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Ironman
#227757 02/19/12 03:44 PM
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This is my first post on this website....

I was diagnosed with AS 3 years ago. I was looking back at workouts logged into my book and realized I was only logging about 10 miles a week of running because that's all I could tolerate, so I got some blood work and was referred to a rhuematologist. Anyway, after my diagnosis, I scaled back on all my workout activities-I've been an avid runner, biker, lifter, for years. I changed my diet to gluten free and that helped a lot to keep my flare-ups down. I noticed that my diet and stress levels from work affect my AS the most. If I can keep those things in check I feel pretty good. As time went on, I increased my workout activities, and decided to shoot for an ironman- I had done one a few years prior to my diagnosis and thought I might able to tolerate the training. So last summer I was training in a specific heart rate zone and not doing anything too hard. I also focused more on my bike and swim and limited my running to 3-4 days a week. Everything I did was pretty easy. I was really happy with how my body held up. I had some SI pain, hamstring and pirformis pain throughout most of the training but weekly visits to the chiro and getting Active release therapy was enough to keep me going. I finished my ironman last November under 13 hours, so that was exciting. So, I signed up for another one next November. but about 4 weeks after my race I started getting some pretty bad flar-eups, which has halted my running. I am a little concerned because It's been 3 months and I have not bounced back. I'm going to a PT next week and work stress has been getting me down too. Anyway, at this rate I am not sure I will be able to pull off another Ironman. I wonder if I over did it and am just in denial about my disease. I want to be able to exercise for the rest of my life. I'm just frustrated, I never thought AS would keep me down. Maybe I just need to re-evaluate the distance of an ironman and build back up slowly after I get this flare under control? I signed up for a marathon this spring and decided against it, since I can't hardly run. I guess mostly, i'm just trying to connect with other athletes who struggle. My friends don't know about my pain because I never talk about it with them because I don't want to sound weak and whiny... hints on training and suggestions about how to get rid of flare-ups would be helpful. I have found that lifting heavy makes me feel bad- but I can't seem to find the balance of lifting to keep my muscles strong and overdoing it. Peace out.

Re: Ironman
gpsrunner #227816 02/20/12 01:54 PM
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Just want to say that you are an inspiration to us all. As for your flare, since it as 4 weeks after your competition, it seems really very unlikely to me that it would have been caused by it (but I am not a doctor).

As for wanting to exercise for the rest of your life, well, with AS you *have* to exercise for the rest of your life smile As you have probably been told many times, exercise is one of the best treatments...

For getting the flare under control. Diet and exercise are not always enough, and whatever medication you are taking is clearly not doing its job right now. If you are on a TNF blocker, it may be time to switch to a different one. If you are not, if I were you I would start one - they are not always a miracle but many people get good remissions from them relatively rapidly. I do mostly weight training and have been able to do it much better since starting Enbrel.


Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.
Re: Ironman
seekonk #227829 02/20/12 06:05 PM
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gpsrunner- thank you so much for posting as you are truly an inspiration. My 16 yr. old son was diagnosed at age 11, and at first had to curtail his soccer activities. Once he was put on a TNF blocker, he was able to return full force to soccer, and then started running cross country and track in high school. While he doesn't dwell on his AS, I know that deep down, he worries that there may come a time when he won't be able to do it all. It is great for him to read about adults with AS who are still extremely active.


So sorry you are having this flare-up!! YOu don't say if you are on any meds, but if you are, maybe it is time to switch them up. I know with the TNF blockers, my son has already had to change once as Enbrel became less effective. He has now been on Humira for several years, and is thinking about switching to Simponi. He is finding he is having a hard time loosening up and is not nearly as flexible as he was. This seems to be the norm for a lot of people. While the TNF meds have been a lifesaver, they seem to lose their effectiveness after a while, at least in my son's case. Maybe you could review your meds with your rheumy and talk about possible changes.

My son also spends about 20 min. when he gets up in the morning and another 20 min. before bed stretching. He has found that however short he is on time, this is a must for him. The more he stretches and keeps his flexibility, the better he feels. I know it must be important, because this is a high school kid who leaves for school at 6:45, and still makes a point to get up early enough to stretch. He says that if he doesn't get that morning stretch in, he suffers all day long. He also just signed up for a tai chi class as he read about the benefits of tai chi for arthritis sufferers. I am anxious to see how it helps.

Keep us posted on your progress for the Iron Man. I hope you find the solution to your flareup!!!

Re: Ironman
Ericsmom #227831 02/20/12 06:44 PM
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Ericsmon, your son is an admirable young man. Not many kids have it in them to be that proactive.


Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.
Re: Ironman
seekonk #227866 02/20/12 10:50 PM
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gpsrunner, I'm a fairly new triathlete. I've had symptoms of spondyloarthritis for a little over 3 years, but I have only sought treatment during this last flare. I've been flaring for 3-4 months now, but before my flare, I was talked into doing my first ironman this summer. I am completely terrified by the running, because I can only jog for a few miles before SI pain is too bad, and I only run 1-2 times per week. But I've been focusing on the swim and bike. Swimming has helped me a lot! If I stay away from fly or anything with dolphin kick, I do ok. Dolphin kick really irritates my SI, and it usually ends my swim.

I've only trained for shorter races, but I know how you're feeling. It's really difficult to get out there when you're hurting. And some days, it's perfectly ok to rest if you need to. Work hard when you feel good, go easy or rest when you don't. Come here for support -- we're all rooting for you!


Amy
28 y/o HLA-B27 neg
Dx: AS/SpA, cardiac arrythmia, Hashimoto's
Currently taking: remicade, flexeril or nucynta ER occasionally
Re: Ironman
AMS #228448 02/29/12 03:21 AM
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Thank you all for the responses, what a great surprise!
I am taking diflocenac (anti-inflammatory) but just today my lady put me on a new one, can't think of the name right now; It's so funny that ya all suggested it, great advice! I also love my new PT, she gets me and that's good, I am already starting to feel more hopeful and optimistic!
Ericsmom, your son is so inspiring, really and truly, his determination brought tears to my eyes! Ironman distance and half ironman distance is at a much slower speed than cross country racing, tell him from me that there is always an activity he will be able to do even if he can't run hard and fast in the future. Thank you for the tip on stretching- I need to be better about that!
Amy, you can do it! I hope you can get your flare under control soon. What race did you sign up for? I will be rooting for you too!
For me the key is to not do anything too hard, that will set you back. Let me know if you want any tips. I would ride before pain and took a very long time to build up and also ride for time and stay in a slow heart rate zone. If I hammered like a dummy, I would regret it and have to take a few days off. If the group was faster, I would stay in the draft. When running, I mostly trained on dirt and I went for time, not miles. I also built up slowly and only ran 3 days a week. In an ironman you really don't run fast anyway, so my run miles (flat) were never faster than 10 min pace, that helped a lot. Stay away from interval work and tempo runs, seriously! Please stay in touch about your training and I'd love to give you tips. The pool is great too! Swim and bike as much as you can and when you get to the run you will still have a lot left in the tank!
Thanks again for the posts!

Last edited by gpsrunner; 02/29/12 03:25 AM.
Re: Ironman
gpsrunner #228734 03/03/12 12:33 AM
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hey gpsrunner - congrats on a sub13 IM(FL?). I'm signed up for IMFL this coming November - it will be my 2nd IM and hopefully I've learned a bunch from my first to do better.

I'm sure all are different - I was DX'd about 1 year ago - I've been a marathon maniac (not officially - there is a club with that name but I just barely don't qualify but I'm definately MM material) since about 2007. AS knocked me out of running for 2009 - although I didn't know what it was at the time - I got a Stress Fracture in the Sacrum from a combination of the AS inflamation plus lots of running stress. I managed to get back to good running form in 2010 after the year off and even PR'd again at the marathon but then had that now familiar SI pain and got it checked out again and got the AS DX last February.

Since then I've been on Meloxicam - 15 mg/d. Initially I tried lower dosages and got away with it for a while but as the SI joint pains crept in I'd be forced to back off and went through several cycles of cutting the meds too far - can't run at all because of the SI pain - increase the meds and a few days later I'm back to normal again. Now I've resigned to sticking with 15 mg/d. I've got morning pain in one of my feet that goes away after 10-15 minutes and I have occasional SI joint pains - occasionally it knocks me from running for a couple days. Seems like a light switch for me - when no pains I can do anything - when pains set in I can do anything except run - biking/swimming never seem impacted - in fact biking sometimes seems to magically make the SI joints go away completely - kinda wierd sometimes.

Anyway - since DX I've done IMTX (sub12), PR'd in the 5k and got pretty close to PR'ing in the Marathon in January and also run two 50 mile races - one of them 4 weeks ago and just 3 weeks after that Marathon in January (I'm still kinda recovering from that combo - not at all AS related - just plain old residual fatigue).

I don't know how long I can sustain this - none of what I do "seems" to make the AS worse - in fact it seems to me it keeps it at bay more so than makes it worse but it could be I'm looking through rosy glasses. Before AS I had a few athletic things I'd like to get to someday - now I've kinda accelerated the whole list with a certain desperation to try to get it all done before possibly not being able should AS progress. I want no regrets I didn't give it all I had while I could. I'm going to take my best shot at a Kona slot at IMFL (I really hate swimming so that's a major challenge) - I've also got a 100 mile race on my schedule for next year - maybe even two if I get lucky in a lottery. I'll keep these Maniac ways going as long as I can - because frankly I just absolutely love it....

Re: Ironman
gpsrunner #228885 03/05/12 10:13 PM
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I did 2 Lake Placid ironman triathlons in 1999 and 2000. At the time I was in remission on Arava. I still do smaller races and triathlons, but the last 3 years I have not been able to. I am back felling pretty good again, and I hope to do some races this summer.
I am glad to see there is another crazy person besides me!
Ken mc

Re: Ironman
ken #231832 04/22/12 12:21 AM
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Hey All,

I was dx'd in 2007. I had run one marathon before being dx'd and since have run 6 more. I did get knocked out of running again from running in winter 2008 because of fluid build up around my heart. I'm planning on doing many Triathlons, a half ironman, a goruck challenge and the chicago marathon.

I can say from experience that exercise is one of the best medicines for my AS. Running, biking, swimming and lifting weights all make me feel better. A good weight lifting schedule I think is essential to staying healthy, especially for us with AS. Lifting doesn't have to been anything crazy. I do twice a week and hit, legs, core, arms, back, calves do various things. I'm not trying to gain muscle when lifting, just trying to stay healthy and keep the ligaments strong, two sets of 12. I feel worse on three days of not working out then with three days of working out hard. Working out not only helps with the AS but with a depressed or crabby mood!

I know I won't be able to run marathons for ever, so I'm doing as much as I can now. I plan to do a Ironman next summer, hope to re-qualify for Boston marathon, hopefully qualify for Kona triathlon in the next couple years and then look to do some ultra marathons.

A good diet definitely helps. Home cooked meals, not high in fat, as little of processed foods as possible.

Above all, keep moving, don't put limits on yourself because of your AS, we can all do more than we ever have dreamt of.... and remember, "your feet are only hurting because your kicking so much ass"

Re: Ironman
eder0009 #232622 05/03/12 04:48 PM
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hey gpsrunner - congrats on a sub13 IM!

I've done IMNZ three times prior to get AS

Yesterday got diagnosed with AS after struggling with "whatever the hell this is" for years and years.

Hopefully now I know what it is I can get a handle on it and get back to running?? And maybe even another Ironman!


btw, what is dx'd?


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