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: 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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Comment from: MJ, 65-74 Female (Patient) Published: January 08

I suffered pain for a very long time. It wasn't until my late 30's that I was diagnosed with AS (ankylosing spondylitis). Before that though, I was lucky to get 4 hours of sleep a night and would literally have to roll out of bed onto all fours and very slowly roll my spine up into a standing position. My doctor, when told of my symptoms, immediately ordered the blood test and, sure enough, AS was the culprit. I was treated with Naproxen and Tylenol and physiotherapy. this treatment worked, except for a few flare-ups in my back and massage and heat therapy helped. About 20 years ago all treatment that I was on just didn't seem to be working. When my eye became inflamed I didn't know what was happening. I thought I was going blind and the pain was terrible. Thankfully I was sent to an ophthalmologist in time. I was finally referred to a rheumatologist when I just couldn't function very well at all. X-rays were taken and showed some fusion but, being female it wasn't in my spine. Naproxen dosage was hiked up to the maximum with extra strength Tylenol. It helped some. Finally, I was put on Humira injections. I was also on prednisone for 2 years and now, today, I take Humira, methotrexate, Celebrex, Flexeril and Celexa. I have had cataract surgery in both eyes due to iritis flare ups, cortisone shots in my index finger knuckle and my heels. This disease can affect not only the spine. I have had steroid shots in the hip bursa and the shoulder areas; five at one time in my shoulder. The pain was so bad I couldn't stand or sit. I hope this helps someone understand that this disease isn't all in your mind.

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Comment from: Williams, 35-44 Female (Patient) Published: December 16

I've had AS (ankylosing spondylitis) for 4 months now. I first realized that I had this horrible disease when I started having severe back pain. My fingers were swollen and my legs would feel like they were twisting at night. If I didn't take any ibuprofen that day I would be in so much pain I could not walk. I finally went to see a specialist and found out that I had that gene. I was diagnosed with AS and put on Humira. Right now I still work full time.

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Comment from: LUCKY, 25-34 Male (Patient) Published: December 05

I am 26 and in a nursing home because advanced AS (ankylosing spondylitis) has killed my life. It started about when I was 18 / 19. I would get an occasional, once every three months, sharp pain in my lower back on the right side and be bed ridden for a couple of days or so, call out of school sick, and rest. A year later the pain started shooting down my legs and the pain kept happening more and more often so I finally went to a doctor. They took an x-ray and he diagnosed me with degenerative disk disease which was wrong. So he said I'd be fine and to just take ibuprofen. I ended up taking so much over the next years I would pass blood in my stools. A couple of more years and my neck would feel like a stiff neck every day I woke up, on top of everything else. Then fast forward a couple of more years and the pain was chronic in my neck, lower lumbar, shoulders, sacrum, groin, and legs. Two to three years ago I had to quit my job because of AS which I wasn't diagnosed with yet. So I got medical from the government because I was jobless and poor and at this point I could barely get out of bed. The first PCP (primary care physician) that saw me said, I think you have AS, just by looking at me; he took an MRI and voila, he was right! I had a neck fusion, facet edema, arthritis and my sacrum was fused. It turns out you can only detect AS with an MRI. So now it's at the point where it's ruined my life and I'm on a ton of medicines, I'm severely depressed and cry all of the time. It literally just hit me the last two years and I can barely walk, I use a walker and a wheel chair. Sometimes I'd rather be paralyzed or dead then be in the pain I'm in. I wouldn't wish it on my worst enemy. Had the first doctor taken an MRI and instead of saying you are young, you'd be fine and had investigated more I wouldn't have been this bad off, because the medicines could have helped, now it's too late and they barley help.

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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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