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?

Comment from: Tushar_612, 25-34 Male (Patient) Published: September 01

The first symptom of ankylosing spondylitis (AS) I experienced was 3 years ago. I have been differentially diagnosed with AS; awaiting blood work. But somehow I think I have all the symptoms for AS, whether I have HLA-B27 gene or not. Three years ago, I started noticing the pinch in my back. I could not lie flat on my back. The doctor said I had calcium deficiency. Two years ago, I moved to USA from India. Within 7 months I noticed the first major pain in my back and ribs. I also felt the pain in my heels and lower back. I think the change in environment activated my HLA-B27 gene or increased its impact. I remained on Norflex and Ansaid or NSAID for a month and Physical therapy. Last year I had a major flare up again. Never before have I experienced such pain; as if I had been stabbed. I have been living with pain since then. I was told that it is my posture, so have been working with my physical therapist, and last week I went to a chiropractor to get some relief. He saw my x-rays and told me I have AS. At first I was relieved that I can now cure myself, but AS does not have any cure. Not trying to have a negative outlook, but maybe that is what I should expect from myself, a less painful life, if not pain free, and be able to live an active lifestyle.

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Comment from: seema b., 35-44 Female (Patient) Published: July 31

I have had ankylosing spondylitis since last five years. My shoulder pains, my neck doesn't move, and there is a back pain I can't even sleep.

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Comment from: TLCRAZLITCOUNTRYGIRL, 35-44 Female (Patient) Published: January 06

I'm a 38 year old female who has dealt with pain my entire life but I remember the worst of it all starting around age 13 to 14. I was recently diagnosed with ankylosing spondylitis (AS) in August of 2014, this after months of extreme chronic pain in my right buttock, right leg, lower back and hips. My Family doctor was telling me I was only pill seeking and it was all in my head (I have sense gotten a new doctor). My course has been debilitating to say the very least. I was originally diagnosed with everything under the sun, chronic fatigue syndrome, juvenile rheumatoid arthritis (RA), fibromyalgia and a lot of other stuff because the doctors couldn't or didn't want to figure it out. I was diagnosed finally with multiple sclerosis (MS) in 2002 after a car accident when they found lesions on my brain. Today I fight through the pain and I still suffer. Besides AS, MS, RA and Steven Johnson's syndrome I also suffer from a list of other pleasurable things. I think that's everything, I have a hard time remembering, but this past May I was diagnosed with sacroiliitis showed in my hips and lower spine. This after being misdiagnosed and treated for osteomyelitis (a severe life threatening disease in your bone). The pain I feel is chronic and debilitating, it is a struggle just to function on a daily basis. Sleep is impossible as AS wakes me up in the middle of the night and at any given time one of my other health issues can decide to flare up and then I'm really done for. I walk with a cane and use a wheelchair to get around my house. I wish I had friends or family to aid me but I do not. I do not wish this on my worst enemy. My fatigue consumes me, but I'm not dead yet, I will win this fight or give it one hell of shot trying.

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Comment from: Mandeep, 35-44 Male (Patient) Published: September 12

I am suffering from ankylosing spondylitis for the last 10 years. I am a 36 years old male. It was diagnosed when I was 26 years old and doctor suggested me Hifenac SR. Initially it gave me relief but after sometime, I was having severe acidity and unexpected weight gain due to taking one tablet daily. Currently, I am suffering from severe pain in my chest and shoulders. My right ankle is having swelling for last 5 days. Due to this pain my daily activities are hampered and I am under stress. I am taking Nucoxia 90 mg/Feldex/Hifenac/Medrol, etc. Nothing is working. My TB Gold test is positive. I am taking one tablet Solonex daily on empty stomach for the last 10 days. Doctor has suggested me to take Enbrel Injection weekly.

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Comment from: MISSjrEWING, 25-34 Female (Patient) Published: April 01

I"m a female who has dealt with ankylosing spondylitis (AS) since 2005. My course has been debilitating to say the very least. I was originally diagnosed with lupus and doctors also thought I had multiple sclerosis (MS). Today I hold my head up high and run off a long laundry list of diagnoses: AS, Sjogren's, fibromyalgia, hiatal hernia, Barrett's esophagus, Collins syndrome, trigeminal neuralgia (suicide disease). I think that"s everything, I have a hard time remembering. My original diagnosis (that I"m not sure if they still carry) are: peripheral neuropathy and sacroiliitis. My rheumatic doctor did an x-ray of my hips and said that it wouldn"t likely turn into AS. He was wrong. I have since had a DEXA scan (I think that"s the name) and it showed in my hips and lower spine. I had that scan about 2 years ago. I now get swelling in the joint of my right foot, severe pain in the heel of my left foot and incredible pain in my right shoulder. The pain in my left buttocks feels like someone has their foot shoved up my backside 24/7. The pain in my ribs and the center of my chest is debilitating at best. As a single mother of 3 life is not easy for me. Sleep is impossible as AS wakes me up in the middle of the night and at any given time one of my other health issues can decide to flare up and then I"m really done for. I walk with a cane and use a wheelchair to get around my house. I wish I had friends or family to aid me but I do not. I do not wish this on my worst enemy. I live in fear of fusion and I try my hardest to stretch and exercise but when my fatigue consumes me I cannot.

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Ankylosing Spondylitis - Treatments Question: What was the treatment for your ankylosing spondylitis?
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Ankylosing Spondylitis - Diagnosis Question: What tests led to a diagnosis of ankylosing spondylitis?

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