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Myofacial Pain Syndrome

Posted , 8 users are following.

linda82701_USA
linda82701_USA

I think EllenH stated she also had myofacial pain syndrome.  My question is anyone else have this and did your doc diagnose this?  What do you do to help it?  Is it also an autoimmune disease?  If so, shouldn't pred help?  These are things I am going to talk to my doc about.  BUT get the best information here so thought I would ask you all first. Thanks.

 

1 like, 19 replies

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  • tina-uk_cwall
    tina-uk_cwall linda82701_USA

    Posted

    Sorry linda, can't help you with this query as I luckily don't suffer from this problem. Good luck though. Regards, christina 
  • EileenH
    EileenH linda82701_USA

    Posted

    There are others on the forums with the symptoms but I doubt they ever got the label. Several people on each forum have tried Bowen therapy with similar results to me. Cortisone injections work if you have a doctor that will use them - I've had them too.

    I don't think it is an autoimmune disorder in the same way PMR is - but it is inflammation of muscles caused by spots of concentrated cytokines - inflammatory substances. Pred does nothing to affect the autoimmune disorder we have in PMR - it has caused the body's immune system to mistakenly attack itself and cause inflammation. The pred works on the inflamed areas and that is why the inflammation in MPS is improved at higher doses of pred. It is a bit like a dirty cloth - just putting it in the washing machine with ordinary detergent might work on the less dirty areas but the really greasy and dirty spots remain and need the extra cleaning power of Vanish or something put straight onto them.

    So yes, pred does help at higher doses but you often don't need to use a high oral dose if you attack the local problem areas specifically. Localised treatment (cortisone injections or manual mobilisation of the troublesome bit by an experienced physiotherapist) smooths it all out a bit and the lower dose of pred is enough. This idea is going to be looked at by one of the research groups.

    • linda82701_USA
      linda82701_USA EileenH

      Posted

      Thank you so very much.  This makes sense to me about what is going on and why it has been helped a little with pred.
    • linda82701_USA
      linda82701_USA EileenH

      Posted

      Have you heard of the Graston Technique?  It is a VERY PAINFUL scrapping of the inflamed areas.  My chiropractor used this technique on me and so has my PT.  I have had this done a number of times.  But it did not help.  Just read about the Bowen therapy.  It sounds marvelous.  I have to find a practitioner.  Did your doc use this therapy on you?
    • EileenH
      EileenH linda82701_USA

      Posted

      I've just posted on the other thread too.

      No, no doctor, just Joanne in England, she is a Bowen therapist and you don't need any referral. Here in Italy I had a pain specialist, an anaesthetist, who used cortisone shots and manual mobilisation techniques - as well as something called needling in English - you'll find websites for that in the US. It is exquisitely painful but does relax hard muscles wonderfully!!! Bowen doesn't hurt at all though!

      I shall have to look up Graston...

    • EileenH
      EileenH

      Posted

      I just did - but I don't think it would be a good idea in PMR. I think the muscles would suffer rather and take a long time to recover - a perennial problem if you use aggressive massage or physiotherapy techniques too. Bowen is very gentle - but it can also release cytokines into the general circulation and you may feel as if you are having a PMR flare the next day. Drinking lots of water helps there and you don't worry as much when you are expecting it. 
    • linda82701_USA
      linda82701_USA EileenH

      Posted

      Will do investigating on needling and hunt for a Bowen therapist.  Thanks.
    • linda82701_USA
      linda82701_USA EileenH

      Posted

      Thank you so very much.  You have been such a wonderful resource and inspiration for me.
  • rapha
    rapha linda82701_USA

    Posted

    Eileen is it a bad idea to go for a massage to a beauty salon when one has PMR 
    • EileenH
      EileenH rapha

      Posted

      I suppose it is yet another case of we are all different, I go for massage and enjoy it and feel I have benefitted from it. Others find their PMR symptoms flare - for the reasons I mentioned above - and feel it is not for them. It is the same with physiotherapy - a good therapist who understands PMR will probably be able to help with appropriate approaches but aggressive treatments will cause more problems than they solve.

      Either you decide not to risk it or you find a good therapist who will discuss your problems and concerns - and then you try it out and see how you respond. If you try once and it poses problems - don't go again or discuss it in depth with the therapist.

    • rapha
      rapha EileenH

      Posted

      Thanks Eileen, guess I won't take the chance at the minute as struggling with terrible fatigue and couldn't cope with a possible flare up!  Just reduced to 20mg pred today for gca/pmr.  Thanks a million for the invaluable info you post here, it keeps me going.
    • ptolemy
      ptolemy rapha

      Posted

      I have massage and enjoy it. I do find that from the waist down I am much more tolerant than on my shoulders which do seem sensitive.
    • EileenH
      EileenH ptolemy

      Posted

      Yes - at one point if someone even just touched my shoulders I jumped! I can prod quite hard now and it's OK. 
    • constance.de
      constance.de rapha

      Posted

      I go for a massage once a month.  It's not the money that stops me going more often, it's the pain the following day!  However, I just love having a massage, so I grin and bear it.
    • EileenH
      EileenH linda82701_USA

      Posted

      Can't really remember - but at the moment I have back twinges which probably need a session of Bowen but it's a case of fitting it in with my husband's timetable (which changes from week to week if not day to day!). However - today I feel totally knackered and when we went for a walk earlier, yes, I was out of breath! Mind you - it is about 22C in the shade and brilliant sunshine to boot so roasty toasty in the sun which might have a bit to do with it.
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