PMR - osteopathy and an update on my arms.

[Gimme]

My question is, has anyone here seen an osteopath since they started taking pred?

Reason for asking, I have been on pred for 2 years now (on 5 - 6 mg for majority of that time). Tapering from what seemed like a flare, 15mg one week, 10 mg, one week, then 9mg, 8mg and this week on 7 mg. When I increased the dose, it seemed obvious to me that there was something there not responding to the pred and have had long standing musculoskeletal problems, so made an appointment with osteopath to have my spine checked out. The osteo is understandably concerned about manipulation because of the pred and risk of osteoporosis and I trust her guidance, but I wondered whether anyone else had had any experience of osteopathy while on pred and how it went. Hopefully, some past threads will show up when I post this.

As an aside, I did have a DEXA scan a year ago, but both the surgery and I have failed to get the report from the hospital so far, so I have no idea of numbers. Seems to be common issue. Osteo would feel happier if she has the results. All I have is that the radiographer commented that my bones looked very good when I had the scan. atm, I am following up to see if I can get a DEXA scan done privately so that I can get a report. It's a real nuisance.

Anyway, had some conservative osteo treatment last week, which has helped the neck and upper back a lot already, but still have a painful movement arc in the arms and osteo confirmed that some rotator cuff tightness is ongoing, which I have had before, and she thinks that the problem with the arms is referred pain from the shoulder. It is seeming to me that the shoulder is part of the PMR, but as rotator cuff injury is also called swimmers shoulder and this started when I was in Mexico in November, I think that I might have overdone the swimming and following the usual pattern is taking a while to heal. Anyway, my plan for now is to stick with seeing the osteo for a few more times to see if she can get a bit more movement into my shoulders and upper back. I'm seeing her again on Friday.

As far as the taper is going, so far no return of anywhere near the amount of pain that I have been in over the last 2 or 3 months. No indication that the inflammation is building up again yet. I'm going to see how this week on 7 mg goes. If all is well, I might stay here for another couple of weeks, before I attempt to get back to 6 mg. I'm playing it by ear for now. Fingers crossed that a good old clear out has done the trick.

[SnazzyD]

I’m a big fan of osteopathy and have had it throughout Pred and beyond. The lady I see is great because she isn’t a clunk click merchant like the head of the practice. She works on the fascia which is great for me. If I don’t need a big adjustment I tend to go to a Bowen therapist.

Like all therapies it is important to find someone who is good and I’ve had few rubbish ones for sports injuries in the past but they were a step up from the physios I had at my disposal at the time.

[Gimme in reply to SnazzyD]

Thanks, Snazzy. Like you, I am also a fan of osteopathy. I've needed to see someone every now and again since my early 20s. I've always needed a bit of clunk click to sort it, though I am conscious of being older and maybe it's not such a good idea for me now. Can't say that I have ever had a lot of luck with physio. In fact I got far better results in improving my mobility and staying mobile with the weight machines in the gym than I ever got from physio, until the last year. I'm reluctant to attempt it with this rotator cuff thing going on though. I like the lady that I saw last week and I'm going to stick with her for a bit to see how it goes. She got some results without causing me pain, so I feel that she is on the right track.

I must ask Sam if she was working on the fascia. She seemed to do a lot of work on stretching out the muscles and improving the tightness, before doing any manipulation.

[piglette]

I go to an osteopath and she has several people who have PMR and she takes an interest in it. I have also been to several physios. Don’t go to anyone who does not know about PMR is what I have discovered! My osteopath moved to Canada which is why I tried the physios and another osteopath. Luckily she has come back to UK!

[Gimme in reply to piglette]

hmmm, yes, I had a guy in my home town who had a lot of experience with PMR and he was good. I haven't seen him for a while and couldn't get in touch with him last week. I've since found out that he died, which was rather shocking to discover. Hence, going back to see the lady that I have just seen. I'm not sure how much experience she has with PMR, but I was clear on no deep massage or anything too pokey, and she did a good job with freeing some of it up. I daresay that progress will be slightly slower if she has to be careful, but I can live with that, if it doesn't cause me more pain. I've been in so much pain since the end of last year and I am thinking that if we can work on the parts that are achievable, then it might make what remains a lot more bearable. Like most in things in life, all it needs to be is good enough.

[PMRpro Ambassador]

Like Snazzy - I'm a big fan but NOT of the big crunch merchants. I used to use Bowen therapy and saw an osteopath to great benefit in the early PMR/no pred days and would have no compunction about using them even with pred. Chiropractic is another place where it very much depends on the technique. Unfortunately where I live now they are either very crunchy or very esoteric - not to mention horribly expensive!!!!

[Gimme in reply to PMRpro]

That's reassuring. I used to see someone, about an hour's drive away, and he was excellent, until he went rogue. He took up yoga and then he discovered that he was Jesus and the laying on of hands was sufficient. 🙄 Up until that point, he was a very good clunk click merchant and I think that he switched to cranial osteopathy. Unsurprisingly, it did nothing. I'm buggered if I am going to spend that kind of money when I can lie on the bed at home and have a nice chat with one of my friends and they won't charge me.

I moved to the guy who knew a lot about PMR. He did do the skeletal manipulation, but I have an idea that he was using something akin to the Bowen technique, though I don't really know what that involves. It seemed very gentle and didn't seem to do a lot, until a few hours later, I noticed that I was moving more freely. He reckoned that I needed to see him twice a week, but alas, I couldn't afford that. And now he is sadly no longer with us.

[PMRpro Ambassador in reply to Gimme]

Sounds like common threads there!!! When they are good, they are very very good but when they are bad - can be horrid ...

A good true Bowen therapist will never leave it open-ended. If they can help you will feel it in 3 sessions. You may need a few more if it is very bad or neglected but not many - and you may need intermittent top-ups but you are looking at a couple every 6 months at worst. I needed repeats 6 monthly or so because of the PMR which was ongoing and continuing to cause the problem. And 2 sessions a week? Not from a good therapist, you need time between sessions for the muscle memory to settle down.

[Gimme in reply to PMRpro]

Yes, re the frequency! Something I was looking at yesterday suggested that once a fortnight for rotator cuff issues (not a tear) was often enough.

Like you say, I am thinking along similar lines that I might need to be a bit more proactive and keep on top of it, not waiting until I am in an acute situation. I intend to have a longer chat with Sam on Friday and see what she can offer. I certainly need some support on this rotator cuff thing. It's miserable and is causing me far more grief than the hip girdle did. I need to check out if there is a Bowen practitioner round here.

[Gimme]

Actually, something that I meant to say in my OP. Considering that these musculoskeletal issues have gone on for so many decades, and it sounds like I am not alone in that, it does make you wonder if it is related. I don't know how, maybe those episodes when younger are some kind of low grade mini flare that your body can handle when you are younger, but when you get older, the inflammation overwhelms the body's own healing. I've always thought that there was something slightly wonky about my body. Mind you, I've also expected a lot more of it than most people do, with some of the endurance feats that I've attempted. I'm probably just worn out and knackered now. 😀

[PMRpro Ambassador in reply to Gimme]

I have had myofascial pain issues for years - I have a scoliosis which compounds the effect. And PMR just added to it all. They appear as a whole but respond best to more individualised and targeted treatments.

[Gimme in reply to PMRpro]

ugh! Bad luck on the scoliosis. My bro spent 4 months in hospital having his fixed, but I know it still causes him issues. You have a lot going on there.

tbh, not sure I know much about myofascial pain. Looks like you've given me a spot of googling to do.

It had occurred to me before that I have more than one thing going on here. Being back on 15 mg was what helped me to separate it out. I think the PMR pain was so bad at that point that it swamped everything else. I was hurting all over. Getting that out of the way enabled me to see what isn't responding to the pred. It's given me some hope that if I can ease that part of it, I might feel a lot better overall. Thank you.

I just hope that I can get a bit of fitness back to improve my overall health. My current level of inactivity is really not good for me.

[PMRpro Ambassador in reply to Gimme]

MPS is caused by the same cytokine as PMR - IL-6 - but it is present in the muscle fascia (the translucent skin you will be familiar with from joints of meat or poultry) which causes the tenderness over large areas, or in discrete trigger points in large muscles where it is hardened muscle fibres you can feel as knots. They can irritate other parts of the muscle or nearby nerves which can lead to referred pain some distance away.

I think these trigger points are what confuse doctors into not knowing the difference between PMR and fibro ase they can be similar in position.

[Gimme in reply to PMRpro]

Thanks pro. That's very interesting. I'll discuss that with the osteo on Friday. She did say that she thought that my arms are actually referred pain. And if the same cytokine, presumably responsive to pred? Which might explain the partial response that I am getting?

[PMRpro Ambassador in reply to Gimme]

Indeed. In Italy I get targeted injections into the trigger points if they are really bad. enough oral pred eventually sorts the inflamed muscle fascia and since I have been on TCZ that has pretty much gone altogether. They also use a needling technique in the regions of the trigger points - steroid plus lignocaine usually but even saline works. Done sub cutaneously to form a little blister and it stimulates the underlying muscle tissue so it relaxes. Sounds bizarre but I find it really works - the procedure is very painful since it burns as the solution goes in but I don't know anyone who refuses it when offered!!

[Gimme in reply to PMRpro]

Just to make things even more fun, I did myself a mischief yesterday. I mowed my lawn, which is about the size of a pocket handkerchief and I have the smallest lightest mower I could find. It took about 10 minutes. I felt sore and exhausted after and I rested for the rest of the day, but I felt like I had been hit by a bus this morning. I need to try and get this sorted because the reaction is completely disproportionate to the level of activity or effort that I put into it. I'm getting quite concerned about how decrepit I have become.

eek! at the needling. You're a tougher woman than me. Or maybe I just haven't got quite desperate enough yet.

[PMRpro Ambassador in reply to Gimme]

It is SO effective we actually ASK for it!!

[GrandmaPirate]

I got PMR 5 years ago and at that time echo exam showed I had a rotator cuff tendon rupture too. Both PMR and rotator cuff were causing lots of pain. My rheumy put me on prednisolone 20 mg daily, which did a miracle. I could move my arms almost normally and sleep improved a lot. I am a very active person (pilates, cycling, walking) but I added once a month osteopathy to this. This helped me alot during tapering to 1 mg/day after about 2,5 years.I continue to be on 1m/day pred and once monthly osteopathy and since 3 years also once a month relaxing (Thai) massage.Last year I feared that more shoulder muscles were giving up and I asked for an echo. It showed my old ruptured tendon and the 3 other ones "overworked" . I told my osteopath and she gives my shoulder extra attention. I use on my arm and shoulder arnica gel if my shoulder is really painful. My rheumy tells me that the rotator cuff pain is not PMR pain. My lab.analysis shows low CSR, but we know that some PMR patients have normal Labs.So conclusion: osteopathy helps me really also because the osteopath gives me hints for good daily exercise which I added to my pilates.

[Gimme in reply to GrandmaPirate]

Thankyou, interesting post. It's food for thought. Sounds like you understand your body very well. Love your screen nickname.

I think for now I am going to stick with this lady, because if she can loosen up some of this without getting too pokey and hurting me, as has happened before, I could end up feeling a lot better than I am. I can't carry on without treatment. I have become so inactive that it will prejudice my long term health.

[Pippah45]

I too am a fan of Osteopathy and also had treatment through PMR/GCA.

[Countrykitten]

I've had to rely on Osteopsthy to keep me movimg for over fifty years. It was my Osteopath who first suspected PMR and I've been on steroids (Depomedrone) for three years. I have very gentle treatment. Good luck.