Anyone suffer from Ankylosing Spondylitis?

cecee27

I know that there are other posts on her regarding this type of arthritis, but I'm looking for people who are active users of MFP.

If you are one who suffers from AS what do you do to loose weight or maintain?

Before my doctor's appointment yesterday I ran 3-5 days per week; did aerobics 5 days a week, etc. All of my physical fitness goals and dreams of running a marathon were crushed less than 24 hours ago.

Yes, I understand that being active is something that will help to reduce the inflamation; however I was strictly instructed not to do anything that "jars" my lower spine; ie running, speed-walking, hiking.

I want to stay as active as possible, but sitting on a stationary bicycle is about as boring as it gets!

Doc also told me that I need to loose 30 pounds; but seemed to have taken away all of my passions for doing so...I know, I need to be positive about this, but having all of this dropped on my yesterday has been a lot for me to take in.

britandryan6

Hi! I also have AS! I've had problems with the inflamation in my spine since 8th grade but I have been very fortunate not to have flare ups (with exception of slight one prior to me getting sick) for a long time. I understand what youre going through!

Chapps_LA

Hey, Cecee -

I'm also one of the AS lottery winners (and I've got it paired with psoriatic arthritis - so all of my joints are pretty much screwed). I was first diagnosed with arthritis at age 19, but it took over three decades and rapidly declining health to get the diagnosis of AS. As my doc said, I was in such top physical shape for all those years, I pretty much kept the worst of AS at bay.

First off, I completely understand the confusion about exercising. For those of us who consider ourselves to be athletes, AS is like a bomb going off in our lives. You get tons of conflicting info, or not enough info - and many docs really have no idea what to suggest about exercising other than 'it's good'. Of course it's good! It's good for everyone, not just people with AS or other autoimmune diseases.

The key is to know your own body. There are definitely some folks with AS who continue their running schedules, albeit modified, depending on how they (and their spines) feel. You really have to pay attention to how your body reacts to high impact exercise - and this can be affected by your weight and your medications (how well they're working).

I've never been a runner. I'm a cyclist and a swimmer and always have been. I actually had to give up the cycling for a couple of years as my AS got extremely severe. But I've finally gotten onto a TNF med that works - Cimzia - and it's brought me enough relief to get back into shape, and I can finally bend over on a cycle without insane amounts of pain. In the interim, I switched to *very* intense walking workouts, and brought my dogs along. I sometimes do six miles, including hills, in the mornings before work, alternating with the elliptical machine and weights at the gym. Yes, I had to reduce the weights a bit - I started concentrating on form and repetitions. You wouldn't know it to look at me - I'm in better shape than most 52 year olds ... and better than many men 20 years younger than me.

I also decided that the only thing that I seemed to have control over was what I was putting in my mouth. So I bought a fitbit (which I love), started keeping track of my walking and elliptical mileage and calorie burn, and started keeping track of what I was eating. Right off, I eliminated all of the bread and sweets that I was eating - those were my comfort foods, and I didn't need them. Since rich carbs and sugars tend to be stored as fat rather than converted to energy (according to the most recent medical studies), my immediate loss of eight pounds seemed reasonable. I then looked at what I was eating and reduced my meal portions a bit and started adding more veggies and proteins (loads of sushi - my fave). Huge surprise - in just two months, I shed 26 pounds. Most of that occurred in the first five weeks, and now it's very slow, with maybe 1 lb a week loss. The reduction in weight on my hips, knees and feet has been remarkable. I can now fly up hills and steps. And I just feel better. That's without going on a diet. I don't believe in diets - I just believe in eating healthy.

So take a deep breath, and let it out. Go look at the sunset and relax. You have plenty of options - you just have to be willing to be open to some change. Don't be overwhelmed with thoughts of loss, because you don't know yet what you'll lose - and gain. I encourage you to join AS sites like Spondylitis.org, where a lot of info is available. But realize that most people aren't very athletic, so those of us who are have to chart our own courses a bit. See how your body reacts to running, work on steady strengthening your muscles, work on your treatment regimen, and definitely pay attention to how healthy you're eating (or not). Take it a bit at a time. Feel free to contact me to discuss, if you like - I think you can send messages through this site. And do whatever it takes to chart a positive path. It's going to be hard, and there will probably be some really difficult times - but I went from the depths to some really great highs recently, so getting to the good side of things is very possible and likely. Hang in there!

socaljackie

I don't have as but I do have lower spine issues... I went from a gym rat to barely able to walk a block.. It's hard I have no other words than do any exercise you can.. And work the core ALOT.. I utilize my core for everything. I do a lot of core exercises that don't annoy my back or nerves.

Good luck

takehimaway

Chapps_LA

Very nice. People with AS need to see this more often - and believe in it.

thebarkman10

Very nice. People with AS need to see this more often - and believe in it.

Agreed!

farouknabela

As someone who has AS, I can barely walk some days so running/elliptical training is out of the question.

mkakids

My sister in law has AS and my 5 year old daughter just got dignosed with JRA, which is genetically linked to AS. My sister in law uses an elliptical machine most days, but when it is particularly painful, she swims. Its not her favorite activity, but it keeps her moving and its what she can *usually* handle it.

We have decided to install a pool for my oldest so that when she is in pain (the JRA is in her feet and ankles), she wilk still be able to stay active (at least part of the year!).

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.

kshama2001

@FatherOfAlex - I've hears you can't search for groups easily, so maybe add a link to your group?

barbecuesauce

FatherOfAlex wrote: »

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.

Group search function is broken. Might want to link to it.

kshama2001

@cecee27 - I have knee issues so can't be jarred either. I love to swim. I also walk (in the woods/not on concrete is best), garden, practice yoga, and when I have a gym membership: recumbent bike, row, and elliptical.

ETA - I googled Ankylosing spondylitis and think I knew a yoga teacher with this. He said yoga helped him quite a bit.

snickerscharlie

I have AS, am 60, and have lost 50 lbs just walking. I have recently added aqua jogging to the mix with the blessing of my doctor.

Angiefit4life

I also was diagnosed with AS. I have lost 40# mainly walking and swimming. And watching my calories!