I need some advice from you kind people. I have reduced using the dead-slow method from 12mg Pred for PMR to 5mg at present with no obvious flare (I say obvious as it's hard to disentangle small aches and bad days from adrenal issues). Previously I was on 45mg and reducing from GCA for over year. As I've got down to 6-7mg I have had severe pain and tightness in my right buttock with bouts of sciatica. An X-ray, then MRI scan, showed I have severe osteoarthritis in that hip but the surgeon won't operate as the pain isn't in my groin and inside leg. I'm being treated now in a pain clinic with Hydrotherapy which is warm and comforting for exercising. However, whatever exercise I do results in days of stiffness. My ability to walk any distance decreases weekly, if I try a 5 minute walk I pay for it, let alone a brief shopping walk. I've always been active, loved country walks, gardening, visiting National trust houses...now I'm almost house-bound. The pain specialist seems to point to the sacra iliac joint as root cause of the piriformis tightness. I don't know if there's residual PMR but I do know that my muscles have weakened alarmingly over the past 2 1/2 years and they strain to hold my body together. I feel I must try to improve my fitness but even a little exercise seems to make matters worse. I will be offered a steroid injection if this continues. Has anyone had success with this or any other way back to mobility? At the moment, my daily stiffness is hard to bear.
Exercise, PMR and Piriformis Syndrome: I need some... - PMRGCAuk
Exercise, PMR and Piriformis Syndrome
Hip OA - find another surgeon!..has it been x-rayed - I never has groin or inside leg issues, but my hip was completely kaput! In fact the surgeon put it more bluntly when he saw X-ray!
I started Pilates (but you need a teacher who does one-to-one sessions initially if you can ) whilst I still had GCA as my legs were getting very weak...and have continued it (now in small classes after first couple of sessions) ... Covid allowing for the past 8 years - has help my OA pre and post 3 joint replacements immensely.
Also have sacroiliac issues, but that's been there for donkey's years... can't blame GCA.
You might find that paracetamol before exercise does relieve some of the pain, and cold and heat therapy afterwards, so keep trying...short sessions (even 5 mins a time) 2 or 3 times a day, rather than 30 mins in one go.
Yes-we started with an X-ray last August via NHS. GP surgery phoned me to say I had severe osteo arthritis in the hip joint and seemed to imply I needed a replacement. The list for surgery here in UK is years and I found our health insurance would actually cover it. But the (eminent) surgeon in the clinic said no -he thought the pain was SC joint and would not operate if I had no symptoms in groin area. Referred me to the pain clinic where I have the hydrotherapy. I'm due to see the pain specialist in a month's time and I hope for a review of treatment. I've also had a pelvic MRI scan that certainly shows the damaged hip joint but nothing obvious in the SC joint. It's all a huge add-on to the horrible GCA/PMR journey. At this point I should be getting some strength back but the opposite is true.
Oh dear, I know how debilitating hip arthritis (and other joints) can be so I’m extremely sorry for you. Let’s hope your appointment with the pain specialist brings better news for you.
I have sciatica once in a while, really painful caused by problems with the SI joint. You say you have osteo arthritis, but your hip joint is not in a bad way needing a hip replacement. You are very lucky having access to a hydrotherapy pool. The one at my local hospital has been out of action for years.
I had steroid shots in both sacroliac joints about a month ago together with the technique called needling for the back muscles (multiple subcutaneous injections of a small amount of lignocaine) - will probably have a repeat on Friday, definitely of the needling, hopefully of the steroid infiltration too. The relief after the last session was amazing - I could walk at normal speed and didn't feel as if I was trudging along. For some reason I was fine until last weekend when I got very chilled on the Friday, seem to have flared and EVERYTHING is stiff and sore now!!! Especially my bum and upper arms ...
I'm not as bad as you, I can walk for 45 mins before feeling it enough to need to stop, but I have the tight muscles that limit activity and are sometimes painful. They are a lot better about this here in Germanic central Europe than in the UK and take it seriously, I was managing it really well with physio and Pain Clinic sessions for the shots and then came Covid. It took 18 months to get really uncomfortable without the pain clinic. Now I know I can have the same help from my rheumy - hallelujah. Suppose I should have asked before but I was a bit occupied last summer/autumn.
I suspect my pain specialist would say the opposite to yours: the tight piriformis is aggravating the sacroiliac inflammation, But in my experience the best results are obtained by managing them as a unit - hence the steroid infiltration of the sacroiliac joints and the muscle work at the same time.
And I echo DL - find a doctor who looks at the patient and their pain more holistically. Something needs doing - it may not be the hip, but there is something wrong.
Sorry to ask, but is that the full name for it…’needling’? I’m suffering badly for past 2 months, but no longer sure it’s sciatica. My GP on hols next week (half term, small children) but have appointment in two weeks. He did suggest a chiropractor once, but pain too acute & near surface, & deep groin pain joined in last week. Complicated…left side only bad at back of hip & hurts badly if I pick up anything heavyish. Right side I thought was classic sciatica I’ve had before, but no ‘butt’ pain that I usually get. Pain, as usual, down outside of leg, knee & down, but now this truly sharp inside leg & deep in groin. Usually just stick it out & it goes, but it’s affecting our two days walking in the forest each week! I set off in normal pain, we walk slowly, but half way through I’m limping & it’s too acute (making walks shorter, too, I’m not that sadistic!) Tried…heat pads, electric blanket, soaking in slipper bath, pillow between knees, tennis ball, exercises & stretching, very slow treadmill for five mins only, etc etc! Need to try ice. Legs wrapped in blanket if sitting down. Any advice welcome…morphine doesn’t help, nor my daily tramadol. Can’t take ibuprofen. Have OA in fingers, thumbs, wrists, toes. Thanks, S z
Needling - only English name I know. I did write about it the other day replying to someone if you want to scroll through my replies.
Finding the links was easier than I thought
dgs-academy.com/en/trigger-...
describes dry needling which is akin to acupuncture (but they do emphasise it ISN'T acupuncture) but my medics use wet needling using (usually) lignocaine/lidocaine in a hypodermic syringe. A small amount is injected subcutaneously so it forms a tiny blister under the skin - which is why it is called quaddeln in German. They sometimes use a steroid or even plain saline which also works well. The lidocaine makes it a bit less uncompfrtable - and injection can be very painful, it burns at the time, but it is very short lived and most of us really don't care and come back for more because we find it works so well!
If you search this in google
Physiotherapie - RSZF - Rheuma- und Schmerzzentrum ...rszf.ch › Therapien-Trigg...
you should get the option to translate it before clicking on it - then you can read it in English
And there are these:
jmedicalcasereports.biomedc...
bidmc.org/about-bidmc/welln...
Thanks very much indeed..& I can probably cope with the German, will give my brain a jolt! I want to get familiar with it before my doctor’s appointment, then he what he suggests…before I suggest this!! Very kind, take care, S x
Honestly don't know if Pain Clinics in the UK use it - if you can read German you will find loads online because there are a lot of clinics that practise it here. Even my GP will do it for me (she is rheumy trained) but the rheumy is better than she is - he probably does it more often!
Oh dear! I can't suggest anything as I'm in similar position (but I do know that I have an osteo hip on same side) Just try a little stretching (5mins) 3x a day. I love gardening and pruning three roses at the weekend crippled me for two days.If I look back to last summer I can see how much worse I am. Yes I'm aging, but not this fast!
I agree…very frustrating thought as we are only six months older! I have an alpine rockery that needs weeding, & some pruning to do, & so much on my ‘to do’ list! I’m doing the stretching exercises, but maybe not quite as often as I should! Take care, S x
some of your issues sound very similar to what I have been having, always have the tight hurting hamstrings, glutes, piriformis, and lower back tightness and pain when I walk, osteoarthritis, slipped disk, spinal stenosis, but recently had severe pain inside thigh, and groin, also, side of hip, and at times stabbing pain in the sacrum area, but wanted to say, had an MRI on hip week ago, showed a ""labral tear"" among other things, which rheumy suggests cause pain in groin, inner thigh and front of thigh, down to knee, so deciding if cortisone shot be helpful, see rheumy on Monday,
Interesting ! I always take the injections if offered, they’ve worked well for me with thumbs & shoulders, but all worn off right now. I’m waiting a bit to see which hurts most out if toes, thumbs, shoulders & back. I’m in an eleven months queue to see a rheumy, & they doubt if I will see the one my GP has referred me to…so trying to forget it all & get on with life. The essential tremor is now in both hands & arms, the left thumb so bad I can’t lift a cup most days, & the latest hip x-Ray showed my muscles are growing bones over them! Have you considered sciatica? Mine is truly bad right now, & causes some of my back pain, leg pain, groin pain, & is very sharp indeed! Hope you get the cortisone, do let us know if it works & just where the injection site is, please!! Thanks, S x
well I hear so many controversial opinions on cortisone shots, I am struggling with what to decide, my groin , thigh, hip pain has settled a little, even having tear is soft tissue around the ball and socket in hip, but glutes, piriformis, and hamstrings still so painfully every day, last all day, so don,t know if a cortisone shot may help relieve that temporarily, and of course will be probably going back for more physio therapy treatment,but will refuse the ""dry needling" dont think that was helpful, maybe even contributed to latest painful 2 weeks, groin pain, thigh pain, etc, and this physiotherapist , although used tens, ice heat , massage etc, never gave any exercises for me to do
The only controversial thing I’d heard re injections is people moaning that they hurt a lot (mine didn’t) & that they didn’t work (all but one of mine worked, but of course they do wear off!) Perhaps the physio felt your pain is too acute in this phase for exercises? I have had to give mine up for a while due to strong pain in many places! If I do exercise for one item it badly affects another. I would try dry needling if I was offered it, I know it’s helped PMR Pro a lot. I would take amputation of most body parts right now! But if yours is settling, that’s good, let it be!! I can’t move forward until I’m seen by a consultant, & with an 11 month wait, near enough a year before I can start any treatment. My GP thinks I may have been on the wrong treatment path for 3 years…so make that 4 years by time I see the specialist! Good luck!
What I get is wet needling - never tried the dry variety. And I agree about steroid injections - never had one as painful as what they are for!
You lucky youngster you!🤪 I walked 500 steps the day before yesterday (because I felt good).😏 Result? The next day unable to move! My belated New Year’s Resolution - “give up all exercise”.
I found acupuncture worked for me. It last occurred just before the lock down.
If you do decide to try it make sure your practioner is registered.
Sorry, I can’t help, but you will see my ‘cry for help’ in response to PMR Pro talking about needling. Our main joy right now is walking in the forest here, & gardening, & it’s getting harder, & my mobility is decreasing! Good luck, S x
Hi, I've been in a similar postion, active and out about most of the time , to not being able to walk down the road !Missing out on so many things. I was beginning to feel very low, the pain in my leg and bottom was unbearable.I had a Rheumatologist app and by chance I got talking to a retired Physio, she asked if I'd ever tried resistance bands ! I was sceptical at first.Anyway I thought nothing ventured nothing gained! So glad I did, it's made such a difference, my pain is lessening, my muscles feel stronger and my balance is better.I'm not saying it's a cure but it's certainly made a huge difference to me .! I got a light weight one for a fiver on Amazon,hope this may help .Best wishes Viv.
Thanks for this, I'll look them up. Yes, this is very depressing, we loved our country walks and garden visits, now I dread walking any distance.
Sorry to hear of your ongoing pain, and worse, the poor response of the surgeon. Lots of support and shared advice of how to perhaps proceed.
This post and the responses are helpful to me as I’ve noted in the last year+ similar symptoms (tightening and pain in right buttock that gets worse after 45 minutes of walking). Sometimes I get pain from sitting for long periods in the wrong position. I also noted the pain wraps around the right hip, but no pain in my hip per se. Time to make a follow up appointment with my GP and start investigating further. I suspect SC joint and piriformis issues and so did GP when I first reported it (but it wasn’t as bad back then).
You are quite accurate about the impact our mobility has on us. This combined with PMR/GCA can feel overwhelmingly frustrating and sad as we mourn the loss of what we used to be able to do. Don’t forget there are more orthopaedic surgeons out there…a second opinion may be in order.
Thanks for your kind words. I'm due to see the pain specialist in a few weeks and I will now take up her offer of steroid injections into SC joint and piriformis muscle. I too find stiffness when getting up from sitting and the pain 'wraps round' my hip joint. I'm trying to do my yoga stretches twice a day but find I'm really too stiff in the morning to do much, better by early evening. If It was on the other side too I'd think I had a flare of PMR. Yes, if this doesn't resolve I shall get a second opinion on the replacement op. There's no doubt that my hip joint is done in.
Hi, I have been doing excercises for over 2 months now for piriformis syndrome and it has improved tremendously. I saw a physio privately; it was she who diagnosed the root of the problem. I also have PMR and am tapering pred dose very slowly. I don't think the two things are connected as I've had problems on the right side of my hips long before I suffered from PMR. In 2016 I had greater trochanteric pain there which was so bad I had a hip x-ray, in case it was the hip joint, luckily it wasn't. I do notice that my stamina and energy are reduced since getting PMR and I've had to adjust my idea of how long I can walk accordingly.
Yes, this stiffness in the hip preceded GCA/PMR by many years, but it was OK and loosened up after a little walking or work in the gym. I've had various physios giving deep massage etc. but always it came back. It never stopped me doing things, now this is actually crippling. Something's wrong...
I am interested in what type of exercises you have been doing, to get piriformis muscle to relax , and aleviate pain, my physiotherapist was doing ten,s , ice, heat, massage, and eventually dry needling, but even that did not give relief, and since I now have had MRI, and discover a tear in the labrum area, and groin, and front thigh pain, Im very hesitant to have some of the treatment, ie, the dry needling, that my physio did?
Hi, I have a list of the exercises at home, but I'm away for a few days. I'll check it and let you know toward the end of the week. Must remember!
ok thank you
Here are the promised excercises I did for piriformis syndrome. Work up to 10 repeats on each side gradually. Clam (keep the hips rock steady and don't let them lean back, it's only a small movement). Bridge, rolling spine up and down slowly. Single leg bridge, try to keep hips level. Side plank, on elbow (hard work!). Lie face down, knees bent at 90degrees, flop heels out, hold for 30 seconds, only 3 repeats. Hope these make sense to you and that it helps.
thank you,
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