Kickas.org Forums Ankylosing Spondylitis General Discussion Sporting ASKickers No Starch and Endurance Sports

Arrrgh....I'm in an airport and just typed a book-length response and was bumped off the network and lost it before I could send it. I'll try again later.

In a nutshell, for me it's always a balance between possible side effects and permanent joint damage. I use meds when pain gets in the way of my life and makes me inactive. for me inactivity creates the worst pain of all. If I can function 'normally' - bike, walk, wrestle with my kids - and tolerate the pain, I stay off meds. If pain leads to inactivity, lack of sleep (critical!), I reconsider.

I have more to say and I'll try again later.

Take care. Keep asking!

Thanks for your response! Hope your trip was well, wherever you went.

I've been able to run a little on the eleptical and lift weights in the past few weeks... it's nothing compared to where I used to be but I can feel myself getting a little better. I'll take whatever I can at this point!

I've been following this thread and am impressed with how much all of you are able to do in the midst of your AS.

I'm far from an endurance athlete, but I've always been quite active and fit. When I am able to, I bike, ski, lift weights, work out on the elliptical, etc. The only thing I find I can't tolerate is high-impact sports like running. The pounding throws my SI joint out of alignment and then I'm off all over my body.

I'm 47 years old, female and was diagnosed with Undifferentiated Spondyloarthropy last summer after a couple of years of obvious symptoms and about 12 years of insiduous onset.

My question is this: Since AS is primarily a disease of enthesopathy, do you find that it causes you to injure easily? In the last year, I have had injury after injury, all bilateral-tennis elbow, Achilles tendinitis, popliteus problems, wrist problems, peroneal tendinitis, pulled muscle in hips...

I believe that all of my entheses (where ligaments and tendons insert into bones) are weakened because of inflammation. Because of that, if I put any stress on these areas already weakened by inflammation, I've got another injury.

For instance, last fall I was biking back and forth to work, an easy, flat 3.5 miles each way, but I still managed to injure my popliteus which, four months later, is healing very, very slowly.

I used to be so active, but I've had to be terribly careful in the last year and I'm not as strong as I used to be because of it.

Any suggestions regarding diet, exercise, etc

Karen

I am seronegative and onset did not come on till about age 43.

I was on a extreme high protein diet for years before onset.

Unhappy meals

Another link....

More on red meat and inflammation

If you google some, you will find that arachidonic acid is an Omega 6 fatty acid - interesting huh????

I still eat red meat, but have cut back tremendously. I eat lots of fresh veges, everyday. I feel much better. Red meat, and other meats, now make a small part of my diet. Starch does not seem to bother me. But that does not mean that I discount the NSD for certain people. Especially those with early onset and those who are posiive for the HLAB27 gene. Different strokes for different folks.

When I took Magnesium Citrate, it had an effect beyond my wildest imagination. I felt better immediately. It's cheap, natural, with no side effects.

Yeah- I saw a nutritionist this week and she was telling me about omega-6. I don't really eat much meat, but she was telling me there's also a ton in corn. Her suggestion was I stay far away from corn.

Thanks for the links. I too have found magnesium (magnesium malate though) does wonders for my AS. I am also taking turmeric supplements at each meal, it's supposed to be a good natural anti-inflammatory. I've been able to be a ton more active this week... and even am thinking I will be able to start training for a marathon soon!

Dear Karen,

I am very new to this site (only a week or two now) and learning so much about AS (and maybe pre-AS or undifferentiated spondyloarthropathy). I started looking into this because i saw a show (mystery diagnosis on the Discovery Health Channel) and my husband kept saying, "that sounds like you" and i started saying, "you're right, that does sound like me" and then they diagnosed the woman with undifferentiated spondyloarthropathy. I haven't been to another rheumatologist yet, but i am setting up to do so...i've really been trying to learn fast about this disease....

i started having very strange musculoskelatal problems in 1998 at the age of 35. first it was a little bit of dq tendinitis that a hand orthopedist put in a hand brace and insisted i wear (it was the first and last time i was a "good patient" following the doctors orders instead of my instincts). well, that brace "destroyed" the tendon. over that month, it finally got to the point where if i flinched, it would shoot in pain, it was so inflamed and scarred. the doctor freaked out, he said something like "wow, never seen that before, there must be something really wrong with you" and he immediately sent me to a hand PT (she was amazing). at this point, i couldn't use that hand to type, brush my teeth, brush my hair, drive, get dressed, it was a mess. she had me doing contrast baths, weight training with bolts and washers (my husband used to make fun of me for that one...it was pretty funny), and sent me to another orthopedist for a cortisone shot. it took a long time, but as you can see, my hands must be pretty good to be able to do all of this typing. now i take a muscle relaxant at night, do lots of dishes (the hot water keeps it under control) and stay off the computer when i flare up.

i share this rather long story to show that yes, i injure my tendons and ligaments much too easily, they take much too long to "heal", they never really "heal" 100%, and i've been calling my problem, my -"itis" disease.

over the last 10 years, i've had similar stories with my SI, right hip / IT band, feet (especially the right), upper back (especially the left), right rotator cuff, outer left wrist (possibly disc or ligament), right index finger...and i've had more minor but similar stories for my knees, left bicep tendon, tummy muscle or tendon, left front upper thigh tendon.....a very minor event yields a fairly major tendon or ligament inflammation or tear and it takes a long time to heal up and then doesn't heal 100% if it was a major injury.....

i agree with your assessment of what causes this. even before i discovered that there was an arthritis that attacked and inflamed the entheses, i was telling the doctors and physical therapists that most of my pain was very very localized to where the tendons connected, when i needed cortisone shots in my dq and the outer wrist (9 years apart, separate injuries), the doctors and therapists were baffled as to how localized the pain was..."normal" people apparently would have had pain all the way up the tendon.

although the 2 rhuemies i've seen have been terrible at diagnoses (1 i don't have a clue, 1 fibro and rare collagen disorder (both of which many doctors have ruled out over the last 10 years as the only common data point is the enthesis pain for fibro and the tendonitises for the other)), the physiatrists (i've lived in 2 separate states) and some of the PTs have been amazing at putting me back together...if only for a little while.

after reading the site for a week or two, i can see that my symptoms are probably "normal" for an arthritis that attacks the entheses.

i'm not sure i'm the best for advice, since i keep injuring myself, and thus am obviously still trying to figure it all out, so i don't have advice for how to not injure yourself...the rheumy i went to recently gave me the advice, "be careful and don't injure yourself"...that's a good one! its not like the injuries are from sky diving or bungy jumping, they're from pouring spaghetti water into the kitchen sink or stretching in a yoga class or pulling a cart from the parking lot to my office because i've been advised to avoid carrying heavy loads long distances....these things only seem to happen in bunches which i associate with my hormonal cycles...which others probably would call flares.

the advice i can give to healing up:
-a physiatrist
-PT
-ice
-heat
-resting the injured body part, but not immobilizing it,
-immobilization alone causes some of my problems
-exercises if they don't make it worse, but stop if they do
-cortisone shots if it gets to the point of no return
ddly, when i started taking muscle relaxant for the trigger points / muscle spasms in my back, my chronic tendinitis in my wrist got manageable, before that it really wasn't manageable.

i'd also appreciate any advice on how to prevent these injuries in the 1st place and
i'd like to know if this easy tendon/ligament/muscle injury and difficult / slow healing is typical of others.

sue

JCD, Nordic skier and trailrunner

Who has had success? What level of pain were you in before and how much success have you had? Who has put a story in the success stories area of the NSD board?

I'm not an official endurance athlete. I ran one race. I'm an extreme sport junky. I love moving, wether it's running, long distance hiking, mountain biking, backcountry skiing.

Before AS, I used to go on 5 hour ride on the weekend, hike 8 hours uphill for a powder run, ride my bike 2 hours per day. I was pretty fit and I liked to be healthy.

I had extreme pain during my first major flare. I had a hard time standing, walking, opening jars. It wasn't fun. I've gone on NSD. I've reduced refined sugars, even lactose, limited alcohol, and cut out acidic foods (coffee for one). I've added higher protien, condroitin, vitamins, and fish oil. Things seemed to be getting better over the last year.

I haven't reached the heights I had hoped. I still seem to suffer from pain before I can increase my cardio signifigantly. It is really tricky. I haven't got to the point where I'm really worried about getting enough energy to complete a race or a long hike like I used to. I can ski groomed runs well and I'm using it to help build muscle and cardio. I can ride my bike....basic commuting. and I ride a motorcycle (no pain at all now on the sport bike, better than driving, builds some abs, forearm and grip strength. I swim a few time a week...but I often push myself into cramps.

I've hit a bit of a wall. I can't seem to push myself any further. I have been pushing too hard and recently pushed myself into a flare.

I would like to hear your stories. Especially those of success. It would be great to have some competition, some motivation, some advice.

My story is currently among other success stories here on the site. I would love to add more to it.

kris

Well I used to poke fun at people who did yoga all the time. However, since developing AS I've found it to be very valuable. For me it's not an "extreme" workout, but it really helps my breathing and muscle tension. I like eliptical work as well.

I'm still working on the success part. I was just diagnosed in June and was completely out of commission for about 6 months and starting to build back, a little, to what I used to be. My muscles are all gone, it's sick. I'm happy to be over 100 lbs at this point (always been a very small female but this is ridiculous).

I am training for a sprint triathlon for Aug though, YEAH!!

I am currently strict NSD and it's making a huge difference. I also have some juices that I drink daily, made with my juicer that seem to be cleaning me out. Kombucha and probiotics also seem to be helping me. I still eat a ton of veggies, just a bit limited as to what those can be.

As for activity, I'm walking, biking a little, swimming, doing yoga, trying tai chi, hiking, PT (weights), snowshoing when I get the chance (snow is an hour away). All of these are in very short stints but I do recognize the importance of starting from somewhere. Even when I was in a ton of really bad pain and very swollen I decided that every day I would walk. Sometimes I would make it one block and be crying the whole time from pain, but in my mind that was not giving into the beast. You do what you gotta do to stay sane.

It really helps me to deal with things one day at a time. I hope to be training for a marathon someday, and to be xc skiing back near the level I was at. I was supposed to go on a 6000 mile bike ride this summer, and we would be leaving soon. It is hard to think about those things but I just look to the past with happiness and try to strive for that in the future. I'm young (25) but done more athletically than most people I know that are 80. I'm glad I had those experiences and hold on to them knowing someday I will be able to again.

My biggest focus right now is on diet and cleaning my gut out. Also focusing on getting stronger and more active, but I understand that won't pan out until the food thing does.

Hope that helped.