Not understanding

[rachelbell]

Hi

I've been on Pred for nearly 3 weeks and newly diagnosedwith diabetes at same time so medication for that also . My PMR started of as a very low back ache then came the painful arms and legs with circular pains around back after many scans etc PMR was diagnosed but half way through all this I had severe what I thought was sciatica pain in buttock and down leg . Since taking PRED I can feel less pain but my leg is much the same I am unable to walk or stand long but when I mentioned to my gp he said well you've always had problems with your back ( which I did a long time ago ) and it's not to do with PMR ?? To be honest if I could get of this pain in leg and buttock I could cope with the easier pain of PMR now !?. Sorry to go on but what does anyone esle think is itconnected? With PMR or diabetes?

Thanks in advance

[PMRpro Ambassador]

Afraid I'd say he is wrong. There is a condition called myofascial pain syndrome (MPS), part of it can be what is now called greater trochanteric pain syndrome (GTPS). This involves the piriformis muscle which can pinch the sciatic nerve which in some people actually passes through the middle of the muscle. And both MPS and GTPS are more common in patients with PMR.

MPS is caused by the same inflammatory substance as PMR: IL-6. In PMR it is systemic, in MPS it is localised in the muscle fascia and trigger points which are felt as hardened knots of muscle fibres. Experts in the PMR field are of the opinion that musculotendinous inflammation - as found in MPS - is the defining pathology of PMR.

[Nextoneplease in reply to PMRpro]

Hi PMRpro, I’ve been wondering about the possibility of MPS in my case. I have very specific pain and tender spots in my right upper arm muscle, and into the shoulder. It is often there when ‘other’ PMR pains aren’t, and has been shrugged off by both GP and rheumy as ‘arthritis’, even though it’s at least 50% in the muscle.

Should a GP be able to deal with this, or might I be better going to a physio do you think? It’s very painful. Pred helps but so does heat and ibuprofen gel.

Thanks - any advice welcome x

[PMRpro Ambassador in reply to Nextoneplease]

I sometimes get something like that and the physio here says it is PMR inflammation in the attachments of muscles and tendons/ligaments. plus MPS. She dealt with it using manual mobilisation techniques - sore at the time but it worked well,

[Nextoneplease in reply to PMRpro]

Thanks - think I’ll look for a suitably experienced physio x

[rachelbell]

I go to a chiropractor who seems to think it's my disc in my spine but just reading another report from rheumatology i tested positive for sciatica? . Then went onto have a Pet scan . My pain is so severe its changed my every day life I can no longer work .

My partner retired the same time all this happened we had great plans but now I'm lucky if I can walk around the garden we did attempt a holiday but I ended up in a wheel chair . I try and think positive but I can feel myself on a slippery slope. Hence the panic contact on here.!

I read a lot of the posts and to be honest I must be thick as it all sounds gobbley gook just wish I had a better understanding

🤪😜😥

[PMRpro Ambassador in reply to rachelbell]

Remember many of us have lived with this for some time and are familiar with it all. And many of us have been through that initial panic as we were unable to work or live as normal. Not to mention a retirement that didn't turn out quite as we hoped or expected.

Sciatica isn't a cause - it is a symptom of something causing damage or irritation to the sciatic nerve. Most people think immediately of discs - a slipped disc. But that is only one cause, muscles are just as capable of pinching that nerve too. The "tested positive for scaitica" only means that the physical tests they did suggested there is something doing that - not what it is.

Have you had the results of the PET scan yet?

[rachelbell in reply to PMRpro]

Yes they said I had small areas of inflammation showing up where they expect it for PMR but the worse was my lower back where fluid was showing at my base?? And the rheumatologist said he felt this was something else but to try steroids first

[cycli]

you are not thick but confused. Believe me when i say that it is far too early to fully understand what is happening. There are so many facets to trying to understand what happens to each of us who vary in their reactions that I suspect we will never fully get to grips with this condition. Be patient and read all you can. Read FAQ's and it will help.

[rachelbell]

Thank you I will 🙂

[HeronNS]

Don't give up hope. Many if not most of us have been in pretty dire straits at the beginning. It's a bit worse for you because you seem to have several issues all turning up at the same time and sorting out what is what and how to deal with each thing takes some getting used to. Keep on reading and asking questions and getting as much information given to you as you can regarding all the tests and whatnot. You'll find things that will work to help you. Two years ago I was hobbling around, sometimes on crutches, because of hurt knees. Now I'm fine (or as fine as an arthritic old woman can be), walking normally, although I was told by the medical folk that the knees would never get better.

And this: (You have to click on the picture to see the whole poem, sorry)

Grook "Things Take Time" by Piet Hein

[rachelbell]

Yes it very much sounds like what I feel they said there was a narrowing of my spine at the base . I'm tempted to up the pred but would ask first but I guess that's just masking it 😐

[rachelbell]

Thank you I must just keep going and hope the answers will come 🙂

[cycli in reply to rachelbell]

yes, like all of us. No choice really but I think it still helps the more we try and understand what is happening. Remember, before this condition hit us none of us understood much of what the body automatically did for us. We just expected the body to react and find a way to sort itself with a little help and some medication sometimes. It took a few days or sometimes weeks but eventually we were back to our near normal and could carry on. Not so now. We have to think about everything that changes and try to figure it out. It is a steep learning curve for all but very interesting.

[PMRpro Ambassador in reply to cycli]

Not so much of the "none" - several former healthcare professionals and bioscience graduates floating around!

[cycli in reply to PMRpro]

ok. shouldn't generalise. Some of us. 👍 still confusing at times though however much you know.

[rachelbell]

Goodness you've been through so much . Looks like I have another subject to read up on not bed time reading as just reading this has scared me 😱😱