm waiting for an appointment. Almost a year this has been going on I just feel its never going to go away. My gp didnt examine me either. I'm taking tramadol and paracetamol in the day with gabapentin at night to help me sleep. Even lifting a cup of tea is painful and my arm feels weak, getting dressed is painful as well...what to do???? painkillers dont help much. I have mild SLE and primary Sojgrens along with osteoarthritis

  • The physio will probably be able to give a better diagnosis and will refer for further tests if they think it’s needed. I had similar just over 18 months ago in my right side which was an impingement and the exercises the physio gave me helped with that really quickly in just building up the right muscles to pull my shoulder back into place. Hopefully it may be something along those lines. I’d say definitely keep your shoulder moving whatever you do while you wait so it doesn’t totally seize if you can. I also found heat works better than ice - the physio had me using a heat wrap that I put under my armpit oddly enough the up over my shoulder. I’d never thought about it before but she pointed out the top of the shoulder is mainly bone etc and the muscles are best reached via the armpit up underneath. I can’t use deep heat or similar but olbas oil helped in the early stages too.

    Hope the physio helps - once you get an appointment give them a ring and ask them if they want you to take painkillers in advance. My physio asked me to after the first appointment so she could stretch slightly further before the pain became too intense. Good luck

  • Thank you Mifford, thats helped. I'm hoping he/she will strengthen muscles in my back as well, thats my main reason for going really. Hadnt thought about the physio giving a better diagnosis, thats encouraging. Thank you so much xxx

  • The one I saw for the impingement worked a lot on freeing the muscle at the back of my shoulder blade and then strengthening those muscles that pulled the shoulder back to make more space for the nerve to go through. She warned me I might need an injection in that shoulder one day but this should put it off for a while. Ironically we didn’t know my left side would be the one that went instead lol

  • On a good note I managed to put my hair in a ponytail this morning and didn’t scream 😊 it still hurt as the muscles are soooo tight and having moved everything more today the front of my shoulder is throbbing again but I slept last night without any painkillers for the first time in 3 months. Starting some light stretching exercises this morning and will start them fully from tomorrow - I’ve worked out that it’s still going to hurt but it’s relative and I’m going to have to just push through some of that. I can’t see me being able to put my own bra on again any time soon as I can’t so much as put my hand on my waist at the moment but hopefully it’ll get there eventually

  • On the flip side having slightly more movement is a double edged sword - the muscles are still so tight that flipping hell does it ache from doing more! Nowhere near the level of pain it was though thankfully

  • Oh my gosh it all sounds much worse than mine, I feel bad now for making such a fuss. Was just a bit worried I might end up with a frozen shoulder or not be able to move my upper arm much at all. After reading what you've gone through mine seems mild in comparison

    I've had an e mail from Pathways inviting me to register on their web site - I dont know if anyone else has heard of it - or I can wait for an appointment in the next few days . No info about what it concerns only that its to do with Sheffield Teaching hospitals and starting the "next stage of my care". They got the referral on nov 22nd so I'm assuming its from the appointment with my gp about a week ago for physio...not enough information in the e mail

  • Don’t feel bad about making a fuss - if you don’t take it seriously at this stage you’ll end up with it freezing as well. Mine started off as a niggle that just didn’t stop and then I had another flare a couple of months ago and it’s totally locked. It happened so quick even with the exercises that I’d definitely advise not to take it lightly and make sure you do everything you can to keep it mobile. Good luck with the physio

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