I am a 48 year old woman and was in full throes of training for Ironman Vichy when I first started getting ill in June. By July my symptoms got so bad I couldn't get out of bed and was so tired I was sleeping all day until 4pm when I perked up for a few hours before collapsing to bed again by 9pm. I was diagnosed with PMR through a combination of blood tests and my symptoms and I am currently on 20mg Prednisolone and considerably better, although I'm still pretty stiff in the mornings and finding my return to work a real challenge due to fluctuating energy levels.
My question really is how on earth did this happen?! I was really fit, I am still (I like to think) fairly young and I was used to training most days a week. This illness has floored me so much I don't know where to start in terms of recovery and finding a way forward.
Just wondering if there is anyone else out there who has experienced PMR at my age. I am a long way off retirement so really need to find a way to get myself fit and well enough to get back to work fully (and ideally training) asap!
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There are quite a few younger people and athletes on this forum, so hopefully you will get some positive feedback.
Many wonder where it came from...and the answer is usually stress related, whether that be physical or mental or a combination of both.
Have a read of this, it might seem a bit daunting at first glance, but as you are young and fit you will probably get through it easier than many. But you cannot rush through PMR, it has its own course to run - but you can manage it and make life easier but only if you learn to accommodate it not fight it!
Please come back with further questions as and when -
It’s usually everybody’s first and biggest challenge! 🤦🏻♀️
Hi, welcome. I am sorry you have had to join. I am not one of the athletes mentioned by Dorset lady but I just wanted to say that anything can put a stress on the immune system even exercise. In fact elite athletes, such as professional cyclists, often teeter on the edge of their immune systems. At the moment that doesn't matter. All that matters is that you do everything to feel better. Reduce exercise to a tolerable level for the moment and rest too. I am linking you to the page if one of the previous athletes so you can see his story and know that this is a self limiting conditions. But you have to do your part too.🌻
As DorsetLady says we do have younger Members & Athletes, a fellow Member Hidden will reply to you in due course to help you from the Fitness Point of View having had experience of it himself.
Unfortunately, the only advice l can offer you at this time is to rest while the Prednisolone takes effect but you have to remember it is not a cure, it is merely dampening down the symptoms.
Once again Welcome & anything we can assist you with please let us know.
Welcome to the forum. Everyone has already said the necessary bits and I know mrsnails has asked a forum member to message you but in the meantime if you have any questions at anytime please feel free to ask. There is usually one of us around to try and help.YBB
Hi, I was not quite 52 when it hit me. I had a previous car accident which caused some issues and it took me six months to be diagnosed, so I sat a lot more than I should have for about a year. I am not an athlete but have a physically demanding job and like to hike. I found physical therapy in a warm water pool the most beneficial in regaining some muscle strength without hurting myself. I then slowly added walking, very gradually increasing distance and speed. From there I've added different types of exercises. The key is to go very slowly. You may feel fine and do an extra lap but the fatigue sets in the next day. Stay at a level for a week or more before you decide to increase.
I was 53 when diagnosed with PMR and still working out every day when suddenly I was barely able to get out of bed I was in so much pain. I have always had a stressful job so it is hard to understand if that was a factor. I have had PMR for 3.5 years and I have been able to swim laps 3 times a week the entire time, although when first diagnosed, neither speed nor flip turns were possible. Even when I walked like a robot, I could still swim like a dolphin! I feel the swimming helped me maintain my range of motion in my joints. I did give up running as my hips and knees were painful. I have found that rest is essential as there is no resilience if you push your body too far thinking you can train as you previously were able to, it will just leave you exhausted.
I was about the same age as you when I was diagnosed with CFS very similar symptoms to PMR I could't move in bed it was agonising and was twice as bad trying to get in and out I thought I would have to use a walker as I had to lean on the walls to go to the toilet. The doctors didn't have a clue and had no idea what was wrong with me actually I think they thought it was all in my head it was all foreign to them. They even suggested I have my Gall Bladder out - which I wouldn't agree with still have it and has never caused me pain. I spent a lot of money on alternative medicine I took Barley Green for a long time it
seem to give me energy then I found out I was allergic to Barley - then I read about a AFL Footballer in Queensland had CFS and he was taking DHEA he actually had written a book about how it affected him so I thought is he can take it so can I had to travel to a city to get a script . it was great until a friend of mind who was a pharmacist told me no way would she take it so I went off it cold turkey but I should have gone off it gradually. I had a memory problem for awhile but am ok now. I know quite a few sportspeople that have come down with the same complaint.
There are some experts who think that extreme physical exertion can be the final trigger for the immune system to go haywire. Physical fitness doesn't really provide protection against a lot of things - even though it may for other illnesses.
I was 51 when it started - at least, as far as I can identify, I suspect it had been lurking longer. And it took 5 years to get a diagnosis and treatment. I wasn't an athlete by any stretch of the imagination but was at the gym several times a week. I didn't stop but did have to change the activities I did drastically,
Young, exceptionally fit and male but still got PMR that put him in a wheelchair.
I had PMR the first time at 46. It went undiagnosed, but at 52 I have been diagnosed with PMR.
I had PMR the first time at 46. It went undiagnosed and ran its course in probably less than a year, with most symptoms gone in half a year. At 52 I have been diagnosed with PMR and was introduced to prednisone. It made life much easier. Both times that I’ve had PMR, I was arguably in the best shape of my life.
The PMR was initiated by an injury the first time and appendicitis the 2nd time. Both times I had PMR, I was running about 20 miles/week, cycling about 80 miles/week and swimming about 2 miles/week. So that was abit of my background.
Going forward here’s what I had to do to get back to exercise after overdoing it several times. Overdoing it will cause you to agitate your body and more difficult to heal and recover.
I kept trying to do small amount of moderate exercise and kept having pain each morning. After finally listening to discussions on this site, I learned that you essentially need to find the new you. Just don’t do anything for a few weeks. Limit any exercise. This is your base. Then gradually add to your base. Listen to your body. It will let you know when you’ve gone to far or hard. If you go too intense you will have the nagging pmr pain. Slowly you will figure out your new you and learn your limitations. It makes it tricky because you will feel well and think you are normal. Try not to take the bait. You’re pmr will bit you. Get to understand your base then slowly add such that you don’t feel pain the next day. Then throw in yet another variable while trying to taper off the prednisone. The trick is to make small changes, listen to your body, and don’t over do it.
Like misha, I did most of my initial pmr recovery was swimming. Just very light swimming. I felt as though getting blood to the joints helped quite abit. Swimming by far is the absolute best exercise and a must do tool to use in your new toolkit to manage pmr. Btw I didn’t think swimming too hard would cause problems. But you can over do it swimming too. You’ve got to go easy, make small changes, and only change one variable at a time till you understand how your body is reacting with the disease
Just want to say - I couldn't swim with PMR, shoulders and neck said no! I could and did do aquafit though - even with PMR and no pred and it kept me mobile and upright, especially together with Pilates.
I coould continue swimming as my main muscle strengthener ( until the dreaded POTS stripped most of that back at the moment too) .
I did discover that I had to combine two swim strokes not to get the pain in my shoulders , I use gentle crawl legs and a gentle breaststroke with the arms that doesn't over extend or raise my body from the water.
If I tried one stroke or the other either my hips or shoulders would hurt.
Gentle Aquafit in the warmest pool you can find is very much like Hydrotherapy from the physiotherapist for when you cannot exercise much but need to regain deep muscle mass and strength . It can be a great start back into activity for use all.
Just walking forwards and backwards a few times in the pool can do a huge amount.
Your experience , like many of us on the forum , proves that with some Chronic Conditions , like PMR , it doesn't matter how well you took care of yourself and how physically fit your are , you can still suffer with it.
The one silver lining is ( as long as you listen to your body now , you pace yourself , gradually building up your activities after allowing your body a little time to get the inflammation under control ,regain its balance, and have patience) your previous physical fitness and strength will help make your progress through recovery a little easier , both in side effects from steroids and on the speed that you can get back to more physical activities.
Although it probably won't feel quick enough , be heartened , many of the runners and athletes on the forum get back to their sport loves .... In time.
My heart goes out to you. I cannot imagine the shock and challenge of adapting to the resulting lifestyle changes easy, especially given your active lifestyle. My husband who is also very fit, and has often commented, while caring for me and supporting me on my PMR journey, that he cannot imagine living with such a condition.
Adaptation is the key, along with listening to your body. I changed my diet, activity level (I was inactive a few years prior to diagnosis at age 55), and rest, to “manage” my condition. Deep water exercises are most helpful to me.
Wrapping your head around a diagnosis can also be a challenge. I went through stages of grief having only retired 18 days prior to the onset of symptoms, and recently married a few months prior. I had just moved and was going to live out my life happily ever after. Then PMR struck and it took 5.5 months to figure it out. I was afraid, pissed off, sad, and had moments of panic.
Once I accepted my fate, I focused on what I could control (diet, activity, rest, who I got support from, etc), and things got better. I understand pred is also a key part of my journey. I deal with the few side effects I experience because nothing is worse than those awful, dark, painful months with full blown symptoms.
You have found us, and we will be here for you...because we “get it” more than others who don’t have these conditions. Our lived experience will hopefully provide you with insight and hope.
In the beginning I too spent time focusing on what caused my PMR, and then realized I may never find out (although I have a good theory). Now you will figure out how to move forward, and we will be right there with you.
I am older than you but a professional dancer since age 18, and taught movement at the University level and do movement therapy. I too was in great shape -- dancing about 20 hours a week -- and then suddenly within two weeks, couldn't roll over, raise my arms etc. Now, 2.5 years later I am back in ballet class and I am teaching 3 classes a week -- one a full out contemporary modern class. I am still on 4 mg of Pred, but two days ago I did the splits, rather spontaneously -- my body just knew it could again and wanted to. And I did some small jumps and high leg extensions. It does end, and your body-brain does remember all the training you've done, and the strength and agility will come back! Hard to believe at the beginning, but it does! Listen to the fatigue, carefully. As my doctor explained to me, as a lifelong athlete the my tolerance to sore muscles and stiffness was very high -- so not the best meter for me. Fatigue has been my best monitor for everything. The PMR fatigue feels so different, doesn't it!
Wow, thanks for all the info and support everyone! Reading these messages gives me some real hope for the future, but is also a timely reminder that currently I need to listen to my body and let it rest and heal. I think I had still been trying to look at exercise with my ‘training’ hat on, but can see that it is more about mobility and recovery at this stage. Learning patience will be a new skill for me and finding the positive in my current situation. On which note, I do have beautiful long fingernails since starting on the prednisolone!
I too am 48. My symptoms appeared in the weeks leading up to my 48th birthday and was diagnosed just after. Before PMR, I was incredibly active (although not as fit as you), riding three horses a day and caring for 7 of them on our farm, plus a full time job as a project manager at a software company. I started on the same level of prednisone. I was relieved because it made it possible for me to slowly begin taking care of the horses again, but my muscles were weak and I was still very, very tired. I managed to start riding two each day again, but I had to pace myself with other activities and give myself a break -- which was depressing. I spent many days wondering if this was really what was going to happen to me and I was so worried I would not regain my former activity level. Additionally, I've been suffering side effects from the predinose that made my face and body change dramatically, which only added insult to injury. But, I'm really happy to tell you that more than 8 months into this journey, I'm feeling so much better! I'm up to three horses a day again, I feel energized and back to my mostly normal self. My work isn't so tiring either. I still have some muscle weakness, but instead of the muscles just giving out, I can strain them a bit to develop them again. I still am very careful and try not to overdo it and ensure I'm practicing good self care, like eating well, resting when I feel tired and not over-packing my weeks. I'm down to 6mgs of prednisone, and my face and body are returning to me. The doctor remains optimistic that, because I was on the very young end of the spectrum, I will recover well. I've just learned that slow and steady wins the race -- thanks in large part to this forum. The key for me has been not rushing things or demanding my body respond on my timetable -- as I fear that stress (of which I had a lot from work and other busy things going on in our life leading up to the diagnosis) was a large part of how I ended up with PMR. I hope you find comfort in knowing you are not alone in being so young and that, in time, it will get better!
Hi was about 45 ! Great shape. Gym freak !! Working at least 10 hours running around (major airline ). A day sometime more ! traveling all over. And many many docs from the univ of Miami to Cleveland clinic. I have found what’s best for me !!!! Down to 2 mil (predsone ). For about 6 months now and holding. I become gluten free!!! And yoga stretching everyday very little sugar. Chicken and meat maybe once in a while !! Cbd oil everyday (no thc) do to my job or I would use with the t h c !! many docs said it would work !! It’s been a very long journey and this form has helped me. I keep staying is it the gluten free or. Cbd. Not giving either up cause I am feeling so great being able to get out of bed with our hobbling. Keep reading and learning is the best for you. And. Wine ok. No beer or hard stuff !!! Mj
I just got my dx at 48. I have spent the ladt 18 months getting healthy. I lost 125lbs. I was working out 3x a week. Eating low carb program. Then all of a sudden I couldn’t walk. Over the next two months the pain appeared in my arms, neck and shoulders. Eventually my dr. ran the sed rate blood test which confirmed the PMR. Ironically since I was already on a low carb diet, my inflammation number were quite low so the only indicator was the high sed rate. I finally see the rheumatologist on Monday and hope to get onto an official PMR protocol instead of rationing the limited supply of prednisone my PCP gave me to get me by. As for exercise, don’t overdo it. Take it slow and steady. Don’t let your good days trick you into doing too much. I started back with just walking as my legs improved. I think I will try yoga next week as well. I hope you are feeling better soon!
I am also 48. I started symptoms in December and went from being reasonably fit walking the dogs about 3-5 miles a day to feeling totally useless and crying just walking to the postbox. I was on 20mg and am now down to 11mg. I now swim twice a week, do pilates once and still walk the dogs. I try to pace myself and if I feel tired I give myself a rest. Its really hard when people say 'You can't have PMR you're too young' or 'don't old people get that' One of my kids asked me how I got so old so fast when he saw me hobbling (pre pred) to the door. There is definitely light at the end of the tunnel and it does get better. As others have said listen to your body and admit that you deserve to be looked after sometimes with a sit-down and relax. If you don't push yourself but just keep a steady level of activity its much better than overdoing it one day and then not being able to do much the following day. Be the tortoise not the hare is my mantra.
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