I don 't kndonow about anyone else but I am beginning to find far too many
contradictory medical/drug treatments being quoted here for PNR. Probably because of the now international quality of the forum. In UK we do not have the choices offered in US or even Australia and most doctors here are not clued up with PMR at all... let alone the different medications talked about.
I hate this debilitating condition it has messed my life up for so long now. However I am beginning to hate even more the crnkiness of people who think they may be suffering from it when they have a touch of 'rheumaticsor even a bad hangover',so that it turns into the controversial equivalent of what Chronic Fatigue Syndrom was a few decades back before it was recognised I have a diagnostic letter from a specialist dated 2008 when I was suffering all the symptoms and more. I was eventually diagnosed with Graves disease and a 75% blockage in my left heart area.After a stent and some Thyroid medication I sort of recovered but in the diagnosis the words 'possible Polymialgi rhematica / GCA were listed...no one ever followed this up. Only two years ago after a fall from a great height did this thing really manifest itself in full bloom. I meet many who say they also have the condition...and many more who know someone with it... however I have never met anyone having to deal with the symptoms I have nor anyone else on Prednisolone so it appears that it has become the 'tired people's disease of choice' just like Chronic fatugue Syndrom.
My neighbour who is 85 has PMR but does not take Pred he works 12 hour days as a farmer.... My daughters mother in law claims she has it but does not take Pred...but she also gads about like a 20 year old so a bit of a puzzle... when I can't even brush my hair without pain...
Christine. I know exactly what you mean. At my daughter's wedding, her dad's second wife said 'Oh yes, I have that'. She then proceeded to dance the night away, including jiving at every oportunity! And no, she is not on pred. Or anything else I don't think. She said her doctor doesn't seem to understand the pain she is in and therefore won't give her anything!! It is actually very annoying as I can imagine people thinking (when I say I can't do this or that) 'Well so and so has it and they don't make all this fuss! Sigh lol! Thank goodness we all have each other. Take care.
If someone of 85 can work twelve hours a day as a farmer without pred, it seems unlikely to me they have PMR, I wonder if they were actually diagnosed with it.
HELLO christine. the before& after. before pred i HAD to have help just to get dressed or undressed,with out pred I have no doubt I would have been in a wheel chair of that I am certain.since pred i have now got most of my mobility back & my life.just to add no other pain killer helped at all with the pain.I might be wrong to say but i dont buy all this what i call Hippy Crap.Try to stay positive hard i know,There is always good advice to be had from these forums. Best Wishes. Dave
Yes they were and they have all the appearance and problems of PMR but he has such determination and extreme persistance he is an inspiration to me to carry on... although I take many copious rests in between exertion
My gosh, I could not even get out of bed or get dressed without pred in the end. I could not even scratch my nose without extreme pain. There is no way I could have done anything active.
Hi Christine Fay, I think there is a difference between undiagnosed (professionally) or self diagnosed conditions and when a doctor has diagnosed it and has prescribed for it. PMR is an auto-immune inflammatory process caused by a lack of blood circulation to muscles and joints. It can be a very disabling illness where bending down, walking up or down stairs, reaching up, getting out of the bed and bath. carrying, etc., even standing up from a seated position can be impossible. It is diagnosed by physical incapacity and raised inflammatory markers. I had this illness for many years and this did not need a visit to the doctor but when it flared up, I knew I needed help. If someone is not very affected, it can be controlled through rub on anti-inflammatory gels and creams and a tablet of asprin. When it really is bad, prednisolone helps immediately. If your 85 year old neighbour is working, they do not have PMR. They might have PMR symptoms because most elderly people have general aches and pains. It is when it gets INCAPACITATING that it needs proper diagnosis and treatment. Giant Cell Arteritis, which is an associated blood circulation problem is a medical emergency because the incidence of total blindness is very high indeed. This needs treatment to prevent damage to medium and large arteries which supply vital organs and the prednisolone will help to prevent stroke, heart attack, dementia, etc., which are associated with poorly treated GCA. Don't let people judge you! I would say if you have diagnosed yourself and are not taking medication for it, it is not incapacitating. If you are medically diagnosed and are taking medication for it, you have it!
If your 85 yr old farmer has PMR, he is very luck y that without treatment it has not morphed into GCA which can and does lead to sight loss, either total or partial if left untreated speedily.
Everyone diagnosed with PMR is told what the symptoms of GCA are and to watch out for them.
Anyone that says they have had PMR for years and no treatment at all does not have PMR in my book.
I agree but it was my doctor that told me about the farmer... I see this farmer daily and he certainly has all the same problems as me. However he is very skinny and I am not... I think weight plays a great deal as far as the pain goes. I have had less pain since I lost some weight. This farmer has gone along with the idea that he had rheumatism and arthritis for many years..however the pain is the same and farmers can be very tough old birds. We have a local market gardener who is totally blind yet he grows the best and most varied collections of plants and manages very well. When you have been working land for decades you know every inch of it and sight is not so important... especially as we all go out in the pitch dark to rescue caught up cows or other things....
Hi Christine, I can only talk about my experience. In 2001 I was diagnosed by a consultant in hospital with ME/CFS, no medication required and then fybromyalgia which left as mysteriously as it came. I had good remissions but in the early days I was bedridden off and on for 3 years. Then November past diagnosed with PMR. I will never forget the pain (also had undiagnosed GCA). The pain and stiffness started June/July last year. It took me two and a half hours to get showered and dressed and drive an 8 minute journey to my drs. I know now I was one step away from a wheelchair. My dr. and I were going down the road of ME/CFS and Neuralgia.
I don't know how your 85yr old neighbour has PMR and works 12 hours with or without pred. I am at present on 10mg pred and my starting dose was 20mg and still I find that I can do very little. I am a young 60 yet feel like 90yr old at times. I am a very strong independent person who has had to adapt and be dependable at times on my son (which kills me) . Sorry I didn't mean to go on and on. Good luck Christine. Regards Pat
For me, weight wasn't an issue at all in my PMR symptoms. I'm pretty skinny and I could hardly get my muscles to move to get out of bed when this all hit me. Guess it's different for everyone.
Quite Christine - I had it for 5 years, no pred. I struggled to walk down the road never mind work a 12 hour day! Stairs were navigated on hands and knees if at home, pulling myself up with the handrail otherwise. No handrail - couldn't do them. If something was on a shelf above shoulder height I had to wait for himself to come home to get it - I couldn't climb onto the step stool without risking falling. My kitchen was designed to accommodate that - all drawers for things I needed all the time. When I moved from a house with a loo on both levels to one where my office and loo were upstairs and the kitchen downstairs life became pretty much impossible - though I suppose it should have resulted in some weight loss! No pain killers available OTC made the slightest difference. Pred made me mobile in 6 hours - miracle!
However - my grandfather definitely had PMR, except there wasn't a label for it then or any treatment as pred was only developed in the 1950s. Bruce described "senile rheumatic gout" in 1888 and Barber renamed it polmyalgia rheumatica in 1957. Granddad did spend probably 10 hours a day running his small holding - but he'd have taken far less time to do what he did had he not had his "rheumaticks"
Hi Christine,
I was using a pick and maddock one day, got a bit of a sore back so had to stop. It was sore the next day so went to the Dr who did laser massage etc and sent me home with pain killers which did nothing at all to help the pain. The next day my right elbow across shoulders to left elbow and hip to knees on both sides where so excuriatingly painful that I could not get out of bed without help and could not bend to sit on the toilet or get up again without help. I went off to the Dr immediately and she ( the darling) immediately recognised the symptoms as classic PMR and put me on prednisolone 15mg ( she split the dose am & pm) by pm I could walk upright and felt life was back on track. That was 1 year ago and now I'm down to 4mg and tolerating a bit of pain with the help of paracetamol once or twice a day - not doing half as much as I used to and get tired very easily. It is getting better day by day I think so hang in there. The farmer if he had my pain needs a medal and, as Elieen said in another post, men do not seem to have quite the same experience - generally speaking although some may have, I have no idea about that as I have only just met 1 man who was diagonised in January and have not had much of a chat to him. Most of those who have this problem that I know are women and in the age 60 - 85. I sympathise with your pain and have done a few long days at the beginning working through the pain however I could not keep it up. Hope this helps. Pred is the only medication I'm on so far
Christine you echo my feelings. Did Victorian ladies call this falling into a decline? Then teenagers of 1950s "outgrew their strength" , next Chronic Fatigue, M.E., what other names for not-understood peely-walliness ?
Unlike you I dont have great pain (arthritis, yeah) but am unable to walk across the room sometimes without arriving exhausted . It doesnt hurt to brush my hair, it's just too hard to keep my hand up there. I lean my elbow on the wall to support raised arm!
As for your friends with PMR who skip about like 20 year olds, - they have a long recognised condition called I'm AmazinglyMore StoicThanYou.