Just joined this group as I want to find out if anyone has been told by their consultant/specialist/doctor what causes PMR.
I’m told it’s the immune system attacking the body but why is it doing that?
I went to bed perfectly OK with no symptoms. Woke up in the morning and couldn’t move from my neck down and was in excruciating pain all over my body and my muscle strength had gone. Thats a dramatic change in the body overnight without any external trauma to cause it.
No one can tell me why this happened.
Would love to know your experiences with getting an answer.
Thanks.
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Pollymaggie
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hi Pollymaggie I’m sorry to hear that you have gotten PMR but happy that you have found this wonderful forum. The wisdom and support that I received here has truly helped me. The two rheumatologists I have seen tell me that the cause is not known ,, perhaps a virus..
Wouldn’t it be grand if the cause is discovered so that cures could be found.
Those are the big questions! You are not likely to get a definitive answer either. There are a multitude of autoimmune conditions involving different bits that the body’s immune system has recognised as the enemy for reasons . Why? Who knows? But there is a common thread here of unrelenting stress, infection, major emotional upset, vaccines (they trigger the immune system by design). Those are the things that are obvious and genetics, environmental pollutants, diet, etc could have a role. Even low vitamin D has been implicated. Often the apparent cause is the final straw that breaks the camel’s back. In my case it was probably suppressed early trauma, a life of major knocks, chemo, infections, to name a few, but the straw was work stress and a horrible live-in relative when I was 54. I just had a few niggles but then, bam, over 24 hours GCA.
I had similar experiences over a number of years…emotional trauma, bereavement, bringing work home most evenings and weekends (necessary due to the job), keeping going despite my head and body telling me I should slow down. We do what we have to at the time: if only we had known the possible consequences. Would we have done things differently?
I wonder why he said a couple of years - I asked him how long GCA lasted in general and he gave me rough percentages for one, two, and three and beyond years. I can't find what I'd written down but it was something like 20 percent go on longer than 2 years.
Also, although it's a good article, I think it's weird that with GCA he doesn't mention the possibility of vision loss; instead he focuse on stroke, heart attack and blood vessel wall damage. I didn't know heart attack and stroke were a problem - presume that's LVV.
Hi. I posted the link in response to the question, “What is the Cause?” and the article is predominantly about that. GCA, although on the same spectrum as PMR (and LVV), is dealt with in more detail in other articles. So much reading to do which is where this forum comes into its own 🙂. I find Related Posts and FAQs invaluable . Good job most of us are ladies/gentlemen of leisure😂😂.
I know it was about causes PMR, and it's a good article, but being a patient of Rob's and knowing he is symptom rather than timescale guided, I found it a bit strange he didn't add 'often' in relation to 2 years. Also, I still think it's weird that vision loss was not mentioned specifically because that is our biggest immediate fear with GCA. X
I don't think he directly wrote the article - I suspect he was interviewed, probably by phone, and a "media consultant" wrote it up using what he had said. Things will have been omitted for space considerations and I do know that a lot of doctors (and their representatives) don't like saying you can have PMR indefinitely - especially when they are in the world of private practice because then insurance companies will chuck out these patients even sooner. But the professional writer possibly didn't get the significance of "often" if he did include it. We have had discussion about other PMR articles on this site - one inferred there was a "cure" for PMR rather than a management strategy.
There is no one cause - but often it’s due to your immune system having been under pressure for a variety of reason [although you may not have realised it was]- and it finds itself unable to function correctly.
This is from Mayo clinic literature - and almost every other article you read -
The exact cause of polymyalgia rheumatica is unknown. Two factors appear to be involved in the development of this condition:
Genetics.
Certain genes and gene variations might increase your susceptibility.
An environmental exposure.
New cases of polymyalgia rheumatica tend to come in cycles, possibly developing seasonally. This suggests that an environmental trigger, such as a virus, might play a role. But no specific virus has been shown to cause polymyalgia rheumatica.
Plus -
Infections, traumatic injuries or sudden shocks such as bereavement or a period of high stress can trigger the onset of polymyalgia rheumatica.
As the suggested triggers can be a variety of things, but does it really matter what causes it?
It might be nice to know, but usually there’s little you can do about ‘life’ to stop it.
All we can do is be thankful it’s been diagnosed, not [normally] life threatening, self limiting and manageable.
identical to how mine started, it was one hell of a painful shock. I put mine down to Lumbar Spinal Stenosis surgery and stress, the surgery was a success, the stress I divorced. But now awaiting further spinal canal surgery in the New Year… Take care, keep your sense of humour, it always comes in handy.
There is a genetic component - in that your genetics provides a fertile substrate for the mounting load of "straws" loaded onto your back and then eventually it all goes pear-shaped and the immune system goes haywire. There is no SINGLE cause - though some are common to many.
I think this is the biggest contributor and/or or as I mentioned before multiple occurrences of excessive muscle fatigue. Mine wasn’t preceded by any symptoms of a cold and subsequent vaccinations after diagnosis had no impact on tapering, positive or negative. Three months prior I had to put down my Morgan horse after being together for over 20 years and that was very stressful for me. Maybe contributed? Both my parents had/have RA, but not me. I have no arthritis of any type. So, who knows. Did take 2.5 years to run its course. Clean break.
Hahahahahaha!!! Funny that - they messed up OH's assessment, took them 6 months to do what he had done online in 10 mins! But he couldn't retire until they had done it, it cost us probably £50K on what we got for our house as we wanted to sell it earlier, before the financial crash, but couldn't until they sorted themselves out. Must have been a bad error on their part - he got a written apology. I'd rather have had the money!!! But I got the PMR ...
In my case I am convinced it was a combination of factors: 'flu over Christmas 2009, a bullying head teacher determined to make me redundant, the threat of tribunal (which my cardiac nurse advised me not to pursue), the stress and anger caused by the relentless legal processes, financial worries while I waited 6 years for my state pension. I don't know of any hereditary link, apart from my maternal grandmother who suffered from arthritis and what she called neuralgia. But like you, the pain and discomfort came on overnight, then spread rapidly. This forum is a godsend!
The only thing I can think of is about a week before pmr hit me I went down with very severe sickness and diarrhoea which I think was caught in a&e while I waited for my father to be seen by a doctor.
The cause for me was a very severe bout of flu in Oct 2009. Although the flu went after a week or so, my back continued to hurt, and the pain and stiffness grew from there till I was almost immobile by Christmas. However, it wasn't until July 2010 that I was finally given Prednisolone and my life came back to me.
Looking back I can see that I had previously suffered indicators that I was prone to this disease. In 2004 and 2005 I had frozen shoulder. First in one, and then in the other. Furthermore, I'd had a niggling bad back most of my adult life, so I was already primed for this to happen. The final straw was the bout of flu on top of the stressful job I was in at the time.
I suspect my "cause" is one you have not heard before. It may seem hard to believe, but for me it was brought on by a surprise election result. I had been very emotionally invested in the election of our first woman president, someone I admired immensely. I even took my daughter to a party on election night to watch the expected historic result. The very next morning a racially motivated incident occurred in the very place where we had been to celebrate the night before. A few weeks after, I woke up and could hardly walk, lift the down comforter or raise my arms.
I did also have a strong family history of autoimmune disease - GCA and Scleroderma. So, as another poster said - I had less ability to bear the load of that last straw. Seven years laster, I am still on low dose steroids, but I am doing ok most of the time. I thank God that we live in a time when we do have steroids to help. I think of those in generations past - probably some of whom were my relatives - who suffered without the benefit of steroids. I try to keep a sense of humor about what started my PMR journey...and tell myself that, given my family history, it probably would have happened at some point down the line anyway. I always remember my grandfather's saying (he also had an autoimmune disease): If we had to trade our problems for someone else's, we would probably hope we could keep our own. And my Mom's: "Into every life a little rain must fall."
I enjoyed reading your family members’ sayings. One of mine is, “Possunt quia posse videntur”- a school motto that we were told meant, “We can because we think we can.” …..Not as accurate a translation as our Latin mistress led us to believe but the sentiment is positive.
From what I've read, the main evidence pointing towards PMR being an autoimmune/autoinflammatory disease affecting the circulation is:
a) The close statistical association with GCA, in which the blood supply to the eye is pinched off due to inflammatory swelling in the wall of an artery;
b) The detection of high levels of inflammatory markers in the blood tests (and, in extreme cases, PET scans) of most (but certainly not all) sufferers, without signs of any causal infection by a pathogen (bacterium, virus, fungus or parasite);
c) The rapidly increasing risk of PMR with age beyond 50, where worsening dysfunction of the immune system is common, and age-related hardening/narrowing of blood vessels (arteriosclerosis) is almost universal to some degree, often accompanied by atherosclerosis, caused by fatty plaques;
d) The very fact PMR & GCA respond so well to artificial steroids, like many other allergic, autoimmune and autoinflammatory conditions;
e) A person's risk of being diagnosed with PMR increases if the patient has previously been diagnosed with adult atopic dermatitis (eczema), which is a relatively common allergy-linked disorder;
f) As with many vascular conditions, the risk of PMR increases with the number of packs of cigarettes smoked per day, times the duration of smoking in decades.
I can provide links for these, if requested. Please let me know if you've found epidemiological studies suggesting other risk factors (or ruling them out!)
The fact that PMR diagnoses are rarer in men than women is intriguing, but I've seen no explanation. However, not only do women have a significantly different hormonal regime to men, their immune system also has the remarkable ability to tolerate the gestation of a foetus which carries non-self genes! Perhaps the question should really be, why should they be the same?
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