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Ankylosing
Spondylitis: Fighting the Battle... and Winning
What is Ankylosing
Spondylitis?
"Ankylosing"
means the "abnormal adhesion of the bones of a joint." It is
equivalent to the bones fusing together. "Spondylitis" means an
"inflammation of the vertebrae." Together, Ankylosing
Spondylitis (AS for short) is an arthritic condition that attacks the
spine and can spread to other areas of the body, such as the hips,
shoulders, neck, and ribs. It usually begins as a dull pain in the lower
(lumbar) region of the back, eventually spreading upward to the thoracic
(chest) region. Basically, inflammation of the vertebrae occurs, followed
by the fusion of the vertebrae as calcification occurs at both sides of
the joints in an effort to heal. The condition is very painful and
chronic, and there is no known cure. Ninety percent of people who have AS
test positive for the antigen HLA B27 in a blood test, and 10-15% of
people who inherit the gene will develop AS. AS attacks 1.3 people per
1,000, is considered an uncommon condition, and attacks men many times
more often than women.
And,
yes, there's a book
Everyone
with AS should purchase and read this book, available from most online
bookstores, such as Amazon.com:
Ankylosing Spondylitis: The Facts, by Dr. Muhammad
Asim Khan. Interesting, here's a book about AS, written by a doctor with
AS! After you connect to Amazon.com, simply type in the keyword "ankylosing,"
select "Books," then click "Go."
The beginnings of AS
for me
I
first encountered continuous back pain in my late teens following two
painful accidents. While delivering packages to a store in Clarksville,
Georgia, I tried to jump over the boxes onto the pavement below, but
instead caught my feet and landed awkwardly on my butt. Then, a few months
later, I had a motorcycle accident in which I severely compressed the
vertebrae in my lower back above the sacroiliac. Honestly, I can still
hear the crunching of bones in my back when this happened!
The
pain never subsided and I thought this was normal given the pair of
accidents. In my 30s, the pain became more acute, often incapacitating me
for days at a time. I sought medical help and was always sent to physical
therapists, assuming the condition was muscle-related. In November 1993, a
physical therapist told me he was having no success with me whatsoever,
and suggested I may have AS. I was sent to a rheumatologist in Tucson, who
took a few looks at my x-rays, did the standard AS tests, and confirmed I
had AS.
My
associated conditions
AS
is associated with a severe eye infection called
"iritis," which requires an ophthalmologist's supervision. I had
many bouts with iritis since my first in 1976, about one every two years,
but fortunately my last bout was in 1989. This was very painful and living
in Tucson meant I couldn't even go outside because of all the bright
light.
Irritable
bowel is also a common condition for people with AS, and I've had
stomach problems ever since my late teens and early 20s. In high school, I
remember telling my parents that my stomach was always upset and
embarrassing me in my classes. Even today, with my AS in remission (see
below), I continue to have stomach problems. I don't do anything for it,
however, but when it becomes too painful, I will take over-the-counter
stomach meds, like Pepto-Bismol.
Costochondritis
is the inflammation around the breast bone, and is occasionally associated
with AS. This is my case, and probably the most painful of any condition
associated with AS (for me). My sternum is platy and even my collar bones
are offset. My ribs have very little flexibility and it hurts to take deep
breaths, even in my remission stage (see below).
What does having AS
mean?
During
the fusion and later stages, it means having to adjust to new ways of
doing things, having to learn how to deal with chronic pain, and having to
learn some discipline in taking care of oneself. For me, AS was more
painful in the morning, but gradually subsided in pain as my body moved
about and especially felt better after a hot shower. I found that I have
to change the way I do things. For example, getting out of bed used to be
a chore until I discovered that locking my foot in the baseboard of the
bed and rolling out was much easier and less painful. Tying my shoes is
nearly impossible. Sneezing is the most painful of all as my my ribs have
lost their capacity to expand, and my lung capacity has decreased by 20%.
In other words, you MUST learn to cope with the condition, and learn new
ways of doing things. I try to lead a normal life, although I certainly
can't do some things like I used to.
What I do for AS
I
don't do anything fancy to keep my condition in check. Keep your back
straight! Sleep on a semi-firm or firm bed, Sit upright! I've had people
ask me if I practice yoga because of my great posture. I've found that
sleeping on my stomach with my leg pulled up, aided by a body pillow,
offered the best sleep at night. For pain, I'll tell you right now that
I've been placed on all kinds of prescription medication regimes and,
honestly, all were only as effective as over-the-counter NSAIDS (like
Motrin). Today, whenever my back becomes painful, I simply take 2 or 3
200 mb Motrin. Physical therapy and massage therapy never helped in the long term
but did provide temporary relief during my most painful stages. Stretching
and exercise routines helped maintain flexibility, but I haven't kept up
with these as I should. Stretching the muscles in the back is the best
thing I've found, as well as chest expansion exercises. My exercise
consists of occasional trips where I hike and camp and carry heavy
backpacks, although I have trouble getting into my small tent!
Relief:
My AS is in Remission
Beginning in my early 40s, I noticed that the chronic pain was lessening
as my spine continued its progression to complete fusion. Today, I'm in
my early 50s, and I have some chronic pain in my back muscles and around
my spine, but nothing like I had in my 30s.
For the most part, I sleep comfortably, walk comfortably, jog comfortably, climb
stairs with no problem, can sit for long periods without pain, and except
for my strange posture, you would never believe I have AS today by looking
at me. Sneezing reminds me of my condition, and I now breathe mostly from
my diaphragm rather than my chest. I can't bend over worth a damn, but
I've made all the adjustments necessary so I can do the same things as
before, just a little differently!
I've
had many people ask me about the history of my condition, and I've told
them that, in my case, the AS appears to be in remission. Sure, my back is stiff, and my
chest is stiff, and I don't have the mobility I once had, and I always
have minor to moderate pain in my back, but I'm thankful
that I'm still here and able to do the things that I can do.
Links to some AS
sites
This
isn't meant to replace the more comprehensive links at other sites, but
here are a few of my favorites. Remember that AS is a form of arthritis,
and much information can be found from such agencies as the Spondylitis
Association of American and the Arthritis Foundation. All links were
active as of December 5, 2004.
- Spondylitis
Association of America
"The SAA provides information about ankylosing spondylitis,
Reiter's syndrome, psoriatic arthritis, and arthritis associated with
inflammatory bowel disease. Here you can read more about spondylitis,
as well as the benefits of membership in the SAA."
- National
Ankylosing Spondylitis Society
This UK-based
society was created by AS sufferers themselves. The web site can help
"answer the questions patients most frequently ask. It also
contains practical advice on things you can do to make the condition
more bearable. Your family, friends, work colleagues, and even your
GP, may also be interested to read it."
- KickAS.org
Managed by Tony Browneller and Pete Younghusband, this site is one of
the most elegant I've ever come across, regardless of its theme! The
home page provides information on AS, research on AS, a doctors and
nurses section, a section on AS treatment, and a section on holistic
treatment. Perhaps one of the most extensive web sites designed
exclusively for AS sufferers, like you and me! Check it out!
- Arthritis
Foundation
Information about brochures and pamphlets available, other support
groups and organizations in your area, news updates and fact sheets,
and information about arthritis research.
- AllRefer.com
A very informative site that has information on AS broken down into
the many categories, including the definition of AS, causes and risk
factors, symptoms and signs, diagnosis and tests, treatment,
expectations or prognosis, and many more!
- MedicineNet
Power Points about Ankylosing Spondylitis
Perhaps the most comprehensive source on AS I've found, written in a
non-technical language I can understand. Diagnosis, treatments,
prognosis, it's all here.
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