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Is it PMR? My husband is falling apart (with joint problems and pain).... not sure where to turn

Posted , 7 users are following.

paula05695
paula05695

About 2 years ago my husband (47) had knee replacement.  With a few setbacks, he has recovered, but seems that now the rest of his body is falling apart.  Since then he has had surgery in both the right and left  ankle tendons.  Now his rotater cuff is hanging by a thread on the right side.  He has pain in his sternum (which he has had ever since a coughing attack about 2 1/2 years ago).  The depression is terrible.  The way our family now functions is based upon his pain.  He can't do activities with either of our boys.   He saw a rheum. dr. but didn't get a good feel for this person.  There is PMR in his family (Swedish decent).  He is taking a prescribed NSAID with little to no help.    I would like to try something more natural - herbs, oils, etc.  He wants a quick pain fix - but isn't getting it anyway.  It scares me what these medicines will do to liver, stomach, etc.    Any advice is appreciated.  This is a nightmare for what used to be a very active man. 

0 likes, 15 replies

15 Replies

  • ptolemy
    ptolemy paula05695

    Posted

    I am so sorry to hear your husband is having such a bad time. NSAIDs are pretty useless for PMR if that is what he has. Currently the only thing that really works are corticosteroids. I could hardly move with pain and after fifteen hours of taking them it was like a miracle, I could join the human race again. Several people have been on this board hoping to overcome PMR with "natural" products, but in the end have given in to steroids. Your husband could always just have a week's trial and give them up if they do not work. He will then know if it is not PMR. If they do work he will be over the moon! 

    • paula05695
      paula05695 ptolemy

      Posted

      I wish the RD would have tested for this....  even if it meant ruling it out.  

       

  • EileenH
    EileenH paula05695

    Posted

    As ptolemy has already said, IF it is PMR then I'm afraid natural rememdies won't cut the mustard - only steroids will reduce the inflammation and provide the quick pain fix you are looking for. But so-called "natural" remedies that actually do anything are also having an effect on the body and many pharmaceuticals are based on "natural" origins anyway. The advantage of the pharmaceuticals is that they are strictly monitored during development and production - which no supplements are and many that are claimed to work turn out to have stuff in them that really will do your body some damage.

    However, it is a rheumatologist you need probably and if you didn't like the first one you will have to try another though you haven't given the first guy much of a chance yet - rheumatology takes time, a lot of time, unfortunately. Autoimmune disorders are notoriously difficult to identify and find the right drug for you. A week's trial of 15-20mg pred would provide a lot of information and you can stop immediately if it doesn't provide at least some relief. Even on pred we are rarely totally pain-free and lifestyle manageent still plays a major role but for most of us we are at least reasonably pain-free - as you say, it is very depressing being in constant pain.

    He was very young for a knee replacement - why was it needed? What you describe is also really not particularly typical of PMR, the pain and stiffness tends to be in the muscles rather than damaging tendons - again, what was the problem with the achilles tendons?

    • paula05695
      paula05695 EileenH

      Posted

      The left total knee replacement WAS very young.  He had bone on bone and could hardly move around without excruciating pain.  His OD would have preferred to wait, but there was no quality of life the way it was.  The achillies tendon on the right side (a year and 2 months later) was completely inflammed and the MRI showed that is was torn.  He really doesn't know how that happened....   then he recovered from that, and had pretty much the exact same thing happen on the left side.  His rotater cuff on the right is hanging on by a small piece of tendon.  His sternum trouble started after a terrible coughing attack a couple of years ago.  The sternum pain gets better and then returns whenever he has a cold/cough.  

      Seriously - it is just so troubling for him.  He is a 47 year old in the body of an 80 year old.  That is how he describes it.  There is no portion of his "old life" that is in sight.  I try to stay upbeat, encourage him, try to find the bright spots, but I am not the one with this never ending pain.  Last night he said his thigh, hips and shoulders felt like there were knives in them.  Maybe you are right - we may want to give this RD another go.  He just was so quick to give him the NSAID (which will probably destroy his stomach - and there is another problem, chronic heartburn), and didn't tell him what he might expect.  Or what the next steps might be.  Doesn't the PMR need to be tested?  

      He is a Desert Storm Vet from 1991 - and I have to wonder if he was exposed to something............... 

    • ptolemy
      ptolemy paula05695

      Posted

      The trouble is PMR is actually diagnosed by eliminating everything else. There is no really straightforward way of saying Ah yes you have PMR. You can have blood tests to see if inflammation markers ESR and CRP are raised which may give a clue, but one in five people do not have raised markers which makes the diagnosis rather difficult. On the other hand if steroids work they are a wonder drug. As Eileen says your husband can take them for a few days and just stop if they do not work. 
    • EileenH
      EileenH paula05695

      Posted

      I have to say - just dishing out NSAIDs doesn't sound very helpful! As a Vet, is he restricted with regard to healthcare?

      As ptolemy says, there are not tests "for PMR", you look for everything else it might be, rule them out and then you can say it might be PMR if the symptoms fit.

      But as I said - the tendon problems really aren't typical of PMR. They COULD be typical of other sorts of arthritis but that is something the rheumy should be looking at and that MAY be why he gave an NSAID. Which is it he has? Does it help at all? One thing that can cause achilles problems is ankylosing spondylitis and while long term that is better treated with other medications, NSAIDs usually help in the short term. However - it would probably require x-rays and scans to diagnose and in the earlier stages even then it may not help.

      But I really think you have to persist with a doctor to get investigations done.

    • BettyE
      BettyE paula05695

      Posted

      The knives in thighs hips and shoulders are how I'd have described my pain and I did have PMR.

      After 30mgs of prednisolone the pain disappeared.  Could your doctor ( I'd say GP,  whatever that is in USA ) be persuaded to give the steroids a try? I believe that the " magic" response to them is regarded as fairly indicative.

    • paula05695
      paula05695 BettyE

      Posted

      We are going to call his RD and ask about this.  I certainly think a trial would be worth a try.  My husband, due to the pain and movement, has already gained a great deal of weight.  I know he may be somewhat worried about the steriods, but having some quality of life is important, and we can work on the weight through better diet and movement (if we can get to more movement). 

      Everyone talks about exercise,  what types of exercise seem the best?  Swimming,  moderate weight bearing activities?   I encourage this a lot - but I have read that exercise actually helps. 

    • ptolemy
      ptolemy paula05695

      Posted

      It would be great if he could just get a short trial. If he has PMR, weight bearing exercise is supposed to be best. In fact just walking is good news. I go swimming which I thoroughly enjoy. I am told it is not so good as weight bearing, but I do find that I exercise my arms and legs and then chat over a coffee afterwards or read the paper which is relaxing. Has your husband thought of hydrotherapy? 
    • EileenH
      EileenH paula05695

      Posted

      What kind of exercise? What he can manage without making his pain worse. Start low and sort and build up SLOWLY.

      The weight - cut carbs drastically, especially if he gets to try pred. 

      Corticosteroids are not the steroids body builders use - and if they work for him getting his life back will make them worth their downsides.

  • Anhaga
    Anhaga paula05695

    Posted

    Your comment about the possible exposure to chemical agent during war interested me.  I assume you have altready looked into this?  There is definite acknowledgement that veterans of the Gulf War have suffered a range of serious symptoms, including but not limited to, fibromyalgia, chronic gastrointestinal problems, muscle and joint pain.  He should be able to get some assistance through the department of veterans affairs, including, perhaps, referral to a specialist with experience dealing with these victims?
    • paula05695
      paula05695 Anhaga

      Posted

      The interesting part of that is....  that as a veteran you have to sign up and be put on a waiting list.  So..  he HAS signed up and is on that waiting list. Our local liason to the VA is coming over to help fill out some additional paperwork that MAY push the date of him being seen up.  I am hopeful for this.  It is something that I had not realizes - the fact that veterans have to sometimes "wait" for services.    It has opened my eyes.   This is all pretty sudden - as before the knee replacement my husband had some small issues that any aging man may have - but overall, was very, very active. 

      I feel better just reaching out to this chat group - even though I am not the one that is having chronic pain, it deeply effects our whole family.  I would do anything to help give him some answers.  

       

    • EileenH
      EileenH paula05695

      Posted

      It doesn't matter if you are the patient or the carer - we'll talk to anyone who wants help!

    • Anhaga
      Anhaga paula05695

      Posted

      It is pretty appalling how veterans are treated in our respective countries, isn't it?  Send the youth off to war and when they come home with some damage, whether a lost limb or an invisible disease, ignore them.  Until recently amputee veterans in Canada had to submit documentation every year (or two maybe) proving that their limb was still missing.  rolleyes  I hope you get onto a faster track.  If things remain stalled do you have a political rep who can go to bat for you?  Local media coverage can also be a useful tool as a last resort. 

      Good luck!

    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      oh thank, I don't need my pension any more - my arm just grew back!! WOOT!!!

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