Why do people expect you to be fine ,because they cannot see PMR?
Posted , 11 users are following.
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
ricky37347 Gymjen
Posted
escot ricky37347
Posted
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 escot
Posted
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 ricky37347
Posted
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 ricky37347
Posted
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 Gymjen
Posted
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 Gymjen
Posted
muirkelsi Gymjen
Posted
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 Gymjen
Posted
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 Gymjen
Posted
seeana Gymjen
Posted
Hate getting older.
EileenH seeana
Posted
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 Gymjen
Posted
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.