In 2011 I was diagnosed with PMR shortly after my mother passed away. I had the classic symptoms: severe aches and stiffness and weakness across my back, shoulders, and thighs. It took months for a diagnosis, including visits to a neorologist and orthopedist, who had no idea what it was. A final visit to my internist resulted in a diagnosis in minutes. I started on a regimen of prednisone 20 mg, and finally tapered off after 2 years, during which I gained a lot of weight and developed the typical "moonface," which did nothing to eleviate my general feeling of depression.
Now, 4 years after my initial diagnosis, it has recurred. I had knee surgery in early March, traveled north to visit our children in April, suffered a serious allergic reaction to all the emerging spring pollen, and returned home with bronchitis. Shortly thereafter, both my legs, from my thighs to my feet, began aching terribly. Weakness followed. That's when I realized that it was polymyalgia once again, but affecting my most vulnerable area, the knee on which I had surgery. I am now back on prednisone, and am trying to keep the dosage under 15 mg. We'll see.
I truly believe that my first bout with PMR was triggered by the stress surrounding my mother's passing. This time i suspect that allergies and /or bronchitis may have been the cause. Has anyone else had such an experience?
Hello Elaine, I agree with you on the Stress factor contributing to PMR. In October 2012 my Mum was diagnosed with vascular dementia and subsequently sectioned under the mental health act. It came as a huge shock to me. I then had to go through the ordeal of Court of Protection to gain access to Mums personal affairs. I'm also an only child so had to endure this arduous process of legality all alone! Mum deteriorated very very quickly, I felt as if I was on a run away train, having no control over anything!! Mum passed away in September 2013. The following 12 months carried on from the last with solicitors, the clearing out and selling of my family home etc etc,,,, during this time I began to feel 'unwell' I couldnt put a finger on what I was feeling really! Aches and pains in muscles and joints that I just put down to getting old, plus I've worked on the railway for over 20 years again I put it down to wear and tear! When suddenly Christmas Day 2014 I just seized up altogether!! Diagnosed with PMR March this year, so yes most definitely STRESS has caused it!!!
A lot of folks on this forum have put it down to stress including me!
I am 1000% convinced my PMR was triggered by 5 years of unremitting work and personal stress. January 2015 was a peak of stress and I think my poor body blew an autoimmune gasket.
I too have the lifelong seasonal allergy component that adds to my feeling very extra-unwell at certain times of the year (including today - I took a long lovely walk yesterday not realizing the pollens were especially high until i got home and began reacting with the sneezing, watery eyes, sore throat etc.). As so many others here have advised, you must do the best you can to take the time you need to rest and recuperate. Easier said than done for certain. Hang In there.
It does my heart good to read other sufferers attest to the important role of stress in PMR. As I have written on other posts, I know for sure that my PMR was caused by severe stress of a kind which may even cause me to lose my home.
Exercise helps with stress too. As I mentioned elsewhere, a rheumatologist cautioned me quite sternly, despite my rather advanced age of 84,"Now you know,
you MUST exercise!" And so I do, and while I still have some sleep problems, they're much better and so is my body. I'm also occasionally seeing an old-friend psychotherapist, and talking is a big help too.
Good luck and thank you to everybody, Barbara
Hi Elaine,
I'm going to jump on the stress bandwagon as well. I 'm also sure that a long period of family and work stress were the cause of my PMR.
as far as the flare goes, I have had 2 flares in my 2+ years with PMR and the symptoms of the first one (I was ai 1mg at the time) were similar to the original pain in arms, shoulders, butt etc. The recent one was different and affected my calves but I felt the stiffness more frequently and I was very tired. This last flare, according to our team of experts, was likely caused by having surgery (arthoscopic ankle), being away from home for a couple of months and returning home for Christmas with family. I actually felt well during all that time at 4mg but when I tried to decrease my body was not happy and I am actually still at 9/10mg alternating. So..... Yes the symptoms can be different.
I hope you are able to decrease your dose without much trouble but go VERY, VERY slowly because it does seem more difficult after each flare.
hugs, Diana🌸
Absolutely Elaine - when I was first diagnosed with this weird and wonderful illness I had never heard of it and after the first shock of finding myself in this very different situation I looked it up on the web.
My first question was "where did it suddenly come from?" there was not much to be found as to origins - one day I read somewhere that one of the suspected factors could be grief - for me that made perfect sense.
Within a year I had lost both my parents, have a sister diagnosed with a very aggressive cancer, a husband who suddenly ended up in intensive care (he is fitter than me now!) and on top of all that we moved house.
So I absolutely buy into the grief/stress theory.
Anything that causes "stress" to the body can contribute - illness, injury, environmental factors, over-doing things physically, emotional stress may all be involved. The stress of the sort you are all describing may always have been the final straw, or not even the final straw but a definite part of the process. No one single thing has been identified - but the immune system can be upset by a lot of things.
The second "dose" of PMR is often nothing like the first - whether that is good or bad depends on how it turns out I suppose! Once the autoimmune disorder is there it never really goes "away", just "into remission" - like Sleeping Beauty.
Others have already said it - SLOW REDUCTION is the key. And rest - not the staying in bed sort, the "not doing things that aggravate it" sort.
Just to add to the flare up discussion - my flare up was very different in areas of pain and stiffness but similar to the general affect on my health and activity. My original bout of PMR (2007) started in my left clavicle and then spread to my shoulders and back and then affected me all over. This flare up (2014) started in my left hip and then spread to all my lower limbs and although my shoulders and arms stiffened it was no where near as painful in my upper limbs this time - mind you because I recognised it and my GP diagnosed it quickly this time I was put on increased pred immediately and so was given pain relief within a week of onset whilst the first time it was over a month of pain and stiffness before it was diasgnosed. My Rheumatologist says that this is often the case - the disease can just affect a different area in flare up. Am now back to reducing - just going from 7 to 6 following the slow slow regime - I know that last time I felt best on 3 mg but in my effort to get off the pred I was reducing still and had got to 1.5 mg. My rheum has suggested that if I can get to 3 mg this time to consider staying at that level - we shall wait to see. Am about to try acupuncture to see if that helps in the reduction and improves general well being - has anyone else any thoughts on that? Good wishes to all .
Several people on all 3 forums have found they benefitted from Bowen therapy. A few have mentioned acupuncture - it helped for some, not for others. With Bowen therapy you will know if it will help within 3 sessions, often after a single one there is an improvement. With acupuncture you usually need a lot of sessions before you find out if it helps or not.
Thank you all for your replies. It is good to hear that so many of you agree about the emotional stress factor, Before this flare-up I had arthroscopic surgery on my knee, and now that is the very area being affected by PMR. Apparently, physiological stress is also a factor. What a strange disorder.
My best wishes to you all for a smooth recovery.
and me as i was suspected with bone cancer and the stress of waiting did not help, 2 months later pain in both hipe, shoulders and neck
Mine was a trifecta - one daughter lost a baby, the other bought a $30k (AU) car and then had it reposessed - carried on like a lunatic and drove us completely insane with worry, THEN I had a breast cancer scare. We went for a month's holiday and by the time I got home I could barely walk.
These days if I have any stress at all I fall in a heap.
Elaine, sorry to hear the news about your mum, guess there always a reminder about her which would bring back feelings and stess you out agian and again.
My PMR was not brought about by stress, but that is since a factor I believe of my being unable to stabalise Prednisone, started on 50mg and now down to 25mg since March this year. I didnt suffer as long as you before diagnosed, only 3 weeks then taken to hospital as not able to move. Environmental hange was my trigger, inhaling waterproof chemicals from people working and not iforming me what theywere doing for 9 hours. No matter how its triggered, it is one heck of an illness. Just thankful in time they say they can control it. You tae care. Thinking of your fight.
Elaine,I know this is an old post but your description of your leg
symptoms is what I am searching to see if I have polymyalgia.
My symptoms came on suddenly last Dec.I got pain and soreness
in both arms,like someone had punched me real hard.Then in Jan
I got neck pain that was horrible and several times this year I have
had bouts of leg pain from my knees to pelvic area,pain felt is mostly
in my thighs along with fatigue.I have been taking plaquenil since
April and am not sure if it is working if I am having episodes of leg pain.
Any thoughts would be appreciated from you or anyone else reading this.Thanks
If you possibly have PMR then plaquenil won't do any good at all - don't care what your rheumy says!
Ask if you can have a short trial of moderate dose pred and see what happens. If it works a miracle (small or otherwise) then there is a fairish chance it might be PMR.
If your doctor won't play ball - find another.
Wow,thanks for replying so fast.I have a great rheumy and he
does listen.When I went in on my last visit we were sorting through
my previous symptoms which were ankles feet and hands being
hit with pain and slight swelling that's why the plaquenil was given
we were thinking it could be RA.I do have fibromyalgia and I can
say the pain was very different,it is an intense pain.I will ask for
a short trial of pred to see if it will work.Did you ever have hip
tightness/stiffness when walking? I have had all the bloodwork
done and nothing ever shows
Hi there Tory, I've had PMR for nearly two years now and my main areas for pain are in my legs, with incredible stiffness in my hips and lower back - to the point I couldn't walk.
I did also have painful shoulders and neck, but the hips were the worst.
I've subsequently been diagnoised with myofacial pain syndrom (possibly fibro, but who can tell with all the other things going on!)
As Eileen says, get yourself a script for pred and you'll know pretty quickly if it's PMR.
I take plaquenil as part of my treatment but it's done nothing except give me a bad stomach (long story, not for this post!)