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Why do people expect you to be fine ,because they cannot see PMR?

Posted , 11 users are following.

Gymjen
Gymjen

There are no visible symptoms with my PMR apart from can't get out of a chair too well ,limp a bit,but because I've been like this for 7 months,reduced pred  down from 30 to 10. I find people ,friends ,husband as well, think that because you are on steroids you should be getting better. I am still in pain,some days worse than others,it is so depressing. I don't want sympathy just patience,only others with this disease understand.I am trying to deal with my PMR but for people to dismiss it as nothing  is upsetting.feel better just telling this forum.

4 likes, 15 replies

15 Replies

  • ricky37347
    ricky37347 Gymjen

    Posted

    Hi this is the biggest problem I have had because theres nothing to see people think you are faking the pain especially people who pat you on the back or want to shake your hand when you know its going to hurt . More so because not many people have even heard of pmr I hadnt till I got it best wishes
    • escot
      escot ricky37347

      Posted

      Hi Ricky,

      Yes I could not agree with you more....I too was diagnosed with PMR in July 2013, then another Rhuemi says I dont have  PMR but Fibromyalgia

      I am in pain, now on 5mg of Preds,so what ever it is, I need to know,I had a bone scan 3 weeks ago,and still have not been informed of the results, looking at me, one would think I am faking it all. but some days I am in so much pain that I find myself crying, and it is no use others telling me to take pain killers...and find yourself something to take your mind of your pain

    • ricky37347
      ricky37347 escot

      Posted

      Hi escot

      I am sorry you are in so much pain

      normal painkillers are useless for pmr,

      maybe your pred dose is too low but I have little medical knowledge,

      it seems a long time not to have a proper diagnosis as I gather pmr shows up on a blood test .

      there are some people on this forum who are very knowledgeable about

      pmr and may have some ideas which may help you

      good luck

    • EileenH
      EileenH ricky37347

      Posted

      No Ricky - there isn't a blood test that says definitely PMR. The test they do is one that shows all sorts of inflammation and that, together with the symptoms, give a good indication. But some people never have a high blood test (I don't) and others have another reason for the raised blood test and the symptoms. PMR is just the name given to the symptoms really and there are quite a few causes. The version of PMR we talk about on this forum is the one that responds dramatically to a moderate dose of pred and the skill is to identify which cause it is. Late onset rheumatoid arthritis also looks very like PMR including the blood tests but it doesn't react as well to pred and often someone is told first they have PMR but when the pred isn't working as well as expected or they can't reduce the dose the diagnosis is changed to RA.

      Autoimmune illnesses are very tricky to diagnose and it is estimated that the average time to a real diagnosis in many of them can be up to 10 YEARS - not months. I had had PMR for 5 years before it was given a name and I was given pred.

    • escot
      escot ricky37347

      Posted

      H Ricky

      I received a letter from the Hospital to tell me the result of my recent Bone scan, and it says that it is more likely that I have osteoarthritis not Fib or PMR???

  • davidmelville
    davidmelville Gymjen

    Posted

    Hi Gymjen, how right you are for apart from all the various personal and physical aspects of Polymyalgia Rheumatica it is indeed people's attitude that causes somuch  distress and pain. Like many I look a lot younger than my age, known for my smile - so how can anyone not thing I am not being silly going up and down stairs 'one at a time'!. Why can't I grab something from the far end of the supermarket while I collect a paper from the entrance. Love my wife as I do it's been eighteen months for her really make space for where I am, bless her we have got there and now share and plan together. Some children understand . . . "Mind Gramps!" , others stay away . . . Why, I wonder!.

    i got myself a mobilty scooter early on as 25yards was OK but 50 was not. But it was six months before close family would be seen with me. My friends thought it a brilliant idea as we could still go bird watching and I could get round Nature Reserves etc. 

    I it's two years since it started and if I drop one every month that will be three years! 

    So a big yes to a better understanding of the hidden face . . . 😄 

  • steve_1
    steve_1 Gymjen

    Posted

    I've had this problem as well, my wife understands as does my brother, who had it himself a few years back. I also have Post Herpetic Neuralgia which has the same problem following it around. As I don't look ill with either disease I must be one of the healthiest looking people around, either that or folk think I'm a hypochondriac.
  • muirkelsi
    muirkelsi Gymjen

    Posted

    Good morning,

    I agree with you wholeheartedly. Because PMR cannot be seen, it ignored by my friends and family. Because I do not complain ( apart moaning to myself), no one even asks how I am feeling. Although I ache quite a bit, I know that I am one of the lucky ones as I can move about quite well. I started with 15mg of prednisolone, and am now down to 6mg. I am going to stay at this dosage for at least a month and hope that things settle down.  Thinking about everyone in pain this morning.

    Grace

  • EileenH
    EileenH Gymjen

    Posted

    If you go to the northeast of England support site you will find info about a DVD called "You are not alone" which explains for family and friends what having PMR and GCA means for you. You would be amazed how many DOCTORS think we are back to normal once we are on pred. They forget that the underlying illness is still active and that makes you feel ill still. Pred also has its effects. 

    Is there a support group near you? Meeting occasionally with others with PMR is also a great help, especially if family members go with you occasionally - they then discover you are not exaggerating! But it is the same will all invisible illnesses, asthma, depression, most autoimmune disorders - you get more sympathy for a broken leg, since they can SEE that.

    You will find a link to their website in the post you get to with this link:

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

  • vawils
    vawils Gymjen

    Posted

    I completely understand your frustration and deal with the same issues since I am still working and doing my best to get along although some days are a struggle.  I also have heard from people who have looked up PMR on various websites where it lists the symptoms something like " morning pain and stiffness of greater than 30 minutes" and "easily controlled by steroids" and they don't get the right impression of what we are really dealing with.  This PMR and treatment misinformation on many of these websites really irritates me and makes it tougher for all of us in seeking understanding.

     

  • seeana
    seeana Gymjen

    Posted

    I know exactly what you are going through, it has got to a point where I feel guilty even talking about it so I just grin and bear it, trouble with  that  is if I do not say anything it gives the impression that I am fine do damned if do damned if dont.

    Hate getting older.

    • EileenH
      EileenH seeana

      Posted

      It is up to us to be firm and say "no, I CAN'T manage that" or "I'm sorry, I don't feel able to do that today but maybe tomorrow/next week". We do after all vary from day to day.

      One support charity has produced a DVD by doctors, physios and patients to explain to your friends and family what PMR and GCA and treatment with pred means for us. But it is a problem that the GPs, and sometimes consultant, appear to believe one is back to normal with pred - which as we all know if far from the truth. They are also terrified of using it so try to rush us off it and cause unnecessary problems.

      However - both PMR and GCA usually go into remission, even if it may take a few years. On that basis it beats having MS, RA or even osteoarthritis all of which deteriorate steadily with no prospect of cure. You have to hang on to the positives.

      For me, the biggest positive is the wonderful people I have met because of my involvement with the forums and support groups and now regard as friends. True friends - because they don't have a paddy because I have to say I can't do something. They know why.

  • Healingjan
    Healingjan Gymjen

    Posted

    SO glad you brought this up!  It just, pardon the expression, sucks that people assume it's 'just getting older' even when you've told everyone you have a condition.  (I avoid saying disease in case they might avoid me thinking it could be contagious.)  Even though my friends, mainly at church and in the neighborhood, have seen me gardening, hiking etc., they often don't seem to get it that when I struggle getting up from a chair it's due to pain.  I have to say, though, it is getting better as I explain my limitations, or share my happiness when things improve.  I always thank people when they ask how I'm doing, I think it helps to reinforce the positive.

    I also have to say, having been my mom's only caretaker (only child) visiting her as she aged to ripe old age of 102, though I was always kind, I don't think I understood how she felt the way I do now.  The silver lining to suffering, I suppose.

     

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