UPDATE: had my PT evaluation. Pleased to say that the PT I am working with HAS worked with people with PMR. It was so wonderful to walk in a facility and speak to people about my PMR and not get the blank, confused stare.
The PT is saying he only wants to see me once a week to start, he said he didn't want to give me any pain or exacberate my PMR in any way. He is saying 4 visits to improve range of motion and 4 visits for strengthening. Second visit tomorrow!
My GP has finally given me the authorization to go to Physical Therapy. I am hoping to have the PT help me regain my upper body flexibility. I wanted to bring some information with me to help the PT understand PMR and how it affects the muscles. It seems that at one time, I thought, I saw a post regarding the effect PMR has on muscles and muscle recovery. I have scoured the site but can't find what I was looking for. Maybe I saw it elsewhere.
Is there anything specific that any of you would recommend I tell my PT before we get started.
I am currently on 8 mg of steroid daily. Starting a 35 day taper of 1 mg (DL's plan) beginning March 4th.
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Sunnyd7
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Sunny, you just need to ensure that the physio is aware that the usual manual techniques of physiotherapist can aggravate the inflammation of PMR. I learnt this to my cost prior to diagnosis when looking for a resolution for my pain - rather than resolve my pain, it worsened to the point that I was bed bound. However, gentle massage, ultrasound and heat treatment can help, or at least it did for me when at the very low doses and nearing remission. A PMR-aware physiotherapist found the increasing pain between my shoulder blades was due to knotted muscles and his gentle therapy worked a treat.
Wow, between the shoulder blades? Last night I had a sudden pain exactly between my shoulder blades that left me breathless, out of nowhere except that I’d been feeling my trap muscles getting a bit stiffer for about a weekand I’ve found myself slumping more of late. I’m at 6mg now.
I am pretty sure I’m not flaring, but I’ve have had to stop exercising recently because my routine has created more pain as I’ve tapered.
Now I guess I have to find a PMR trained physiotherapist. I don’t think that will be easy here in California.
Hindbags, I too had the same breathless pain in my upper back by my right shoulder blade. My massage person was able to help me. She unknottes everything and I was able to return to my normal routine.
Maybe a massage person could help you too? Where about in California do you live? I lived in San Diego for 4 years. Now I am back in Michigan. I miss living there every winter. 😊
I live between Google, Stanford and Facebook. In Menlo Park about 35 miles south of San Francisco.
Thanks for the encouragement.
In general I think my pain threshold has lowered over the months on Pred. It is just so weird. I get a hurt, a significant hurt one day and the next day it is barely there. Not complaining that it goes of course. I was limping badly on Tues. Gone Weds. Shoulder pain Weds late night that left me breathless but now on Friday morning not feeling it. Wondering if this is the new normal and if others go through it at this stage. Does it settle down? Aside from periodic massage what is there to do? My body is not happy about my qi gong routine at this stage. I miss it. I have never been a no pain no gain gal. Has always worked against me. Qi gong was the first exercise that didn't hurt.
Ah well a new wrinkle in this journey. Something new to think about! "Tis a puzzlement!"
I just take one day at a time. I try not to make any plans to far in advance. Some days are completely pain free others aren't. Some days I am nauseous and lightheaded, other days I feel like I can run a marathon, but of course I don't push it, that would be a big no no.
But in the fore front of my mind is "this will get better". I remain thankful that it is not something more terrible and we can get some relief from the pain.
Epsoms salt baths with some lavendar essential oil drops are my favorite for helping with the pain.
Hello Hindhags, the shoulder blade pain that you are experiencing, from your description, sounds quite different to that which I experienced. I had absolutely no doubt that mine was muscular as it became impossible to sit back against a chair. A friend of mine is experiencing pain similar to your’s with the breathlessness and that has turned out to be an oesophagus problem. Just a thought for you should you experience it again. However, with the stiffness and increasing pain you mention as you taper does raise the question of whether a small increase in dose is the order of the day?
Thank you. I'm towards the end of the 38 day 7 to 6 taper. Last night was a seven. So a slight increase. I'll see how today goes.
I have had GERD from an esophageal tear giving birth some 40+ years ago. I would have thought Indigestion had I also not experienced pain and construction moving my head. I could feel the pain get worse right in the middle spot between my shoulder blades. I've had one sided shoulder pain associated with Indigestion from time to time over the years. This just felt different....though I was belching (tmi?) some.
I do take omrprazole 20 mg twice a day. Was about to taper from that when the PMR hit. That will have to wait until.....
What you probably saw was that the underlying autoimmune disorder that causes the symptoms we call PMR leaves the muscles intolerant of acute exercise. Repetitive activties in particular lead to what is called DOMS, delayed onset muscle soreness, and it is not only worse than expected but also takes much longer to dissipate. You need to start small and build up extremely slowly -which is the case with any sort of exercise. Unlike Celtic I find heavy duty massage is very useful to work on the knots in muscles that myofascial pain syndrome can cause - and it is not uncommon alongside PMR. Everyone is different and you need to experiment a bit.
What kind of gentle exercise you would recommend for me? I'm still not pain free if ever happens, but I would like to help my body to repair or help me move around my left foot now feels numb and if I try moving it around it turns into cramp. I can go for a swim when weather improves, I have tried your exercise of swaying my legs side to side I do that most days but only if I don't have to make emergency exit to bathroom?
You need to discuss what you are able to do with a physio - ask your GP for a referral. Fr most of us walking is ideal - but it sounds as if that isn't an option for you?
I totally agree! Everyone is different as is rehab and recovery over time. I began with Ayurvedic massages for Detox then moved to routine PT & massages. These worked to regain muscle strength and motion. But I developed some localized PMR. Turns out these later symptoms were referred pain. This required special PT and massage work (thinking outside the box). It took months to find the right combination. I have since returned to a anti-inflammatory diet (avoid nightsades, processed foods, sweets, gluten, etc.) and seasonal detox. With spring be careful to avoid the DOMS & good luck!
When I rang to speak to mine first to see if she was aware of PMR, she said I won`t see you I could make you worse!.....I suppose she thought the muscles are too sensitive....but at least she was honest....
I have had a couple of very positive experiences with physical therapy and massage.
Firstly my GP referrred me to a local physio to try to help recover/preserve the range of motion in my shoulders. I just explained to the physio that the PMR causes inflammation in the small blood vessels, which causes pain and stiffness in the muscles. The physio did some very gentle exploration with her fingers down the back of my neck and said that the fascia had become stuck down to the muscle. (The fascia is the connective tissue which runs just under the skin - it's the white "cling film"-like layer that you see when you skin a chicken!) Anyway, she did some gentle "fascial release" to get it all gliding smoothly again, along with some advice and exercises for my posture. This worked brilliantly for me in terms of freeing up my neck and shoulders and reducing stiffness. That was a year ago and I've kept going back every couple of months to keep it at bay. She's also helped with some pain in my hip, which I thought was a flare-up of PMS symptoms, but turned out I'd strained a ligament (possibly pred side-effect).
Secondly, whilst on a weekend away in the Forest of Dean, I treated myself to a massage at the hotel. This was with some trepidation, as I thought it might be too painful. The lady specialised in "Swedish" massage and said she normally used quite a lot of pressure. I said "give it a go - I'll let you know if I want you to stop"! Anyway, she proceeded to give me the deepest massage I've ever had, from top to toe (literally including my toes) for over an hour and although it was painful it felt to me like a good pain. After she'd finished I fell asleep on my hotel bed in the middle of the afternoon for 4 hours. And all the usual stiffness in my shoulders, hips etc just melted away - I felt much better than I had done since the start of PMR. Gradually of course it crept back over the course of the next week, but I really did have a few days of respite. If she was local I would go to her regularly, but sadly it's a 3-hour round trip from here.
So I'm not sure what the lesson is, except that it seems to work for some of us and not for others - you can only try and see what works for you. Good luck and let us know how you get on.
Kathryn, my goal is exactly as you said to regain the flexibility and keep the range of motion in my upper body. I have monthly massages and they are a always helpful. I know when it is time to have a message as my body feels tighter. I appreciate your comments. Thank you! Have a wonderful day!
I personally do not get a deep tissue massage. However, she does work out the knots and help me lengthen and unkink my tight muscles. I am so glad I found her she has helped me tremdously! Even before PMR, I would go to her to help me with the sore muscles I would get from martial arts training and my various workouts.
Just speaking for myself, stretching exercises cripple me. I tried a lot of PT and found out if that initial soreness does not go away in a reasonable time, it is not right for you. So, thank you for sharing and please pass along your regimen if you find it helping you.
Oh sorry to hear stretching causes uou discomfort. I am hoping this is something short term that can teach me how to keep my range of motion without hurting me. I will be sure to monitor my pain level.
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