I’m wondering if anyone else’s shoulder pain is worse in the evening. When first diagnosed I had the classic morning symptoms. As I also have inflammatory arthritis, scoliosis and spinal stenosis I am finding it difficult (as are the doctors) to match the symptoms to the conditions.
PMR shoulder pain?: I’m wondering if anyone else’s... - PMRGCAuk
PMR shoulder pain?
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Rachmaninov2
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DorsetLadyPMRGCAuk volunteer
Not sure how long you have had PMR or what dose you are on now...but it could be that current dose is not giving 24hours cover of all your symptoms..
I'm guessing/hoping that you did have a good response initially... but a bit more specific info might help.
Thank you for your reply DorsetLady. I was first diagnosed with PMR by my GP approximately three years ago, then the Rheumatologist changed the diagnosis to RA, and yes I did have a good response initially. That changed to Inflammatory Disease and just recently back to PMR, although I have definite joint problems. My hands are very painful and stiff and I have pain in my wrist.
I am taking 7mg Pred each day and 7.5 mg Methotrexate tablets each week. I am sure you are right that the current dose is not enough but I am changing to sub cut this week and my Rheumatologist wants me to begin to reduce the Pred. He said he may increase the Methotrexate but only to 10mg, I’m not sure why but it could be because I also have low functioning kidneys.
I feel as if I am between a rock and a hard place trying to balance all the conditions and medications. I know that I’m not the only one, there are many others in the same situation.
There may be others in same situation... but as my late hubby once said... "yes but I don't have their pain, and they don't have mine"..
you can only deal with yours...and I would be trying to negotiate with Rheumy to, if not increase Pred, at least not reduce it until you have sorted shoulder ...
True, I appreciate your point and you have helped me to feel more confident in voicing my concerns to him. Thank you!
My hands were painful and stiff with PMR and I have always had wrist pain. PMR can present with mild arthritis in the wrists. Especially when RS3PE syndrome is part of your PMR
That’s very interesting and is something I knew nothing about. Could you explain RS3PE syndrome please.
ncbi.nlm.nih.gov/pmc/articl...
I don't think it is anything like as rare as they suggest, especially as part of PMR,
”Subcutaneous pitting edema has been undoubtedly the most characteristic feature. Both hand and feet edema has been reported. “
I have pitting edema on my hands particularly on the underside, and also on my feet. I thought this was due to side effects of blood pressure medication but I will ask about the possibility of RS3PE.
It usually resolves with a moderate dose of pred - but in PMR it can be quite resistant.
Do you think it would be worth speaking to my GP as my next appointment with the .rheumatologist isn’t until June. I am anxious to get this sorted out as soon as I can.
Worth a try - how much pred are you on?
7mg each day.
Did it appear/worsen as you reduced the dose?
Yes, all pain etc has been worse. In addition I recently had to miss a week’s Methotrexate as the Rheumatologist didn’t authorise a blood test and without it I was not allowed any more.
You need more pred. MTX doesn't work for everyone - and I doubt RS3PE responds to it at all.
Much appreciated PMRpro.
hi what is methototrexate what does it do for PMR
It is a DMARD (disease modifying anti-rheumatic drug) commonly used in inflammatory arthritis and claimed by some to have a steroid-sparing effect in PMR. There is no reliable evidence but in some PMR patients t does work very well,
There is an amazing tool called Google (not that I used it to reply) and also most such queries are covered in our FAQs.
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You are using it all day no doubt - and as DL says, if the dose is borderline and your antiinflammatory effect runs out of steam in the evening that could account for it.
Thank you for your reply PMRpro. Yes I am using it all day and I had wondered the same thing. I just wondered if perhaps it wasn’t PMR.
oddly enough when I was first diagnosed in March 2020 I had no shoulder pain, it’s only developed in the last year. And I only get it in the morning. It certainly doesn’t stop me exercising or anything like that.
It sounds like you’ve a lot on your agenda to deal with Rachmaninov2. Hope your doctors can get to the bottom of it.
Thank you for your message and your good wishes Doraflora. Sorry to hear you also have PMR.
Good Luck! I do hope you get some relief. Your pain isn’t mine but I feel for you ❤️
I appreciate your kind message Thelmarina. Thank you. 🌸
on the scale of things with other people it’s nothing.
Somewhat in the same boat here…my osteoarthritis showed much more as I decreased my pred…the pred was masking the issues! Now I’m down to 4mg pred & more & more ‘stuff’ comes out of the woodwork the lower I go! I’m in a year long wait to see a rheumy, but I have a one hour top to toe exam & probably shoulder steroid injections this week with my doctor. Currently I have osteoarthritis, essential tremor, vertigo, sciatica, benign tumour on spine, fibromyalgia, hypermobility and PMR (oh & tonsillitis atm)…but also suspected RA or inflammatory arthritis and spondylosis. My shoulder pains, I thought, a year ago were purely due to not enough pred, and a flare, but my doctor increased my pred to 10mg and no difference (to the shoulders, helped the rest of PMR issues). They get worse towards the end of the day, but I think this is just because they’ve had a day ‘in use’ & demand rest! I had them both injected last May & it helped for 4 months. However, it’s hard to say if they are worse in the winter when it’s cold & damp, & worked well in May as summer was coming!! It’s becoming impossible to link chronic & acute pain easily to one problem, & to accurately diagnose. Some are easy, 3 joints have dislocated in 4 weeks, so last May’s diagnosis of hypermobility (plus history of double jointedness!) was correct. I’m also a pianist & lover of classical music, especially Rachmaninov! I’ve never heard of RS3PE, but will lookup, & if looks relevant will ask GP on Friday! Sorry for long comment, but thought you’d like to know you’re not alone! Good luck with it all, S x
Sorry you are in a similar situation Pixix. A year seems an awfully long time to wait for a rheumy consultation, mine are every six months alternating between face to face and telephone. There again your appointment with the doctor is very thorough, I have only just been able to see a GP having been given a ten minute appointment. I see you have Essential Tremor, I also have what the neurologist diagnosed as Benign Essential Tremor. Not sure if they are the same thing. I’m sure the weather has a bearing on our aches and pains and my rheumatologist agrees. It’s lovely to see that you are pianist, I hope your hands are not too affected and that you are able to continue playing. One of my favourite pieces is Rachmaninovs piano concerto No 2. I listen to Classic FM every day, and find it very helpful. I value your response and it helps so much knowing that I am not the only one in this situation, although I commiserate with you on what you are also going through. Thank you for your good wishes, I hope it goes well for you too and for your appointment on Friday. 🌺
What a lovely reply…I guessed it was Rachmaninov 2nd you loved, from your name, but didn’t like to presume…a true favourite of mine! My father was a talented pianist & I grew up with classical music in the house! We both played daily…& duets sometimes! I learnt from age 7 onwards & worked through all the exams..but I cannot play now as the arthritis in my thumbs + joint hypermobility issues are too bad. So I listen instead…sometimes I wish classic FM would play some less well known classics, but I used to wish radio 3 played some more ‘popular’ classics, ha ha, no win! I hoped it may make you feel a bit better to see you’re not the only one battling to find out which pain or problem is caused by which disease! It’s a nightmare! My doctor wrote ‘so much to unravel…’ at the end of my last exam, oh & after lots of medical stuff like ‘trendelenberg positive’! He is doing another one so he can then try & get me an appointment sooner rather than later, & we have said we will pay if he’s not successful. I don’t like paying in case it jumps the queue, but waiting a year for a referral that was marked urgent is tough! Also, the cost of MRI & CT scans etc is high. I meet few people who have essential tremor, I guess it’s the same as yours, mine is in both hands & arms now, & I can’t carry food & drink around, serve up meals etc…after a few episodes of ‘stew up the walls’ & food on the carpet!! Keep smiling, & thanks, S xx
Thank you Pixix. My father also loved classical music and had quite a collection of LPs. Very sorry that you aren’t able to play any more, it’s hard having things taken away that mean so much to us. In my case I miss being able to look after my garden and becoming more reliant on ready meals, until recently I always cooked from scratch. My thoughts exactly, it all feels like a never ending nightmare. I haven’t heard of ‘trendelenberg’, it can be so exhausting having to research and understand these conditions that are new to us. My tremor happens when doing my hand exercises and when having to deal with anything stressful. You seem to still have your sense of humour and a positive attitude which I think is very important. We just have to focus on the things that bring joy to our lives. 🎼📻🌻
I have my moments, more of them recently, but I try hard to stay positive, & so many other people have diseases with a much bleaker outlook. I still have my Dad’s LPs (but want to sell them), and his CD collection. After he died a few years ago, I found myself unable to listen to classical music, & I haven’t really returned to it. I’m not sure why, tbh, he was 96 & passed away very peacefully. We have a large garden, had to have somebody in to cut all the hedges, but we still manage most of it ourselves. My husband is quite a bit older than me. We designed it so it would take care of itself, but no garden really does that! Gardening & cooking are/were two of my main hobbies, too, along with travel. David was diagnosed with diverticular disease in October and the thing that upsets his system the most is ready meals, which we had come to rely on a lot. But we can’t have them at all now, & have a new 40 page diet to study & implement! He cooks the evening meal most nights. I batch cook, in the morning sometimes, & bought a slow cooker for easy winter stews etc. Now I think about it my hands are bad in stressful times, but also if I turn them palm upwards. They are on the back burner while bigger stuff is sorted out! We are off out into the forest for an hours walk in the sunshine to see the ponies & check if they are look healthy (live in the New Forest, 6,000 semi feral ponies & many donkeys, cattle, some pigs…etc). Keep smiling, if you can! S x
If it’s only a few years since your dad died it’s understandable that you are not ready yet to go back to listening to classical music. I have someone to cut the hedges and mow the grass, but as I can’t do much gardening I will have to try to find someone to do the weeding and look after the plants. I think you are both doing very well to manage what you do. One of the problems with ready meals is that they often contain salt and additives which you wouldn’t put in home made meals. I have a slow cooker too, you have reminded me to have a go at using it again. I have asked my GP to refer me to a dietitian but whether it will be possible I’m not sure. You are like me, we have to deal with the most important things first and push less import things further down the ever growing list! Your walk sounds wonderful, we visited the New Forest once on the way home from Mudeford, it’s very beautiful. 🙂
Mudeford is nice, too, onky about 30 minutes from here. The problem lies in the fact that I overdo it all the time, never rest & relax, and then, naturally, I pay for it! I’m still doing so many things…hurt my back carrying shopping delivery at home today, then had to clear ice & leaves out of our old bath & scrub it, ready to sell it! We have a shortage of gardeners here & I had to wait 3 months to get my hedges done. I fell off the ladder on our sloping drive 3 years ago, so always done for us now! Will try some music soon, I do miss it…perhaps I will start with Rachmaninov’s 2nd! Thanks…yes, the forest is beautiful, & even if I can’t walk one day it’s lovely to sit in one of the 125 free car parks with a view & watch the animals, birds & life go by! It’s very peaceful, good for the soul! Should be prescribed on the NHS!! Take care, S x
When I read your last message I did think that you do a lot more than I do. I was like that until recently, I have now realised that I need to stop pushing myself to do things that are affecting the various conditions I have. What I can’t do doesn’t get done, its difficult but our health is more important. I also like Clara Schumann, Shostakovitch and Grieg, and always listen to Smooth Classics on Classic FM. I agree, wouldn’t it be wonderful if it was prescribed on the NHS. We too often forget that the soul needs nurturing. 🙂
Yes, but I do far too much, still doing decorating, gardening, carrying heavy shopping etc etc! I’m like a small, fat bull in a China shop, but with bad balance & no energy! Doing stuff is like wading through treacle! But on Friday I found out my blood results, I have far too low amount of folic acid & that makes you TATT (Dr put that in my notes, I didn’t know what it meant…Tired All The Time…I like it!) So it may not be anything to do with PMR! Some bloods have to be repeated in 4 weeks as they’re borderline, & others weren’t within the guidelines! He also diagnosed Reynauds disease after examining my hands, my hypermobility is far worse, & the dislocations & subluxations are disturbing him. The tablets he tried me on to stop the tremor haven’t worked, but he’s thinking about it! He also diagnosed trochanteric bursitis, so that explains that pain! Inflammation in joints is bad but he injected depo medrone & lidocaine to help. Now…Shostakovich…that’s an unusual one…Grieg, well, yes, the well known piano concerto I love & the Peer Gynt Suite…but must admit my choice is often piano music…Chopin a fave, Debussy, some of it! Used to go to wonderful concerts with Mum & Dad in Cheltenham Town Hall, orchestral & piano solos. Saw some very talented musicians. Dvorak’s New World is beautiful, and Rachmaninov…oh, so much wonderful music. I thank you so so much, as chatting to you has re awakened my love of it all, & made me want to listen again! That’s my update for now, hope your weekend has been lovely! Off to hospital to see the podiatrist tomorrow.S x
it gets very complicated when multiple things are going on, doesn’t it? I was diagnosed with a frozen shoulder 2 years ago, however, the medics and Physio’s were never completely convinced of that diagnosis. Recently I’ve been diagnosed with PMR and have widespread pain. I’ve noticed in the last few months that my right shoulder is agony, especially at night. It feels very similar to the apparent frozen shoulder. I can’t get comfortable at night and pain makes me cry. I wonder if my left “frozen shoulder” was the start of all this. I wish you well
It isn't uncommon for someone to be told they have "frozen shoulder" and then a few months later PMR in all its glory turns up to play.
Or even GCA!
I thought that as I pressed Reply!
😊
interesting. I think it took a further two years for them to conclude PMR but I think all my PMR symptoms didn’t arrive until a year after the FS.
Some doctors think PMR is sudden onset - not always and very often if you ask a patient to look back over the previous couple of years they can identify little niggles that were building up
thanks! I’ve always been told it’s a sudden onset thing but I think mine developed over a few years and is still developing!
It is disputed - like a lot of things to do with PMR! But there was a link up a few days ago that mentioned the insidious onset variety,
I absolutely agree with you about this...there were little signs that I didn't acknowledge two years before.
Yes, it’s exhausting trying sort everything out. The symptoms of our conditions and also side effects caused by medications. It’s awful when the pain is still there at night when you need to sleep. It could well be that the “frozen shoulder” was in fact PMR , I hope your doctor can give you a medication plan that will give you some comfort. Thank you for your good wishes Bramble and the same to you. 😊
unfortunately I can’t tolerate steroids so I’m not on any treatment as such apart from Buprenorphine patches and oramorph which deals with about 30% of the pain. Thank you.
I appreciate how difficult that must be for you Bramble, chronic pain is so debilitating.
it really is. I can’t quite believe it, I’ve suffered with Ankylosing Spondylitis since I was 25 and I thought that was bad but PMR takes the top prize for agony.
I am glad you mentioned the 'feeling worse in the afternoon/evening'. My rheumatologist is always asking if I'm feeling the worst in the morning. Yes, I am stiff in the AM but maybe due to osteoarthritis and my spinal stenosis like you! The PMR is usually worse for me in the afternoon and evening. I guess that is not that unusual!
I think it is more common than a lot of doctors think! They seem to have a very strange image of what PMR is!
You are so right! I asked my doctor if some of my leg/foot pain could be from falling very hard on both knees (when I injured my shoulder) instead of PMR and he said, "Who knows?" At least he's being honest!
I find it difficult getting my legs to work in the morning, but then as the day wears on the all over pain increases. Shoulders, neck, arms, hands, back, legs and feet, usually continuing into the night. I have been offered an operation on my spine but am waiting for more information from the neurosurgeon before I decide if I am going to go ahead. Has an operation been suggested to you?
Hi, I did see a neurosurgeon last year and he indicated I was not a candidate for surgery. I don't know how I would feel about it if he'd said I was, as there are an awful lot of 'failed back surgery syndrome' cases...my brother being one. I did have an MRI of my spine and it was very shaky due to tremors which I can't really control. I don't really know where to go from here either. I'm about to be 74 and very frustrated with not being able to walk for exercise. I currently am in Physical Therapy for my shoulder surgery. All the best and prayers for you!
Yes, my fear is ending up in a worse situation after having the operation. Are you able to take any painkillers to help with the pain? I share your frustration with not being able to walk for exercise, we really do need to be moving about. I appreciate your good wishes and prayers Chrissiej and hope you can find a way forward with the spinal stenosis.
My rheum doesn't like me to take nsaids with the prednisone , which current dose of 10mg is not really doing much with the leg aches. I've been taking Tylenol arthritis 8 hr (helps a little)and also Arnica montana pellets, which really do help with stiffness and arthritis pain. Arnica doesn't have cross reactions with other medicines from what I've read. I've got a call in to him to find out whether to stay the course or a different amount of prednisone. I miss walking too, and can only do short YouTube workouts now, where I was walking 2-3 miles a day. All the best to you, as well!
Similar to me with your 10mg dose, I am only taking 7mg. I’m glad you are getting some help from the Tylenol and Arnica. I have some Arnica gel that I haven’t used for a while, I think I will try it again. Thanks for reminding me. I’m no expert but it seems that we both could do with having the level of prednisone upped a bit, maybe your rheumy will suggest that. I did manage to get out for a short walk yesterday, only because I had to pick up a blood test form. I am thinking of trying to have another very short walk in a few days. It’s good that you are able to do the YouTube workouts, I haven’t been doing anything like that. Good luck with your consultation with the rheumy Chrissiej.
He upped the pred dose to 15 mg/day and I've got to let him know how I'm doing in a few days. He said all my labs looked good, which is great, but puzzling to me. This is the third day of 15 and it is better (legs) but not gone totally yet.
That sounds promising, I hope it continues to help with the aching legs. All the best.
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