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Anyone else told not to run anymore?
#235869 07/02/12 12:47 PM
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I have run 10-25 miles a week for the past few years. I also lift weights and work out at the gym. Last December I ended up with a peroneal longus tendon tear and was in a walking boot for 8 weeks. I ended up having major ankle surgery on Jan 30th. I was on crutches for 6 weeks, then in the boot again for another 6 weeks. I did months of PT and have been working my way back into the gym. It was a terrible 6 months mentally and physically.

My orthopedic surgeon and my Rheumy told me I should not be a runner anymore. They both say that with my disease I will have more degenerative tears and probably more surgeries.

This breaks my heart because I LOVE running. It is my stress relief. It is my ME time. It keeps my body strong and fit. I am not ready to give it up!!

I am 33 and have been diagnosed with AS for 5 yrs, but symptoms for many years prior. I take Enbrel and methotrexate injections weekly.

Anyone else get this kind of news from your doc?

Thanks!

Andrea

Last edited by ASrunner6; 07/02/12 12:48 PM.
Re: Anyone else told not to run anymore?
ASrunner6 #235974 07/03/12 07:23 PM
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I was never told this in the past (I gradually stopped running but it was due to other lifestyle factors and time commitments.) In fact I often wonder if my symptoms increasing as my mileage decreased was more than a coincidence.

I'm not a doctor and can't say if this particular injury is related to the disease but IMO if you can recover well and build your mileage back up, the mental and physical benefits of running sound like they outweigh the risks! If you suffer repeated injuries over time maybe you will want to revisit the decision but for now, go with your gut (and heart!) IMO.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Anyone else told not to run anymore?
ASrunner6 #235999 07/04/12 01:55 AM
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Yes I was told to stop running (and all the other high impact activities I loved) by my knee surgeon to delay the knee replacement as long as possible. I think I had already reduced my activities quite a lot by then because of my back and other random "injuries" (which I now put down to the undiagnosed AS). I think the running probably helped stave off the AS - until the disease started winning. I used to get a bit stiff and achy when I had a virus and took a few days off running etc.

If you think your doctors might be wrong about stopping running, I recommend you listen hard to your body - don't run if it hurts, especially if it hurts more afterwards. In the end it's your call, but you don't want to end up with damage that limits the ability to walk etc. Is cycling an option for you? It does get you outside in the fresh air etc - you can go further too - and you can get your heart rate up like you do with running.


Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.
Re: Anyone else told not to run anymore?
ASrunner6 #236022 07/04/12 10:35 AM
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Hi ASrunner6,

I have been told to stop running many times over the past 20 years. I have been told that is why I am in pain. I have listened to these PT's, Chiropractors, and MD's many times. When I stopped I got worse. I can see that all now. Each time after months of worsening pain and mental anguish I always went back to it slowly. And guess what..... I improved! While I am no longer able to run miles and miles or do half marathons I can still run. I mostly do interval running 3 to 4 times a week as my right hip seems to get worse with more intense running. I am a "runner" at heart which has been the worst part of this disease for me. I was just told again by a PT friend of mine when I got the dx to stop running. I laughed and walked away cause I know my body and I am going to work with it. I also do many other activities such as swimming, yoga, weights, gym classes, and walking to constantly change up my body and not get "repetitive". Doing something different everyday has changed my ability to function with AS as well as kept me mentally sound with a disease that crushes an active person like me. Good luck and smiles.

Jenn


Dx: axial and peripheral AS May 2012, Iritis, TMJ, Raynauds, Sjogrens.. 35 year old supported by amazing husband and 3 kids.
Re: Anyone else told not to run anymore?
ASrunner6 #236036 07/04/12 05:31 PM
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My rheumy doesn't love the idea of me running, and told me my running days are "limited". That said, she's supportive so long as I feel I can handle it. Right now, AS related foot issues are more of a problem than my spine as far as running goes

I've found starting with 10 mins alternating 1 min slow jog, 1 min walk (after a brisk warm-up walk) does wonders for easing my body into a run. I move like a 90-year old for my first mile or so

I find that running helps keep the symptoms at bay, so long as it isn't an active flare. Like you, I run 15-20mpw. I've found sprint tris to be a good solution. Cycling and swimming let me keep my running mileage low, but I still get to compete and all that jazz. Though I wish my health insurance could reimburse me for race fees when I have to back out thanks to a flare!



Kat, 28, DX 2012
Re: Anyone else told not to run anymore?
ASrunner6 #236173 07/06/12 11:57 PM
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I've been told time and again by doctors and family to stop running. If I don't work out for a couple days, I feel sore, tired, depressed. Running, biking and lifting weights helps me to feel better and feel normal.

I've noticed over the last 5 years since being diagnosed that I have put on more weight, 10+ pounds and can't take it off no matter how much I run.

I've torn my Achilles 4 years ago and it bothers my every so often, but if I notice it or other pain or tendons hurting, I make sure to lift weights to help those areas out. For my achilles, I'll do extra calf raises, do balancing exercises on a balancing board, or starting on a calf raise and lower down on my sore achilles. I truly believe that lifting weights has been the secret to keeping me injury free when I'm running 70+ miles a week or biking 100+ miles, running 30+ and swimming 2+ miles a week. That and buying new running shoes every 300-500 miles.

I know I won't be able to run forever and will have to switch to more biking in the future but I want to do what I can now! I've done 7 marathons, dozen+ of 1/2 marathons, triathlons and a goruck challenge.

Doing all of these, again, makes me more normal and makes me feel good about myself. I think that is really important, do what you love!!

Re: Anyone else told not to run anymore?
ASrunner6 #237353 07/23/12 12:34 PM
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Thank you all for your replies. I enjoy this message board since I do not know anyone personally who has AS and it is frustrating. I will definitely listen to my body and slow down when needed. This is going to be tough since athletes are used to pushing thru discomfort to get to the finish line. I'm able to mix running with weights and stretching. I run a couple miles on gym days and about 5 or 6 miles one day a week. So far, so good!

Re: Anyone else told not to run anymore?
ASrunner6 #238099 08/04/12 12:13 AM
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I'm a runner - got DX about 1.5 years ago and been on Meloxicam since. Ran 12 marathons within a few years before the DX - and I've run 3 since plus 2 50 milers and an ironman and a bunch of shorter races. Next up ironman florida in November another marathon on new years then an attempt at a 100 miler in February. Running's my passion, my mojo - it'll be a sad day when I have to give it up but I suspect AS will eventually make me ratchet back significantly if not stop all together. For now I'll keep at what I love to do.

Rhuemy knows what I do and doesn't discourage me much although he drops hints here and there it may not be the best. Basic guidance was if not in hips or knees then running is OK and for me it's only in my SI joint so far. Although both Achilles have been sore last few weeks so edder0009 experience did catch my eye. Rhuemy xrayed last month specifically for OA in the knees thinking my lifestyle combined with AS will make me more at risk. Waiting for Xray results but I doubt anything will be seen - knees feel fine.

In general - the more I sloth - the more it hurts - some exersize and I feel good without an upper limit I've found for too much exersize. With exersize AS seems to dissappear - unless I skip the NSAIDS for a few days then I can be stopped from any running for as much as a week after I get restarted again.

My Rhuemy happenned to suggest it's common for AS patients to be cardio junkies because the exersize make them feel better - but then he has to be a kill-joy saying there is no evidence the exersizing has any effects on slowing the disease. I'm not sure I want to believe him smile.

Good luck! Hope things work out OK - I can imagine to how bad it must feel to stop as I can relate to the love of doing it. I hope you find the right balance.

Last edited by Hill; 08/04/12 12:17 AM.
Re: Anyone else told not to run anymore?
ASrunner6 #238100 08/04/12 01:21 AM
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Well, there may not be evidence exercise slows the disease - but there's no evidence that it hurts either! Not everyone has progressive disease - if it keeps you feeling good what more evidence does the doc need?

I don't run anymore, but when I did (pre-spondy days) my doc was always wanting me to run less.... she felt it was somehow bad. Though of course when I did stop, and gained weight, what did she say? Lose weight.

Some docs can't be pleased smile Keep doing what you're doing - you are listening to your body and obviously it approves!! I often wonder where I'd be today if I hadn't slacked off on the running. I didn't do it b/c of spondy issues - I met a guy and got involved and found myself preferring time with him to alone on the trail or pavement. Can't say I regret it exactly - but I wonder if I had kept up on it, would I be in a different place today? I'll never know.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Anyone else told not to run anymore?
ASrunner6 #238775 08/15/12 04:12 PM
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Personally, I feel best when I'm training heavily (>70 miles/week running), including doubles (ie - running morning and at lunch). I think the noon-time run especially helps, as I sit in a chair at a computer all day, so it feels good to break up the day with a run. Neither rheum I've seen so far has discouraged me from running, but then again I don't have much active inflammation anymore, just occasional stiffness or discomfort.

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