Athletes dealing with PMR

[eskimo7070]

I was diagnosed with PMR 3 months ago. I am 62 yrs old male who runs marathons, Ironman triathlons, etc..I do not take prednisone or any other drugs. I have dialed in my diet, use CBD cream, acupuncture, massage, and meditation. Everyday is an adventure as to how I will feel. Shoulders, arms, neck can be a total mess. Sleeping is difficult due to pain waking me up every few hours, so it seems I am always fatigued. But working out really seems to make the body feel better. Are there any other athletes out there who have declined the drugs, taken the wholistic approach, who continue high intensity and high volume levels of endurance athletic training?

[Devedaaee]

Also new to PMR, also a (poor) triathlete. I’ll be interested to hear peoples responses to your question. Also noticed quite a few veteran athletes turning up in here...

[Hidden]

Hi Eskimo

I truly have great sympathies with athletes who get struck down with PMR

The issue with PMR is it has a mind of its own, it’s a Self Limiting Disease & it burns out after different lengths of time & no one has any answers to why.

There are people who’ve tried going down the Holistic Route but have resorted to steroids in the end. There had been a big discussion over the weekend, so l’ll send you the link.

The major risk you run in to is that untreated PMR may cause you to develop GCA & then your sight is at risk, plus you will need a much bigger dose to get the inflammation under control.

Kind Regards

MrsN

PS

healthunlocked.com/pmrgcauk...

[Blearyeyed in reply to Hidden]

Definitely go and read that link , it's the answer you are looking for.

We are all different and PMR affects us all in different ways to differing levels so ultimately what we choose for treatment must be our choice.

Holistice medicine is an excellent part of the management of PMR , but it will not be either a "cure" , or stop the mess in your joints, excessive pain or Fatigue.

Steroids are really key to managing PMR , again not a " cure" , there isn't one, but they do help you manage the pain of PMR more easily , and therefore , if you are already fit , they will not have the same level of impact on your muscle density that they do on non athletes.

The struggle with PMR and the overcompensation you do in movement in pain days without steroids ,however , can have as much , if not more, impact on your muscles , endurance and increase injuries because you lack essential pain control.

Getting the inflammation under control quickly with Pred helps very fit people , with an ordinary active lifestyle and good diet regime , carry on as near to normal with a disease like this and many continue their exercise and sport painfree because of it.

Over exercising to " work out the pain" as you are doing at the moment does not help long term with PMR. Exercise needs to be adapted with rest , even more so if you choose the non medicated route.

It's not like recovering from a tissue or ligament injury , you can't force PMR out quicker , you can only manage the pain and symptoms it causes until it wants to leave your side.

With PMR , exercising, even if it feels good at the time of activity , will increase the PMR inflammation and Fatigue , wether you take the steroids or not , it will take longer for you to get back to life without PMR again , reoccurring Flares slow down your eventual recovery .

Excess serotonin is not a substitute for Pred and when the serotonin levels from exercising fall it will be like coming out of a sugar rush for your arms and legs everytime , you will be repetitively creating Inflammation flares in your joints .

As you say yourself , your muscles are a mess and the Fatigue sets in.

Be prepared for change and don't think of steroids for PMR like illegal use steroids , they are very different from each other and it is not a physical , mental or athletic failure to get help from them.

Good luck xx

( Advice from an ex athlete ( about 100 years ago) , recreational coaststeerer, free diver , long distance swimmer and land artist pre GCA/ PMR ).

[JakeSearcher]

I had been an athlete my entire life. 9 months ago I wanted to believe I could beat PMR without the pred. Very quickly I came to know that it was impossible. But your fitness counts for a lot and should very well provide an easier path on the road to remission. Nobody wants to take those pills but those pills are all we've got right now.

[Hidden]

Sorry Eskimo that you've also joined the club. I also am a triathlete with an Ironman under my belt. I had this PMR 6 years ago. I ate well and worked thru the pain without a diagnosis or Prednisone. It took about a year till I was back to normal. Life was miserable just as you are describing. I continued running, but slowed back quite a bit. Now, 6 years later, I've got the monster again. This time I was diagnosed and am on prednisone. I am back to running pretty decent and swimming decent. Biking is the toughest due to so many variances in terrain and wind. This stuff, you've got to slow down, or it will make you worse. What you are battling is probably your body rejecting the work. If I work intensley, particularly cycling, my body will hurt really bad a few days, mainly hands and fingers. Other than that, I am good to go. Not as fast or strong and need to hold back particularly cycling. Can hammer swimming and running pretty good now, a few months on prednisone. I am doing so much better with prednisone. It's really not bad. the low dose of about 20 mg will make hungry and impatient sometimes, but that's it. I am very glad I did not take the holistic route again. Life is much better and am recovering much better with the prednisone. I don't think I will be on it too much longer,... I hope.. But don't overdo it. your body will come back and make it worse... Good luck

[Hidden]

Here are the things that's helped me out the most, in order:

1. Prednisone

2. Swimming (intense as the body and range of motion will allow)

3. Eating healthy, watch carbs

This that hurt the most:

1. Weight lifting

2. Eating garbage like ice cream/pizza ( high carbs and/or high processed foods)

3. Intense cycling (seems to much on shoulders and tends to put you back a few days)

Running seems to help. Swinging the arms and all. But you can overdo it running as well. Got to watch the intensity. Your body will let you know when you've overdone it and will take time to recover.

Please post things you've done to improve. Seems like everybody is different to some extent. but similar too. Prednison and swimming is good. eating junk is bad.

[nickm001 in reply to Hidden]

I mentioned it before, tri-bike may be too uncomfortable because of the body position. Try regular road bike or commuter/MTB with more upright position. It may let you bike and not lose your conditioning.

[squashie]

I'm an active competitive squash player, walker and gym junkie. Dx last October after Australian Masters Nationals and thinking stiffness was due to overplaying/over training. Alas it was PMR. Had almost instant relief with 15mg and now down to 6mg. Once symptoms were relieved I've resumed at (almost) the same activity level. Only issue is a couple of niggling hamstring problems - whether due to the effect of pred on muscles, or a 78 year old body rebelling at the rigours of squash I haven't yet resolved. Suffice to say one has completely resolved, so I'm putting it down to rigour for the moment.

Given the risk from uncontrolled symptoms, and the relief that pred gives, it was really a no brainer.

Reading others on this forum, there seems to be a number of men who have an easier journey than most, and the fitter you are the better you seem to get on.

[Hidden in reply to squashie]

That’s awesome youngster. You’re an inspiration

[Hidden in reply to squashie]

Hey squashed, I also have the sore hamstrings. I’ve not heard of this problem from anybody else. No more problems with the hips or pelvic girdle, but the sore hamstrings seem uncommon,

[PMRpro Ambassador in reply to Hidden]

It is something I've heard mentioned in the past.

[Hidden in reply to PMRpro]

Thanks pmr pro. Sometimes it’s difficult to tell what’s normal or not normal with pmr particularly when your in the figuring out how to manage with this sickness

[Weegie51 in reply to Hidden]

Hi

Achy/sore hamstrings are my first indication of potential flare. Stride is restricted-although a bloke it feels like what a woman might encounter wearing a pencil skirt!

[Telian]

You've had lots of advice from fellow athletes but just be wary of the worse case scenario - untreated PMR can develop into GCA leaving your eyesight at risk.

Best wishes eskimo.

[nickm001]

"Mind over body" works for endurance training, but can really make you sick with PMR. PMR causes restriction in blood supply to muscles, which will lower your anaerobic threshold and limit your training intensity level. This is why we cannot or should not try to exercise at high level while suffering from PMR. On a flip side, moderate exercise ( at recovery level , 60-70% of the max) will promote blood flow and help in recovery. Steroids would let you exercise at lower intensity AND have decent QOL back. Some people have some negative side effects from steroids. Response is individual and you may have none or some that wont bother you much.

Not to scare you, but one thing to be aware of is that inflammation is present and if not managed by prednisone, PMR is 7x more likely to progress into GCA variant that is far more dangerous. At that point you will not have a choice to reject steroids ( at much higher dose) because if untreated it causes irreversible blindness.

P.S. I also did triathlons, but not longer then Olympic distance...

[David-42]

A word of caution which may emphasise the point made by nickm001. I have had PMR for over 3 years and this was preceded by a lifetime of reasonably strenuous activity, cross country running, hockey, squash being the major ones. Four weeks ago I started reducing from 1mg pred to 0.5mg. Suddenly, for the first time ever, my wrists developed fairly severe pain that restricted movement and use. At the moment my rheumy thinks this may be due to wear and tear occurring in the last 3 years that has been masked by the pred. Despite the PMR I have continued to do all the heavy work in my large garden which included all the usual machinery from chain saws to pick axe, as well as regular upper body exercises including light weights. The jury is out but I may have overdone it. In the meantime I have increased to 2mg of pred and waiting for a positive result.

[daworm]

I'm active, exercise, lift weights, ride bike, hike, shovel lots of snow!!! (ugh, winter) and before deciding to take prednisone all this was more or less impossible...I was terrified of prednisone and all the side effects...well I have very few side effects and have tapered down now from 20mg to 5mg in 2 years...with you being very healthy and active I think the prednisone would help greatly and you would taper down with little problems...all that inflammation is not good for your body...your choice though...I know I researched it many times on how to do this with out drugs...just didn't work out that way for me...if you can that would be the best scenario for sure....Good Luck!!

[eskimo7070]

Hi All, Thank you for your candor. I greatly appreciate it. I have a 1/2 Ironman in 3 weeks, which is 1.2 miles swim, 56 mile bike and 13 mile run. Due to the fact that I am not a young kid anymore, I have lots of experience competing in these 3 activities. I am thankful for that, as I know I will need to rely on all my mistakes and successes of prior years to adjust and race intelligently this year. Today, I am confident that I can deal with the bike(aero bars are extremely helpful to me) and run..the swim, which always was my best event is my main concern. I am so weak, limited in range, and every stroke is uncomfortable. And that is not to mention the anticipated pain if someone hits me or kicks me in the shoulders or arms in an open water swim. But I have a plan for this that should work on race day. I have a full Ironman which is 2.4 swim, 112 bike and 26 mi. run in Sept, plus another 1/2 in August. But I qualified for Ironman Hawaii on Kona in 2020, which is a beast of a race, so I somehow have to keep together for the next 18 months..so that is me. I come from a football background of many years, and saw steroid use up close by others, and what I saw just freaks me out about steroids, and most pharmaceuticals. I am scared to take them, though logic tells me that they must be a different type today. Then I hear scary stories about the side effects, and I think that they can't be that much different. I am scared of the side effects and how I would handle those personally.

[Hidden in reply to eskimo7070]

Good luck with all that. I will keep my fingers crossed.

By the way prednisolone or Prednisone are completely different from anabolic steroids used in sports. So don't be worrying about the side effects you have seen previously. This may help....and don't forget. Many of us don't get side effects to the extremes people imagine.

hopkinsvasculitis.org/vascu...

[Hidden in reply to eskimo7070]

No easy answers for your concerns Eskimo. Accepting and adjusting can be challenging.

Are you sure about the steroids you’re worried about? Pred, a corticosteroid, has (like all meds) side effects, but it’s very different to anabolic steroids sometimes favoured by so called athletes and sports people.

[PMRpro Ambassador in reply to eskimo7070]

They are DIFFERENT steroids - these are corticosteroids, not anabolic steroids. Nothing to do ith yesterday or today - totally different substances.

And most of the side effects can be minimised or avoided when you know how.

[Hidden in reply to eskimo7070]

Dude.... why the heck do you want to do a half? Seriously? You’re going to hurt yourself. It sure won’t help your condition. Don’t expect a personal best. Not really sure why you don’t want to heal before doing all that. Makes no sense. But each to their own decision.

[teesher]

Hi Eskimo, take the advice on here as it comes from years of experience of pmr. It's a beast but pred controls it well. Extreme exercise is a big no no. You will damage your body. The battle with pmr is mostly fought in our heads with pred taking care of the rest. Go easy on yourself.

[squashie]

I suspect Kona may be a step too far - depends where you are in the recovery cycle. And if you are going to compete, you will probably need to get a clearance from WADA or the relevant drug testing agency. Our doctors have a standard form that indicates medical necessity so shouldn't be a problem.

[Skinnyjonny]

Hi eskimo7070

When I was 51 year old I was diagnosed with PMR. I was a senior Fire Officer, ex-PE Teacher and Outdoor lecturer who has climbed 5 of the World's highest summits, ran 22 marathons (60+ miles per week), well over 400 half marathons, many extreme challenge events etc etc. I was about to run my 5th London marathon, 15th Great North Run and climb Ama Dablam (Himalayas) when I was diagnosed. I declined rapidly and could raise my arms for 3 months and due to the inflammation I was in a wheel chair. There has been a lot written on my progress plus an ITV documentary and BBC news item. There was also an invitation to meet HRH Queen Elizabeth. I was a PMRGCAuk North East Trustee and now PMRGCA Lead for the North East. I successfully followed a 21 month Steroid reduction programme, and also took Vitamin D, Omega 3 and Spirulina (seaweed). I've returned to half marathons and run over 220 parkruns, climbed in the Himalayas twice and Atlas Mountains twice. We are about to run our third parkrunathon (8.5 parkruns in one day) and return to the Nepal Himalayas to climb Annapurna IV (7525m). During the period of recovery and now in remission I was aided by weekly hydrotherapy sessions, physiotherapy and visits to the Fire Service Rehabilitation Centre. Good luck with your recovery - "Keep running free with a smile"

[PMRpro Ambassador in reply to Skinnyjonny]

Thanks for dropping in with your story!

[Skinnyjonny]

I've read the replies and I'm also the PMRGCAuk North East Coordinator. I've spent a lifetime as a professional PE Teacher, high altitude mountaineer and extreme challenge events ... but my greatest challenge was successfully coming through PMR on a 21-month steroid reduction programme. I've spoken to many people over the last 6 years and the main thing is to listen to your body, take the Pred first thing in the morning, relax for one hour and let your body repair itself. If in the afternoon you feel fatigued ... go for a rest. I would never have thought of doing this pre-PMR but your health must come first. I let my body repair itself and I'm back climbing at high altitude, running, and participating as an Outdoor Instructor. Our ethos was always "Invenium vium aut Facium" which means I'll find a way or make a way. Take care, listen to your body, recover and enter the remission phase. Good luck but please don't push it too hard too early, please. All the best, eskimo7070