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PMR for 4 years now and still struggling

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jean_b
jean_b

I was diagnosed with PMR IN 2010 and started on 15 mg of predniselone -i have been up and down several times like a yoyo at different times and regimes and can anyone relate to the pain i get whilst sitting -i get no relief from it even on 15 mgs (this is of course on top of all the  PMR syptoms -as we who have it know only too well what thy are) i have been on 5mg one day abd 4 mg next for three weeks now and can anyone tell me if i am doing right by taking paraceramol about 6am to try and offset the early morning pain then i take pfed after breakfast -i get so weepy too with the frustratin of it all  (or is it the pred doing this to me) hopefully eilleen with all her knowledge could hep me please .

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  • debbie27473
    debbie27473 jean_b

    Posted

    Jean,

    I am so glad you posted about the 'kicked by a horse', buttock syndrome. I also suffer from this. Cushions don't seem to help and if you are in company it can be embarassing. If people notice your discomfort and ask what is wrong, you can hardly reply that your bottom is killing you! I am on Tramadol for my spinal pain and I find this helps with the buttock pain also. If I take one at around 5-6pm it has kicked in (excuse the pun) by the time I sit down for dinner and some tv. I then take another one 9-10pm to stop the 'leg jumping syndrome' when I go to bed. As usual with this forum it is great to know we are not alone with our weird array of symptoms! Good luck and take care, Debbie

    • EileenH
      EileenH debbie27473

      Posted

      This buttock pain bit is (as I mentioned somewhere else) a problem with the piriformis muscle - in men it is often referred to as "wallet syndrome" because it can be caused by sitting on a wallet in their back pocket - going into spasm and irritating the sciatic nerve!! It is, however, more common in women.

      It seems to happen quite a lot in patients with PMR and is probably because there are trigger points in the lower back that are concentrations of the same cytokines that cause the trouble in PMR. This makes the piriformis muscle tighten to try to relieve the spasms causes by the knots of muscle fibres that form - and in turn the sciatic nerve is pinched. Normally it would improve (as you spend the money maybe?) on its own but in PMR the cause is ongoing so it doesn't go away without a bit of manual help. Painkillers don't do anything - it eventually becomes nerve pain and special pain killers are needed. 

      The best answer is physio or Bowen - worth every penny!

    • debbie27473
      debbie27473 EileenH

      Posted

      Hi Eileen.

      I am lucky that I see a pain physio regularly at my local pain clinic. As I have an appointment next week, could you tell me which bit needs the manual help? Is it the lower back (which would be a problem for me due to spinal stenosis) or is it the buttock itself which is worked on? I am having surgery in three weeks to have a spinal cord stimulator implant and as this involves having a battery pack implanted in the buttock area and leads inserted along my spine, I am thinking any physio should be done before the op! Have I left it too late?!

    • EileenH
      EileenH debbie27473

      Posted

      The trigger points in the lower back are about where the dimples are - does that make sense? The physio will find then during an examination and if that is the problem should already have identified it if you see her regularly.

      However - if you have already been diagnosed with spinal stenosis that is a different matter altogether as it very possibly that that is causing the sciatic pain. "Sciatica" isn't the "illness" in the same way that "PMR" isn't the "illness". Both are the symptoms of an underlying problem. There are about half a dozen causes of "sciatic pain" and maybe even more causes of polymyalgic syndrome, the "many painful muscles". 

      Often the lower back problems stem from tightness in the upper back muscles which then "pull you out of shape" and work on them alone can lessen the discomfort. Discuss it with the physio when you see her because in your case it is far more complex and it is possible that it will improve a lot after the surgery anyway. 

    • debbie27473
      debbie27473 EileenH

      Posted

      Thanks Eileen. As usual, very sensible and down to earth advice which I shall definitely take! Hope you are well at the moment.  Oh, just a quick add on. The side effects from taking the Omeprazole regularly at night seem to be subsiding as the days go on and no more acid reflux attacks so far, so I'm glad I persevered.Debbie.
  • Sheilamac_Fife
    Sheilamac_Fife jean_b

    Posted

    I hope taking the Prednisone early had helped you.

    I  just wanted to add that unlike a lot of people, I did find Paracetamol a help. It had to be 1000g and up to 4 times a day. For me this worked better than Ibuprofen or Tramadol before I was diagnosed and started Prednisone. So when I had pain again when reducing Pred, I took Paracetamol 1000g and it definitely took the edge off it.

    • EileenH
      EileenH Sheilamac_Fife

      Posted

      And may I just add - IF you are someone for whom paracetamol works and you choose to take it regularly, please also ask  your doctor to check liver enzymes every couple of months, particularly if you take the maximum dose and/or continue to drink alcohol. It is not uncommon for it to mess up liver function and it is better to know about that rather than leave it until the damage is irreparable.
    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      Ah, good advice Eileen.

      I do not take it regularly. Since prednisone I have only taken it twice in one day when the shoulder and hip pain came back. 

      My only point was that it is worth a try. 

    • EileenH
      EileenH Sheilamac_Fife

      Posted

      Oh yes Sheila, I do appreciate that - but a few people have had trouble when taking it at that dose on a regular basis and so many people are totally unaware of the nastier side of paracetamol. It works best when you take the full daily dose split into 4 and take it regularly - but that is also when the most side effects raise their heads. And it isn't just the paracetamol tablets, it is the flu and cold remedies that also contain paracetamol under other trade names. But they are ALL paracetamol...
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