Extreme pain in shoulder/arm

Morning fellow PMR sufferers. I was diagnosed with PMR nearly 3 years ago and on 6mg prednisolone at moment. I have had several flare ups over the yrs where I have had to increase back up to 15mg then gradually reduce. I rarely go to see my gp as I find I can manage things myself. However, the last 2 days I have been in terrible pain with my shoulder and down my arm, the pain is so bad I am unable to move my arm now. I have tried taking the strong ibuprofen tablets 400mg strength, paracetamol and now cocodamol but nothing is even touching the pain. I have this morning increased my prednisolone to 15mg and will make an appointment to see gp tomorrow. My question is what do other PMR sufferers take when the pain is so bad? This is the worst flare up I have had in 3 yrs, I am literally bedridden it's so frustrating as I am only 54 but feel 94! I am so depressed and fed up as I never seem to ever get completely pain free and always feel stiff but can cope but this is something else. Any suggestions or idea would be appreciated and I do think I need to change my diet perhaps? Again, any suggestions about that?

10 Replies

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  • Caz, have your been lifting or carrying something heavy that may have caused your pain? It is also possible that you may be experiencing a rotator cuff injury - quite a common problem caused by the steroids weakening and tendons and ligaments around the joint. A good physio will be able to help by showing you a range of movements, and, if your GP agrees this to be the problem at your appointment tomorrow, hopefully he will refer you.

  • Hi Caz,

    Sorry to hear you're in so much pain. Has it come on since you decreased to 6mg? Or have you been at that dose some time? Or have you injured your shoulder/arm in some way?

    If OTC painkillers aren't helping - and you really shouldn't be taking ibruprofen on a regular basis with Pred - then it would suggest another flare.

    It would seem that if you keep having flares then you haven't got the inflammation properly under control, and that's what you need to do, and then also keep it under control as you reduce.

    As for not seeing your GP, I think you need to, glad you have made appointment as you are obviously not controlling your PMR at the moment.

    I quite appreciate that you are happy to manage your own PMR, as I do my GCA, but I still have blood tests every 4 months or so, and if I was in pain I would definitely see him for advice.

  • Sorry to hear about this awful pain. As it's one-sided, perhaps it isn't a PMR symptom, but could well be a rotator cuff injury, caused by pred weakening the tendons. This happened to me and my GP gave me a cortisone injection into the joint. This was two years ago and I haven't looked back. I do hope your GP can help. Good luck.

  • Thank you everyone for your replies, my left arm is sore but not painful like my right arm and shoulder. Yesterday I did carry some shopping probably a bit too heavy but for no great distance and I took down the Xmas decorations and day before that I was holding up my iPad to FaceTime my son but was not in any pain or discomfort at the time. I can only think that this may have aggravated the PMR in my upper body and now I am unable to move my right arm or shoulder. Or, like you say may not be my PMR and could be something else? I will see what gp says and maybe suggest blood test etc re raised inflammatorys although these never show up much in my blood test which is why it took almost 6 months to diagnose! If I could just get the pain under control even for an hour or so it would be a relief. My neighbour has just lent me a tens machine to try so it's worth a go I suppose.

  • I'd suggest it was a combination of things - a bit of a flare, doing far too much without noticing over xmas and the new year and possibly injuring that shoulder into the bargain.

    I hope the tens machine helps with some pain relief, unremitting pain is awful, I had 5 years of PMR without pred because like you my ESR/CRP remained stubbornly normal (ESR of 7 at its highest!) and there were weeks when I didn't know which way to turn. Then ibuprofen did a bit - nothing else did and paracetamol is as much use as a chocolate teapot if you ask me! Plenty of clinical research that says the same if it comes to that! Pred on the other hand eas a miracle in 6 hours!

    Have you tried ice on the shoulder? 20 mins at a time, wrapped in a towel or something so it isn't touching your skin so it can't burn it.

  • Hi PMR pro I think you could be right, over doing things a bit and a flare up into the bargain = severe pain and unable to do anything except take to my bed which is not like me at all. Desperately need it to improve to go to work tomorrow if at all possible as my employers do not know I suffer from PMR and would like to keep it that way as only worked there 7 months! I have not tried ice on my shoulder but will give it a go as willing to try anything at all and I agree with you that paracetamol doesn't do a thing and the very strong ibuprofen only help slightly. I will see what gp says and try to get a prescription for some strong painkillers just for emergency use like now!

    Poor you having PMR undiagnosed for 5 yrs that's awful and immediately you are put on steroids it's a remarkable change but then the flare ups come as you keep trying to reduce dosage! I have managed to get down to 3mg twice in 3 years only to have flare ups a few weeks later and then back up to 10-15mg and so it goes!

  • So next time take it slower once you are heading for 5mg - at that stage you really need a couple of months at each dose to be sure it is enough!

    You aren't heading relentlessly for zero - you are looking for the lowest dose that gives you the same result as the starting dose. You can't force a reduction - you will just end up back at a high dose and will have loss all the point of the reduction.

    And if you aren't well enough to work, you aren't well enough to work. I do realise how difficult that is after a holiday weekend - but are you a member of a union? Maybe if you aren't- you should be.

    And how about googling Bowen therapy? The University Hospital of North Durham Pain Clinic uses it: healthnorth.co.uk/treatment/ so it is accepted by mainstream medicine. I and several friends have found it helps a lot in this sort of thing. It costs about the same as a massage, cheaper than a spa treatment - and I always feel uplifted after a session so it is good even if it doesn't help your shoulder. If it hasn't helped at all in 3 sessions it is unlikely to so it isn't an open-ended commitment as chiropractic seems to be quite often.

  • Hi PMR pro thank you for your reply which I appreciate and will take a look at the link you have sent and see if there is anywhere near to where I live that may offer Bowen therapy which I have heard about but not investigated it but certainly will now. Unfortunately no Union where I work and on a fixed term 12 month contract which may hopefully lead to a permanent job hence reason to try and keep my sickness record at nil but, like you say, if I am not fit to work then I can't. I am feeling slightly better this evening after spending all day doing absolutely nothing. Can't decide if it's the tens machine or the cocodamol that's alleviating the pain or both! This website is fantastic and appreciate everyone's comments and suggestions. Good health to all in 2016.

  • I really feel for you young ones who are still holding down a job. My heart goes out to you. All you can do is enrol the help of the family and explain how getting a permanent job will benefit everyone. I fully understand where you are coming from with not wanting to inform your employer at this stage. The job market is a much tougher place now than when I worked. Feel free to have a moan or ask advice anytime on here. Most important is to take enough pred to let you manage your life. I take 9mg at night before bed and am totally pain free next day and every day BUT I am still doing the dead slow method so that I keep control. I am just going down to 8.5 which will take me a few weeks but worth being patient, more so if still at work. Big hug. Mary x

  • Aww thanks Mary your kind words mean a lot to me. I am fortunate that I only work 25 hrs a week and thankfully my husband is an amazing help as he nursed his mum when she had cancer and knows all about pain! I will keep taking the steroids and not reduce too early and only by 0.5mg at a time. Have found details of a lady who practices the Bowen method so am going to give her a ring this week. Am willing to try anything. Take care & thank you for the hug x

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