Recurring pain ?

[9lives]

Hi

I'm fairly new , was diagnosed back in may 2016, with PMR.

I have posted a couple of times but mainly I read the posts , which help me enormously.

I still seem to get this awful pain around the back of ribs or between shoulder blades area. It comes on goes. I first had it back in the summer and it normally last about a week to ten days. But the pain when moving , say getting out of bed or a chair is unbearable. It feels like a knot in my muscle that is going into a spasm/cramp.

I did post this in the past and had some really helpful replies, so apologies for repeating.

I am suffering again now, hence my post. This is my third time. So thought I would ask again about it.

I paid privately in November to see a rheumatologist, who came highly recommended to me, as GP not to helpful, he is a professor, and he carried out numerous blood tests ,X-rays and ultra scan. Etc.

Every thing was clear / negative , which is good as nothing untoward. But it's very frustrating not getting to the bottom of it. The rheumatologist feels it is not PMR related as when I adjust my steroids up/down,it has no effect on this pain. Plus all the original PMR pain seems to be under control.

He seems to think it is Possibly the muscles spasms/cramps and suggest If it returns to take a muscle relaxant drug. But only if necessary to help relieve pain.

The fact that it is just random don't help. I try to pin point things but each time it occurs but I can't find a connection with any thing . I haven't had a CT scan as yet, due to cost, as that would be the next stage, if I carried on privately. Also as the pain goes after a week or so and I was feeling much better , i decided to wait and see how things went.

The interesting thing is that each time it occurs it does seem slightly less painful and in a slightly different area.

I am due to see my GP tomorrow just for a review so will see what she thinks also.

Just wondering if anyone else having this sort of issue x

In addition to this ,just to ad insults to injury, I tripped over at the cash n carry two weeks before xmas and fractured my left arm , but surprisingly enough it is healing really fast. Must say the AnE were brilliant and the follow up appointments! Wish I could say the same about the PMR.

Hope you are all doing well and thanks for reading.

Carole x

[HeronNS]

Other than taking muscle relaxants, you could consider one or more of the other modalities various of us have tried. I know people will come on to suggest Bowen massage therapy. Have no experience of this myself but it seems to come highly recommended by other PMR sufferers. One thing I have experienced and found helpful is "dry needling". A needle like an acupuncture needle is inserted in muscles and the effect, according to my physiotherapist, is to "reset" the electrical impulses in spasmed muscles. This has definitely helped me, as I had a lot of referred pain from what, unbeknownst to me, was spasmed muscles along either side of my spine. Note that it is NOT acupuncture which is targeting a different kind of energy flow in the body. Possibly standard acupuncture would help your current problem, although I've read reports from other people that it hasn't specifically helped the PMR they were trying it for.

[9lives in reply to HeronNS]

Hi

Thanks for your reply, have not heard of dry needling before, I'm in Hampshire, how would I find someone who does this .its great that this has helped you, and seems a likely option .

Hope you are doing ok

Regards

Carole

[PMRpro Ambassador in reply to 9lives]

I know that if you google intramuscular stimulation practitioners uk you will get a load of links to physio practices who do something VERY akin to it if it isn't the same. There are probably less than 20 places in the UK but all of them appear to be south of Leicester with quite a lot around the London area. My friend was sent to someone in Newmarket - she commented that it seems to be more likely to be available from sports physiotherapy specialists. There are physios who say they specialise in myofascial trigger point release - that may not be needling, it can be done manually by pressure, but will do the same thing.

[9lives in reply to PMRpro]

Hi PMRpro

Thank you for this information,I will certainly look into this as I feel the problem is,as you say, to do with the tight muscles.

Just need som relief from the pain.

Otherwise doing ok

Many thanks

Carole

[HeronNS in reply to 9lives]

PMRpro's comments good. Actually the physiotherapist I go to does promote her expertise in sports injury therapy, so it's a good point. I'm in Nova Scotia so can't make a relevant recommendation! What happened with me was my physiotherapist said my back muscles were like bricks. Of course I had been completely unaware of this. She did several sessions, targeting muscles on either side of the spine, but only doing one section of the spine at a time. It can be momentarily quite painful, unlike acupuncture which is a barely discernable pinprick. Sometimes it feels like a finger pressing right into the flesh, which is a very strange, but also very brief, sensation. I assume this is an electrical signal. Anyway it seems to have helped me, along with all the exercises and other therapies I've had. A very painful hip (never really diagnosed but I suppose it was the thing most PMR victims seem to get) which recurred as my pred dose lowered has been nearly completely sorted. She also told me that in some vulnerable people the muscles can become so tight they can cause fractures. Who knew?

[9lives in reply to HeronNS]

Hi HeronNS

Sounds like you have had a real time of it.

Are you pain free now or do you still have this procedure...?

I will certainly look into this.i am in the U.K. South, so will check out PMR Pro advice.

Many thanks to you x hopefully you are getting there

Carole

[HeronNS in reply to 9lives]

I go to the therapist regularly (I'm fortunate to have partial insurance coverage) and she has once or twice given me a short session of the needling. Presumably the muscles have started to tighten again. I go for a much more comfortable procedure, however, low intensity light therapy, which I believe has helped lower the inflammation in my body and enabled me to successfully taper pred at a good pace, and the needling is just an extra she provides, along with what she calls "gentle mobilization" and a few other things. In fact my spine really is straighter than it was when we started a little over a year ago. Had a second DXA scan a few months ago and in order to be in the exact same position as I'd been in during the first I had to hold myself in a really uncomfortable pose, to recreate the mild scoliosis present in the first imaging!

Generally speaking I'm in much better condition that I used to be. But I've definitely aged and I hate to say this but I think pred has speeded up the aging process rather noticeably. A necessary trade off.

[9lives in reply to HeronNS]

That's quite something that your spine is so much better, than a year ago, my niece has scoliosis and she is only sixteen. She is seeing a physio on and off because she is so young they have to monitor her for another year yet.

So overall things are working for you and that's great as it is such a Juggling act all the time. I have learned so much from this site and you experience ones, that's has helped me to deal with this PMR with a much more positive attitude.its good to have someone to talk to and who understands.

Yes I agree about the steroids making us look older, but what's the alternative?

Hey maybe a nip n tuck ha ha xxx

Best wishes to you x

[PMRpro Ambassador in reply to 9lives]

I was diagnosed as having a scoliosis in my late 20s and also had a lot of what would now be described as myofascial release therapy from a sport physiotherapist/masseur as well as needling because of severe back muscle spasms and pain. A few years later I was told there was no sign of the scoliosis - and it was decided that it had been due entirely to the muscle tightness.

Steroids may make some look older - but for most of us they are the cheap version of botox: no wrinkles on a balloon...

[HeronNS in reply to 9lives]

My "elective surgery" to deal with a rather rapid aging symptom is having to get dental work done to protect my teeth from being eroded at the gumline as the dentin is exposed. I'm not happy about this, as you can imagine. And I think it's just a symptom of a generalized rapid aging throughout my body. I know this happens to us all if we live long enough but this all seems so sudden. One cannot hold back the tides of time, but it's depressing when they come crashing in.

[piglette in reply to 9lives]

In my case the steroids seem to have made me look younger. People are always commenting on how well I look and I can even see a younger me in the mirror. The fact I feel one hundred is another matter.

[9lives in reply to piglette]

Aww lucky you xx

Nice to have a positive side effects xx

[HeronNS in reply to piglette]

I'm not really sure if I look any different, I've always been told I look young for my age, but as my age is now pushing 70 that doesn't mean much! It's more a sensation that I've lost some of whatever it was that made me feel young, even through the pain of PMR and the thirty-year-old diagnosis of osteoarthritis.

[Hidden]

Hi Carole,

Sorry to hear about your back & now your arm, poor you. 💐

Have you tried a muscle relaxant?

I had a lot of issues with shoulder involvement long before my PMR was diagnosis & at first my GP thought all my pain was coming from my spine. I had an MRI but nothing significant was found but l was put on Amitriptyline at night & still take it now, in a slightly higher dose & have always found it helpful.

Good Luck tomorrow with your GP & hope she can help. 🍀

[PMRpro Ambassador]

I have a similar back problem, myofascial pain syndrome - and it is spasming muscles, just as you say. It is often found alongside PMR but the inflammatory substances that cause it are concentrated in local knots of muscle fibres in the muscles. In PMR the same substances are all through the body. However, oral muscle relaxants don't usually help. Like Heron I have had a needling technique that helps relax the muscles but mine has been wet needling where the doctor uses lignocaine as the vehicle to inject subcutaneously at positions all over the back where the muscles are hard and tense. If it is really bad the doctors here would use a steroid to reduce the inflammation. Mine originally eased after several months of oral pred - only to return when I was able to reduce the dose.

Expensive imaging is unlikely to show anything - spasmed muscles seem to be invisible! Are you in the UK? You could try search for physiotherapists (mainly sports physios) who offer intramuscular stimulation - it is the same as dry needling and sometimes the names are used interchangeably where needles are inserted into the spasmed muscles and stimulate them to relax and heal. Sounds strange - but it does work!

[Celtic PMRGCAuk volunteer]

Carole, during my PMR/GCA days, I experienced a bout of pain in my shoulder blade area that was so severe that I was unable to sit back against a chair. I found an excellent physio who found the cause to be knots in muscles. He applied gentle massage, some heat treatment and ultrasound, and within three sessions all the pain resolved. He was PMR-aware and knew not to further aggravate the muscles with any aggressive pressure.

[9lives in reply to Celtic]

Hi sounds exactly what I have , its like I just posted that. ,!!!

So I would seem from all the replies that the way forward is a sports physio/needling ,

So pleased you were pain free so quickly. Does the pain return again.

Many thanks

Carole

[Celtic PMRGCAuk volunteer in reply to 9lives]

Carole, no my shoulder blade pain never returned after the treatment. However, at the time I had reached very low levels of Pred, and the problem probably occurred due to the long term steroid treatment having weakened the muscles to the point of easy injury - I was obviously now feeling as though I could return to all the things I had done pre-PMR/GCA but my muscles in that area decided otherwise! In an ideal world, we would all be provided with some remedial treatment such as gentle massage/strengthing exercises, especially as we are nearing remission. Plus we must remember that it can take up to a year AFTER coming off steroids for our bodies to return to normal.

[9lives in reply to Celtic]

Yes all what you say makes total sense, about the weaker muscles, after the long term steroid treatment

Yes it would be good to get some support in the form of massage or exercise that will enable us to gently strengthen the muscles. You would get that if you broke and arm for example.

But just reading you post has heplime understanding how long this journey is going to be.

But I'm in no rush will just adjust my speed accordingly xx

Best wishes

[piglette in reply to Celtic]

I had that pain, I found sitting in a chair I could not lean back and the pain was awful. This was before PMR. Then one day I went out in the evening as a group and I was sitting having supper when the husband of one of the group stood behind me and the person next to me, and put his hands on both our backs to ask us something. I had a very hot warmth in my back and a relaxed feeling and I have been fine ever since. I have never met the husband to thank him, but I started to believe in miracles!

[PMRpro Ambassador in reply to piglette]

Does he do house calls??? That's the sort of friend to have!

[piglette in reply to PMRpro]

I did meet his wife afterwards and she said she had never heard that he could work miracles, but perhaps there is something in the laying on of hands. If I remember he was Welsh, not that that should have anything to do with it!

[Celtic PMRGCAuk volunteer in reply to piglette]

I originate from Welsh Wales but missed out on any miracle healing powers being handed out......but then even though l come from the land of song, l can't sing either!

[piglette in reply to Celtic]

My grandmother who was Welsh used to buy warts from people to get rid of them. She also read tea leaves. If I remember you could also bury a bit of meat and once it had rotted the warts went away.

[SweetSue]

Between the shoulder blades seems to be a problem area for me too. I was diagnosed in Sep.t 2014 (although my symptoms started in Jan. 2014) and my pain then was mainly upper thighs, calves, upper arms & shoulder joints. I didn't start having these issues in my upper back until May 2016 and I've had three major episodes of continuing, very painful muscle spasms that last almost a month before settling down. I found a massage therapist who specializes in myofascial pain syndrome, and each time, after several sessions with him, it will start to ease up. That area still seems to be where I will start to feel symptoms if I get too busy and don't get enough rest. It tells me very quickly to slow down, and I haven't even been overworking those muscles. I hope you find some relief.

[9lives in reply to SweetSue]

Hi yes I can relate to that , as my pain has returned three times and lasted about ten days . You say several sessions to of massage before it cleared up, do you think that the massage helped or do you think after this time it would cleared up any way?

Hope you are pain free now and thank you for your reply

Carole

[SweetSue in reply to 9lives]

The first time, I kept thinking that it would go away and was miserable for a month, before i finally went in. I was so spasmed up by that point, that it took the three sessions to get it to ease up. The other times, I went in quickly, and one treatment got it to ease enough that it got it settled down faster. He didn't do massage on me, even though he is a massage therapist. I've found that since I got PMR, massage just hurts my muscles and I feel worse afterwards, and it just doesn't do any good. He was working on trigger points to get the muscle knots to release. Very painful at times, but it did the job.

[9lives]

So glad it is working for you.

I think that's the tricky part, finding what works and what doesn't.

Hope things are improving for you and thank you for your reply x