What are your thoughts on this

Posted , 6 users are following.

Hi - sorry I dont post much. I do follow lots of posts though.

Anyway...long story shorterned. Whenever I tried to reduce more than 1/2mg a month, i got quite bad withdrawal. But some time back my rheumy wanted me to try 10mg one day and 12.5 the next which was coming down from 13.5. I got severe pain in hips, groind and upper thighs so went back up which the rhuemay agreed to (Dr. Quick who wrote the Bristol paper). 

But the hips have remained the same which are very stiff in the morning and not very comfortable all day. My bad back also plays up a lot with painful vice grips in buttocks and lower back. 

I was sent for a pet scan and felt sure it would show inflammation in the hip area...but, it did not? So I wonder if this is a seperate issue for exampe pain related to the back. Its wild because I can feel the inflammation or at least the stiffness and pain.

Its unfortunate the PET has showed I have emphasemia so very depressed about that

1 like, 11 replies

11 Replies

  • Posted

    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

  • Posted

    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.

  • Posted

    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

  • Posted

    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.

  • Posted

    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.

    • Posted

      Yes - drug stress test with ECG and echo! Interesting I think I'd describe it! No desire to need another in the near future! Is it done as an outpatient appointment where you are? I felt most peculiar for an hour or two after - and the dry mouth from the atropine was not nice at all, I couldn't even speak to my husband without a slug of water! Thank goodness for bottled water!

      Sometimes I wonder if GPs look to see if the test they are ordering is the most appropriate. One that annoys me is an ordinary x-ray for damaged limbs and joints. Yes, it shows breaks - but damaged tendons/ligaments are more painful and often far more difficult to get to heal and they don't appear on an x-ray.

      Can you be referred for physio? Urgently? I did have lots of help from the physios in Durham in the early days of PMR - noone worked out  it was PMR but they did manage to accept I had bad back problems and referred me for physio. I had 2 physios at different times who were brilliant at relieving this sort of pain that comes on top of PMR.

  • Posted

    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

    • Posted

      It wasn't an option because of the set-up there and anyway I hadn't managed to quite complete the cycle ergometer test because of the PMR - 10 years of PMR restricting exercise and the last 3 years in particular hasn't improved my leg muscles!

      I'm the one who bangs on about Bowen redface - I think it is brilliant for back problems and gentler than massage.

  • Posted

    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?

    • Posted

      I know - but the proof of the pudding is in the eating!

      The thigh and groin pain may be due to lower back problems and may take a few sessions to improve - the therapist I saw here started at the top and then did other bits the following sessions. I don't know how yours proceeds. My wonderful lady in Durham headed for where the problem was but often it is all so tied together it just takes time.

      Or the thigh and groin pain could be trochanteric bursitis - and how much the Bowen can help with that I don't know. It helped mine but not entirely. The tighter your low back muscles are the tighter the hip joint may be (not a very medical explanation but you know what I mean) and that could be irritating the bursa. If the bowen loosens the muscles then it may get better. They suggest icing but whether it does much I don't know. Cortisone shots and not overworking the hip help! I find stairs and hills particularly bad, up or down.

  • Posted

    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

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.