My physiologist finally recommended that I visit a rheumatologist as he didn't feel like it was anything structural (degenerative disks, pinched nerves, etc.). Through some family connections I was able to get an appointment in a week. I didn't realize how unusual that was at the time. Ironically enough it might have been better to wait a month or so for the appointment my physiologist set up with a different rheumy initially. But I'll get to that later.
In short I had my appointment, was tested for HLA-B27 and was positive. This corresponded with my other symptoms of stiffness and pain. I was diagnosed with Ankylosing Spondylitis. For the first little while I couldn't even spell or say it right. Such a relief to know what was going on.
My rheumy assured me that while it had no cure, it was treatable with what they called NSAIDs. These were basically amplified versions of ibuprofen and the like. Sounded easy enough...
Friday, May 16, 2008
Thursday, May 15, 2008
My mystery illness...
While on a religious mission in South America I began to have some pain in my right hip. I should probably mention that prior to this I had exercised 2-3 hours/day and was employed in landscaping. So although as a missionary I was walking miles each day, it wasn't as though I was out of shape.
As the pain and discomfort continued to get worse I began doing some chiropractic treatment. The visits did seem to help some but their benefit was fleeting. A few days after my appointment I'd be back where I started.
After a few weeks my lower back started giving me trouble as well. From this point on everything just got worse. Since I had so much fatigue I was tested for amoebas and parasites and found I had contracted a couple. I was given some very strong antibiotics and subsequently tested clean. The problem was that I wasn't feeling any better. Chiropractic treatment ceased to do much of anything and after a few months I had exhausted the treatments their primitive healthcare could provide.
I returned to the U.S. a little over 3 months after my symptoms had begun. At this point I had been spending 17-18 hours each day in bed for a few weeks, oftentimes more. I anticipated some fairly quick answers now that I had quality physicians surrounding me. Unfortunately what I got were tests and lots of "well you don't have this" statements. I almost started wishing they'd say I had something like cancer just so I could know what was going on. I had extensive MRIs done that showed no structural problems. I wasn't despondent, but I was getting pretty frustrated. My idea of a good time was definitely not lying in bed all day...
As the pain and discomfort continued to get worse I began doing some chiropractic treatment. The visits did seem to help some but their benefit was fleeting. A few days after my appointment I'd be back where I started.
After a few weeks my lower back started giving me trouble as well. From this point on everything just got worse. Since I had so much fatigue I was tested for amoebas and parasites and found I had contracted a couple. I was given some very strong antibiotics and subsequently tested clean. The problem was that I wasn't feeling any better. Chiropractic treatment ceased to do much of anything and after a few months I had exhausted the treatments their primitive healthcare could provide.
I returned to the U.S. a little over 3 months after my symptoms had begun. At this point I had been spending 17-18 hours each day in bed for a few weeks, oftentimes more. I anticipated some fairly quick answers now that I had quality physicians surrounding me. Unfortunately what I got were tests and lots of "well you don't have this" statements. I almost started wishing they'd say I had something like cancer just so I could know what was going on. I had extensive MRIs done that showed no structural problems. I wasn't despondent, but I was getting pretty frustrated. My idea of a good time was definitely not lying in bed all day...
Wednesday, May 14, 2008
Ankylosing Spondylitis Exercise Regimes
Many people would like to start an exercise program but aren't sure where to start. For ankylosing spondylitis people may also be scared they'll cause a flareup or worsening in symptoms.
AS is tough enough on its own without making it worse. So because of a hesitancy to hurt themselves (and no one wants to hurt more than they have to) exercise is shelved as something that would be nice but can't be done.
It can also be difficult to use the energy for exercise if there doesn’t appear to be any positive results. You only have so much energy in a day. Why not enjoy yourself as much as you can.
All of this is unfortunate. These thoughts crossed my mind when I was diagnosed. How will I stay in shape? Will I be able to play tennis, soccer, football, windsurf, run, bike, ski, etc.?
Well I just got back from playing tennis so there's the answer to that question ;). But it certainly didn't happen overnight, and gaining the knowledge regarding what types of exercise were the most effective, how to stagger workouts and how to recover while still having a normal life were among some of the problems I faced. I'll begin chronicling my journey back to full health and strength in my upcoming posts.
AS is tough enough on its own without making it worse. So because of a hesitancy to hurt themselves (and no one wants to hurt more than they have to) exercise is shelved as something that would be nice but can't be done.
It can also be difficult to use the energy for exercise if there doesn’t appear to be any positive results. You only have so much energy in a day. Why not enjoy yourself as much as you can.
All of this is unfortunate. These thoughts crossed my mind when I was diagnosed. How will I stay in shape? Will I be able to play tennis, soccer, football, windsurf, run, bike, ski, etc.?
Well I just got back from playing tennis so there's the answer to that question ;). But it certainly didn't happen overnight, and gaining the knowledge regarding what types of exercise were the most effective, how to stagger workouts and how to recover while still having a normal life were among some of the problems I faced. I'll begin chronicling my journey back to full health and strength in my upcoming posts.
Tuesday, May 13, 2008
Ankylosing Spondylitis and Exercise
One of the more popular things to do when someone has a problem is to claim you have found the miracle answer. For AS that is often the new "ankylosing spondylitis breakthrough" and accompanying testimonials, or maybe it's glucosamine, or some other natural remedy.
I think that if something works for you, do it. Maybe it's lots of medication. Maybe it's none. Maybe it's radon baths, chiropractic care, acupuncture, or antibiotics. To me if it brings relief then it's worth it.
But here's the problem.
Regardless of what may or may not be effective for one person, I feel that consistent physical activity and stretching exercises help everyone. No exceptions.
Some people will ask "well what about if I can't run without it hurting for the next 4-5 days"?
Then don't run. Hit up pool exercises, swimming if feasible. Test out yoga and opt for alternate poses when difficulty arises. Perform Swiss ball exercises to the reasonable degree of difficulty. Get into resistant band workouts. Experiment with bodyweight exercises and biking. Maybe even elliptical work.
Now why isn't exercise touted as much by doctors? I feel the main reason is that they don't have as much knowledge about its benefits as they do medications and other western treatments. It's natural to strongly advocate what you understand if you feel it is of worth. It's just a shame most physicians don't have a better understanding of the potential of exercise.
I think that if something works for you, do it. Maybe it's lots of medication. Maybe it's none. Maybe it's radon baths, chiropractic care, acupuncture, or antibiotics. To me if it brings relief then it's worth it.
But here's the problem.
Regardless of what may or may not be effective for one person, I feel that consistent physical activity and stretching exercises help everyone. No exceptions.
Some people will ask "well what about if I can't run without it hurting for the next 4-5 days"?
Then don't run. Hit up pool exercises, swimming if feasible. Test out yoga and opt for alternate poses when difficulty arises. Perform Swiss ball exercises to the reasonable degree of difficulty. Get into resistant band workouts. Experiment with bodyweight exercises and biking. Maybe even elliptical work.
Now why isn't exercise touted as much by doctors? I feel the main reason is that they don't have as much knowledge about its benefits as they do medications and other western treatments. It's natural to strongly advocate what you understand if you feel it is of worth. It's just a shame most physicians don't have a better understanding of the potential of exercise.
Monday, May 12, 2008
Effective Ankylosing Spondylitis Treatment
To me one of the funniest things about Ankylosing Spondylitis is that most people don't want to know what it is. Even funnier is that those who do know what it is often make their description by pointing out what it isn't. Let me explain.
When I was initially dx'd the doctor gave me a very scientific-sounding explanation and an accompanying handout. It had some basic information on what it was and what to expect.
But more than anything it just told what it wasn't.
For example it did say it was an auto-immune disease. But that it wasn't Crohn's. It wasn't IBS (irritable bowel syndrome). It wasn't fatal, etc. Ironically enough it didn't have much info. on HLA-B27, past medical advice vs. current, or the main ankylosing spondylitis treatment options:
But it would be interesting to know what my reaction would have been had they told me at that time what has proven to be the best medication for me...
EXERCISE!
There are a lot of alternative treatments for ankylosing spondylitis, and yet usually exercise is only mentioned passively as a potential treatment option. Why is that? I have a few theories I'll be discussing in the upcoming days. Until then, make sure you ConquerAS.
When I was initially dx'd the doctor gave me a very scientific-sounding explanation and an accompanying handout. It had some basic information on what it was and what to expect.
But more than anything it just told what it wasn't.
For example it did say it was an auto-immune disease. But that it wasn't Crohn's. It wasn't IBS (irritable bowel syndrome). It wasn't fatal, etc. Ironically enough it didn't have much info. on HLA-B27, past medical advice vs. current, or the main ankylosing spondylitis treatment options:
- NSAIDs Non-Steroidal Anti-Inflammatories Naproxen, Diclofinac, etc.
- DMARDs Disease-Modifying Anti-Rheumatic Drugs Methotrexate, Sulfasalazine
- Biologics and TNF Blockers Drugs that inhibit the binding of a specific protein
- Enbrel, Humira, Remicade, and Golimumab
- Steroids Mainly Cortisone
But it would be interesting to know what my reaction would have been had they told me at that time what has proven to be the best medication for me...
EXERCISE!
There are a lot of alternative treatments for ankylosing spondylitis, and yet usually exercise is only mentioned passively as a potential treatment option. Why is that? I have a few theories I'll be discussing in the upcoming days. Until then, make sure you ConquerAS.
Saturday, May 10, 2008
Live to be 100
Interesting article pointed out to me today. Some things I found interesting:
http://www.msnbc.msn.com/id/23115268/
- Reference to a belief in god/religion making a difference
- Abstaining from alcohol and smoking
But what didnt't surprise me was what they found concerning exercise.
IT WORKS!
Leading an active life is the one faction of everyone's life that can be manipulated for benefits. As for the old adage "It's never to late to to get active?"
Looks like it has some empirical proof after all.
http://www.msnbc.msn.com/id/23115268/
Return of the Boozer
Finally! Boozer is back. After reading my frank commentary on his subpar play, he decided to start with the basics.
Rebounding and defense. Just like I talked about. Free throws?
Hey you can only expect so much of a guy who isn't an All-Star. Err....But back to the good stuff.
Boozer jumpstarted himself with some quality defense on Gasol, coming up with a couple deflections which led to steals and slowed the initial Lakers attack enough to keep the Jazz in the game. Not only that, he rebounded with ferocity, rarely allowing himself to be boxed out. After his early free-throw-line jumper it appeared Utah had unwrapped whatever had been covering his confidence.
An impressive 20-20 game was culminated by his play down the stretch. Instead of fading per usual he went to work. With L.A. keying on Williams every pick-and-roll, Boozer came up big hitting a tough fadeaway as the shot clock expired, another jumper, and a tough jump hook in the lane.
When Bryant badly missed a 3 he even did the unthinkable: boxed out!
Of course there were a couple reminders of why he's no Malone: his soft foul on Turiaf and missed free throws at the end. Still, it was encouraging to say the least. With Memo and Millsap both on their games, Utah's frontline is absolutely BEASTLY. Add in Williams' poised play at the point and the Jazz suddenly have a very good chance against any team.
Which Boozer will show up on Sunday? I don't know but I certainly hope it's something worthy of Mothers' Day.
And hits free throws too.
Rebounding and defense. Just like I talked about. Free throws?
Hey you can only expect so much of a guy who isn't an All-Star. Err....But back to the good stuff.
Boozer jumpstarted himself with some quality defense on Gasol, coming up with a couple deflections which led to steals and slowed the initial Lakers attack enough to keep the Jazz in the game. Not only that, he rebounded with ferocity, rarely allowing himself to be boxed out. After his early free-throw-line jumper it appeared Utah had unwrapped whatever had been covering his confidence.
An impressive 20-20 game was culminated by his play down the stretch. Instead of fading per usual he went to work. With L.A. keying on Williams every pick-and-roll, Boozer came up big hitting a tough fadeaway as the shot clock expired, another jumper, and a tough jump hook in the lane.
When Bryant badly missed a 3 he even did the unthinkable: boxed out!
Of course there were a couple reminders of why he's no Malone: his soft foul on Turiaf and missed free throws at the end. Still, it was encouraging to say the least. With Memo and Millsap both on their games, Utah's frontline is absolutely BEASTLY. Add in Williams' poised play at the point and the Jazz suddenly have a very good chance against any team.
Which Boozer will show up on Sunday? I don't know but I certainly hope it's something worthy of Mothers' Day.
And hits free throws too.
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