PMR and Sport

[GarryB63]

Hi today I've been diagnosed with PMR. I'm 53 and up until now have been a competitive Triathlete. I'm looking for some good news stories about PMR and still being able to be a competitive sports person.....please.

Garry

[DorsetLady PMRGCAuk volunteer]

Hi Garry,

Sorry to hear you have PMR - is that 100% certain, you are on the young side!

You will need to take things slower whilst you have PMR, but with your previous fitness, age and sex you should be able to get through it much easier than some. However you do need to remember that the steroids do not cure the PMR, there is no cure, it only controls the inflammation caused by the underlying illness. All the time you have the illness you are more prone to fatigue, and your muscles will take longer to recover - so your training etc needs to be less frequent and less strenuous.

Males do seem to cope with the illness and the steroids better than ladies, and we did have a contributor on here who was a fire fighter, ended up in a wheelchair through PMR, but is now back running as well as ever, so there is good news.

There is no specified time limit for PMR, two years at least, and you have to learn to manage it, but if you work with it rather than fight it I'm sure you'll be okay.

Not too competitive though! Your journey with PMR is not a race, nor a competition, more co-operation!

Good luck.

[GarryB63 in reply to DorsetLady]

Thanks so much for your reply. My doctor called an hour ago to say the blood tests I'd had earlier today confirmed I had PMR. I will be seeking a second opinion as I was diagnosed on Tuesday with Subacromial Impingement Syndrome. It seems the two are often confused but guess you cant argue with blood tests. Still, whilst a second opinion may just delay the inevitable, I feel I must seek this given the impact this will have on my sporting life.

[Hidden in reply to GarryB63]

hi

Both conditions involve inflammation so good to get second opinion. Hope you benefit from treatment either way and enjoy your sporting life!

[Skinnyjonny in reply to DorsetLady]

Cheers DorsetLady - I've replied to Garry and offered him a few positives as well as the opportunity to get in touch for a chat. John x

[DorsetLady PMRGCAuk volunteer in reply to Skinnyjonny]

Good. Didn't want to actually name you, but hoped you were still around.

Sure your words and experience will help greatly

Glad to see you're doing so well

[piglette]

Hi Garry, I am sorry you may have PMR. One thing PMR is an illness and just as if you had flu you would not carry on as if nothing had happened, you must recognise the illness. Steroids are fantastic at reducing the pain and really act as a wonder drug that can fool us into thinking we are suddenly OK again. You need to respect the fact that you are ill. PMR is nasty but there are a lot of things that we could have that are much worse.

[Skinnyjonny]

Hi Garry - In 2013 I was 51 years old, a senior officer in the Fire and Rescue Service, climbed 5 of the World's 7 summits, marathon runner etc ... when I was diagnosed with PMR. I was on the Steriod reduction programme for 21 months, and although I'm still in remission, there is light at the end of the tunnel. Over the last 2.5 years I've returned to the Himalayas to challenge the unclimbed Mukot Peak, climbed Jebel Toubkal (again) in the Atlas Mtns, ran 150 parkrun's plus 2 GNR's, climbed the Cuillin Ridge plus several other UK Mountains including two UK 3 Peaks Challenges in under 20 hours (inc 11 hrs driving). I'm now 55 years old, and although not doing the extreme sports as I used to do, I'm back in the saddle and enjoying my challenges ... probably more so as PMR has taught me many positives about myself and life. I'm a PMR-GCAuk NE Trustee and you can contact me via our website; feel free to click on the 'About us - Our People' link on the top lefthand side of the header bar. There are also articles of my PMR journey in print in the 'Parkrun' and 'PMR and GCA: A Survival Guide' books. Remember, you are not alone - join a local support group, talk to other people with PMR-GCA, liaise closely with your consultant, follow your steroid reduction plan and don't take shortcuts. I'm available for a chat if you want to get in touch. Being a Triathlete I'm sure you will remain positive and have many friends and family to support you. Good luck - John R

[GarryB63 in reply to Skinnyjonny]

Thanks John. Your words mean so much right now. 6 weeks ago I qualified for the World Triathlon Finals, yesterday I was told I wouldn't be racing competitively again. It's not the end of the world I know and it could be a lot worse, I just need time to adjust to the new me I guess.

I'll take at look at your articles and may well get in touch.

And thanks to everyone for taking the time to respond, your thoughts and advice are all really appreciated.

Garry

[GerriMc in reply to GarryB63]

Hi Garry. I can understand your frustration. I'm a 63 yr old female and used to be a competitive rower and runner although haven't rowed for a while due to a shoulder injury some time ago. I was diagnosed in April. While waiting for an appointment with the Rheumatologist, my GP told me to stop running. I did what I was told and to be honest, most days I was too tired and sore anyway. After six weeks I got to see the rheumy and he actually said there was no problem running if I felt up to it so long as I didn't push myself too hard. I was a bit annoyed as I'd lost a lot of strength and fitness over the weeks before. While I'm obviously not at the level you and John are at , I try to get out with my club a few times a week. They are very supportive and if I'm not up to a run someone will walk with me. I need it for my sanity as much as anything. Sorry you're going through this but with stories like John's, there's definitely light at the end of the tunnel. All the best. Gerri.

[Skinnyjonny in reply to GarryB63]

Cheers Garry - I look forward to hearing from you and more than happy to have a wee chat. My mountaineering team have always used a bit of Latin during our presentations, " Invenium count aut Facium" meaning "I'll find a way or make a way". Weird that I now live by this saying. Feel free to get in touch - John 😀

[Shelleysinclair in reply to Skinnyjonny]

I am deeply inspired by your post. I am 51, diagnosed with PMR last F eb (maybe in a bit of denial as labs have always been normal). Started on 20 mg of Predispose and titrated down by 2.5 mg monthly. I was camping and kayaking with minimal discomfort in june and July then BANG a week agoo the pain and fatigue just reappared. I was feeling very frustrated and didn't realize until reaching out to others that I had reduced my prednisone too fast from 10g to 7.5 mg. Just went back to 10 mg today so I hope things will get better. I hope to be more active again soon. The meassage i keep seeing here is that only time will heal. Thanks for sharing.

[GarryB63]

Thanks Geri. Wow, I'm so lucky I stumbled across this forum last night so many great people. Whilst I'm still a PMR apprentice I'm sure I'll be reaching out many times for advice. Garry

[DorsetLady PMRGCAuk volunteer in reply to GarryB63]

Hi again Garry,

We may not all appreciate your exercise regime (but too old and arthritic personally!) but well done on your achievements so far.

Despite our differing ages, genders, nationalities, lifestyles we are a family and we all appreciate that PMR or GCA can be game changers, and as I said earlier we have to work with the illness, not against it, and I'm sure John will give you great advice.

Good luck, and keep us up to date with how things are going.

[DebbieF1603]

I've just read through all of the posts and feel so much better...I was diagnosed (age 57) in March and immediately 'gave up' my daily run as I had frightened myself that I would develop osteoporosis. Not that I'm a fast runner, just an enthusiastic one, running 3-6 miles a day. I substituted runs with some pretty fast and long walks plus swimming. In the last couple of weeks I've jogged a bit and felt no worse, no better. Having read these posts I will obvs take it easy but will continue with my running and try to get back to my former levels, slowly. Thank you everyone. This forum is brilliant.

[HeronNS in reply to DebbieF1603]

DebbieF, I'd have thought carrying on with some level of running (whatever PMR allowed you to do) would have been a preventative for osteoporosis. Glad you've taken it up again.

[DebbieF1603 in reply to HeronNS]

Thank you. I was just confused in the early days with what was good and bad and my hips were just too painful to try at that stage. I'm feeling optimistic now I have heard from all of you.

[Skinnyjonny in reply to DebbieF1603]

Hi Debbie - My focus was the Saturday morning parkrun and from there it was small steps to fitness and again to half marathon running. This was from 3 months in a wheelchair! Parkrun has such a massive diverse support mechanism across the U.K. (and beyond). Today was my 100th Durham parkrun and 149th overall since being diagnosed with PMR. Keep up the good work Debbie. All the best, John 👍

[DebbieF1603 in reply to Skinnyjonny]

That's very inspiring! Thank you for responding. This has all cheered me up.

[GerriMc in reply to Skinnyjonny]

Yep, love Parkrun.

[GerriMc in reply to DebbieF1603]

Debbie, the advice I was given is that the running actually helps against osteoporosis. Hope you're back enjoying your runs soon. Just rest when you need to. X

[DebbieF1603 in reply to GerriMc]

This is great. I can start to work on my distance again.

[GarryB63]

As I was only diagnosed yesterday I haven't yet been prescribed any meds. But as soon as I can I will be back in the pool and on my bike but will only be doing at least half my normal efforts until I get a good feel for how I react to the drugs and training. I can't run just yet as I had an arthroscopy to repair cartilage tears in my right knee four weeks ago. I'm blaming this for my PMR as 6 days post op is when the symptoms kicked in. And I think PMR is delaying the healing. Knee certainly feels worse now than it did 4 days post op. Once I get up and running I'll keep you posted on progress and the inevitable lessons I will learn.

Before meds did anyone else notice variations in the level of discomfort of symptoms. Some days it's almost unbearable and any arm movement invokes sharp pain in my shoulders and it takes me 20 paces to straighten when walking. Other days like today, as long as I keep my arms below 30 degrees there's just discomfort not pain and it's only a couple paces before I'm back to a normal gait. Is common for the level of pain and discomfort to be variable day to day?

[Skinnyjonny in reply to GarryB63]

Hi Garry - just read your last post ref knee op. Funny that as I had just had my 5th knee op (sport injuries) when I became fatigued with inflamed arteries and chronic pains. When you are prescribed steroids (Prednisolone) please stick rigidly to a structured steroid reduction programme as reducing too quickly will be worse in the long run. I maintained a daily health chart inc. weight and pain, and rested the whole summer. I attend weekly physiotherapy and hydrotherapy sessions, and attended the Fire Fighters Charity Rehabilitation Centre twice for a couple of weeks. Apart from the steroids I always take Vitamin D and Spirulina to thus day. However, the main thing is to stick to your steroid reduction programme and don't rush it. I was on morphine until prescribed with Prednisolone, and the steroids will make you feel like running a marathon but please rest and let your body heal. Join a local support group if you can. All the best - John 🏃

[Suedeshayes in reply to Skinnyjonny]

Thanks, I found your advice on pacing oneself valuable. I feel that I just want to get on the medication and be fine again. Guess I'm being a little too optimistic.

[piglette in reply to Suedeshayes]

I found a miracle happened when I first took pred. I could hardly move and suddenly within less than twenty four hours I was back in the land of the living. What I wish I had known at the beginning was how misguided some doctors are about PMR. My rheumatologist immediately wanted me to start reducing at a rate of knots which was a total disaster. Reduce slowly when you feel you are totally OK and do not be pressured. Also you should be given vit D and calcium supplement by your doctor as a side effect of pred can be osteoporosis. Also they should organise a Dexascan to check your current bone density.

Remember you are ill, so take life easily and pamper yourself. I go swimming and have the occasional glass of champagne afterwards (when I win the premium bonds) with friends for example.

[Suedeshayes in reply to piglette]

Thank you. My doctor is great and reassured enormously. She has given me vit D and a calcium supplement but says my bones are further protected as I am on hrt. I have found reading everyone's emails has given me an educational insight into polymyalgia that I Wouk do not have ordinarly had. Thank you again. Sue

[Rosedail]

Hi Garry: I was diagnosed with PMR at 52, eventually went on prednisone and then weaned myself off in a little over two years. I am MUCH better. However, I probably should have given myself at least a few more months on the lower doses of prednisone because while my blood work went back to normal, it has remained at the high end of normal. Of a bit more concern, I never completely lost the feeling of morning stiffness in my back and shoulders or stiffness when standing or after being seated. I am 55 now.

While I had PMR, I was not on this forum and I didn't understand that I really ought to listen to my body and that I could not hurry the process through attempting to work out though the tiredness. Even though I am not anywhere near a competitive athlete, I hated being "klutzy" and weak and that bothered me far more than the pain of PMR. I tried to power through my work outs, but even while I was on the prednisone, I had very little agility. I could run on the treadmill, but then it would take a long time to get on and off a treadmill or onto the matt. I rarely had the level of exhaustion that others have discussed, but I certainly had good days and bad days and the pain would move from shoulders to back to thighs on various days. I fell several times while hiking, but for a while I kept on doing trail runs with gloves on so my hands wouldn't get bloody when I fell. I injured my shoulders several times, but luckily I eventually worked out with an experienced trainer who kept adjusting my work outs to ease the strain on my shoulders and who didn't have me try and use the full range of motion. We worked a lot on balance and core. I found both during and after the PMR, that my ligaments were tender and prone to injury. Recently, I've heard that the prednisone can have this effect on some people. Currently, I have "effusion" or water on my knees and it's painful to walk. I wish I'd been a bit more careful in some of my activities. I start physical therapy next week. (Alas, they don't drain the knees as readily as they used to due to the fear of infection.) Anyway, I encourage you to listen to your body, stay fit but not focused on competing with others, give yourself some time to let your self heal (probably a few years), and then gradually build back up to a competitive status. Also, when you feel better on the prednisone, consider focusing your workouts on swimming/biking and perhaps a little less on the running for the long term sake of your ligaments

As an aside, my mother had PMR 20+ years before it hit me as well. She was on prednisone for 3 years, took her time weaning herself off of it, and never had a flare up in the 20 years since. (Now in retrospect, she realized she had some ligament/joint issues right after the PMR also.) Like you, she attributed her PMR to a physiological reaction to surgery. I attribute mine to several years of extreme stress at home. Best wishes!

[GarryB63]

Thanks Rosedail. Ive learnt so much in 24 hrs on this forum; about PMR but also how I need to adapt. I'm not yet convinced I have PMR but time will tell.

Garry

[DorsetLady PMRGCAuk volunteer in reply to GarryB63]

Well, we hope you haven't, but if you do at least you'll know more about it than most of us did at the start.

And you'll know where to come for advice, sympathy, a good moan and a good laugh! We deal with everything, anytime, anywhere!

Take care.

[Suedeshayes in reply to DorsetLady]

Will definitely come back to talk to you. You sound so positive, thanks.

[GarryB63]

Thanks DorsetLady 😀

[PMRpro Ambassador]

I see John Robson, aka Skinnyjonny, has replied - so I don't need to mention him after all!!!

The good news otherwise is that for 75% of patients PMR goes into remission in up to about 5 years - it isn't never ending for most people. In the meantime you don't HAVE to remain a total "invalid" - and most men get through PMR much more easily than women do.

On the patient.info site there have been several former athletes who still run/cycle/ski. Most of them have said they can't keep going at pre-PMR levels but manage up to 75% intensity. Probably the biggest difference is the time it takes to "train" to a given level - you often need to start very low and build up much more slowly than you are used to. The rest day between training days also appears to be very important for most people.

[markbenjamin57]

Greetings to all here, and you athletes especially. I can relate as a regular, competitive Squash player into my mid-50's, and 'Action Man' in general!

This is a really interesting thread and covers so many angles - not just about the ravages of PMR, but also the gradual process of ageing (sorry to mention it!) and the inevitable, often incremental slowing-down physically - even for the fittest of us - at the same time. I can't recall anyone in their 30's or 40's getting involved in this forum - sorry again!

This is my 'take' on the topic, for what it's worth:

Yes, PMR and other illnesses / major life events do take it out of us psychologically as much as physiologically. Chronic illnesses are notoriously hard to cope with at both levels, even when not Life threatening, and at any age from 3 to 103.

Either way, there's probably some stage in the Process of Change and Transition (of whatever kind, and for what ever reason) where many of us simply have to accept that our capabilities and ambitions aren't what they used to be - and might not improve. For us competitive athletes / types especially, I know this is a massive challenge (been there and got the T shirt!).

At the same time, I read many posts here about people for whom just functioning normally (e.g. getting through the day, doing domestic tasks, etc) is an equally massive challenge - even after a short period of PMR (let alone some years), and on the 'best' of steroid tapering plans. So, maybe, the more fit and athletic of us can count our blessings and feel a little humbled that we can still do at least some, or most of what we did pre-PMR? The stuff of 'Glass half-full / half-empty' etc..?

I mentioned in one of my posts some time back that, for some of us more 'Driven / Doer / Achiever / Competitive' (or whatever equivalent) Personality Types, the greatest challenge is probably that of emotionally adjusting to being less-so, whilst retaining some sense of Self Worth in the meantime. To my mind, this psychological challenge equals, or is possibly greater than that of dealing with diminished physical capabilities - and can be stressful in itself. And, of course, Stress is a well-known enemy of health conditions like PMR in terms of exacerbating the symptoms. So, how to adjust 'psychologically'? I'm no guru in these things, but maybe read my earlier post for some ideas..?

That said (and to echo what others have said here), I don't advocate 'giving-up' to health conditions like PMR (and / or the powerful drugs that control the symptoms) - only to be realistic and well-informed about what either or both bring in terms of their actual and proven physiological impact, and to integrate this thinking with the parallel process of ageing - which I'm sure few of us would want to acknowledge.

After all, a spirit of 'Business As Usual' can be a healthy Mind-set - so long as it's realistic in context - and there are many success stories with PMR / GCA too!

Hope this provokes some 'healthy' debate!

MB

[yogabonnie]

Hi Garry. I am just wondering how you are doing now and if doing any training. I have run 3 marathons and 10 triathlons...not too fast..as I was always the oldest in the field...so didn't have the pressure. I am 71 and did the last "sprint" distance tri this Aug. Do not want to quit so just wondering what you have been doing training wise. Winter is nearly here in Minnesota so I am off the bike and hoping to cross country ski. Any advice ? Thanks . Bonnie

[GarryB63 in reply to yogabonnie]

Hi Bonnie

Ive started training again but just cycling and running, I'm not yet back in the pool (apart from one very short swim). However, I still don't have a clear diagnosis. My doctor diagnosed PMR based on CRP and ESR results both in high 50's along with symptoms. The rheumatologist is not convinced. He thinks it could have been an auto immune response to the knee surgery, so at the moment I'm being monitored as I taper the Prednisilone. This is certainly what I'd prefer and given some of the blood readings, symptoms and dosages of prred I've read about is looking very likely.

After a month on 15mg my bloods returned to normal and that's when I felt well enough to start some hard training. I'm back to about 75% power output on the bike and building fitness and my 5k run time is 23mins which is about 3 mins down on my average. I'm making sure I'm well warmed up and stretch religiously (I'm now a budding yogi!). The rheumatologist has told me to live life as normal and that's what I'm trying to do.

So based on my experience I'd say carry on. It's winter here as well so my bike is on the turbo trainer and I can therefore push as hard as possible without worrying about getting home if anything flares up.

I see the rheumatologist on Thursday to review the last set of bloods but I intend to try and get back to full fitness ready for next season regardless of what he says! My only slight niggle is my left shoulder but hopefully once I'm back in the pool that will sort itself out.

Good luck with your skiing and get signed up for your Triathlons next year 😄 I will be.

Garry

[yogabonnie]

JUST what I wanted to hear!! Thanks so much! keep me posted. I could talk triathlons and biking and running all day long.