My lower and middle back has gone into spasm and I'm finding it very hard to resolve and there isn't much info out there on the internet so am appealing to a wider audience. I'm wondering if it is linked to the PMR or steroids because it has left me with weak muscles? Standing in one spot, walking and lifting anything even a kettle are so painful and seem to make the spasms tighter
I started back in in January when I was sitting on an uncomfortable folding chair listening to a talk that went on for too long. It brought on excruciating back pain. Ar first I just tried to continue as normal as I thought walking was the best thing to do but it got steadily worse to the point I struggled to stand or lie down or lift anything. I couldn't get to see a GP but they prescribed Naproxen and co-codememol over the phone which didn't really do anything, I kept saying I needed a physical assessment but couldn't get an appointment, our GP practice is so under-staffed. It felt like sacroilliac and or sciatica so Ispoke to NHS physiotherapists over the phone who suggested lots of exercies to do, but I explained they were too hard as by then I could barely move. NHS physios think everything an be healed by pilates type exercises. They insisted I should do them and it would all probably resolve in about 8 weeks. Things got worse and worse, 3 month came and went. I said how the heck do you expect me to do a Plank or a Cobra when I can't even lie down???!! By Easter I was having to sleep in a rocking chair as I couldn't get into bed. Desperate, I googled 'back spasms' and found the following advice:
- muscle relaxants often help (I went back to the GP but could only get to see a paramedic and asked for Methocarbamol which is helping a bit but would have been more use in the early stages)
- rapid shallow breathing can help loosen up mucles, as can very gentle forward and side stretches and 'breathing into the painful areas
- physiotherapy massage can help - so I have been paying to see one privately, no chance of NHS help as the waiting lists are too long and tey don't believe in'hands on theray anyway, it;s no longer taught ont he curriculum apparently. She reckons some people are prone to this, it may go, it may not, it may come back. The muscles have gone into spasm to try and protect the joints, particulalry the pelvic girdle
- some very gentle exercises help, but not the ones I was prescribed over the phone by the physios which make things worse
One article I found suggested it might be autoimmune related so am interested to know if anyone else has had it
I'm really struggling and can barely walk or do anything and it's been over 4 months now so if anybody has experienced this, help please, please tell me this shall one day pass! Thanks TC
PS my wonderful rheumatologist has referred me to a physiotherapist specialising in rheumatology issues but I guess it will take a while to get an appointment so would like to be more clued up if possible
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tangocharlie
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No re NHS, am waiting for the refferal to come through, only been examined by the private physotherapist and had about 5 half hour sessions. By chance, my rheumatolgist commissioned an x-ray on my spine in January and there was no evidence of osteoporosis etc, in fact it came back that my bones were in 'pretty good shape for my age', (62) which is amazing after 11 years of steroids!
What I've been fighting for the last year - related to myofascial pain syndrome which can be part of PMR but can also turn up on its own. I've had a selection of management approaches and I think I'm just about there at last. The final thing was the pain clinic doctor agreeing to use the subcutaneous lignocaine injections that relaxed the back muscles - neural therapy is one name, the Germans call it quaddeln. My entire upper back was in spasm and it took a lot to soften it up!
The physios here do do hands-on things and my physio sent me off to aquafit classes designed for rheuma patients - has definitely helped, My rheumy combined high dose NSAID infusions and neural therapy - it worked quite effectively.
Originally, 10 years ago, I was admitted for their Magic Potion: morning NSAID and steroid infusions, even infusions of diazepam - works like a dream except I reacted to the i.v. diazepam by having the very rare reaction of atrial fibrillation! But even the single full procedure I had got me mobile and then they sent me to the Pain Clinic for the longer slower approach.
is based in Gateshead but appear to have other places in the midlands and the Northwest and they may be able to tell you where neural therapy is available. They can only say sorry, no ...
I know there are places that do it in the UK - just can't find them today!
Have you ever seen Sarah's physio? She is awfully good at the PMR stuff but I think the Long PMR we have needs a bit more.
In extremis, 800mg ibuprofen and a hot water bottle does help a bit and gets you mobile but it may take a few days.
Mine is lower back - all around the pelvic bone, around the sacroilliac joints and middle back from base of spine up to middle ribs. No upper back or shoulder problems. It seems to have moved up a bit
Just wait ... Once one bit goes, it often spreads if it isn't caught early - and that was what happened to me over the dispruption after Covid was calming down but not gone. Just thinking earlier - upper back is so much better but what/s around the SI joints is still there, just not sharp pain as it was, more achey.
Yep same-ish here, more stiffness and achey lower down now, whereas at first it was sharp pain round the SI, like sciatica, brought on by any movement. The sharp spasms are now higher up, more around the ribs, brought on by things like twisting, bending, coughing and laughing. It's impossible to lie on my front, whereas when I've had SI problems in the past, about 10 years ago, I could do the McKenzie exercises like the cobra. I had been doing yoga and pilates exercises but largely gave them up the last year as I lost my balance due to the MdDS (Mal de debarquemnt syndrome), Muscle weakness could well be part of the problem, although to me it feels the muscles are there, they are just in spasm and won't flex. Everybody tells me I have to walk, but that seems to make things worse. I walked to the park for about 30 minutes, going very slowly adn sat down to rest a few times along the way on Tuesday evening and that eveing bought on a spasm after 10 mins and the the next day was in so much pain I couldn't get out the house and had to take more muscle relaxants to calm the spasm. Maybe rest woudl be a better strategy? Somebody out there must know
Yes, attended a research webinar the other day, physio saying they tell the patients it doesn't matter if it hurts and the patients do do the stuff. Sorry pardon - but when I walked it was two knives plunging into my SI joints at every step. It is wearing and induces tears.
Thanks, I try hot water bottles and cold packs, I don't think it helps but it comforts a little. I'm sure gentle stretching is a good thing. Do these things help you?
I find a hot water bottle comforting and also helpful as the warm sensation seems to mask the pain. Haven’t tried the stretching yet as I only found out about it today. The physio also said that relaxing the body helps (easier said than done I know), as tension causes more pain. I have been told that walking for 5 minutes is good, with stops in between. Hope you find some respite.
Edit: My GP has prescribed Amitriptyline to help with the pain although I haven’t taken any yet as I am already taking 9 tablets a day.
Thanks I've been back to my private physio today adn she says everal 5 minute walks are better than one 15 minute walk, build up slowly she says and stop if you get pain. That makes sense as I did a longer walk the other day and my back totally seized up. relaxing also makes sense, I could try more meditations
Yes, I read that even for each 5 minute walk you should start off slowly, build up to a slightly faster pace and then ease down to a slower pace again. Sometimes less is more, so to speak. 👍🚶♀️
I don't suppose you have a gym ball, 65cm diameter? The physio gives me this wonderful exercise which uses a pulley thing a bit like a swing suspended from the ceiling. You sit on a bench, lean on the "seat"with folded arms and your head resting on it and push it away from you to extend your back and then back to upright. Repeat, I find it very soothing and my back is easier afterwards. Obviously that means being in the physio dept but you can do something very similar with a ball. Sit on a suitable seat with the ball in front of you and your hand on top, push it away so your back curls down and then slowly uncurl and sit back up so the ball returns to its position. Amazing what it does for your back!
I've been doing something similar I think. Sitting in a chair I drop my head down between my knees then lever myself up again using elbows and hands. I found it while researching spasms and it seems to be something I can do that helps stretch without causing pain. I can't bend backwards at all, or sidewards, but can stretch up
Fantastic post Pro, many thanks, I will read and explore those ideas and options with great interest. A friend who is a GP told me she would normally prescribe diazepam but I could only get Methocarbamol, they wouldn't even give me diazepam to try for the MsDS last year, even though I begged. By chance I had an appointment with SM yesterday and she is referring me to a specialist physio - probably the one you mentioned then. We had a lot to talk about as I've managed to get my steroids down from 22.5 to 15, maybe the Hydroxychloraquine has kicked in? I've lost weight, possibly due to the methocarbamol and reduced steroids AND for me possibly best of all, been vindicated and finally believed re the MCAS after years of gaslighting and shrugging of shoulders from Immunologists.
I've had a uquick look at the links you posted about neural therapy, but can't see it happening here. My next step will hopefully be the rheumatology physio Dr Mackie is referring me to, and if that doesn't work the pain clinic. I'm sure there must be some local anaethetic injection or soemthng that'd work. I ws thinking maybe even gas and air when i was at it's worst about a month ago - if it gets women through childbirth it might take this pain away!
Oh gas and air, i was thinking that recently after ending up in A and E with my back. Different reason to yourself, nerve and disc issue, but wouldnt it be just lovely. Its a pity you cant take the valllium for bad times or to get you out of the worst of it. I was screaming with pain and it really helped tone things down if its a decent dose. You have my total sympathy, i hope you feel better. Its a hard slog.
So sorry tangocharlie this sounds frightening as well as agonising and very inconvenient. I doubt I could add to your personal research skills. Just wanted to say that this occasionally happens to my husband at the most embarrassing times and he is prescribed diazepam which seems to release it. He has been helped by skilled physical therapists in the past. I don’t think that primary care have much to offer except referrals that you have to audition for. Get well soon!
Many thanks SJ for your kindness, ideas and concern. it hurts to even cough or laugh at the moment and I certainly want to do more of the latter, and get out more, I haven't been able to do much at all the last few months and I'm feeling very fed up, missing out on life.
I'm going to ask my GP for diazepam though they have flatly refused in the past due to th danger of becoming dependenat on it and then sueing them (SP>). O, sure ther woudl be no danger from trying a short course
I have some kind of back pain all the time and never know what the cause is- PMR, osteoarthritis, pred etc. I see a physio and osteopath regularly who do maintenance work on me. In the last year, the pain has been mostly around my waist, especially in the mornings. The physio has given me some exercises to do at bedtime which have helped a lot. The osteopath straightens out my pelvis monthly and has done so for many years.
The pan does stop me from doing an awful lot of day to day activities, but I also have a very painful foot that no one has got to the bottom of yet and this stops me from walking too.
At least I can sit and lie down comfortably!!
Good luck in your quest to sort this out. It is not easy!
I have a little bit of pain when sitting, but not much, it's about all I can do. For weeks I had to sleep in a leather rocking chair I'd bought on my travels in Costa Rica that had high back support as I couldn't get into bed. I can now, but it is very hard to turn over and get out of bed again and I wake up very stiff. I find expressing F-word expletives as I massage my back seems to help. Oh how I wish I'd come on here earlier now, I've learned more today than in the last 4 months of trying to get help.
You're so right. That's what I realised from all the lovely help I got yesterday. The trouble is I've been in so much pain it's hard to even think, and the Methocarbamol has made me so drowsy too
Interesting - you're another long-timer whose symptoms overlap. For me the pain and stiffness is really bad in the mornings, I have to massage the muscles to be able to get out of bed. But trying to stand still on the spot or walk also makes things worse. I can only sit in a 'proper' office type chair with good back support, no chance of a low sofa, stool etc. The physio told me to always make sure my hips are higher than my knees which is good to know and easy to remember. About 2 or 3 years in with PMR I had plantar fasciitis in both feet which was agony but was sorted by steroid injections luckily. I have puffy swollen feet now and support stockings and wedged suport soles in my shoes help a bit but I'm told by the vascular specialists its to do with vaves in the lower legs now pumpinig properly. It has got worse as I've lowered the steroids so I wonder if part of it is also due to inflammation. PMR is so not a simple disease as the textbooks imply
So sorry to hear you are in so much pain! I have no idea if a tens machine would help you but it may be something to consider with the right advice, of course.
Thanks, I did wonder that and asked my physiotherapist. She said probably not but maybe some kind of masssage thing might, but I'd need someone to position it right
I've been Having back spasms for the last couple of months. Came out of hospital yesterday after 2 weeks Consultant in Acute Medical said xrays have shown evidence of osteoporosis. They changed my painkillers to paracetamol and Longtec a slow release tablet of oxycodone. Spasms have lessened, visit from a physio today said in his opinion problem is muscular not osteoporosis! I have an urgent referral to Musculo Skeletal On Monday afternoon and Physio will come back after he's had the report.
Its confusing - two completely different opinions. My own thought has been muscular - because I find using a heated wheat bag eases the pain. Physio said heat would have no effect on osteoporosis.
I just hope it's sorted soon, I have gone from being independent, to needing carers to wash and dress me. and prepare meals. I use a zimmer frames to get round the house, we've had a stair lift fitted and I spend a lot of time resting on the bed because that is when I am in the least pain.
Osteoporosis isn't painful unless it causes a fracture in some way. Then it hurts like hell. And doctors rarely understand muscles can cause excruciating pain and heat helps.
Mine is definitely muscular, I had an x-ray to rule out osteoporosis. It is so debilitating, and as it's dragged on for 4 months now is getting me down mentally too. I'm missing out on life. Hopefully the MSK physio wil be able to help you
I have scoliosis, and one hip higher than the other, this started many years ago......since then have developed in last few years Osteoarthritis on facet joints both sides of lower spine.....just as covid was starting my back often went into a spasm....agony, but not knowing at the time what was doing it I paid to have an MRI (which gavee the Osteo result).....Rheumatologist had to get physio email me the exercises....useless.......The only relief I get is lying on the floor on thick blanket, gently easing my back into the floor.... it seems to spread the tight muscles and loosen then to some degree. I struggle to get tr ousers off if narrow.....too painful, and as for tights.....
Hope you find some answers.......perhaps another coach holiday if you can bear sitting that long.......my back is never relaxed, always in an upright seat!
Thanks and hello, Ive been wondering how you were getting on as I haven't been on here for ages. Are you still struggling with adrenals? I've had an x-ray on my back and there's no osteoarthritis or signs of arthritis or anythng like that, thankfully. it came on suddenly in January and I'm really struggling with it and trying to get help for it, I thougth it would jut go away but shows no sign of abating at all
I don’t come on here too often, but check in every day, because after scan last spring it showed no inflammation, so now diagnosis with Fibromyalgia. Fatigue still the worst, but stuck at 4.5mg. Have awful hay fever, with horrendous itching all over, can’ t sleep because itching is so bad., Lots of irritating things going on….adrenals about average reading last year. Have had infusion 6 months ago for my bones….and so it goes on….
Yes I think that’s what will happen next week I have finally got a G P appointment and will tell her. I have had mouth full of ulcers for months, dry throat, can hardly swallow food, have been to dentist, more or less said get it checked out. Do you recommend any particular anti-histamine, I don’t tolerate meds very well! Thank you…
Steroid cream helped the urticaria a bit, but I only got that a bit on my legs, no other rashes. What did make a lot of difference was Ranitidine which helped with all the stomach and bowel reactions but it was withdrawn from the market a few years ago due to safety concerns and if I remember right I was then given Famotidine but then that was replaced with Cimetidine which is a H2 blocker so stops the reactions happening in th first place, and it sorted out the bladder problems. None of the modern antihistamines you can buy over the counter did anything for me. Good luck and keep me posted
Will post what GP suggests next week, what is strange is no rash anywhere , prickly itching. I dread going to bed because when I' m warm it's so much worse.....but have to lie down sometimes in the day as well....so fatigued.. .We battle on.....
That sounds a bit like my symptoms which are due to mast cell activation. The worst reaction was/is a sudden overwhelming drowsiness - far worse than fatigue - I was practically paralysed and unable to do anything but lie down for hours. The cimetidine has helped a lot but now and then I still get a reaction from something simple like tea or a smellthat catches me out. keep a diary of what you eat and do and symptoms and see if you can see any patterns. Reactiosn to hot and cold sound like mast cell. I doubt your GP will know anything about mast cells, it has taken me 6 years and 3 different Immunology consultants to find get a diagnosis. It often overlaps with autoimmune illnesses
I’ve had the same and I had some image guided steroid injections in my lumbar region yesterday. I got them privately but if you go to the pain clinic ( good luck) they will do them. Hope they work because moving around was really painful. Had one into my hip a year or so ago as I have RA as well and it’s been great, no pain now. Hopefully when I’m out of pain I can start some physio to build up my core which got weak from years of stiffness and pain (RA)
Injections mightbe the nect step for me, but I will see what the physio says. And I also need to gt back to pilates or yoga which I haven't done for ages as I've had balance problems. Prevention better than cure adn all that. Does swimming help you?
I have the same pain in my back. I've had PMR for 2 years and take 4mg prednisone daily. I've seen a physio and given exercises that don't help. I take Zapain. Consultant has referred me for another MRITrudy
back spasm can be many things, so it’s key to get an X-ray or even better, an mri scan to understand what is causing the spasms, otherwise you’ll be given hundreds of well intended advice but it all becomes a wild goose chase…
Hi, I had a bad episode with very sore back which spasmed a couple of times, once on the massage table (I thought remedial massage would help). I was prescribed strong pain killers and also a muscle relaxant. It settled down after 2-3 months. In the meantime I had been diagnosed with osteoporosis (likely from taking steroids) and a few months later I’d been seeing a physio to help with muscle weakness. She suggested I get back X-rays done as she thought I may have had undiagnosed wedge fractures in my spine. She said if muscular the pain usually resolves in 2-3 weeks. So i mentioned this to my rheumatologist next visit and she referred me for x-rays and yes, 3 healed spinal fractures. The back pain was April last year, osteoporosis picked up after DEXA scan in August and X-rays done in January. My back feels ok now but have been told not to lift anything for a while. I’m now on a bone strengthening med so hopefully that will help. I’m 58 and in Australia. Please see if you can get X-rays or a DEXA scan or both.
Edited to say I had to sleep in a recliner chair for those 2-3 months as I couldn’t lie flat in bed or roll over - excruciating pain.
Hi, so sorry, it is awful. I have intermittent spasms just under right shoulder blade, started years before PMR and pred. Thought to be caused by tension and lasts 3 days each time. Tens machine has helped, as has diasapan, had hot water so hot it left blisters on back, and rolled squash ball on back against wall. Tens machine gave best result but no way masked it entirely but certainly worth a try. Good luck, after all attempts with osteopath, pilates, bowen treatment etc. physio came out best.
Yes. I have lower back pain, numbness, difficulty getting from chair. Cannot stand for long periods. Thought it was affecting my legs. Have seen Physiotherapist and having blood test and scan of hips. But I think more to do with spine. Will have to wait to see. Am currently on 1mg Pred but makes no difference if I up it a bit .😊
Same here re the Pred, went up for 4 days and it made no difference, whereas in the past I could tell a difference if I even took 2.5 extra. Hope you get some good news
I’m so sorry. That sounds awful. It sounds very similar to my sacroiliac problems over the last 30 years that started off with 2 months in bed and comes back every so often, usually when I’m stressed and I bend down to pick something off the floor (that happened a couple of days ago).
I use a combination of ice packs and heat packs. A tens machine can really help - don’t worry too much about positioning them - just slap them either side of your sacroiliac.
I find lying on the floor and VERY gently tipping my pelvis back and forth using core muscles helps. Once this is possible, go to all fours and do the cat yoga exercise (arching back one way and then other.)
Walking is the key for me - but VERY short 5 min walks and often
When my back was really bad I used to see an osteopath who got me moving. Over the years I’ve learnt how to deal with it myself so that now I don’t panic and I can get over it in a few days.
I can't do a cat stretch yet but can now do some stretches in bed like bringing legs up to chest, the clam, happy baby etc. Interestng the physio today told me 3 x 5 minute walks is better than 1 x 15 minute. Thanks fo ideas
I’m really sorry to hear about the way you’re suffering. It’s interesting because I had a very similar experience earlier this year, but after about three months, it’s eased. I got out of the car, as normal; it’s an SUV so it’s easy to get in and out without bending. I took a step to the gate and couldn’t move. Back was in spasm and the pain was excruciating. I stood holding the wall with swear pouring off me and rubbed the SI area for some minutes. Then it passed and I was able to walk into the house, but in pain from lower central spine, radiating out on both sides and across both SI joints.
Basically, this continued for months. Standing and sitting were painful and bending impossible. It went into spasm for no apparent reason and I could do nothing until the pain eased. I take Zapain twice daily for OA and increased to 4 times daily, but it made no difference. I found the most help was ibuprofen gel over the SI joints and a dog round lower spine. Cold packs fir 15 minutes also helped. A shower eased the pain slightly, but only until I got out. I spoke to the GP after a month and she suggested very gentle exercises…but they involved lying on the floor, which I guess you can’t do.
Eventually it eased, but I’m left with dull lower back muscle pain. I’m still struggling with bending as it feels as if it’s going to seize up. It’s different to the PMR pain which hits the muscles across that area. I do sympathise because I’ve never experienced pain like it and it’s incredibly wearing and depressing. I hope you find something that helps to ease it very soon. I’ve no idea whether it’s related to PMR or steroids. I’m into year 6 and struggling to get below 5mg. Good luck.
Think there's a typo there, whats the bit about a dog? Downward dog stretch? Yep, my spasm was sudden. I have tried to get on to my yoga mat a few times to do some exercises but it's brought on spasms, so I'm not ready for that yet. I'm doing some basic stretches when I'm in bed but getting in and out of bad is still difficult and painful - it was impossible for weeks. I still don't get why the NHS physios (who hadn't seen me, just spoken on the phone) were prescribing exercises that I had no chance of doing - like the plank when I explained I couldn't even get on the floor. Then they were sort of blaming me for not getting better because I coudn't do the exercises they gave me! The private physio I'm seeing now is quite clear, gentle exercises only and stop if you get pain
Doh! Should read a dob around lower spine. Just a small blob on fingertip which I rubbed in.
I’m no expert, but I think the only way forward is very gentle stretching. With SI problems, the pain can be really bad. Lying on your back…and I know that’s the tricky bit because I couldn’t get there initially…you draw both legs up together then move left and right very gently. I was expecting something ‘better’ but looking back, that very simple movement, but by bit, improved flexibility across the lower back. Then I could move on to trying to bring one leg up and towards body. Very little at first but with perseverance…improvement.
It’s a slow path, mainly trial and error and very small steps. My main issue is impatience (clouded by anger at the limitations imposed). I honestly believe slow and gentle, but regular, helps. You know what works; go with it. I suspect that ultimately there’s a real problem around muscle function as a result of PMR and steroid treatment. The cause and effect conundrum will be ongoing.
I think you're right, slowly does it. I don't see much improvement day to day and sometimes seem to be going backwards, but I'm beter than I wa say a month ago, and can do sme of the simpler stretches now like you suggest. I think part of my frustration was that the NHS physio and GP said I'd be right in 6-8 weeks and it's now been 4 months ....
I’ve found managing expectations the most difficult part of this condition. It’s taken me two or three years to understand it wasnt going away any time soon. That required mental adjustment because initially I expected to be better or cured. But PMR is the gift that keeps on giving. Cataracts, muscle weakness, overwhelming fatigue, weight gain (unless diet is moderated significantly)…
In the past physio, for a knee problem and decades ago for a lower back injury, resulted in marked improvement fairly quickly. Now, with age I guess, the body responds more slowly. My mind expects results quickly with minimum effort. Body says snail pace. It’s a bit like the tapering programme. It can’t be rushed. Frustrating and tedious but that’s what it is.
GPs snd physios aren’t living with your/our condition and should be more circumspect in their comments. I hope you continue to make progress. Stick with what you can manage and build on it.
Have you tried a Chiropractor? As usual, I couldn't even get an appointment to see GP so researched things myself and found a local private Chiropractor who is a miracle worker. Things are greatly improved - am going for treatment weekly and can feel a great difference. I hope you can find a solution to your problems.
No I haven't but I am thinking of going to one when I'm sorted to build up muscles so it doesn't happen again. The Alexander technique looks useful too. I think I'm going to stick with the physiotherapist for now because it seems to be helping
My sister (age 83) swears by the Alexander technique. If you've found somebody who's helping you at the moment, stick with it!! Good Luck, there is nothing quite as debilitating as back spasms!!
Yes. Mid to lower back spasms are horrific. Worst is standing at sink, trying to do dishes, sweeping, vacuuming (impossible) and then there's the groin, hip flexors, sciatica. I've been pushing myself around the apartment on a kitchen chair just to support myself, but have to bend over for the first hour of the morning. ER doc prescribed muscle relaxant (flexeril), which only makes one sleep. My hearts goes out to you. Unsure if it's PMR related, as 32 mg. Pred does not touch this pain. Only relief is Ibuprofen/Tylenol combo first thing. 400 IB/500Ty TOGETHER. Naproxen does not work.
That describes me exactly! Standing, bending, lifting, stooping to cook, wash up etc, thogh bending down to pick something up is Ok, and I can get up from the toilet or chair OK now so long as I keep my back straight. Increasing steroids did nothing. I've Googled Flexeril and we can't get that in the UK. Im taking methocarbamol which makes me very drowsy but am going to ask for some diazepam. Naproxen did nothing, I took it for the first 6 weeks. Unfortunately I'm allergic to Ibuprofen even in gel format. nor does co-codemol but at least it knocks me out like a light so I'm not lying in bed in pain. Are you on 32mg Pred, that's a lot! Presume you have GCA then?
Apparently no GCA but there was a scare, so they bumped me up to 60 mg. immediately and now I'm trying to taper. Was diagnosed with diverticulitis last week. My CRP jumped from 3 to 42 so I bumped myself up to 40 mg. and now tapering, thus at 32. Don't want to go to quickly. My back is giving me a fit. Actually borrowing a walker to help with the mornings which are excrutiating. I'm bent over for about an hour and then gradually am able to straighten up as the IB kicks in. I don't like taking Ibuprofen along with the Pred for stomach reasons of course, but it's the only thing that almost works. My heart goes out to you.
I never thought I'd be sayiing this as usually my CRP has been always been strongly correlated with PMR symptoms. I could usually guess what my reading would be, going by symptoms and how ill or well I felt. Yet this week my CRP had shot up but other than the back problems I felt fine, no what I'd call PMR symptoms like stiffness in shoulders, hips etc. I asked the Dr if the CRP might be high because of the back inflammation and she said basically who knows, it's not a very reliable indicator, it just says there is 'somethng' going on. I tried upping my steroids a couple of times over the last few months but it didn't help the back spasms or make me feel any better or more energetic as would normally happen if I increased it in the past.
Oh most definitely yes, awful, takes my breath 😭when I get them I can't move for days. Mine come in the upper back not sure if it's related to PMR but could be to the prednisolone weakened muscle
YES! I am experiencing this right now, and have been for some time -- but not to the extent you are experiencing it. I'm a GCA patient since AUG 22, started on 60 MG pred and now down to 15 mg. But about 4 months ago I started having pain under my left rib cage. I thought it was my kidneys. After going to the GP and undergoing blood work, etc. they told me it was muscular-skeletal -- and I think they were correct. Eventually, it went away, but while it lasted it kept me up at night when I tried sleeping on my right side.
But in the last few weeks, the pain has returned -- now on both sides of my lower rib cage. It's definitely in response to physical exertion. The pain is sharp and stabbing at the same time -- it takes my breath away. Fortunately, though, I am able to sleep because the pain does not bother me while laying down -- only when I'm moving or flexing certainly muscles.
PMRPro has been talking about myofacia pain syndrome for years now, and maybe that's what's going on, but for me it seems all I need to do to help myself is stop the physical exertion for a few days and the pain eventually subsides.
Have you tried Japanese shiatsu massage? This is where I go to when I have any muscle stiffness or problems. I have read that the only way the body can keep spine stable when muscles are weak is to contract them and that eventually causes spasm.
Another "home remedy" that I use is a tennis ball. Right above the hip bone, there are two spots on each side of the spine about 2 " from the spine. When you are on your back in bed, put the tennis ball on that spot for 30 sec or so. It should give you some relief. Ideally this should be done on hard surface ( carpeted floor), but that may be too hard for you at this point.
No not heard of shiatsu but will look into it. the massage my physiotherapist does definitely helps. Interesting what you say about how it starts because tha fits what happened, I was sitting listening to a long lecture and got a bit uncomfortable but cntinued sitting and that brought on the spasm. I will try the ball thing, it might well help because I find kneading the area with my hands helps when I'm trying to get up out of bed
I am so sorry you are going through this. I have struggled with back spasms, too, although it would last a week or two, not months! It has happened to me about every 12-14 months since I have had PMR (5 years now). They come on with no warning or activity that may have triggered them, and stop suddenly after a week or so, usually. They are nearly constant and horrible. I have been prescribed diazapam, Naproxen, even oxycodone. One urgent care doctor wanted to put me on 60 mg of Prednisone, even though I was already on it! No thanks. None worked even a little! What worked was a combination of wine and marijuana (gummies). Sounds awful but it was the only thing that gave me any relief and allowed me to sleep. Of course, I couldn't do anything else as I was mildly stoned for days! Fortunately, my husband could take care of daily life (and me) but I cannot imagine what I would have done if I were alone as I literally could do nothing. Like many of you, I lived on the recliner. No answers from any doctor. (Yes, I have had x-rays and bloodwork when it was happening last time.). Now I am seeing a chiropractor who thinks it is my nervous system reacting to my spine being out of alignment and that if I keep my spine in better shape, it won't happen again. Sounds reasonable to me, as I have no other ideas!
I have often wondered what PMR and prednisone do to our muscles. I think my muscles have been 'reactive' since my diagnosis in 2017. I have many muscle injuries with just regular daily tasks: knee pain, plantar fasciitis, that sort of thing. Of course it could also be just that I am getting older. At the bad advice of a rheumy early on, I gave up yoga. Why did I listen to her? I've never been able to get back into it and I often think that was the beginning of all these injuries.
My current plan is to go to the 'stretch and flex' class offered at our senior center, start walking more (just recovered from another knee injury), and perhaps work with a personal trainer.
Good luck to you. I surely hope you find some relief soon.
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