Ankylosing spondylitis

When the house of cards comes falling DOWN

Well it’s been a little over a month since my last bad flareup, but today was different because menatally I broke down. Have you ever noticed you can only take so much before you totally loose it? I am normally pretty upbeat about my pain and all the crap that AS has put me through but then over time it builds like a timebomb and then you explode. I wouldn’t say that I’m the depressive sort, mind you I have my days, but today I cried so hard and for so long that I cried myself back to sleep. I work with patients who have strokes and the first thing they say to me is “why did this happen to me?” and my usual reply is “why not you, what makes you so special?” My own words could not console me today and just like my patients I ask “why me, what did I do to deserve this?” The real question I should be asking is “what are you supposed to learn from this experience?”

So during my perusal of the internet I found this webpage from the Spondylitis Association of America called Doctors Answer Questions About Ankylosing Spindylitis – Archive

Nice little webpage but I have some of my own personal opinions about the questions and their answers.

Question: There seem to be many myths surrounding Ankylosing spondylitis (AS) and its onset and diagnosis. Could you please talk about them?
Paul M. Peloso, MD, responds: Yes. Interestingly, we have this view that AS begins between 18 and 25, but this is not true. It occurs in kids, and also people in their 60s, as the Carbone study from the Mayo Clinic showed. We used to think it was rare in women, but this is also not true. Women have a longer delay in diagnosis compared to men for this reason. Neck involvment is very common after 15 or 20 years, but if the disease starts in the neck and not in the low back, that also delays the diagnosis, because we are not used to thinking it starts there. And many textbooks say it is not likely to cause disability, which is most definitely not true.

I like how Dr. Peloso states that it is not rare in women. For once it is in print!

Question: I recently was diagnosed with AS, and I would like to know what role my rheumatologist should have in managing it.
Muhammad Asim Khan, MD, Professor of Medicine, Case Western University School of Medicine, Cleveland, Ohio, responds: The rheumatologist’s primary role is to decide on the diagnosis and recommend the right kind of management for your disease. Many patients with AS may need to be seen by a rheumatologist at periodic follow-up appointments over an extended period of time, rather than being cared for by their primary care doctor.
Regular exercise is of fundamental importance in preventing or minimizing ankylosis (stiffness) and deformity. The people with AS most likely to follow a regular exercise program are those who visit a rheumatologist, believe that the exercise is a benefit, and are well motivated and educated about their disease. It is the doctor’s job to relieve pain and stiffness, and the patient’s job to perform regular exercises and to maintain a reasonably good posture.
Many people with AS will do very well if they follow the doctor’s advice on such things as medication dosages, how often to exercise, etc., but research shows that many patients do not follow what the doctor suggests.

Regular exercise is fundamental…. what a load of BS. If I can’t get up how am I to exercises. I walk every 30 minutes as work, I waterski in the summer and swim not to mention mow the yard, pull the weeds, sweep the floors daily and in the winter I cross country skii. I may not go to the gym and run a couple of miles because if I did I would be dead the next day. These doctors who preach exercise do not suffer the pain and agony that those with AS do. I’m just grateful I can do the things I do. So give me a break!

Question: What do you think about those AS diets that are so prominent on the Internet? Specifically, the London diet?
Walter Maksymowych, MD, responds: AS diets are sheer nonsense. It represents junk science. In clinical trials, 30% of people will respond to a placebo, even in one-year trials. Therefore, it doesn’t surprise me that some people swear by diets.

Now this question really made me think…. I am on a No Starch Diet because… I have ulcerative colitis with Klebsiella. I got this because I have AS. Klebsiella does not like starch so my gut really flares up when I eat starch, so do I eat foods with starch and live with gut pain or do without? I think the NSD diet does help and it is not sheer nonsense. Some people do get relief from pain when they cut out starches. In my case, not so much. But I continue on it because my gut is happier. So if you are thinking of trying the NSD you have to give it at least 3 months and monitor your pain daily with a scale of 1-10. On most days my pain is about a 3 when my back pain flares up I’m at about 50 (on starches)!

Question: Is massage good or bad? Does it make inflammation worse?
Mary Rosenberg, Physical Therapist, Los Angeles, CA, responds: In all my years of experience as a physical therapist, I have never known massage to worsen the symptoms of inflammation of a patient with AS. Deep tissue mobilization is nearly always welcomed by those with AS and is usually given in combination with passive stretches and ultrasound, heat or ice.

I’ve said it before. Massage is good! See past posts on massages.

Question: How important is physical exercise for a person with AS?
John D. Reveille, MD, responds: Physical therapy is extremely important for people with AS. To begin with, it involves self-empowerment, which is always a big step in the right direction. Several studies, including Dr. Michael Ward’s study at Stanford, show that exercise is effective in improving both pain and stiffness in persons with AS. In fact, health status greatly improved when people performed recreational exercise at least 30 minutes a day at least 5 days per week – especially back exercises. Supervised group physical therapy is more effective than individualized home exercise. What is also clear is that the improvement is not sustained over time unless the exercise program is continued.

Back to the exercises…. If you swim or do water aerobics it is much better for you and your muscles. Just thought I’d throw that in there.

So, you can read all the questions and responses for yourself. Most of the responses are pretty good and it’s nice to see a website that does address AS and the many problems that go along with this disease.

Now back to my question “what are you supposed to learn from this experience?” Well guess I’m supposed to learn that we all have our problems in life. Some of our experiences are worse and some are better than what others experience. I have to learn to compensate for my lack of mobility and try to do the best I can on good days and comfort myself on the bad days. I only have this one body and it will have to get me through. So for you who suffer with anything debilitating remember…. Life is Good!

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