Hi everyone I've had terrible aches and pains lately. Mainly in my lower body hips and down. I'm at 7mg of Pred these days.
Yesterday I had to take Co-codamol (prescription strength) which I found in a box. They were a bit old but worked a bit and I was able to function a bit but with no lifting or walking.
Usually I'm very spry and love going out wandering. I don't drive these days as I don't trust myself to be able to stop properly. So I am getting an eScooter which I know I can stop with my hands and the way the things are laid out.
I don't know what to say to my GP on Monday? Aches and pains... What else can I do???
I have similar low back problems and they have been horrendous for the last few months. For me they are a sign of a flare of the autoimmune disorder underlying PMR starting up - it has happened every time, probably 4 or 5 times over the years. It may be you have reduced too far and let a flare build up.
For me it involves the piriformis muscle and also builds up to greater trochanteric pain syndrome - the new and trendy name for trochanteric (hip) bursitis so the whole lower back hurts. There are stretches that help both aspects and that is what I am usually given as physiotherapy.
Not sure that some of the second lot are very practical for us - but some of the exercises are the same and can be achieved by someone with PMR!
I find a good flooding dose of ibuprofen (800mg) and sitting with heat over the really sore area helps in the early acute stages. Once it is chronic it is far harder. The trochanteric pain is harder to sort - here they like using a soundwave treatment similar to lithotripsy but adapted for soft tissue but it takes some weeks and I also had to wait for an appointment. I do wish someone had offered me a steroid jab - I've had weeks more being unable to walk further than the village as a result.
Sorry to hear you're going through a bad patch at the moment. I hope you find some relief soon. Thanks so much for the links. I have very recently developed what I thought was sciatica . Since visiting a physio I now know sciatica is a general term. My problem is with the piriformas. I've never felt pain like it ! Very different to my normal PMR aches and stiffness.It renders me almost immobile when it strikes. So frustrating, yet another problem to deal with on the long road to recovery from PMR . I'm down to 4.5mg Pred now but feel I'm just about managing at that level. Spoke to the rheumotology nurse and was advised" this has nothing to do with PMR do not increase your steroids , you should have decreased further by now" Thanks for the sympathy nurse!!!
And her ignorance - it IS to do with the PMR as piriformis syndrome is part of myofascial pain syndrome and there are PMR experts who are now realising that that may well also be the mechanism underlying at least some of the PMR pain. Claire Owen in Oz is one. I read a really good paper about MPS the other week (not from a rheumy) and the discussion in it really did account for the all over muscle pain we get that is worse when you prod the muscle as well as the joint stiffness. But yes - sciatica is a symptom, something is irritating the sciatic nerve, everyone tends to think it is the spine and discs but there are other causes - like piriformis.
The sciatic nerve passes through the piriformis muscle so if it is tight, it pinches the sciatic nerve. That was how this episode started back in March - and one morning I had no choice but to all 112 (our 999). A&E weren't a lot of help but I had a rheumy appointment a bit later in the day and went straight to him - he sorted it so I could move again. Much of it is back to about its usual but the trochanteric bursitis is getting worse not better. I finally had the first session of soundwave therapy last week - and it seemed to make the left side worse - the right is better I think! I have another session in 10 days.
I have say, there are so many "things" related to PMR that it's virtually impossible to find a GP with even an inkling of knowledge of the condition, let alone the willingness to listen to potential linkage. (Not quite sure if I put that correctly.)
Thanks for the quick reply and comments. You have my deepest sympathy if you suffer from this on a regular basis. I honestly couldn't believe it. I had a couple of twinges which made me think something was wrong , then on holiday got up ftom sun lounger and literally couldn't move without crying out.. Took me half an hour to hobble back to the room. I'm sure you can imagine how difficult the flight home was 😱Good luck with sound wave therapy x
On three occasions I haven't been able to get out of bed without the scream out loud effect! When it happens, 800mg ibuprofen and a hot water bottle will usually get you to a state of being able to get to the bathroom!
Haven‘t you got a medical alarm button? I bought one (run by die Johaniter) when my husband had to go to meetings and I was several hours on my own (well he insisted actually).😂 I wear it even if he is away for two hours now.
No - not been that bad yet and I have my phone next to the bed anyway, Funnily enough, I looked at the "works anywhwere" version from the Weisses Kreuz earlier - but 41 euros a month feels a bit steep!
I have had frequent of bursitis during this PMR journey. My Rheumatologist gave me some exercises to do which, I think, have helped and it hasn’t come back. I do leg lifts lying flat and then side leg lifts - on my side. I think they have strengthened my hip girdle. Since I’m fused to the sacrum, from scoliosis surgery, my hips don’t sway like an average person so there’s a limit to what I can do with them.
Was about to say - I've had steroid injections for bursitis in hips and shoulders in the past, in the early years. It must have helped but can't remember details now. I don't think I get piriformis problems but do get sciatica and sacroiliac problems from time to time, don't know if that is connectd to PMR or not. My sympathies, back pain is a debilitating bugger
Given the number of people with similar problems - I think that more work needs to be done on the relationship between PMR and MPS. You can have each without the other - but I think there is one form of PMR (at least) where they are inextricably linked. It is difficult to manage and hurts like hell with a lot of disability.
It is always the start of a disease activity flare for me - this time it was Covid that messed it up as I had nearly 2 years without the access to physio and Pain Clinic that was managing it very well. I have a scoliosis - and eventually the balance of the back muscles just gives up
David, the exercises PMRpro has sent links to have helped me on many occasions. Also, if you have access to a pool there are some great exercises that are easy done in the water, which have given me relief over the years.
Hello. Like PMRpro I have trochanteric pain syndrome. Very sore to touch over the side of the hip, knife in the back of the hip due to SI joint and generalised back ache. I have had good success with steroid injections under ultrasound or X-ray guidance through the pain clinic. Your GP should give you a good back exam and maybe refer you for an MRI to rule out spinal problems or osteoarthritis. When I was on high steroid doses due to a flare most of the pain improved so I think there is a PMR component. Hope you can get some relief, it’s such a drag to have constant back and hip pain.
I can’t. If my head goes under water I get panic attacks as I nearly drowned when I was three years old
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