Posted , 4 users are following.
Hi, I have recently been diagonsed with PMR at age 54, hit by it overnight.
I was cycling competetivly once a week and training four times a week.
I cant find anybody that I can relate to of my age to try and get an understanding what the future holds for me. Please let me know your experiences.
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EileenH nick19160
Posted
There are other men on this forum who also cycled and women who were doing high level sport. I hope they will respond to you.
In the meantime - you have to adjust to a new normal which will almost certainly involve a reduction in the level of training you can do. PMR is caused by an underlying autoimmune disorder that causes the body's immune system to go wrong and bit recognise your body as self. This causes damage to tissues and that underlies the symptoms. All pred does is reduce the resulting inflammation to relieve the symptoms to a level that allows a reasonable quality of life until the autoimmune disorder burns out which in 75% of cases it does eventually. Sometimes it can be as little as a couple of years but for about half it is more like 5 years.
How much exercise you can tolerate in the meantime does depend on your level of fitness before PMR appeared - for many even walking is a struggle, even on pred. Others are much luckier, everyone is different. On another forum there was a former forefighter who was distance running at a high level before and was in a wheelchair at first with PMR - he was back to running after about a year I think and as far as I know is now fully recovered. He posted as skinnyjonny on the HealthUnlocked forum and his story appears on the pmrgcauk Northeast site - you will find the links in this psot:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
About 2/3 to 3/4 of patients are female and almost all are over 50. I can tell you though that men usually have an easier and quicker journey, not always but usually. It is possibly due to the larger and better trained muscle mass but no-one really knows why. Everyone is different - you will have to explore your own paths but there are plenty of us here to offer counsel.
Cornwall_girl nick19160
Posted
Hi Nick
Sorry to hear about your diagnosis . I too was hit by PMR overnight last summer, aged 51 . I was working full time,playing regular competitve volleyball and skiing several times a year. Here is a summary of my last 12 months and I hope this may help you.
So a year into my PMR " journey" , I'm on 5 mgs a day of steroids and have had to readjust my sporting activites , hopefully only until this horrible condition goes away.
Now, I do light gym work , swimming and can still ski ... one day on the mountain , one day rest up . My pyhsio has been a good source of ideas and helping me think of new sports ideas eg pilates , brisk walking as I,m currently way off being able to play volleyball at my usual level.
I have found it hard going ,mainly because I dont know anyone else with PMR ( so this forum is great ! ) and my friends and family simply dont understand this condition . I think there is an overall lack of understanding about PMR but to be fair to my friends , I hadnt heard of it a year ago . I could have coped with not playing volleyball due to a sports injury but its tough when PMR gets you
What has kept me going is : setting some new sporting goals , ie I've recently swam 20 lengths , ideas from this forum and keeping the faith that the PMR will burn itself out eventually. Good luck with your PMR , and i do hope you can still cycle
All the best
EileenH Cornwall_girl
Posted
There are others in Cornwall and Devon - though how far from you is another question since you could be anywhere!
If you go to the PMRGCA northeast support site - link in this post https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will see a map on the home page. Click on the blue-grey area for England and Wales and it will take you to a list of all support groups which includes Plymouth and Cornwall amongst others.
Funny isn't it - I can cope with the other reasons I no longer ski but that PMR has some role to play is what angers me! Mind you - I did ski with PMR for 5 years before I was put on pred and found it an ideal movement to loosen up the stiffness!!!!
Cornwall_girl EileenH
Posted