Running with sarcoidosis

I'm 35 years old and my running is linked with my disease.

16 months ago i was diagnosed with the auto-immune disease sarcoidosis, which has no cure and no known cause. The first signs of the illness began 18 months before that, and had affected my mood to such a degree that i gave up cycling and tennis after being good at both for most of my twenties. Consequently my fitness had dropped considerably. I had put on an extra stone. The disease had attacked my lungs and left it with scarring. After the diagnosis (by bronchoscopy) i was put on a high dosage of corticosteroids (predisolone). These drugs make most people balloon up and there was no way that was going to happen to me so i starting running, early in the morning, on the very first day of my medication.

The first run was hard work. I used my heart rate monitor so I could see exactly what my heart was doing, on the first slight gradient my heart was up in the 170's even though I was hardly moving. After the first mile I had to walk and let my heart drop before continuing the 2-mile circuit. I was in very poor shape but the exercise helped me mentally. However, I had serious concerns about whether I was ever going to get fit again? The only thing I could do was persist.

About every six weeks throughout 2007 I saw my specialist who did the usual blood test and chest x-ray and then gave me the good news that he was going to drop my medication by 5mg. My mood dropped with every drop in pills, prednisolone can make you elated. I'm currently down to 7.5mg a day, but can't drop anymore at the moment because the disease becomes active again.

My lifestyle has changed in many ways. I now have a strict routine and strict diet. Certain foods make me feel like shit for some reason so i try to stick to a clean diet of fresh fruit, vegetables, rice, pasta. My binges changed to blueberries and raspberries – much better for me and actually nicer tasting, but ironically more expensive than all junk food put together. I haven't touched alcohol at all since being on the steroids and this has been no problem at all to live with.

Mentally, getting into a new routine was hard at first, but persistence does pay off. Mainly I keep myself going by keeping sarcoidosis in my mind, and a spirit of not wanting to be beaten by it, it is a good motivation.

I have continued to run every other morning and i now do between 10 and 20 miles a week going out at 6am. It's extremely hilly round here and i actually live on the top of a hill, so every direction i go in the morning is downhill. I have one 6 mile route which is exactly 3 miles down hill followed by 3 miles up hill and, including warm up and warm down, I manage an 8 minute mile and i'm fairly pleased with that. I manage a 7 minute mile on the flat and i always use my heart rate monitor and try to stay within my zones, usually doing one interval training run a week. This is fine for me.

Without my morning run i would be lost.

Comments

  • Congratulations on so many things....the positive attitude, the running (8 minute miles on the hills....good stuff), the change in lifestyle.

    Running is great for fitness and for mental strength....I wish you success in maintaining the drugs/running/mood balance image

  • Hi Shane

    Just wanted to say congratulations and good on you!  Your entire approach sounds so well thought out, measured and sounds, and it really sound like it's been paying off! image

    Nothing much to add, but yours was a great post to read, and best of luck for the future!

    LP xx 

  • K9K9 ✭✭✭

    Well done Shane...keep going. Your motivation is an inspiration.

    I'm sure you are, but are you on bone protection treatment too along with all that steroid?

  • Shane HydeShane Hyde ✭✭✭

    Thanks for all your replies!

    Yes K9 i'm on alendronic acid to prevent bone weakness.

    Just one other point. Wondered if any of you have experienced this. But my girlfriend actually gives me a hard time with my lifestyle choice. I get up at 6am to go running before the congestion builds up and consequently have to go to bed at 10pm, which she can't stand. You can't win. Think we need separate beds!

  • K9K9 ✭✭✭

    You need to get her running too Shane!

    Glad about the alendronate.

  • Bring her a cup of tea in bed when you get back image
  • Hi Shane, K9 just pointed me in your direction. Just found out today this is what I have. In summary, I'm 39 and started getting joint pain about 3 months ago, starting in my hips then spreading to my knees, ankles and basically every joint although the hips improved relatively quickly. I then developed what I now know to be erythema nodosum and the pain in my knees was incredibly uncomfortable. I had trouble moving first thing in the morning as I was unable to move both my hands/wrists and feet/ankles until the ibuprofen kicked in a couple of hours later.

    Anyway, sorry, harping on here, I''ve been running a couple of years now, spent a long winter training hard and it's all gone to pot. However, I'm stubborn as hell as refuse to give in. i've had steroid injections in my knees which worked wonders and I'm getting reviewed every few weeks. With regard to running I've to take it easy but it's not stopped me (although a stinker of a cold has!). I'm chuffed to bits that my mileage has increased from 11 in April to 18 in May and 8 so far in June.  I've had to miss so very many races and nights at the club I'm in but I do hope to get back tomorrow. I'll be back, I just know it!!

    Really glad to have come across your post as this condition is completely unknown to me. thanks so much and enjoy your early morning runs! image

  • Shane HydeShane Hyde ✭✭✭

    Hi,

    Thanks for getting in touch and thanks to K9 for telling you about me. It's nice to read about people who keep on fighting.

    In the last few years i've spoken to quite a few sufferers over the net and it's a pretty horrible disease for many.  I know of many people who have had severe damage to their lungs, eyes, and other vital organs. Understandably they were very negative about themselves and their disease, but this is something i can't really relate to. I always think it's better to get angry with problems and try to work out how to move forwards rather than let things make you depressed.

    How were you diagnosed with sarcoidosis?

  • Hi Shane, diagnosis has been through blood tests, chest x-ray and the appearance of erythema nodosum.  Don't think I have it nearly as bad as you do as I'm not on any steroid treatment, although I have had injections.  I've not had the bronchoscopy you've had (sounds nasty!) Think the fact that I also have asthma isn't helping with the running as I'm finding my lungs are really struggling. Usually I don't have any problems but this last few weeks just trying to get back into things has been tough.  

    What sort of running are you doing? Are you able to do longer distances or do you stick to shorter runs?

  • Shane HydeShane Hyde ✭✭✭

    A trans-bronchoscopy is no sweat really. My specialist told me before the procedure that there was a 1 in 10 chance of a lung collapse but once i was on the morphine (or whatever it was) they could have done anything to do me! It really wasn't all that bad. I was awake during the biopsy and could see the monitor showing the inside of my lungs, the worst part was when they sprayed the anaesthetic into the lung before each of the several biopsies, which made me cough my guts up. But a nice nurse held my hand the whole way through. And everything went well. Wouldnt want to do it again but didn't think it was as bad as expected.

    However, a cystoscopy is another thing altogether! But i'll mention that in another thread. 

    I agree, trying to get back into fitness is really frustrating. When i think about how fit i was when cycling with the racing clubs and doing audax and then compare it to how unfit i'd become just before i started running, i didn't think i would ever get back into shape. I know now that i have to keep it up, no matter how i feel, as if i let it drop it will be hard to get it back.

    I run on pavements at 6 in the morning, 3 times a week. All the routes are very hilly, i live in dudley. I try to do a 6 mile route if possible and average about an 8 minute mile. I warm up slowly and try to make one run doing anaerobic intervals. I always use a heart rate monitor and an mp3 player! Last year I tried running longer distances but on one 12 mile run i started to have breathing problems so thought it best i stick to what works for me. It was -1c when i did this run which may account for the way my body reacted. But then my body has been behaving strangely since being on steroids. I have to accept it's limitations.

  • This is very useful to know thanks Shane. My distances are slowly creeping up again (currently max 7 miles) but I'm doing it pretty slowly one thing at a time. Got my first race on Thursday which I don't plan to race more really take part. I've missed racing, sad I know, but it's an essental part of running for me.

    Keep up the good work. I admire you for getting out at 6am. I struggle even getting out of bed at 7.30am and certainly couldn't run then so well done you! 

  • Heh Bedshaped,

    How is your illness now?

    Ive been plagued recently by both chest and viral infections due to immune system being suppressed by taking steroids. Managed to go out running on the good days and doing okay, managed a 7.3 minute mile over my last hilly 6mile morning run, but its so frustrating!!

    Saw this article recently about sarcoidosis and Bernie Mac which you might like to read if you are feeling brave - http://www.chicagotribune.com/features/lifestyle/health/chi-sarcoidosisaug12,0,5966562.story

  • Hi guys!

     Not in the sarcoidosis club, but I was in the evil Pred empire on and off for 10 years due to Ulcerative Colitis - at one point, about 3 years ago, I got so breathless just walking to the end of the street I got to see a respy guy as they were worried about sarcoid . . .  esp as my xrays had a bit of hilar shadowing - but (I really do thank whomever) CT scans were fine, and the respy boss decided it was just due to the steroids.

    About this time I was started on azathioprine, and have not looked backimage - so much so, I have finally left the gym (not that I was a regular) and took up running outside 5 weeks ago. I would have started in January (good old new year resolutions) but got a stress fracture on New Year's Eve!

    Having *never* run before it is a whole new world . . .

     So anyway, good on you, and if you wanna talk steriods I'm around.

    Hopefully, maintaining fitness is easier than building it up from scratchimage

  • Hey! My name is Tim, and I was diagnosed with sarcoidosis in November of 2016. I must admit I hadn't taken very good care of myself, I was super active as a kid and a young adult. I started to notice at work, around my peers, I would get winded way before they would. I got double pnumonia, and that's when they found the scarring in my lungs. I too had to take steroids for months, so glad that's over. Now I have been diagnosed with osteoporosis, and vitamin d deficient. I'm 36 years old. 
        I have started running, I can walk about a mile, and jog about 200 yards, split into 4 intervals of 50 yards. I wheeze after about 50 yards. I hope this gets a little easier. I'm not gonna give up, and I'm glad my girlfriend sent this link to me. I'm gonna thumbtack this in the front of my mind. Not gonna win ant races anytime soon. But I'm gonna try my best not to let sarcoidosis win!
  • JazzijJazzij ✭✭✭
    Try following a C25K programme.
  • Hi, My name is John, aged 49 and I have been diagnosed with sarcodosis this week. After initially being treated for a kidney infection and then stone my GP sent me for a chest X-Ray as she thought my chest sounded a little rattly. After having the X-Ray I was asked to re-visit my GP and was told I had a prominent hilar and that although unlikely I should not rule out cancer. After body scans, X-rays, many blood tests and biopsies it may seem strange but I was glad to be diagnosed with sarcodosis as I feared the worse. Two years ago I ran the Manchester marathon in aid of cancer research and was a regular half marathon runner. I haven't ran for three months now due to the test, stress etc but I now intend to start again. I'm not sure how far I will now be able to run but if I can slowly get my level up to regularly run similar distances to Shane Hyde I will be more than happy. I am not on any steroids and will continue to have regular scans to check the condition and my consultant has told me to carry on as normal and if my body lets me do it then continue to do it and this is what I intend to do.
  • Hi all. Great to find this thread. I am battling with post sarcoid flare ups. I am taking preds @ 10mg currently seems to be my sweet spot...but I seem to be in cycles of feeling fit and doing 3x3 miles a week with no effort to then feeling rubbish and my lungs feel like they are all closed up. Not sure why or what the trigger is for this cycle but would really like to get the consistency needed to increase my stamina into the double digits. Anyone have any advise?
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