Seeing there seems no medical explanation for PM it would be good to pool sufferers opinions. I spent 35 years in the NHS and I had never heard of PM, now many of my friends seem to be sufferers.
I have always been serious about exercise but was suddenly struck down by disabling pain. Eventually it was put down to the Statins I was taking. I ceased them and was cured. After about 12 months I started with classic PM symptoms and was treated by my GPS very. I started on only 5mgs of steroids but did really well. I was left with minor pain, but now at 78 I am totally pain free!
My wife also has suffered from PM. We have come to the conclusion that PM may be steroids and/or invasive surgery. Would you agree? Or do you have your own opinion. Can we get a conversation going?
Written by
Iannewebb
To view profiles and participate in discussions please or .
My PMR followed immediately after ski accident and op to fix with screws. However, my older sister has had PMR for 12 years. Could it be hereditary? Hope the replies, you will no doubt receive many, help you form a conclusion! Good luck.
Thanks for your prompt response. Yes it is quite clear that there is some hereditary involved as my younger brother has also been a sufferer. But I think there is something else going on in this modern World. I have flagged up ski operation as of interest.
I had a back operation fusion5 screws rods, in February 2017, and PMR followed in the May suspected back op triggered it off, my elder sister now 90 started in Jan 2017 and diagnosed shortly after with PMR, she is unable to go out without someone with her, as had a fall broke her hip, and is still going really well she was always active. President of the WI, so two of us girls in a family of six girls, my friend has 3 in her siblings who also have PMR, one only with GCA. I have not been pain free since I started on the pred stared low dose went to 40mg now tapering to 17,5 at present but I've never felt so ill, I was always active before, I have GCA/PMR and the rheumy is completely stumped as to how to go further, waiting for full spinal X-ray,, anyway I do agree it's got some genetic ingredient there, but obviously not in everyone, interested to hear more info,
PMR is an auto-immune illness and until 10 years ago it had a very low profile and because it mainly affected women little or nothing was going on except for one man in the UK Professor Bhaskhar Dasgupta.
Together with 25 other people he started up PMR&GCAuk and they run this forum.
Go to their website and see the progress that has been made by 99% vounteers mainly people with PMR and/or GCA.
The research that has increased over the last 10 years is a miracle and all down to those 26 people who met in London on 14th March 2008 and on the 24th September 2008 our new National Organisation was launched. The name of the organisation will be: Polymyalgia Rheumatica and Giant Cell Arteritis UK, acronym as above. Professor Bhaskar Dasgupta will be Honorary President and Lead Medical Advisor.
Both illnesses have had there profile raised but much work still remains and without volunteers it will not happen. So if you can spare an hour or two.................
How good to see this. I never heard of PMR till I was told I had it. And it took a year and a half to get a diagnosis even though I was at a medical school. Have found very little reasearch into causes. But reading here makes me wonder about some common threads;I.e., metal exposure (which my dr is testing for), statins, major stress, and trauma as in the trauma of surgery. Have looked to see if I can find any research ongoing but so far no luck.
Very interesting to read this - first time I have seen anything mentioned about metal exposure - I worked in engineering for 9 years up to 1988, so I know that is a long time ago though, had a vasectomy in January 2011. was fit and fine until December 2012. 2 stress factors in 2012 were that my marriage was on the rocks and we split up in sept 2012, and my job became far more stressful with changes there in November 2012. I started to get PMR pains in December 2012 with out knowing what they were at the time. Had GCA diagnosis in Oct 2017, but later reviewed and changed to vasculitis, non-specific to GCA, so not confirmed or ruled out.
Just interesting to note that these 3 factors you have mentioned all also apply to me.
Can I ask you how the exposure to metal was arrived at as a possible cause?
Not sure. It came from my new dr who I saw for the first time last week. He said one of the tests he was doing was for heavy metals. First I heard of it as well. No results yet.
I suspect you are getting the wrong end of the stick. PMR is not the disease. PMR is the name given to a constellation of symptoms, familiar to us all, but they can be due to one of several underlying causes. I wouldn't personally have thought of heavy metal exposure as causing the typical PMR symptoms but maybe it does sometimes.
I don't think it is that anyone thinks heavy metal poisoning is a cause of the PMR we talk about here.
I used to work with metals like steel and iron, so not "heavy metals". That would come under metals like cadmium and lead. Maybe the doctor is thinking of the cause of aches and pains away from PMR.
It is such a complicated condition, but so many people on here are listing stress as a major factor. I have been off work with sight loss in my left eye and steroid-induced blurred vision in my right eye. I am currently on 25mgs Pred as from 2 days ago, with planned reduction to 20 mgs in 2 weeks. Only sign was shadow in my eye, and no GCA symptoms. Glasses do now help with magnifying my sight in my right eye now on lower Pred dose.
Due to go back to work in 2 weeks after 5 months off sick - back to a pressure environment - am I going into the "Lions Den" with this? Maybe I should look for another job? - not easy to come by at 62. Been in my current job (clerical) exactly 27 years today as it turns out.
I think the truth is that the stress became the final straw - far more complex than it being the cause. And stress, like infections, definitely triggers flares for some people.
For your info... i had two major surgeries and went through a period of extreme emotional stress in 2012-2013. In October 2013, i developed crushing pain and was dx with PMR. Still taking pred and hopeful to be near extinguish of this disorder. My opinion is that extreme physical/ mental stress led to explosion of PMR, and I remain sensitive to stress, thus make efforts to keep low key life🤪
I agree - my stress level went up big-time in September 2012 (marriage break-up) and job stress (changes at work) November 2012, then PMR pains started December 2012 - I was fit and active before that. From other comments on the site it does seem that stress plays a major part with the immune system going haywire.
I have always had it in my mind that my PMR (Polymyalgia Rhuematica) was as a result of a hip replacement in January 2017. I requested that I didn't want to be fully asleep so I don't know what they used instead, maybe some kind of Cortisone but straight after I had a water infection and had Antibiotics. I was only in hospital for two nights. During the last 12 months I have had recurring water infections, chest infections and other incidentals. I have had 8 different occasions in that time where Antibiotics have been prescribed. Fortunately I am still alive and kicking and feel lucky compared to some as I don't have any pain just now. Any pain I had when first diagnosed with PMR went within 24 hours of Prednisolone being prescribed (15) mg and now I am down to 5mg. I am tapering slowly and will try 4.5 next month and beyond and hope I can be off the steroids by May/June. Good luck to you in your quest and keep us informed. D
International Survey set up 10 years ago for PMR & GCA it takes ten minutes of your time and you can also read the statistics. It is seeking cause.......................
Take the time to help yourselves to seek and find cause and cure...........it won't happen in my lifetime but it will happen.....................................
stress, whether mental or physical or both seems to be a favourite pre-cursor for GCA and/or PMR. I attribute mine to being my late husband's carer for a number of years. No operations or accidents in picture, and as far as I'm aware no family connections.
On a lighter note you may like to read my post - Are we all Vikings?
I'm sorry - I'm struggling to make sense of "PM may be steroids and/or invasive surgery".
However - I had a history of neither before PMR appeared. Nor statins if that is what you meant rather than steroids.
It is an autoimmune vasculitis - and autoimmune disorders have a very broad remit. PMR/LVV/GCA are just at different positions on a continuous spectrum:
Stress of all sorts is accepted as something that affects the immune system, but there are also environmental factors of all sorts, genetics, and, no doubt, previous medical history and lifestyle.
The reason you probably had never heard of PMR in 35 years in the NHS was that it was not until you were in your late 40s or later that you would have mixed with people who might have it - it is a disorder of the aging. And why you friends have it - you are 78, your friends are no doubt of similar ages. That is also a factor in dysfunctional immune systems.
At 57 I had severe temple headaches, lethargy, body aches and lack of appetite. I have no family history of this, I hadn’t gone through any surgeries, hadn’t been sick prior and was a mystery to many doctors when they finally concluded that I had PMRGCA. I was put on 80mg Prednisone right away right provided immediate relief. Four years later I am down to 4 mg of prednisone per day, taking 2 mg at 5am upon waking and 5pm after work and seems to be keeping symtoms at bay.
I was first diagnosed with GCA . I did not have PMR symptoms till the day after I was in a plane that made an emergency landing and we had to climb on the wing and go down the the slide. The cabin had filled with smoke and we all thought it was the end. I had no sensation of adrenaline during the incident. The pain started the next day and has continued. (Two years approximately. ) who knows ?
That was certainly a "major" stressful incident to say the least!
I had PMR before my shadow in vision in my left eye, which ended up with sight loss - I had a major panic attack at the exact moment I was about to go inside a MRI scanner machine (cause by fear of claustrophobia)- had another uneventful MRI scan 8 days later - this time I took Valium before it (it was for an unrelated prostate scan) - Rheumatologist said there would have been no connection (trigger) caused by my scanner panic attack - just seemed one heck of a coincidence though!
At a Vasculitis Symposium a couple of years ago, a Professor of Rheumatology spoke about GCA saying that he considered the cause may possibly lay somewhere in the environment, with the strongest link being silica which is present in soil. Although he mentioned no clear infectious agent having been found as a trigger, he added that he was of the belief that people can be genetically predisposed.
It does seem that trauma, whether physical or emotional, plays a part in succumbing to PMR/GCA in so many cases My PMR started soon after a very nasty steep trip from a train on to a platform at an unfamiliar station in the dark. I obviously wasn't the only victim as the platform has since been raised! I already suffered from spinal slippage (spondylolisthesis) so perhaps I was more at risk from the accident My GCA started a year later, most likely due to PMR remaining undiagnosed, therefore untreated for that year. As scary as steroids are, they are nowhere near as harmful as leaving that inflammation untreated.
It's difficult to construct a diagnostic protocol anecdotal evidence. If we took or adopted on methodological approach based on faulty data it might make things worse. For example I see lots of people and medics identifying pmr as joint pain. I havent had joint pain much and tend to think of (My) PMR as effecting muscles and ligament which might impact joint usage.
The other day someone opened a post and several of the women reported being married to younger men. In the past I have seen researchers undertake a whole research programmefprogramme for the most tenuous reasons.
It seems that several people report being stressed and so on and the paper linked to another message in.past 2 days has explored the links between stress and pmr/GCA.
Oh come on Poopadoop you didn't REALLY seriously think any of us was serious about making a connection between younger partners and having PMR/GCA - surely you could see this was tongue in cheek - something we ALL need to relieve the stress of our daily lives. Obviously just how we have acquired these AI diseases is (from all the available multidisciplinary) evidence derived a spectrum of factors - genetic, environmental etc etc and as PMRpro often points out is complex even regarding how we 'label' and categorise AI illnesses.
Thats the point I was making. We know it's tongue in cheek and that's why I pointed it out- the sort of healthy sharing of experience we have here to support each other. My point, after 28 years in universities as a theorist, researcher, teacher and community worker is that I have seen research applications that use such tenuous links to do unfunded and funded research.
My point was that it is a complex, multifaceted condition. The corporeal, ontological and epistemological aspects of research inform the methodologies. As many as said we might have been further ahead with research if certain social and cultural stereotypes didn't exist. I.e. that it is primarily seen as a condition that old (er) women.
My messages are usually tongue in cheek and I hope supportive where i can be. So no I didn't REALLY seriously think there was even the possibility of such a connection. 😜
That's a relief - sorry I obviously misread you then - and agree with all you just said - ESPECIALLY that as a disease which mainly affects 'older' women it is unsurprisingly under researched and underfunded. Still - although I am a strong adherent to 'scientific evidence' - peer reviewed that is - one of the interesting things about forums such as these where people share anecdotal stuff - that sometimes we come across aspects which may end up being more significant than any of us might expect. Anyway as a researcher (like I once was) I am sure you would agree that 'left field' questions are always worth tossing about - even if tongue in cheek.
Questions are vitally important and I have learned more about this condition on this forum than medical journal...usually because my brain doesn't seem to function like it did. I had things like breathlessness that the Dr ignored but other members also had and it reassured me.
Sometimes my smartphone means that it's difficult to keep track of where my messages go when I type them. Without the non verbal visual cues we use in f2f communication it's easy to both give and take the wrong end of the stick. For me it's usually both. Best wishes to you too. That hurt my brain this morning trying to explain myself😂😂
Yes I have had that 'breathlessness' too - still comes and goes - not to mention the 'brain fog' - what excuse will we have when we are finally 'better' !! 😂😂😂
I suppose if you look at it though, cancer and heart disease affect far more older people than younger people. It is just that they are by far more common and "traditional" diseases, so far more research goes into them.
Maybe a lot of "brain fade" or "brain fog" comes down to the lack of sleep caused by PMR & GCA pains. I know that I do a lot of "silly" things myself these days. Not being able to see the "wood for the trees" is something I have accepted these days.
Having been an insomniac for 20plus years and doing silly things for most of that time I would tend to agree. Your brain and body need the rest to function effectively.
Even though I was born in Ceylon (Sri Lanka) and family has been there for more than six generations, I developed GCA which affects older women (predominantly) and allegedly those with both parents of north 'polar' region descendency - where my ancestors originated. When I was much younger, was also diagnosed with the auto-immune condition Sjogren's Syndrome which has been in remission for decades. GCA is not common in New Zealand, where I now live, but fortunately - after an initial misdiagnosis - was sent to the diagnostic unit of our local hospital, put through all the tests, scan and x-rays that suggested GCA. A biopsy confirmed it. No sign of PMR.
This was in 2016, and a year later, the GCA has gone and I have a couple more months to come off Prednisone, reducing dosage by 1mg per month. Most of the side-effects have gone and I am feeling good! Could it have been stress? Possibly. As the matriarch of the family I take on board all its trials and tribulations - and of course, there is a lot of joy!
Stress has been my trigger! Have had to make all sorts of lifestyle changes to manage the disease.
Lowering my Oxidative Stress by 40 percent in the past 4 months has allowed my body to go through its natural healing process and the transformation has been incredible.
I try to exercise 5 times a week too mainly swimming and the gym. I also saw a nutritionist who treated my very bad gut problem so I had to do a lot of self enquiry and proactivness!
Anyway my 14 month PMR journey is coming to an end and I am coming out the other end! Plenty to be grateful for x
I started pmr nearly 2 years ago now down to 1mg. I am now nearly 71 and it started with no apparent reason. I play golf and love gardening so had plenty of exercise and have always eaten healthily. I was not on any other medication. The only explanation to mine was a lot of stress. Hope this helps
My history with PM is short, it came from nowhere in September 2017. One minute I was agile and fit, over night, I woke up crippled with pain. I never had recent invasive surgery. 2002 is the only surgery I`ve ever had, never had Medication for after care. In my employment, I was a Mechanic on Buses, Trucks and cars of recent decades. I`m 74.
Hello lannewebb..my PMR srarted nearly 14 years ago after an operation to my Right Hand after a fall on my way to work. It happened overnight l couldn't move had to sleep in my armchair and l couldn't bare anyone to touch me as l would scream with pain. My GP presumed it was PMR and l was started on high dose steroid coming down to 15mg as my main dose to keep me up and running as when l get to14.05 mg all my problems arise and my legs flare amongst other things recurring Cellulitus, Myofascial pain syndrome/O Arthritis in upper arms,shoulders and neck recently diagnosed by my Rheumatologist Dr R Hughes.To keep this short l know this is Hereditary as my late Mother suffered with PMR/RA and so does a Neice of mine. Through these 14 years l have been down to 5mg steroid a few times and my Osteopath has this on Record but because of my new health issues 14.05 mg seems to be my stumbling block.l am usually in constant pain with constant exhaustion and know that Stress is a Major Factor.The last 2 weeks has been a nightmare as my Other Half ended up in Hospital with chest and stomach pains and the pressure was on me to cope, No Matter What.This has upset the Apple cart as the PMR has picked up on it straight away and l have to Always apologise for what l have. Things have settled down a little bit now my OH is home but because our days are not to its usual pattern and l can't rest as much as I'd like the high pain level is still there. I have learnt that you have to pace yourself.You say you believe your statins aggravate your pain and l believe that the Propranol BP tablets l take aggravates mine. Best wishes and l hope your pain level settles.Do you belong to a Support Group?.l belong to the PMRGCA Support Group of Surrey and would be nowhere without their Support .Family and Friends have been very Supportive while the OH has been in Hospital and now recovering at Home ..But they will Never understand PMR and neither will l. Sorry my reply is long but l think l needed to get this off my chest. Other sufferers different issues with PMR/GCA are Always so interesting . trish 29
Interesting that you mentioned propranol BP tablets. I am on metoprolol and think it is probably the same thing. I have thought that it was in some way interfering with my absorption of prednisone . That was discounted by the doctors . My non absorption started around the time that I was put on it . It was interesting to see that the 15 mark ( okay ... you were 14.5 ) for me is about your stumbling block also. We are at about the same level of pain . I have recently been put on prednisolone which bypasses the liver.
Hello 30048. I have felt for some time that l am not getting the full benefit of my steroid intake and after l take my B/P tablet in the morning and evening it appears that my muscle pain increases particularly in the upper arms and shoulders . It could be a coincidence but after nearly 14 years with this horrible condition l've Always known my medications and what benefits they have given me . PMRpro is a very clever lady and the interesting post the other day on being a 50/50 Person got my little grey cells working fast and made a lot of sense.. It could be just a coincidence and it maybe the cold weather and extra stress from where my Other Half was in Hospital.l have quite a lot of questions for my Rheumatologist next month. I am on prednisolone and never had liver problems apart from when l was put on Methotrexate twice. Orally and with injections.l also believe l don't get the benefit of my Calcium and VD. I hope your pain level eases. This Forum is Amazing and l feel we learn so much through other sufferers experiences .l just hate living day to day with so much pain. take care trish29
OH No ....fourteen years!1. I am into my 6th and counting. I feel that I slowly stopped absorbing the prednisone . My bone density has remained the same through out this ordeal. An indication I was probably a 50% person also. I do now take the liquid form. I am delaying my BP medicine to an hour or so later than my prednisolone. I am on 25 mg once a day. I am also on a directic and wondered if that has some effect. It is a guessing game and I am getting weary of trying to decide which ailment is causing all the discomfort,. I have never been informed of anything being wrong with my liver and my blood is checked more often than I would like. Thank you for your input, I will keep in touch if one of my doctors begins to think outside the box. ( I am forever hopeful)
I am pleased you get regular Blood tests because that is the one thing l didn't get. My Rheumatologist doesn't Always go my Blood tests anyway.My bone density wasn't too bad last year and l believe l could be on the borderline of Ostepenia hence my concern of not absorbing the Calcium/vit D so hoping to ask about injection form. I am 72 in May so feel l have done well with all my years of PMR. I will be watching your posts with interest .trish29
My two-penneth, which sounds rather simplistic in comparison to many of the answers, is that for me I think there was a pattern. My much loved younger brother died unexpectedly after a short illness one early April. As one does, I got on with everything necessary - and in July, just when life was slowly getting back on an even keel, I woke up one morning covered in a rash and discovered I had shingles.
A decade on, my husband died very unexpectedly at the end of March. Repeat bit about getting on with what needed to be done, apart from adding in having to house hunt, downsize and move. On 2 July, woke up feeling as if I had been suddenly hit with a nasty flu bug. Next day couldn’t lift anything... and here we are
I had very active life no serious illness but after some very odd symptoms in 2012 woke up without being able to move without pain or even dress myself or turn over.... started on very high dose steroids and cyclophosphamide as rheumy after Pet Scan discovered PMRGCA now down to 10 a day. Looking back to very stressful relationship bad fall from cycle but I personally think it was down to Breast implants with silicone one of which was leaking. No-one will agree with this in UK only U S A ...unfortunately still have silicone in body after removal which they can’t do anything about. Heard it could be genetic ... but could never take antibiotics and stomach causes constant discomfort but at least I have a life thanks to steroids!!
Yes was wondering about this too. Had a knee injury in July 2017, after a very stressful spring when I lost my dad. After steroid injection in the knee that didn’t work, I had knee surgery in September. The PMR symptoms developed after that until I was properly diagnosed in December 2017 when could no longer walk. Have been on pred since (15mg down to 14) and slowly trying to restart the course of my life albeit with as little stress as life can allow....
Hi I truly believe mine was stress induced. Divorce, then moving with my teenagers then a hurricane all in a few weeks time. My symptoms came then. I am very healthy and active and am getting back on my feet. 8 mg prednisone now and weaning slowly!
Months of emotional stress, plus incidents of physical muscle strain.
Stress at home (a big wedding, complicated to arrange, emotions riding high over a long period) and at work (things I had no control over but which kept me awake at night because my performance would be judged by achieving a goal unattainable if others, abroad, did not play their part).Then physical strain, carrying home some bags from school which were too heavy for me started off my shoulder pain which got worse and worse. Very intense Christmas catering for many people, changing beds frequently, serving so many meals. I decided I simply was not strong enough so decided to do some stretching exercises for my legs which caused crippling pain in the following days. Went around in agony for weeks (had GCA symptoms too, but did not know anything about these conditions). Could not turn over in bed, or even pull the covers over myself, could not bend down or raise my arms to adjust the radio on the car dashboard. Had a tender scalp, felt soft and inflamed, my neck was so painful! Went to my pharmacist to ask for something stronger for pain. He told me to go to my GP, who after blood tests, suspected PMR and started me on steroids (miraculous effect!). The GCA was not picked up until a visit to the Rheumatologist a few weeks later.I can't believe I CARRIED ON working when I was so ill and disabled. I thought I had just strained myself really seriously and it was my fault for being unfit. So thankful for the care I have received since diagnosis!
I was in remission from PMR after coming off steroids after 2 years (on Pred from early 2013 to early 2015). Then in later 2015, marriage ended, my mum was ill then passed away, then my house was affected by the floods - result - flare up and back on steroids. Came of the Pred again after about 6 months that time. Felt fine in 2017 but stress was still there underneath caused by my marriage break-up and job. Question then was did MRI scan panic attack trigger shadow in left eye vision resulting in sight loss due to acute optic nerve inflammation - Pred not in time to prevent.
I was diagnosed November 2017 although I think it started around May 2016 when I got eye shingles as I never really felt that I fully recovered from this. Sept 2016 got a frozen shoulder that never seemed to get any better and the this had spread to my other shoulder by jan 2017. During this time I had pain in my thighs went to the doctors again in May 2016 flu like symptoms and had also developed a rash all down my legs and arms. Had blood tests which showed high inflammatory markers but was told it was a virus!! Finally went back to Doctors in October and was referred to a rheumatologist (went private) who diagnosed PMR and was put on steroids 30mg and felt better within days. In my job during all this time I was being set targets which I didn’t feel I could achieve which I found stressful and with what I understand now to be PMR fog I was making errors which didn’t help. Also, I was looking after my twin grand children who were 1at the time on my day off so I never seemed to have a minute to rest and even if I did I never felt any better for it. So I think stress is a big factor even though I thought I could do it all.
Stress was my trigger too I think. Mother and father with lots of issues before they died, a high stress teaching job, then lifted a very heavy boat and bam, the next day it started. Took 6 or 8 months (can't remember) to diagnose. I'm not under stress right now and am able to reduce my pred again. So I think stress is a big factor, for me.
Hi Iannewebb, I'm sure Ive had it for some years, but as I have a very high pain threshold I just ignored it until I had a bad fall flat on my face, 2 black eyes and no explanation. Still unexplained after numerous investigations, but it did stir up the PMR pain so that I requested to see a Rheumy, and the rest is history...
While dealing with the stress at work ,I had a nasty fall too😢
Don't think anyone can live a stress free life but combinations of personal emotional losses can take you very low. Certainly had those in the three years up to GCA. Also surgery with a colon cancer R Hemi operation & 30 weeks chemo. ( reflection. Would not do now but I was given the choice!) Birmingham resurfacing hip replacement 10 years ago. Working world. Mineral oils, huge noise ,powerful cleaning agents used in engineering manufacture! Decorator/ horticulture. You just had to get on with it as it was. Lots of chemicals & solvents. Teaching!! Well that was certainly something different!! ATB
I think everything has to be cumulative over many years - otherwise, why don't a lot more "younger" people have PMR / GCA problems with stress playing a major part. maybe it's a gradual wearing down both physically and mentally.
Wouldn't disagree on the cumulative effect on any illness for 'older people'. It's a tough world out there & most of us strive forward the best way we can. All sorts of theories on immune system disorders but all very iffy. Tougher world in the past & people didn't survive as long. Well there's one to cheer us all up!!! I hope. ATB
I am now off steroids but my legs still not work properly the stairs are a pain to mount and walking too far they stop working. This only happened since polymyalgia but doctor insists I probably have arthritus in my knee. Perhaps that is so but what the whole leg packing up. 2years ago I was playing golf and outdoor bowls and doing lots of walking but I can no longer do that. However I suppose there are many worse off than me so I will try not to moan. 😁
About 6 years ago,whilst we were dismantling an old garage, one of the beams fell on my head, well a few months later I started feeling weird, can’t really explain it but like I was in a dream, after this a stream of symptoms hit me, terrible insomnia, a feeling of fear and anxiety all the time, bad back. saw the GP on numerous occasions, think they thought I was mad. I even paid to see a private neurologist as my head just felt weird all the time, terrible tinnitus etc. But they found nothing wrong. I slept a lot in the day as could not at night. And my senses were over loaded all the time.
I remember going to the cinema wearing sunglasses and earplugs!,,!
I found I could only do a couple of chores then I had to go lye down as was whack out.
This went on for about 2-3+years, but very gradually got better, only to fall foul of PMR !,.
I don’t know if this connects, but I was certainly stressed out for a good few years xxxx
I’m convinced it was stress in my case. Caused by very poor treatment by an employer. At the height of the mistreatment the symptoms started showing up but it took months to diagnose.
Remember reading an article on PMR in relation to babs powell of pans people. Story Suggested it was primarily a problem of dances and sports man who destroyed joints. I just don't thick it is primarily joints. For me it has been more like a dead leg/arm.painful stuff with limited mobility. Not sure of full cause or percieved cause. .
My PMR symptoms came on over a period of maybe 18 months. Initially I had a feeling that I'd strained *both* biceps possibly from a routine gym visit. So both my upper arms were sore as if there was a muscle rip that needed to heal. I had to limit movement, sleep with them folded across my chest Dracula style, but I would often hurt myself in the middle of the night just by stretching an arm. My self diagnosed treatment was to rest and I didn't go to the doctor but just stopped doing " pushing" exercises. After maybe 6 months with no improvement I did go to the GP and made the mistake of sharing my self-diagnosis. The GP agreed that I had hurt myself in the gym and to continue resting and take Ibuprofen. Then over the next few months I started to get stiffness in the thighs after walking and also at night. The arm pain continued and my range of movement became restricted, Ibuprofen didn't really help. I became quite deconditioned. I went to a private physio who had no clue and tried to get me doing yoga. Finally at its worst I couldn't sit for more than an hour without having to get up and move so driving and theatre / cinema trips became problematic. I finally convinced the GP something else was happening and I got referred to a Rheumy : blood tests , x-rays and an eventual PMR diagnosis. I started on 20mg Pred in November and literally the big pains went away overnight. 4 months in and I'm now tapering down. I'm pleased with how the treatment has gone but aware that it's not good to be on steroids any longer than necessary. I'm down to 4mg now and no return of large muscle pain but some stiffness in the fingers on waking up which tbh I can live with at this level. I'm no nearer to understanding how it started. I'm moderately stressed but no more than at any point in the last 20 years ( altho of course I'm older ). I've had disrupted sleep throughout and probably have Pred related insomnia now .I sleep from 11 to around 4:30 then I just lie in bed until 6:45. Libido probably reduced or is that my age ( 56) ?
I had a knee meniscal tear trim around 6 years ago which left my knee knee stiff and difficult to fully close. I thought this was something unavoidable related maybe to bone on bone contact but one of the effects of the steroids has been to reduce what must have been inflammation around that knee and I now have full movement of that joint . I've been able to rebuild strength in the last four months but could the knee op have been a low level trauma that set my PMR in motion ?
"aware that it's not good to be on steroids any longer than necessary."
OTOH it is far worse to NOT be on pred for as long as you require it. A recent study has shown that the so-called pred adverse events (other than cataracts) would occur at a similar rate in an age matched population who are not on pred.
You have been very lucky to get to 4mg so easily - but you are male I'm assuming and men frequently have a very much easier journey for some reason. They are probably most of the 20% or so who are over PMR in a couple of years. Don't spoil it for a ha'p'th of tar - be very wary if symptoms reappear and don't ignore them or you may end up going backwards.
Pred has not been a "treatment" for the PMR, it is a management strategy. The actual cause of the symptoms we call PMR, an autoimmune disorder that makes your immune system unable to recognise your body as self, is chugging away in the background. The inflammation it creates is being mopped up by the pred - so you have no symptoms of note. Go too low on the pred and the inflammation will build up again - and you will have symptoms again.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
or is that my age ( 56) ? 
Difficulty tapering and questions~!
What causes PMR? (poly myalgic rheumatica - translated from doctor speak as many muscle aches!!!)
Beware of doing too much
This year's PMRGCAuk AGM
