Patient Comments: Ankylosing Spondylitis - Symptoms

The symptoms of ankylosing spondylitis can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Published: June 09

I have been suffering from Ankylosing Spondylitis from last 2 years, so till now I have not got any proper treatment. I have a problem in my hip, when I am walking or standing for a longer period of time, then the pain starts and while sleeping at times, when I want to change my position from one direction to other direction, at that time I face many problems. And that pain is transferring from one part of the body to the other part of the body. So, I am in search of proper treatment. In Nepal, Doctors are telling me that if you will go to any part of the country, then also I will not get proper treatment. So, I am totally confused what decision I have to take.

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Published: June 09

At the age of 17 my knee just unexpectedly went out of place my family doctor did not know why...tendonitis he said...I had been tested for R.A. and came back negative...I suffered from extreme stiffness in my neck and back. My knees would get so swollen I couldn't walk my DR again thought I might have Osteo Arthritis but I was prescribed lots of medicines none helped at age of 22 I became pregnant I thought I was seriously going to die because I was not going to be able to have this child with out taking OC NSAID's but thanks to God I went through my whole pregnancy drug free and some mild pain that I was able to get through after 5 months after giving birth to my son I started getting the inflammation in the elbows and knees again and still I could not move my neck as much everyone would ask me "Do you have a crick in your neck “I felt like telling them to shove it. I was in so much pain....last year in October I noticed extreme swelling in my ankle as if I had sprained it my heels were hurting I went to my family doctor again he tested me for Gout and for Rheumatoid Arthritis all negative I think he finally gave up on me after all I had been experiencing this pain and inflammation for about 8 yrs he referred me to a rheumatologist one office visit 30 x-rays later and blood work determined I carried the gene for ankylosing spondylitis. My family has no history of any kind of arthritis either side. I am a female as you may know by now. I have lost all mobility in my neck. I cannot squat, run or walk for long periods of time. I do not wish this on anyone as soon as your in doubt go get it checked out.

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Published: June 04

My husband has Ankylosing Spondylitis and had two hip replacements at 18. His third came at 32 and now at 40 he will be getting his fourth. Now that most of his spine has fused together he is not in pain, but he has no mobility in his neck--He does not take any medication for his condition. We worry about our children as this tends to run in families. My words to anyone with this is to live life to the fullest. In a strange twist, I also have multiple sclerosis so our outlook for our future is questionable. Enjoy every moment now because progression is certain.

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Published: June 03

I am a 55 year old male who was diagnosed approx 10 years ago with the HBLA factor absent but all the classic symptoms present. I was a highly successful food service sales person with a six figure income and a national ranking with sales exceeding 11 million dollars a year. This disease has completely devastated my life robbing me of my ability to earn an above average income, depriving me of sleeping in a normal bed, ceasing sexual function with my wife and the eventual loss of my home. I am unable to complete any evenings out because of my inability to tolerate restaurant chairs. I have developed depression symptoms and panic disorder as well. I have alienated most of my friends because of my pride and the shame I am feeling, I am addicted to Actiq as well as Darvocet which makes me a serious risk behind the wheel of a car. I would not let anyone kid you about how insidious this disease is.

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Published: June 02

I can remember having lower back pain as early as age 18, but dismissed it as athletic injury. It wasn't until a near fatal brush with sarcoidosis at age 35 that I was diagnosed, after experiencing severe back pain during a six week hospitalization. I am now 42 and have responded well to treatment, taking naproxen, as well as Enbrel, and Actonel for accompanying osteopenia. I am very eager to learn about the possible connection between A.S and sarcoidosis, as they both fall under the auto-immune "umbrella".

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Published: May 29

The symptoms that led to my diagnosis included debilitating lower back pain and sciatica, which began when I was about 25. The diagnosis came almost 10 years later. However, long before the ankylosing spondylitis diagnosis, I occasionally suffered from Achilles tendonitis (beginning when I was about 12) and inflammation of the knees. Once I was diagnosed, it became apparent that my grandfather had probably suffered from AS (diagnosed as rheumatoid arthritis) because his "attacks" left him with a fused spine. I am female, by the way. My brother and my son have both been diagnosed, although their symptoms are relatively mild. My symptoms have subsided (I'm 49 now), and I take OTC NSAIDs only as needed. My advice? Yoga and swimming!

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Ankylosing Spondylitis - Treatments Question: What was the treatment for your ankylosing spondylitis?
Ankylosing Spondylitis - Experience Question: Please describe your experience with ankylosing spondylitis.
Ankylosing Spondylitis - Severity and Progression Question: Do you or a relative have ankylosing spondylitis? Please share its progression, along with treatments.
Ankylosing Spondylitis - Diagnosis Question: What tests led to a diagnosis of ankylosing spondylitis?

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