My last steroid drop was 3 weeks ago. For the past week I have had severe pain in my right shoulder blade. Nothing will make it go away except resting in a high backed chair or lying on my back. It is worse with movement e.g. peeling potatoes, dusting or walking. My GP examined me today and said he doesn't think it is a rotator cuff injury as my range of movement is fine.
I was wondering if anyone else has had one-sided flares like this. When I first had the PMR symptoms it was in both shoulders but, recently, the steroids seem to be controlling the inflammation in just the left shoulder and not the right. I am right-handed.
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Badgergirl
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I did experience a bout of severe shoulder blade pain but I'm not sure if my experience quite mirrors your's as you mention relief when resting in a high backed chair whereas I couldn't sit back against anything at the time. I found a brilliant physiotherapist who was aware that manual techniques were not recommended in PMR, and I had several treatments to massage out tiny knots all around the shoulder blade area, with heat treatment and ultrasound. It proved successful and never returned.
Hi Celtic. It does sound similar. I forgot to mention that I sometimes yell when I lean against the back of a chair and that's with a soft pillow behind me! It's just that it settles down after a while as there is no more movement.
I've had that for years - pre-PMR too and it is irritating the h*%% out of me this evening! Though in my case it is the left shoulder blade at the moment, it has been in both.
The conclusion that has been come to for me is myofascial pain syndrome - a concentration of cytokines forms in the muscle and leads to a "knot" - for want of a better word - forming. It is effectively inflamed muscle fibres that spasm and can pinch local nerves if it gets really bad and cause referred pain. They can form in the shoulders at about bra-strap area, on either side of the spine about shoulder blade level and on either side of the lower back where the "dimples" are.
A German orthopaedic specialist has been doing research on it and says it happens quite a lot alongside PMR, at a higher dose of pred it often keeps it in check, as the dose is reduced it can flare again. In this case the cytokines are concentrated in one place although they are the same substances that almost certainly cause the generalised inflammation in PMR.
It is possible to release them by physiotherapy or massage that mobilises the knot of muscle fibres - but you do tend to feel generally worse afterwards for a couple of days (like a minor flare) as the cytokines are released into the general circulation. I've had both techniques used on me, I have also had injections into the muscle from the pain clinic here in Italy (probably not available in a pain clinic in the UK). All work well for me.
A good physio or massage therapist is the quickest way to sort it. I also found Bowen therapy helped prevent a recurrence.
It's all around the shoulder blade and the bone is tender to touch so I reckon there are too many of those nasty cytokines in this area. It is worse when leaning forward so there must be a muscle knot. My GP said to come back in 4 weeks if no improvement and he'll refer me to a physio. That could be a long waiting list so I'm tempted to see a Bowen practitioner even though the nearest one will take me an hour to get to.
Have you not got a local private physio practice? They are often similar prices to a Bowen session. I had an excellent one where I lived in Durham - about 6 doors down!
Hello PMR Pro, I have read your answer about the localized knots of pain and it sounds similar to what many of us have found, in dealing with these diseases. I have found that massage helps, and as you have said, there is pain for a couple of days after. Could tell me what they inject into the muscle, when you have injections? Thank you. best, Whittlesey
There are two different approaches: one is cortisone injections into the trigger points, much as are used for other localised inflammation such as bursitis. That is relatively painless.
The other is a technique they call "quaddling" here (in German) but I think it is called "needling" in the USA where there are some clinics that offer it. It can be done in various ways, using sterile saline, cortisone and even what is called "dry needling" where the needle is inserted with no solution in the syringe. The needle is inserted up to a dozen times, all over the affected muscle group which is in spasm. I have certainly had the cortisone and saline versions - I don't know whether I have had dry needling or not. Each insertion of the needle is associated with an intense burning pain at the time but as soon as the needle is removed the pain stops. It hurts - but it is so effective patients return for subsequent sessions!
Here it has been done by an anaesthetist who was one of the staff who ran the pain clinic, I have also had it done by a GP (PCP). It is obvious how it works when done with cortisone - but the saline and dry versions are believed to stimulate the muscle to relax and heal itself in some way. I suppose you COULD liken it to acupuncture - except it does not depend on being on meridians and I believe there are a few studies from Germany about this phenomenon and they use it in a few scenarios where there is pain of this sort. I don't have references though.
Thank you. This is pretty amazing. I understand the first two you have spoken of, I have had cortisone injections in my thigh at the top of my thigh where it connects with my hip and they help. I have had times when my thigh quadriceps muscle is in spasm and currently, I lie flat and they give me valium by injection into a vein in my arm. Eventually this works and I can walk. This "needling" may help this situation. Will talk it over with my doctor. Thank you. All my best, Whittlesey.
I had a really extreme low back muscle spasm and sacroiliacitis a couple of years ago and was admitted to hospital - the idea being to use iv valium plus other stuff. Unfortunately I had a rare but severe reaction to the valium (tachycardia that got to a pulse of 230 for a few hours!) so they had to go the longer slower way - hence the needling. It can take quite a while, it isn't an overnight miracle.
The thigh problem could be one of two things: trochanteric bursitis or referred pain from a myofascial pain trigger point in the lower back. This causes referred pain down into the thigh, sometimes the back but also the front and it can reach all the way down to t he foot - it is sciatica but not due to any disc or spinal issues.
That sounds painful and difficult. I understand on the valium. That's a very high heart rate. Mine has gone as high as 135, that's very high. The needling sounds good. I understand what you are saying about your condition. I have meralgia paresthetica, (another rare condition) which means the femoral nerve connects, where it should not, to the inguineal tendon, which is in the front, along the inguineal tendon, as it nears the hip. Tendons have formed around this "t" formation, which do not allow them to separate. It causes a lot of pain and my thigh muscle will go into spasm upon normal use. I have been hospitalized for intractable hip. My thigh, I believe, gets lowered muscle signal from the femoral nerve due to this impaction. I have had one release, which was good for about 8 months. It has gone back and the condition has returned. I need to have another nerve release. It is similar to sciatica, but it is in the front. I am going to speak to my osteopedic doctor about this "needling". If there is a way I can do it at home, I would like to try it. It is better than medication and I don't have to go to the emergency room.
Thank goodness. I thought I was going mad. This is my latest problem! It arrived after a 1mg reduction of pred. Together with swelling in foot. (Have posted ref this and had great feedback). The back pain circulated between shoulder blades and is very unpleasant. Fortunately I have my first physio appointment next week. And have decided to try the slow reduction plan posted by PMRPro Volunteer. Thanks again folks. Keep your peckers up !
I get that shoulder pain usually when I am having a bit of a flare up of my GCA. the only thing that seems to help me is heating up a wheat pack and putting it round my shoulders. That eases it considerably. If it is particularly bad, then I would also take a couple of painkillers. Hope this helps.
I tried the wheat pack but unfortunately it didn't help. I'm finding lots of Biofreeze gel helps for a short while with a couple of paracetamol. I'm starting to think this will be long lasting and it's really bugging me!
Having read further replies to Badgergirl's post, I just want to add to my previous post that the pain I suffered in my right shoulder blade area when on very low steroid doses of around 3mg and below was nothing like the pain I had experienced in my shoulder area at and following diagnosis of PMR/GCA - I knew it was different. In the early days of the disease, like Narducci, I used to sit with a large electrically heated pad on each shoulder in turn and found it a great comfort although, like the warm shower, unfortunately relief was usually quite short-lived!
Good morning! I was most interested to read your post re one side only. My experience, briefly, is as follows: November 2012 I was diagnosed with PMR after presenting with sudden onset of stiffness & intense pain in both arms & shoulders. (I didn't experience any pain elsewhere). I was prescribed 20mg Prednisolone per day. After 72 hours, as predicted by my GP, the pain almost disappeared which was wonderful. From November 2012 to June 2013 I had been successfully reducing gradually and was virtually pain free. Come December 2013 I was on 1mg. However, in December I was becoming aware that my right shoulder & upper arm was becoming stiff & painful again (bizarrely, only the right shoulder & upper arm). Mostly, during the night and on waking with the old stiffness & pain returning. My GP was reluctant to increase the dose and advised to stay with the 1mg for a few weeks. Last week I spoke to him and he is wondering if it's not PMR but tendonitis, being one sided! He is organising an ultrasound to discount the tendonitis and if so, and if the pain continues, he said it is more than likely the PMR and will consider increasing the Pred. dosage.
Hi pjsmum. That's what made me wonder if it was something else, being one-sided. I feel now after reading these posts though that it might be possible for a one-sided flare to occur, especially if it started on that side and spread to the other side when the full PMR hit. It does make sense what PMRpro says about a concentration of cytokines in the area, perhaps set off by the PMR. Yours does seem like tendonitis though as you've gone down to such a low does (well done!) and have been pain free up until now.
Thank you Badgergirl. One thing I have learned since November 2012 - it seems to me that - like a lot of illnesses and diseases - there are no two patients the same. Each patient has their own story to tell and I try not to get too caught up in all the various posts as it can lead to one being absolutely bamboozled. If there's a post that is similar to my own experience - like your "one sided" flare - then I go in and read but otherwise, I quietly continue under my GP's guidance and trust that one day, hopefully, this wretched PMR will "go to sleep" for a very long time, enabling me to get on with my life. I wish you good health.
If it is one-sided it is less likely to be PMR, one of the characteristics is that it is bi-lateral pain. Your description sounds like what my husband is complaining about at the moment (the position and timing of the pain and stiffness) and his ultrasound has shown a problem with one of the shoulder ligaments (there are 4 forming the rotator cuff) and there is swelling, fluid and inflammation. The normal action to speed recovery would be a cortisone injection into the shoulder but he can't have that without a fuss because he'd have to stop his warfarin and use injection to avoid bleeding in the joint. So he is being treated with masterly inactivity and hope that it resolves. A local injection is better because the side effects are minimal and you get a higher concentration where it is needed.
Thank you for your response. I have an ultra sound appointment on 23rd April - 4 weeks - so we will see what that reveals. My GP has organised this, as he feels there could be something else going on there - and not PMR. It is definitely one sided. Intense pain/stiffness in the shoulder joint and upper arm first thing in the morning; eases somewhat during the day. Have a good day.
I suggested this to my GP and asked about the possibility of a local injection but he said there is no way I can have a steroid injection while I am on prednisolone. He did say I may be able to have some physio if the shoulder pain doesn't go away on that side. It is bilateral however - just that it goes away on the left and remains on the right.
Badgergirl - I know loads of people on Prednisolone who also have steroid injections from time to time for problems such as your's. All I can suggest is: see another GP!!! Or as I suggested previously, see a physio who understands PMR and can give you some gentle massage and heat treatment - it worked wonders for me and got rid of my shoulder blade and arm muscle pain.
What drivel! I've had rather more steroid jabs than I care to think about whilst on pred, both from the GP and from a consultant orthopod and a consultant anaesthetist! I appreciate GPs can't know it all but not knowing something as basic as that is very poor! As Celtic says - find a sensible GP.
I just been to doctors today and seen a different GP he said to try and get down on my pred dose to replace 5mg with 500mg Iburprofen twice a day so I am trying this so it is 15mg of pred which yesturday was my first day and I was totaly pain free all day and got up this am with no stiffness. As my previous comments I have struggled to get below 17.5mg it will be 3 years this May and would like to come off the pred or get to a much lower dose I just worry about the future years as I am only 54 now, what damage all this pred is doing to my body. Well at least I can carry on my normal work many peeps worse off than me.
Hum - I've not seen this before for some reason but I have to say I would be concerned about replacing pred with ibuprofen. NSAIDs should not be combined with pred - both have the ability to cause gastric bleeding and in combination that risk is far higher. And it doesn't take a lot - one lady whose GP wouldn't/couldn't diagnose her PMR told her to take ibuprofen and after 3 days she was in A&E as an emergency with a gastric bleed.
If you are struggling to get below 17.5mg and 500mg of brufen made that much difference I think that there has to be a query as to whether you really have PMR. PMR responds dramatically to doses of 15-20mg at the outset - did that happen? If you don't have that there is a query about the diagnosis. There are a few things that show up looking like PMR but aren't.
The other question is about how you reduce. Some people are very sensitive to reducing the dose of pred if the drop is too big. I can't even manage 1mg from one day to the next without a lot of pain. Last year I started using this reduction pattern, taking about 4 weeks to drop from every day at one dose to every day of a dose 1mg less. For the first time in 4 years I am down to 5mg, after always getting stuck at 10mg at the lowest:
This is on several threads - here it is again:
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
I have been reducing by 1/2mg and 1mg per month and have not managed it this way I seem to be going OK so far, my bloods defo show that I have PMR . In the start of it I started on 20mg no difference at all I had to go to 40mg before I could get myself out of bed in mornings and it I have very slowly got my dose down had a few mishaps along the slow road. Feeling good at moment have mentioned this to GP they said that they are keeping close watch on everything. I do take 60mg Lansoprazole twice a day and have done from onset of finding I had PMR. Thank's for your help.
"my bloods defo show that I have PMR" - there are NO blood tests that show someone "definitely" has PMR. The blood tests currently available can only indicate that there is inflammation somewhere in the body and it is no evidence of exactly where or why. Other causes of polymyalgic syndrome also lead to raised ESR and CRP. The biggest difference with PMR is that a dose of 15-20mg achieves a dramatic improvement: a 70% reduction in perceived symptoms within a few days. If that doesn't happen - the diagnosis requires further thought and investigation.
This paper, aimed at GPs who struggle with diagnosis and management of PMR and GCA, written by one of the top research rheumatology groups in the UK, explains and most of it is fairly understandable:
I am currently using Bowen therapy to try and sort out just this problem alongside some treatment for my legs which don't want to walk. I had the first appointment 10 days ago, came home after and did all the wrong things! It did give me a lot of relief for 2 days but after that it gradually went back to 'normal' for me. I have a second appointment tomorrow when I will come home and rest, rest and then rest some more instead of spring-cleaning the kitchen.
I should point out that I have Fibromyalgia and several other medical conditions besides PMR and GCA. But that first day after the initial appointment I was moving almost normally, something that I haven't been able to do for years - I usually resemble something between a robot and a gorilla.
Hi BadgerGirl, Since my original diagnosis, I have had headaches on one side, sometimes the left and sometimes the right, sometimes both. I am currently dealing with a left sided headache. I do not want to take more prednisone, I am hopefully recovering from nausea, vomittting, etc. and do not feel good. The prednisone causes nausea. I have taken the 3mgs I am down to, but I do have a one sided headache. I have taken neurontin and will take motrin, hoping that deals with the headache. Apparently with these inflammatory illnesses can be on one side. I hope you feel better. all my best, Lynn
Nothing says 'flare' quite like shoulder blade pain. Is it like the pain is 'trapped' beneath the shoulder blade?
And yes, flares can indeed be predominantly one-sided. If you wait long enough it may decide to migrate to the other side as well!
As you have read, there are a plethora of treatment options if you do not want to increase pred. I have found that my best friend in the past 3 years has been a chiro who is very well trained in a technique called ART or Active Release Therapy, which works on scar tissue and trigger points. He has to modify for PMR as we can't tolerate as aggressive treatment as others. But it has kept me working through out.
That's about right - trapped beneath the shoulder blade. Also, the actual bone is tender to touch as is the skin. It did migrate to the other side last night! I am very hopeful that I can find some treatment now.
I have just experienced exactly the same symptoms as you. I had been on 7mg for two months and on my rheumatolgist's advice started to reduce 1 day in three i.e 7 7 6 7 7 6. After a fortnight on this I suddenly had a VERY sharp pain at the bottom of my right shoulder blade with the bone tender to touch, felt like some-one was sticking a knife in. It gradually got worse and on Sunday I got no relief from the pain at all. Initially I went back to 7mg daily with no effect, on Sunday I decided to up dose to 8mg for 2 days then 7 for 1 day, 8 the next, today back to 7 where hopefully I shall stay for a few months before starting to reduce again, even more slowly. Although the current pain was my right shoulder I have had it in my left, when first diagnosed it was more of an ache across the shoulders and up into the neck.Today I feel fine with no pain and have even done a bit in the garden. Whenever I get a flare it always starts about a fortnight after starting to reduce, however slow the reduction.
My private physio from pre-PMR days taught my husband how to massage and when it is bad he sorts out any knots although there were only a couple of small ones, this does ease it a little and I also go to bed with a wheat bag, unforunately I get an allergic reaction to Bio-freeze. Pre-PMR days I also tried the Bowen technique and found it absolutely useless. I have had PMR for over three years.
Hi biblifleur. You've described what I feel - "like someone was sticking a knife in"! I was beginning to think I had cracked the bone somehow.
It's great that your husband can help you like that. I have heard good reports about Bowen but we are all different so I guess it won't help everybody. I'm giving it a try next wee. I'll let you know if it helps.
Yes it was just like cracked bone or something. Quite frankly I think alternative therapies help very little, the only thing that really sorts these aches and pains is sufficient dosage of the steroids which we all want to reduce too soon. My physio was the first to recognise my PMR and remarked that physio is not effective with the disease.
I am still pain free today thank goodness. Hope all goes well with you.
I'm afraid I don't quite agree with the concept "only pred sorts these" - the trigger point pains need something slight different, they will go away with a high enough dose of pred, yes, but research done by an orthopaedic doctor in southern Germany has shown these trigger points are foci of cytokines which are the cause of myofascial pain syndrome. I can't quote a reference unfortunately as it was a presentation at an international basic science conference in Innsbruck about 18 months ago and hasn't been published in a journal.
However - cortisone injections, Bowen, active release therapy and massage mobilisation techniques used by a good physiotherapist will all achieve relief. The first and last are conventional medicine. The foci must be dispersed to achieve relief of the localised inflammation - much like washing the floor with a mop (moderate dose oral pred) will not necessarily get rid of the extra dirty bits (these trigger points) - you have to get down on your hands and knees and scrub!
The orthopaedic specialist who has done this work told me he finds them to be common in PMR patients - but they are not the PMR itself, they can develop without PMR. They also require specific treatment to disperse them fully. Higher dose pred will help a lot but as the dose is reduced the pain may come back and then localised treatment saves increasing the oral pred dose.
Can I just point out the reply I've just written for biblifleur? I don't understand how this forum works - I've just found a load of responses I've had no notification of! It's impossible to have a "conversation", an answer just falls into the void it feels to me!!
Could it be a frozen shoulder? I had that before PMR, first one shoulder then the other then PMR. They may have overlapped and merged together. I don't know if they're related but very similar pain. An ultrasound should show what's going on and also show any rotor cuff entrapment.
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