Ankylosing spondylitis: experiences of a patient
Finally pain-free
Sabine has been suffering from ankylosing spondylitis for 38 years. Today, the 58-year-old has hardly any symptoms. Her recipe for success is regular treatments in the Gastein Healing Gallery and a mindful lifestyle. In this interview, she talks about her experiences.
You developed Bechterew's disease at a young age. How did the disease manifest itself, and was it very stressful?
"When you start experiencing severe pain in your early 20s, it's naturally very stressful. In my case, Bechterew's disease mainly manifested itself in severe pain in the lumbar spine and sacroiliac joint, i.e., in the lower back. In addition, my knees sometimes swelled up very badly. At that time, I was doing aerobics regularly, which made the symptoms much worse. My knees were repeatedly punctured, but sometimes they would fill up again immediately on the way back from the doctor. It was a very difficult situation. In your early 20s, you have other things on your mind and don't want to deal with illness and pain."
You didn't know right away that you had Bechterew's disease. How long did it take to get diagnosed?
"Almost 10 years! I was constantly visiting the orthopedist during the first few years. At some point, however, the symptoms became so severe that he sent me to a rheumatology clinic, where I was diagnosed with ankylosing spondylitis with peripheral joint involvement."
What was the recommended treatment and what was your experience with it?
"As with many other patients, I was recommended basic therapy with medication. At the time, I struggled greatly with whether to go ahead with it. I actually wanted to get pregnant at that point, but that would have been incompatible with the therapy. Due to the flare-ups with severe pain and because I was sometimes barely able to get out of bed, I finally decided to go ahead with the basic therapy. However, I then developed leukopenia, which caused my white blood cell count to drop significantly, so I didn't really want to continue taking the medication. After weighing up the risks and benefits, my doctor also recommended that I discontinue the therapy."
And what happened next?
I had already heard about the Gastein Healing Gallery when I was diagnosed, and then a year later I finally went to Bad Gastein. At the time, I had studied the research on the treatment intensively and simply wanted to try it out. It helped me so much that I went there for three years in a row.
How well exactly were you feeling after the treatment?
The improvement was extremely good. So good that I actually thought my ankylosing spondylitis had been cured. I had no pain and no more flare-ups. However, when I stopped going to the healing gallery for three years, the flare-ups returned. I have been going to the gallery every year since 2001.
But they also do a lot for themselves beyond that.
"That's right. I am a part-time yoga teacher and sound therapist, and I also use this a lot for myself. I do yoga, make sure I get plenty of relaxation, have taught myself good stress management, and try to think and feel positively. That certainly contributes to the fact that I am doing so well today. All of this—in combination with the healing gallery treatments—is very beneficial for me.
How are you doing with your ankylosing spondylitis today?
I'm doing very well. These severe flare-ups haven't been around for a long time. Sometimes I think about taking a break from the healing gallery. But I want to stay fit and I really enjoy going to Bad Gastein. That's why I reserve three weeks of my vacation for the treatment. Since I pay for it myself, I just see it as a gift to myself. Where would I be if I hadn't done the treatments? Definitely in a different place, because the regular therapies have ultimately stopped the disease. In short: I love my tunnel!"
Are you still in pain?
"I am almost symptom-free. After staying in the healing cave, I am usually pain-free for almost 10 months and only need to take pills very rarely. Every now and then, I experience slight pain in my lower back, hips, and knees. I notice this when I go hiking, for example, and have to be a little careful. But it's not really a big deal. I am very grateful that I can still move around like this at 58 years of age."
Is there anything you would like to pass on to others?
I have taken responsibility for myself and my illness, and I can only recommend that everyone do the same. It is also important to practice self-care. For example, I have abandoned the idea of performance and try to incorporate periods of rest into my life. That does me good. And of course: try out the healing gallery!
Thank you very much for talking to us about your experiences!
