And You Thought Nothing Good Came From Ankylosing Spondylitis

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Image courtesy of webmd.com.

For five years, I have been battling chronic pain. My issues began with a botched vasectomy and I seem to have picked up new aches along the way. I don’t know if all of these issues are connected or not, but does it really matter?

My damaged ilio-inguinal nerve has generally calmed down, but over time I have been enduring increasing pain in my joints. My lower back has been weak for years, but I never paid it any mind. As a matter of fact, I was diagnosed with mild osteoarthritis which led me to ignore my back pain. What can you do about osteoarthritis anyway? Take NSAIDs? I can’t because I’ve already had one ulcer. I don’t intend to get another.

Then came the gout diagnosis. My uric acid level was over 9. My understanding is you want it below 4.5. My ankles felt like crushed glass. It had to be the gout. Maybe my knees were gouty. I chalked all of my lower joint pain to gout. Allopurinol should solve that.

As I became more aware of the different pain sensations and from my internet self diagnoses (believe me, there were many), I learned that gout typically doesn’t affect the same joints on either side of the body. I had white hot stabbing pains in my flat feet, but my knees and ankles had more of a crushing, radiating pain. There was no relief from the allopurinol, either.

By now I was so flummoxed I finally decided to see a rheumatologist.

Probable diagnosis: ankylosing spondylitis. It has a nice ring to it. Plus, my first Humira self-injection a week and a half ago feels promising. At 38, I still feel like I have the body of a 70 year old, but the pain is much more bearable. It always gets worse at night, but I actually had zero pain in my knees this morning. I have also been able to get around with relative ease in the morning the last few days.

It’s normally a chore to get out of bed. Oftentimes, I wake up and watch television at least a half hour before I dare to put my feet on the floor. It’s as if I’m beset with rigor mortis. Then, I get up to brush my teeth and sit on the couch awhile. The rest of my day consists of a trip to the grocery store along with another errand or two, picking up my oldest daughter up after school, and if I’m feeling especially spry, cooking dinner. Leftovers have been common as I haven’t felt like cooking lately. If there aren’t leftovers, the kids can have a can of ravioli or a fried egg. Or even better–we can have yet another supper consisting of boiled eggs. Four or five are quite filling. And I love eggs. A lot.

It’ll be 2 1/2 more months before I see the rheumatologist for a follow up. I’m sure he will make the diagnosis official. I hope there is an ankylosing spondylitis ticker tape parade.

Why a parade? I finally have a diagnosis! I’m especially blessed because my autoimmune disease is treatable. It’s not some stage 7 chemical burn on my brain where there is no hope at all. (As a general rule, if your brain is chemically liquified and drains out of your ears, that is an unfavorable diagnosis).

I’m thrilled. My wife is relieved. My kids hope the treatment will keep the pain at bay so I won’t be so cranky. Ankylosing spondylitis is no chicken dinner, but I feel like a winner. I have a diagnosis and a treatment.

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15 thoughts on “And You Thought Nothing Good Came From Ankylosing Spondylitis”

  1. Hi Ted, I am about a year past my diagnosis of ankylosing spondylitis. I’ll be posting soon on my experience with Humira (it wasn’t positive) and what I am doing now to manage the pain and the mobility. Of course, I am not a doctor. I am an amateur powerlifter. But I am also a researcher and I know my body. Through a great deal of trial and error (and I’m sure I’ll always be learning more), I have found a way to live and move without restraint. Without drugs, and without pain relievers.

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    1. I’ll be interested to hear more. I don’t take pain meds, but it appears my illness was caught early.

      Did you have a lot of side effects with Humira? I’m intrigued that you are so physically active because a long day on my feet could mean stiffness for several days.

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      1. I had so many side effects with the Humira that I willingly dropped it. Being without it was better than being on it. I went from training 4-5 days a week to perhaps one day a week of very light activity, and it was getting worse. I couldn’t bear it anymore. I was gaining weight, and was having even more pain than when I went to see the doctor. Pain meds were also aggravating digestive issues, and I landed in the ER twice due to massive internal pain. I’ll post the rest of the story in an upcoming post (perhaps tonight).

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  2. This is a very interesting article. Like you, I’m also the recipient of a botched vasectomy. Lucky me, it appears as though both the illioinguinal and genitofemoral nerves were damaged. I’ve had random knee pain, finger joint pain, lower back, upper back, and neck pain. My ANA and c reactive protein tests have been normal so my doc won’t send me to a rheumatologist. However, after my optometrist diagnosed uveitis and was able to get tested for HLA B27. I’m awaiting those results now. Any advice going forward would be greatly appreciated.

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    1. I am HLA-B27 negative, but there are a small percentage of sufferers who do not carry the gene. In ten minutes of seeing my rheumatologist, he was able to discern that I do not have rheumatoid arthritis or lupus. (It’s amazing how many diseases you can convince yourself that you have by using Google), but the symptoms are consistent with ankylosing spondylitis.

      I had an MRI on my lower spine and sacroiliac joints and there was quite a lot of inflammation–and this was after I had been in Remicade for several months.

      Uveitis is a symptom of the disease as you know. If your doc won’t refer you, ask for imaging on your pelvic area. If he just won’t do anything, you may need to see a new doc to get the referral.

      It’s kind of a double edged sword–I hope that what is going on is not of a serious nature, but if it is I hope you can find some indications that will lead to a diagnosis.

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