If you google PMR you will get things like "morning stiffness" and "achiness". You will seldom find "totally disabling and crippling" or "can show up anyplace in your body without warning". It is very frustrating that doctors are not up to speed on this devastating, life altering disease, or know that it is linked to the HLA-B27 gene in almost all cases. That gene is responsible for many chronic inflammatory auto immune conditions, and should be tested for immediately when symptoms show. I have been prone in bed, on fire without prednisone, totally incapacitated to the point of tears with the pain. So, know that it can affect every inch of your body, sometimes all at once, and resign yourself to prednisone as the solution. The really tough thing is when you taper taper taper, hoping that you are in remission, and the pain comes back, but you don't know whether it is the disease or your body withdrawing from the steroid. It is an insidious disease. Right now my achilles tendon, feet, knees and thighs are hurting because I did not take enough of the prednisone. I have also had my hands ache. Be aware that a large percentage of PMR sufferers also get GCA, which can lead to blindness if not treated quick. The HLA-B27 gene can also cause several other severe conditions (google the gene) that your doctor should be aware of. In fairness, docs have a lot to keep up with these days, so don't be shy about printing off your findings and presenting them to your doctor.
PMR misunderstood: If you google PMR you will get... - PMRGCAuk
PMR misunderstood
Good RANT Sumo88. I can feel your anger and frustration, better out than in!!!!!
I do, however, feel you might be preaching to the choir!
Yup, we know both PMR & GCA are "disabling and crippling" and "can show up anyplace in the body without warning".
And yes, we "taper taper taper, hoping that we're in remission, but we know "the pain usually comes back."
I personally have had "withdrawals symptoms," that were way worse than my PMR/GCA symptoms.
My PMR went undiagnosed for 18+ months and would not have been diagnosed had I not developed GCA! My first trip to A&E ended with my being sent home; diagnosed with a migraine. A week later my second trip resulted in a confirmed diagnoses of GCA! Thank goodness I didn't go blind in that week!
You're right our doctor's do "have a lot to keep up with these days," but I don't think you have to worry about anyone here being SHY!
I'm a "Newbie," but I can tell you the experts on this site take "take no prisoners!"
WELCOME!!!!!
I am almost resigned to having this illness for life. The prednisone has given me cataracts (so I had them taken out and can see 20/20 for the first time in my life...go figure. But I'd rather wear glasses than deal with this), and my skin is so thin a fly landing on my arm can bruise it. I tell people I rassle cats for a living. Anyway, thanks. It is what it is. Be sure to take the calcium supplements.
Yes, sometimes I feel I will die before I ever see the end of the disease symptoms, the steroid side effect and withdrawals symptoms. Or by the time I'm though the worst of this, I'll be so old I'll have unrelated health health issues anyway, and my best years will have been behind me.... which means these are the best years of the rest of my life! Boy that is a sobering thought... hang in there! it can always get better!
I never thought I would get through it but I am starting to have more good days now than bad. You never can predict the future. I was devastated at first but now see that things can turn around for the better. Makes us appreciate life now so much more.
YIPPIEE!!!!! Good on you!!! Just the news I needed to hear! Cheers!
I know you’re in a bad place at the moment, but if you’ve time ...and energy have a look at attached. Just to confirm - life does get better -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Ohhh, DorsetLady, i missed your first link when you posted it in 2017 as It was just shy of my diagnosis. Thank you so much for sharing it again. You’ve been such a beacon of light for me and so many of us, that it was both heartbreaking (missed diagnoses, August 12, etc) and inspirational (remission, nenewal of self - for lack of a better description). We are so lucky that you continue to share your story, your knowledge, and receive your encouragement. Thank you, thank you, thank you!
Thank you.
Sometimes those of you still on your journey need to know life does get back to normal - even though you don’t think it can.
Our bodies and brains are more resilient than we realise.
Take care.
This has appeared twice - so this is the repeat of my reply over on the other thread:
"That gene is responsible for many chronic inflammatory auto immune conditions"
Which means it isn't specific enough to be worth it surely - the symptoms are enough to tell a decent doctor you have an inflammatory autoimmune disorder. In fact, it is more associated with the spondyloarthropathies than with PMR and other tests are of far more significance.
The symptoms you find listed in the literature are those that are used as criteria for inclusion in research/studies on PMR. Not the entire range of the symptoms the patients experience - all of us are different and some have one set of symptoms and others have another.
I don't know where you got your info from, but only about 1 in 6 of patients with PMR symptoms progress to develop GCA and many patients with GCA never have any PMR symptoms.
It's a bit like telling an expectant mother that when delivery time comes she will feel some pressure.
So TRUE! Pain and stiffness are Seriously underplayed in the descriptive literature. To read about it... the stiffness and pain go after a brief morning period...then all is well!!!
in my experience, the physical effects are often 24-7, in varied degrees, but seldom totally gone.
Then the subject of the emotional, mental, psych effects of the disorder, the treatment, the cognitive dysfunction, and overall experience of looking well and being Ill. In my experience, None of these effects are fully described, but they are real , and they take a daily toll.
The only thing I was told was that I would gain weight, and there was a risk of higher blood sugar. other horror stories followed, fueled by reading the pharmaceutical side effect literature.
So, 5 years later, most side effects have evaporated, and overall improvement in health. However, the disorder is still chugging along, and a recent flare has me at 7 mg pred again.
Totally agree. There has not been a day that I haven't known I was sick.
I too am annoyed by the casual description online everywhere as if it is a headache that just needs an aspirin. Doctors and family think it should be conquered overnight. So hard to explain to them the life changing misery.
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