What are your thoughts on this

I feel the same pain....getting out of bed with stiff and aching buttocks and hips.  I am on 20 mg of prednisone and will be for a while, only reducing with 1 mg a month until I reach 15.  I receive Physical Therapy (ultra sound, massage and heat) for the lower back twice a week which has helped some.

Cat scans and x-ray do not show inflammation.  I am fairly new to PMR and the lower back problems did not get bad until recently.  I had other flares like neck, thighs, shoulders but this pain is tough to manage and deal with.....

I am sure you will get advise from more knowledgeable members of this forum.

ALL THE BEST TO YOU.  I do know how you feel - I know the pain is awful.

Erika

Oh I am sorry to hear about your dodgy lungs. Is it advanced or just starting? Are they going to be able to control it for you? That is always the scary bit about fancy tests - what else might they find! I had a special sort of stress ECG test a few weeks ago and I have to say even I was a bit edgy - not least because of the consent form with the warnings about what can happen since it went as far as death! However, not only did I survive (though I'd rather not have to do it again) but the result is "Perfect, that is one thing that has been answered for good!"

Anyway, back to your problems. I and others have had hip/leg/bum pain and stiffness alongside the PMR, similar but not quite the same. None of the imaging techniques show up muscle spasm - and that can be one cause. The things you mention could suggest priformis syndrome where the piriformis muscle pinches the sciatic nerve as it passes through the middle in some people. Myofascial pain syndrome is another possibility but I would have thought the PET scan would have shown the trigger spots that take the form of inflamed knots in the muscles.

Have you access to a physiotherapist, massage therapist or a Bowen therapist? Normal physio is not a good idea in PMR but a physio or good sports massage therapist can also identify these syndromes and work on them by mobilising the tight muscles. Bowen therapy is a much gentler technique - and don't ask me how it works but it worked for me and has worked for several others with similar problems. One lady was stuck in bed, needing a zimmer frame to get to the loo next door - eventually she gave into my nagging and tried my Bowen therapist - staggered in with a walking stick and a friend but walked out after the first session forgetting to pick up the walking stick!

I was told by a German orthopaedic specialist who does research that both these things are not unusual alongside PMR. At higher doses of pred they are masked but as you try to reduce the dose they reappear. I am quite sure that patients with these problems are the ones who have such difficulty reducing the pred - it happened to me. Once the back problems were sorted out I have reduced to below 5mg for the first time in 5 years.

It is worth trying, especially Bowen if you have someone near you. A good therapist will tell you that if it is going to help there will be a result after a maximum of 3 sessions - if it hasn't worked by then it isn't going to. So it isn't an open-ended bottomless pit for charges like many chiropractors seem to be. A trial is being set up by the NHS in the north for a couple of years to see if it works, much like accupuncture is also available on the NHS. There are physios who have learnt Bowen but they are rather difficult to find.

Pain in your back could show in your hips.

Have you been looked into Gallstones as I have the same pain.

Might be worth a look xx

Jenni, oh I'm so sorry to hear that scanning you for one thing has revealed another totally different problem, but I do hope that by finding it now and treating it early will help.

I'm sure that those of us who already suffer spinal injuries/problems can find those problems exacerbated by PMR.  Even on the very low steroid doses, I would find that in the middle of preparing breakfast, for instance, I would suddenly experience gripping pain around my lower back and hips and have to sit to get some relief.  I also had a lot of sciatic pain.

I did find resorting to a support girdle helpful when my back was at its worst.

thanks for all the advice. Took me ages to find this on my iPad and therefore reply.

eileen did you have the stress test with ecg and Echo. I had that a year ago.

i am waiting for follow up re the emphysema so not sure what stage it's at. The pet scan said moderate. Not good. I did have symptoms before the scan and my gp had done an X-ray. Emphysema does not show up on an X-ray .

rhuematologist does think the hip pain might be due to the back. Therapy paid for privately is out of the question for me. I live on the edge financially.

i refused the drug and insisted on the old fashion way and peddled while scaned and ecg's me. I was going really fast. This was before the Pmr. Couldn't do that now.

someone suggested Bowen therapy

Eileen I had my first Bowen Therapy yesterday and already my back feels more easy. Its so gentle I wondered how it could do anything. Anyway thanks for recommending it.

My thighs and groins however are still in pain.

I had an awful experience with a GP and will make another post about it.

On the emphysema...nurse said mild after blowing in that tube thingy...however Pet Scan says moderate. I have asked for a referral to a chest specialist for him to look at the pictures and tell me if is mild or not. In this weather I struggle with breathing in the cold and cant walk fast any more...but these symptoms have only appeared since Ive had PMR and Pred. I wonder if it is mild but the pred or PMR make things worse?

I do wonder about bursitis. Would that have shown on a pet?

On the Bowen...yes she is working to a plan she has. She has started on the pelvis and legs mainly...a bit along the neck and cervical spine. She found a problem in my pelvis being out of line which she has adjusted...so I now walk better!!!! Also a problem with my Jaw. I cant wait for my next session