Help!

Susan, many of us on this site are athletes who have had to face the reality that our bodies have been disloyal. I was a competitive rower and hockey player. Others were swimmers, runners, Mountain climbers. Invariably we have all had to step back to deal with our disease.

Prednisone is not a cure. It is a mask.  You will be able to exercise, but not to the level you were previously.  

But you will in time! Slowly slowly. And you'll get some really good advice on here!

I really sympathise and spent a couple of months feeling dreadful, but now I've got my energy and cheerfulness back, but I just have to accept I can't do what I did before.

My GP advised that I am now a lithium battery - I have to sit down and recharge regularly rather than recharging overnight?

I've sometimes wondered whether ONLY active people get PMR! I love Daniel's remark about thinking our bodies have been disloyal. That's just I felt when I said I thought I was a rotten advt. for a healthy lifestyle. Never smoked, never taken drugs, never been overweight, grew my own veg. did all my own housework, bred and exhibited Great Danes and had taught 5-7 year olds.  It's not your fault said my lovely GP.

I hope that you get the rapid relief that I did. This is a good place to come when the glitches occur, as they almost certainly will. Someone will be there to reassure and  advise, encourage and sympathise. It will take time.

I've been symptom free now for more than four and a half years. Once rid of the pain I found that I was mostly able to live my usual life albeit taking care to not push it too far and making allowances for being a bit older (I've had it twice, the first time nearly twenty years ago. ) You do learn to listen to your body.

My younger sister was diagnosed just before Christmas and, like you, was horrified and, for a couple of weeks, found it hard to accept. Couldn't go to her yoga or dancing classes and had to get husband to fill the bird feeders. Hardly left the house.  But then her dose was adjusted to what she needed to control the symptoms and gradually her confidence returned and increased every time she was able to return to her "normal" activities.  When I spoke to her last weekend she had reduced from her original 20 mgs. to 9 and still ok. I remind her that that is very good going and to be watchful.

I seem to have gone on a bit.

Getting PMR really stinks, but getting a diagnosis and on the right amount of Prednisone is quality of life saving!  I am 68 and play tennis/singles , and competitive soccer 6-10x a week.  Have faith ! You’ll be running again soon.  Watch your appetite and diet from the very start and you might never gain the dreaded weight.  Several of us have not. 

Good luck, stay sporty!

If you don’t hate the water, water jogging might be worth a try. I wasn’t much of a runner when I was diagnosed but I was at the y exercising 5-6 days a week before. I found that being in the pool was the only place I felt normal.  I couldn’t pull my regular tank suit on so I got a tankini, much easier to get on and off. Warm water is very soothing. 

PMR is hard to accept and manage but after a little more than a year, I’m back at the Y 6 days a week, just doing different things.  Good luck to you.

My words exactly, when I pleaded to see a doctor, "I feel like I've fallen off a cliff".  After a few tests I was given the trial of prednisone and have to say within a few hours I was thinking "It can't be working already?" as I felt marginally better.  By the third morning I was better than my old self as all the aches and pains, including non-PMR ones, had vanished.  And although not an athlete I was always active and health conscious....

Just don't expect your muscles to be quite as tolerant of strenuous exercise as you are used to, and make sure you always give yourself extra time to recover and rest.  Be patient and kind to yourself, as you would be if you had a bad case of the flu or had broken a limb.  

There is a guy who is involved with the UK PMRGCA charity who was a fire-fighter and running marathons when he developed PMR and was in a wheelchair. He was back to running after about 18 months I think and is now climbing in the Himalayas again. But you won't be doing it soon - you will have to start training from scratch and take it easy.

https://healthunlocked.com/pmrgcauk/posts/131134944/what-a-difference-a-year-makes

Now how soon YOU will manage will depend on YOUR PMR - everyone experiences PMR differently and men do rather better than women usually. It is possible - but not guaranteed. The secret is patience and not trying to rush things. That is fatal.

 

Susan, I am an 80 year young bike rider and ski instructor, worked and skied about 80 days this passed winter. One year ago PMR put me in a wheelchair, with the information and help of the forum I am back being an active person. Yes, you can get back on your feet, slowly and do not rush off the Prednisone, it is not a race. Think positive and try to smile. Smiling ☺️

Dear Susan, PMR is life changing and we need to accept that things we could do are no longer as easy. Hopefully the pred you have been given will act like magic so you can at least get back into the land of the living. Don’t assume that because you can get out of bed again that you are back to normal, it is very easy to overdo it.  PMR needs you to rest, rest and rest. On the plus side PMR usually burns itself out starting at around 2 years but it can take a lot longer. Also you can slowly build yourself up again even with PMR, but you do have an illness and you have to respect that. On the other hand you could have a much nastier illness and you will get better.

My experiences mirror many of these. I want to complement ALL of you who commented here. You, forum members, provide  validation, the best information, and optimistic encouragement to members who are suffering one of our major life challenges.  

These are significant physical challenges, which usually result in existential growth, as exemplified here by all of you.

Thank you, each and every one of you.

Dan