Good Morning from Michigan.
I often have people who do not know what PMR is say "I hope you feel better soon." Could you give me a great way to let them know about PMR in a clear way so that they can better understand what we are living with? Thanks so much. Mayo Clinic's definition falls pretty short for me to use.
Polymyalgia Rheumatica - many aching muscles..........an auto-immune illness where the body attacks itself and this one impairs the oxygen supply to the muscles and brings with it unwanted friends, like fatigue, weight gain etc.
Currently no known cause or cure - it comes when it wants to and goes when it wants to average 5.9 years.
Explain that when they pull a muscle it hurts but it goes away quite quickly this does not it hurts all the time.
Best I can do and and you can blame it on those Vikings..............
Hope it helps.
This is a simplistic paragraph from my link - probably enough for most people-
PMR is an inflammatory disorder typically seen in older adults (usually over 50, but occasionally younger) that causes widespread aching, stiffness in shoulders, neck, hips and knees plus flu-like symptoms. It is more common in women than men. Approximately 15% of people with PMR develop the more serious condition called GCA.
This is whole post - perhaps you take something from this -
healthunlocked.com/pmrgcauk...
Somewhat off the subject. I joined this site for PMR information. Now I seem to be getting mostly information about the Corvid 19 virus. I don't need that information because there are numerous verifiable medical places to receive it. It has got to the stage that I just scroll down the page and then get rid of it. HU has become almost useless to me. Anyone ought know automatically that if one has an autoimmune disease he/she is at risk for other illnesses.
The mods and admin are going to stop the daily COVID chat posts and have asked members to read through past discussions before they pose any questions.
Hopefully that will let the forum return to some sort of normality,
Obviously some people have been very worried about the virus but I think all the information is out there.
But some people find it easier to ask a question rather than look for the answer themselves !
I think that is totally unjustified because there has been only one single thread per day relating to Covid - all Covid 19 posts are directed to that and the other posts relating to PMR and GCA have continued as normal with any stray Covid 19 posts being stopped and redirected to the single devoted thread. If you had chosen not to follow that post then you would have had no inkling what was on it. You have the power over your settings for notifications and then what you follow.
There has been a great deal of concern on the part of all members about how susceptible we are to Covid 19 in particular - it is not a case of simply "another flu" where we can do something ourselves by having the flu vaccine. This is a whole new experience, no-one has any natural immunity to it, whether they have an a/i disorder or not. It was natural that people wanted reliable information about it and that is what we have tried to provide, demystifying it and myth busting when people came up with potentially dangerous "advice".
The majority of the forum has appreciated what we did - discussed in depth with the Admin people at PMRGCAuk at the outset. It will be phased out over the next while. Some of the main posts have inevitably related to Covid 19 - but most of the info ones were exactly that, info only and discussion stopped. For all of us in Europe it has been a life-changing period leading to major lifestyle changes for those of us on higher doses of pred. Maybe it hasn't reached you yet. Things that were a given and manageable with PMR and GCA suddenly are not there. Almost all of us have had medical appointments cancelled - leaving us with a lack of direction in management. That obviously impinges on PMR and GCA, stress isn't a good friend and knoweldge is power.
I'm sorry you didn't appreciate what we have done. But are you sure you could have done it better? After all - how can I stop people posting in the wrong place? You have also changed the subject in the middle of a thread.
Do you mean a throwaway definition ...wrestling with the gorilla and being in the losing side everyday for years ......or an autoimmune condition where the body, the vascular system gets inflamed, so you don't get proper blood supply to inflammed areas. Every night it starts over again so it's like having post marathon lactic effect in various parts of the body that hurt if you over exercise...or under exercise everyday until it burns out. So far the effective treatment is pred but it doesn't stop it. It just helps you get to the point of remission which can be as long as a price of string.
You feel as if you have permanent flu and ran a marathon last week without training - so all your muscles hurt but they won't get any better, You can't stand from sitting without a struggle - and that includes from the loo, where you sat wondering 1) how were you going reach your rear with the loo roll (otherwise known as short arm syndrome) and 2) would you actually manage to get up at all.
You can't get comfortable in bed without several pillows and turning over requires a similar level of planning to a military operation. You do it by numbers, getting one foot into oistion to start the process of pushing youself from on your back to on your side. By the time you have worked it out and got to sitting - you are exhausted and need to go back to sleep.
In the morning you struggle to get as far as sitting on the edge of the bed - and then you wonder if you will manage to lasso your foot with your underwear to have any chance of pulling them up. You probably can't wear anything that requires effort to get on - and if you are female, the thought of burning your bra is pretty appealing because you can't reach to do it up at the back.
If something is on a shelf above shoulder height or in the cupboard below waist height the chances of getting it out is NIL. You have dropped more glasses than in the rest of your life put together. You can't lift a full kettle and it hurts your hands and arms to cut a piece of steak. Holding a phone to your ear feels like a ton weight after about 5 minutes. You stand at the bottom of the stairs and wonder how you will get up there - that top step might as well be level with the top of the Eiffel Tower and on hands and knees is your best bet. And coming down will be like a toddler: one step at a time.
And not just for a few days after flu or an accident when you feel as if you have been run over by a bus. PMR lasts for years - an average of just under 6 years, some less, some more. But all pretty awful.
Sounds about right, my favorite expression was " It felt as if I had been in a car crash"
Thanks to all of you. I will use much of it.
Spot on, you have a wonderful way of expressing my symptoms, thanks Pro zzz
Your description was great. Covered it all. Many thanks. 🤗
That described me perfectly before diagnosis!!!
Brilliant, PMRpro! I realise this is a couple of weeks ago but it absolutely details the bad patch I’m going through at the moment! Trying to explain it to my OH is impossible - I feel I must be exaggerating - but I know I’m not! But the pain seems never ending - however, once I get comfortable in a recliner or bed - I can be pain free! Until I have to move to get up to go to the loo! I’m very limited with pain killers too. Anybody got any good ideas?
Best wishes to all!
Painkillers? Not for the PMR. Paracetamol MIGHT help some of the add-ons. I can't use anything much because of other medication - so it needs to be enough pred.
Don't forget to remind them that just because you have been diagnosed and receive treatment for it doesn't mean that you will suddenly get better it's a long term Health Issue and there is no Cure just Management.
PMR is a self limiting condition which can only be managed with medication , Self Care , Pacing Activity and rest until the Disease is no longer active in your system.
If you don't work with Care to manage the symptoms , have reduced Stress, and get support from others , your Pain and Symptoms can Flare up at any time.
This is why it's important for everybody to acknowledge and understand what you have and accept that you may need to scale back activities that create Stress to your Body or Mind ( this is fun activity not just negative activity) and you will often need to cancel things or take a few days full rest without notice when the PMR Flares unexpectedly.
If I feel I need to be brief I just say ..
it’s an autoimmune disease that’s attacking my muscles causing severe pain, difficulty with movement and often severe fatigue. There is no cure but it’s managed by taking long term steroids , the average being 5-6 years.
If they seem interested or ask further questions then I expand some more.
Yes like Bridge above I tend to keep it short and sweet- otherwise I see their eyes clouding over. If they ask more questions I’ll elaborate.
You make it sound that I am unsympathetic to the worries about COV19. This is not true. I have been home 2 weeks from hospital after a bout of pneumonia which with PMR and my age make me fall within the highly vulnerable group, but if and when I want to know what is happening with the virus, I go to the best source information I can find. Surprisingly some of this s on P.B.S. and B.B.C. My advice to others would be to do the same and not get information 3rd, 4th hand. Last night I heard/saw a very good program on BBC America regarding the NIH's actions etc. There was a lot of information.
I deleted my reply due to more covid chat. No real or implied criticism. Everyone dealing with it. I apologise if it came across that way. It wasn't my intention. I meant let's stop the covid talk on this thread....stay safe.
That is your choice - others asked here. Does that make them wrong?
Thank you to all who shared their definitions with me.
I don't have any better definitions but I understand the problem. One of my friends recently suggested that we could go to an energetic dance class when I go to visit her. When I insisted that I wasn't capable of dancing, she then suggested yoga. Despite the fact that she has known about my illness for 18 months she wouldn't believe that yoga was out of the question and virtually accused me of making it up! She isn't an unkind person, she just doesn't understand. And no amount of explanation seems to sink in. I think I'll copy and paste PMR PROs reply and semd it to her. Perhaps a 3rd party sharing their experience will do the trick. Perhaps it needs a different approach for each person you speak to and perhaps also as you go along. As you say, people seem to expect you to be getting better after a few months.
To be fair - I did heavily adapted Iyengha yoga for most of the 5 years I had PMR without being on pred. I had to do an aquafit class first to be able to get anywhere near but the teacher was superb and there was not a lot I had to give up on. I also did Pilates - also adapted if necessary.
I've done regular yoga throughout, it makes me feel good and stretches out the back etc. The yoga teacher knows I have problems with some things, eg getting up and down off the floor (I use a chair to lever myself up by my elbows) and with raising shoulders and my arms so she tells me how to adapt, or as I know my own body well I adapt things myself. There's usually a relaxation session at the end too, which is blissfully relaxing. I'd say give it a go, there's no pressure to do anything you don't want to.
Instead of trying to explain exactly what it is, I just tell them it's just like you have done a lot of hard exercise or worked really hard doing yard work one day and the next day you are so sore and stiff you can hardly get out of bed. The only difference is with PMR, you don't feel better after a few days. It just continues on.
Can PMR last for 5years+?
Trying to come to terms with PMR.
Thank you to other PMR sufferers
PMR can you blockout the pain
