Ankylosing Spondylitis?

PlayDoh1234

I'm not sure if I will get many responses on this one.. but I figure it's worth a try. I've battled ankylosing spondylitis for many years. I've always wanted to run but I find it just way to painful. The pain comes after I have finished running and will last for days. Is there anyone out there with AS that can jog/run? If so, do you have any hints/tips? Is it something that I just need to work through and eventually the pain will go away? Thanks for any advice!!

PlayDoh1234

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mkeen77

I don't have Ankylosing spondylitis... but doctors thought my dad had it for a while. He experienced chronic pain. He passed away before they officially diagnosed him, but just seeing your post made my heart go out to you. Despite me not being able to answer your question, just wanted to say you are in my prayers! Feel free to friend me if you want encouragement and support!

lauraniwa

I have had patients that were successful in running with AS but they had to be pretty commited to icing afterwards and limiting the volume. It comes down to what about the running bothers your symptoms, more the impact, they type of motion, the inflammation afterwards etc. It can be a really nice addition to treatment as the increase in breathing helps maintain chest wall expansion, but there are a lot of factors. Repsond here or PM me if you like, we can try to work through it.

KendraLoveless

Your condition sounds very painful! I looked it up, and found this:

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

... all of which you probably already know, but if you don't there it is.

It also sounds like there are some good therapies that can help, and it highly recommends swimming, as"swimming involves all major muscle groups, in a low-impact, boyant setting."

Good luck, and be well!

kbenner13

I've had AS for over 30 years. When I was younger, I experienced the same thing. If I ran then I couldn't walk for a few days, so I stopped running. After having AS for about 15 years, then things got better. I still don't run, but I've done a lot of treadmill, elliptical, and bike without any of those problems. I never had any luck trying to "fight through the pain", though I have built a very high tolerance to pain. I'm confident that I could run without the old problems like you describe when I get back into running shape. I've always just tried to do what the AS would let me do. It's been my experience that the AS went away, for the most part, after 15 years. I just have to live with the side effects and consequences like iritis and fused vertebrae in my neck. I hope this isn't too depressing for you.

PlayDoh1234

I have had patients that were successful in running with AS but they had to be pretty commited to icing afterwards and limiting the volume. It comes down to what about the running bothers your symptoms, more the impact, they type of motion, the inflammation afterwards etc. It can be a really nice addition to treatment as the increase in breathing helps maintain chest wall expansion, but there are a lot of factors. Repsond here or PM me if you like, we can try to work through it.

I've never tried icing afterwards.. maybe I'll try that. I'm mostly concerned that if it hurts so bad and for so long.. maybe I shouldn't do it. If I can manage the pain, is it okay to do? Or should I avoid simply because it causes the pain... then it must not be good for me?

PlayDoh1234

Your condition sounds very painful! I looked it up, and found this:

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

... all of which you probably already know, but if you don't there it is.

It also sounds like there are some good therapies that can help, and it highly recommends swimming, as"swimming involves all major muscle groups, in a low-impact, boyant setting."

Good luck, and be well!

Thanks for your support!

PlayDoh1234

I've had AS for over 30 years. When I was younger, I experienced the same thing. If I ran then I couldn't walk for a few days, so I stopped running. After having AS for about 15 years, then things got better. I still don't run, but I've done a lot of treadmill, elliptical, and bike without any of those problems. I never had any luck trying to "fight through the pain", though I have built a very high tolerance to pain. I'm confident that I could run without the old problems like you describe when I get back into running shape. I've always just tried to do what the AS would let me do. It's been my experience that the AS went away, for the most part, after 15 years. I just have to live with the side effects and consequences like iritis and fused vertebrae in my neck. I hope this isn't too depressing for you.

Interesting post! I was diagnosed in 2002 so I'm just coming up on 10 years. I give myself the Humira shot every other week. What do you do? I agree with you, I've never had much luck trying to fight through the pain either... it just doesn't seem possible some days. I'm surprised to here that your AS has went away - has it mostly just been in remission? It's not too depressing since it's not the first time I've heard it- xrays show fusion in my vertebrae already too- I'm 27 so I'm hoping it slows down fast. I can't tell by your name if you're a male or female.. but if it's not too personal and you are a female, did you ever have kids? My husband and I are thinking about it, but I'm very scared about the pain. PM if you're willing. I would love to hear about your experiences!

lauraniwa

I have had patients that were successful in running with AS but they had to be pretty commited to icing afterwards and limiting the volume. It comes down to what about the running bothers your symptoms, more the impact, they type of motion, the inflammation afterwards etc. It can be a really nice addition to treatment as the increase in breathing helps maintain chest wall expansion, but there are a lot of factors. Repsond here or PM me if you like, we can try to work through it.

I've never tried icing afterwards.. maybe I'll try that. I'm mostly concerned that if it hurts so bad and for so long.. maybe I shouldn't do it. If I can manage the pain, is it okay to do? Or should I avoid simply because it causes the pain... then it must not be good for me?

It's a bit of both, like the other gentleman was AS mentioned. You shouldn't be "fighting through the pain", that would indicate that the activity is probably not worth the trouble. But there are might be an activity you really enjoy and then that is worth exploring a way to do that and keep your discomfort to a minimum.

Water running can also be great. Very difficuly, no impact, plus the cold water can help with the soreness.

thebarkman10

I'm not sure if I will get many responses on this one.. but I figure it's worth a try. I've battled ankylosing spondylitis for many years. I've always wanted to run but I find it just way to painful. The pain comes after I have finished running and will last for days. Is there anyone out there with AS that can jog/run? If so, do you have any hints/tips? Is it something that I just need to work through and eventually the pain will go away? Thanks for any advice!!

I have AS and am trying to do any kind of exercise. Its really hard when I'm in constant pain! I am finally off the steroids with the introduction of Remicade infusions into my regimen. I too would love to run, but I can hardly walk as it is.

melindanew

I have spondylitis, but as a result of L3-S1 scoliosis which is impinging nerves. So not an autoimmune problem, but I would reckon the pain and exercise issues are quite similar.

I've had to give up running, despite icing and other treatments, the pain after was just too much to bear. I've had better luck on ellipticals and bikes IF the handlebars are set such to not trigger the area.

Good luck, I feel for you.

MyBodRocks

Hello, I also have AS. Mine doesn't seem as severe as some cases mentioned, but I too cannot run! It's soooo painful! I CAN however do the elliptical at the gym, which is an AWESOME workout and is very similar movement as running, without the impact.
I have also found that yoga and stretching is ESSENTIAL in my day to day activities...

thebarkman10

I am part of the Faces of AS, and its sometimes discouraging to see how others with AS are able to run. I have been told just to go very slowly with any workout. It seems to me, the only time I'm not in pain is when I'm in the water. I have heard of underwater treadmills at some gyms. Has anyone ever tried one?

PomegranatePriestess

I don't have it, but a friend does... he went low carb and his pain went from a 10 to a 2 in days. I'm not sure what your typical diet consists of (it's not public) but you might want to try eliminating bread/rice/potato/pasta from your diet for a week and see how your pain levels measure up.

My friend's pain has never returned to its original levels, when he would wake up and just lay in the fetal position for a half hour before he could even move to start the day...

Also, in terms of exercise, I absolutely love water aerobics. If you have a place near you that offers it, you might want to give it a try.

I wish you the best of luck.

GaleHawkins

PomegranatePriestess wrote: »

I don't have it, but a friend does... he went low carb and his pain went from a 10 to a 2 in days. I'm not sure what your typical diet consists of (it's not public) but you might want to try eliminating bread/rice/potato/pasta from your diet for a week and see how your pain levels measure up.

My friend's pain has never returned to its original levels, when he would wake up and just lay in the fetal position for a half hour before he could even move to start the day...

Also, in terms of exercise, I absolutely love water aerobics. If you have a place near you that offers it, you might want to give it a try.

I wish you the best of luck.

After 40+ years I have just learned about keto diet after I started to taking coconut oil for pain relief. I ran out of CO last Sat and some pain came back even in nutritional ketosis so I plan to keep doing both.

LoneWolfRunner

I have had AS since I was 14. When I was 24, the stuff totally munched my right hip and I had to get it replaced. When I was 44, I had to get it replaced again and also had to get my left one replaced. I spent years on indocin and other anti-inflammatories, but nothing really cut the pain. It never ended until I got my hips replaced. When I was 53, I was tired of thinking I couldn't run, so I said screw it and started running. I absolutely could not run in traditional running shoes, so I switched to minimalist, zero-drop shoes. I am now 56 and since I started running I have logged in over 4,000 miles and started running ultra trail races this summer. I don't think I could have done it with the AS active in my hips, but once I had that *kitten* cut out and got the replacements, it gave me my life back. I will say, however, that AS taught me a lot about pain and my ability to deal with it and that has made me a better runner. My doctors have fits about all the miles, but I can't sit around moldering to dust... I ain't going out like that..

GaleHawkins

Sounds similar to my AS progression and am 63. Most all of by back has used on its own with no head rotation and limited range of motion all over my body. The joint and muscle pain was running at 8+ often.

The doctors to me to research Enbrel and consider getting on it. It sounded great all the way until the cancer risk part. When doing the research I learned about coconut oil for pain as well as nutritional ketosis. Both are helping knock the pain down to 2+ most of the time and I am much stronger after 90 days.

I am still active but running is out of the picture but I do walk every evening even when it was an active day. It was good to read your encouraging story.

FatherOfAlex

I just created a group for AS. Surprised one didn't already exist. Feel free to join. I just figured it would be a good way to find and provide support. Search for "Ankylosing Spondylitis/Rheumatoid Arthritis" in groups.