Been tapering (basically from 15 mg PMR dx Oct) - spent 4 weeks at 7.5 because had some neck/shoulder ache (site of my original discomfort). A week ago I felt able to drop to 7.00 -no probs.... until... going to bed Sunday night, having watched TV on the sofa, I could hardly move, Dreadful pain from my R hip down my R leg down the side of my shin to my ankle. Mon - miserable with pain - sat and did nothing (not good I know!) Today took paracetamol and after shower used voltarol on my shin side..,.., midday 2 more paracetamol. - pain better. Do not think the pain is stemming from my hip anymore - just really in my side shin down to ankle. Pain is so bad I feel sick. Basically hurts (side shin) to put my foot down - to walk I have to throw myself from side to side... hang on to whatever available (which is maybe where hip pain started, cos also the other leg had started to hurt Monday as well cos I was moving funnily??). Funny I can bend my knees down and stand on my tip toes - no prob! I feel if I could get out and walk a bit it might help - but con't think I could get very far!
I know my friends here are asked a lot - but pls - any ideas whether this is "flare" symptoms, should I go back up (otherwise I feel fine - except I can't ... walk!) Or is it something else I should get checked out?
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kalimche
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Definitely get it checked out as soon as possible. It sounds so specific and as if you have somehow injured yourself. It may be that ultimately, a bit more Pred will ease it, but your doctors do need to know what they are dealing with here. If you can’t get to A&E I would even consider an ambulance. You may even have cracked your hip or something like that. Don’t underplay it. Covid is no longer the only show in town and doctors are waiting to deal with other types of emergency. Let us know how you get on.
Hmm, doesn’t sound like the average flare that people describe. The pain sounds too suddenly excruciating, too specific and in need of some expert examination. Could be a few things for example nerve compression. Do get it looked at soon.
Oooh now you have alarmed me SJ (ambulance Hospital!!) Whilst I dont want to go that far I will call surgery in the morning. I was more concerned about flare or something when my hip was involved initially, but now the prob does seem down side lower shin I agree prob some nerve or something. Tx to you both - will let's u know how I get on!!
(But must admit not expecting too much...!)
Oh and by the way, since having to give up my x3 gym since lockdown, I have been walking 2 - 3 times week, 1 - 2 hrs a time. I do feel maybe some walking would help, but dont think I could get beyond end path! Last walk was Thursday + no prob until Sunday pm!
I didn’t mean to alarm you and I worry that our group is being overly reticent in seeking help. Whatever this is, it has had a profound effect on your mobility. Steroid use can cause muscle weakness and maybe a propensity towards injury. I just want you to know that you are important and deserve good care. I am as bad as anyone else at not wanting to take my fair share right now. Being referred via the GP has advantages though. Good luck.
My husband said sciatica Piglette. But when I "googled" it was very much "from spine via bottom + down sciatic nerve along BACK of leg" - this pain is very much down SIDE of my lower leg.
Otherwise the pain is as you describe. Not all the time- only when I try to walk - oh and now I remember after paracetamol had worn off (I imagine) and I was squirming sat at my desk every time I tried to move my R leg
I suffer with sciatica, and the pain travels down the outside of my left calf and is extremely painful! Just to let you know that it’s not only down the back of the leg. Hope you’re feeling better soon.
As BPlady says the sciatic nerve does not actually run down the back of the leg but slightly to the side. I think when they say back they are comparing to front not just a bit round from the back! Do you have the symptoms mentioned for sciatica? In my case the pain occasionally went down the whole leg but sometimes just a bit of it.
No pain down my upper leg - apart from some pain in my hip/bottom - more so when lying and sitting than when standing. Massive pain on the outside of my Right lower calf to ankle area.
How long did you sit/lie down on that settee when watching the TV? You should get up and walk around every hour. We learned this when my Mam had osteo and then RA.
I learned it when computers were first introduced and the TUC advice, which was adopted all those years ago. Get up every hour, walk around, rest your eyes and move your frame. I still do that today. The only time you don't do that is when you are in bed.
Do ot be scared to go to A&E. All the hospitals have in place a 'Covid' free area.
The NHS are always on the media telling people this as they are worried that people are storing up trouble. Mind I do not mean - go for minor things. if you bruise your thumb etc. ..........you need to go.
In the meantime take a look at Mysofascial and also Piris Formis Syndrome.
I had the latter and although I went to hospital and had x-rays and physio it was not better. Bowen did not work this time, but acupuncture did.
Hi, weirdly I had exactly the same experience at the very beginning of last year! I was diagnosed with PMR in Nov 2018 & with GCA in Dec of same year. I was initially on 60mg Prednisolone & felt fantastic, walking miles most days to try & burn off some energy to help me sleep (sleeplessness being a side effect of the steroids for me) cos I was like a Duracell Bunny! Anyway, the upshot was I spent months having physio & acupuncture to get me properly mobile again....it took at least 3 months I’d say, maybe 4, before I was back to “normal”. My physio said it was possibly caused by too much walking! I felt like superwoman on the high dose & so I’d basically overdone it! Hope this helps & you feel better soon. I do sympathise!
Having re read your first post in this thread, it sounds very similar to the tendonitis I suffered last summer. The distribution of pain is the same as I had, especially the severe pain down the side of the leg below the knee. Day one my pain brought me to tears even at rest, and was exacerbated by walking.. For me apart from the first week it wasn’t so much the weight bearing which hurt, as much as the action of swinging my lower leg through on walking. If that rings no bells with you feel free to ignore the rest of this missive apart from the bit about getting advice and tests.
After about a week it was somewhat better at rest but still impossible to walk.
Tendonitis seems to be more common in PMR sufferers than in the general population.
Normal painkillers do help you somewhat,,,,but not really for walking ....which suggests it is something different from PMR, the pain of which is not helped by paracetamol etc.
Even before Covid I found it very difficult to get a diagnosis, and was reliant on getting an ultrasound scan which was definitive. I saw physio, orthopaedic surgeon, who had done my total knee replacement 5 months earlier, and my GP.
You need to start the process of getting a diagnosis, covid or not. Phone GP. Can you get a phone appointment with a good physio? You need and deserve to get some help despite COvid situation.
Rest was essential for me. Once I had the diagnosis I only allowed myself to be on my feet for 5 minutes, as after that pain kicked in. Heat works better than ice for tendonitis. And I took a magnesium supplement to keep muscles around the tendon relaxed. If muscles are tight it pulls on the tendons making tendonitis worse.
I wish you the best of luck. I reiterate....get some advice!
The track of the leg pain is the same as I had with low back muscle compression of the sciatic nerve. And yes, I know that doesn't fit with the literature! I never let it get that bad now - you will know why! The sciatic nerve passes through the middle of the piriformis muscle and if it spasms it pinches the nerve - it isn't always due to discs. If one side is bad it makes you walk unevenly and the other side soon joins in. The last time mine was that bad I was admitted - the first line treatment here caused other (unusual) problems for me but it set me on the pain clinic management that has protected me from repeats so far!
My go-to emergency approach is 800mg ibuprofen in one dose (a loading dose, then you top up if required with normal doses) and carefully positioned sitting upright and well supported with a hot water bottle over the lower back to try to relax the muscles causing the problem.
I had the same type of pain: intense, going from shin down into foot. I had it a long time. Doc said he had no idea what it was. He sent me for a scan. That showed nothing. But finally I learnt about magnesium and it gradually got better. Took a long time; eating bananas and taking maximum dose of a magnesium supplement.
What helps me with back and leg pain is a very hot shower in the morning, concentrating the flow on my lower back and legs as I lean forward. I find that if I lie down for more than an hour in the afternoon, I have difficulty walking when I arise. Sometimes whe my legs are stiff and I am getting in the car, pain occurs as I left the leg. I do not believe this is PMR. More likely it is the nerve running through my hip down my leg.
Doctor asked me lots of questions about blood clots - have I ever had a DVT? which rather took me by surprise as not anything I had considered! Or cellulitis? I think she ruled these out though as I said there was no redness or inflammation or swelling, and it did not feel hot to the touch. Asked whether I had any back or hip pain with the PMR (no - mine was all upper torso). Except just remembered - I had dreadful pain in my "tail" when sitting! Advised me to up the pain killers to 2x co-codamol, 4 times a day. On friday morning another Doc will ring me to find out how things have progressed, and if he considers it necessary, I will go in to have a blood test later that morning and again, if deemed necessary, he might examine in. Meanwhile I should do some sciatica stretching exercises. So seems to be a start!
Thank you all for your responses - I will let you know how I get on!
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Does anyone have ankle swelling and leg pain?
Would love your expert advice
PMR the Chimera (as in Greek Mythology)
Bad idea!
