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Back Problems Message Board

Back Problems Board Index

20 Year old with severe back pain for the past 3 years without diagnosis.

3 years ago, I was very healthy at 5'7" and 140lbs with a six pack and good muscle tone. I used to run 5 km a day. Over two months, I had the gradual onset of muscular back pain. It would get a lot worse overnight and I would barely sleep. The pain would go from my hips to the middle of my back. My muscles would be soooo tight in the morning. Things that would make it worse was flexing myspine aka arching back. The more convex, my spine (the more the lower vertebrae were compressed together, the more it would hurt). When I would drive, I would be hunched over like an old grandma to alleviate the pressure on my lower vertebrae. Any intense physical activity like running or playing any sports would also aggravate it. I went to a chiropractor and physiotherapist for 3 months, as well as daily swimming with no effect.

My family doctor was of no use but referred me to a orthopaedic surgeon that really cared about my situation because I was starting pre-med, in the same program, year, and dorm, as his daughter. He ordered an MRI and bone scan for me, which both showed up unremarkable.

At this point, I was excited about starting university so I but my back pain on the back burner for sometime. Unforuntately, the pain was so bad at night that I was only able to go to 5 days of classes the entire year due to not sleeping (can't focus on school), and the back pain during the day (can't sit in chairs). AS such, I was rendered to staying in my dorm room and laying in bed for 15 hours a day and playing games on my laptop. For someone who put academics first, and graduated with a 90+ average in the IB programme, not being able to be part of school was a devastating experience. I held a volunteering position at university that I was never able to fulfill because of my poor health. Without going to any classes and not handing in most of my work, I was able to pass all of my classes by basiscally durgging myself awake for a week so I could study for all of my courses.

The pain. Emotional and physical. Took such a toll on me that I lost 20lbs as I was only eating a meal a day. Mentally, I was extremely depressed. I questioned my spirituality, asking god, "Why me?". I never hurt anyone badly. Always donated and tried to be nice to everyone. I just felt life was unfair. At this point, even though I was undiagnosed, I was pretty sure I was depressed and had anxiety issues. One day, after spending 6 hours in bed not being able to sleep, while everyone else was partying, I started crying and called my parents.

The thing that affected my most mentally, was dealing with my parents. They believed my back pain wasn’t there or it wasn’t as bad as it was. After, all, every single test was unremarkable, and all treatments had failed to do anything. They were more concerned with my grades falling than they were with my back. I cried to my mother and her love for me forced her to come see me. Thinking we had exhausted all our options, she took me to the emergency room. The doctor there prescribed me Tylenol 3 s for 3 months. I was aware of the dangers of opioid addiction, so I only took a pill (don’t remember the strength) before I slept. It would remove the pain for the first 4 hours of my sleep, but would mess up the rest of the night, because without pain, I naturally slept on my stomach, which only served to aggravate my back even more once the painkillers wore off. I was on T3’s for the 3 months when my parents asked me to get off them. They were worried that I was addicted. In any case, it wasn’t even a temporary solution. For their peace of mind more than anything, I quit cold turkey. Luckily, I always had a high tolerance for medication, so I never experienced any withdrawal symptoms.

At this point, half the school year was over. I thought it would be best to leave school, and pick up where I left off next year, but the academic counselors were unsympathetic because I had yet to be clinically diagnosed. Not wanting the stigma of have to drop out of school, I powered on like a shell of the former person I was.

I eventually got a referral to a rheumatologist, who suspected I had Ankylosing Spondilitis . She booked be in for another MRI but also gave me a 1 month’s supply of Celebrex. I will never forget the first night I took that pill, because it was the first night in 1.5 years where I didn’t wake up many times thgoughout the night. I still wasn’t even close to being healthy, but the pain was reduced.

The symptoms that are bolded apply to me:

Pain and stiffness in lower back/buttocks, which has a gradual onset
Pain worse in the mornings and nights
• Onset for males mostly begins from ages 17-25
Pain improved by warm shower/light exercise (I would soak in hot tub every night and do stretches before bed)
Pain becomes chronic, persisting for at least 3 months. Over time, the pain can spread up to through the spine (started lower back and now is upper-middle back for me)
• Varying levels of fatigue may also result from the inflammation caused by AS. The body must expend energy to deal with the inflammation, thus causing fatigue.
• Also, mild to moderate anemia, which may also result from the inflammation, can contribute to an overall feeling of tiredness. (while I was not anemic, I was definitely fatigued.)
• Genetic marker HLAB27 is positive for 90% of AS patients (I was negative)
• Inflammatory markers in blood tests
• Inflammation of the eyes
• Dry and flaky skin
• Inflammatory “hot spots” show up on diagnostic imaging

In summary, I had EVERY SINGLE qualitatively measured symptom, but not a single quantitatively measured one.

This frustrated me so much because while I believed I had AS, my parents and doctors did not. The school year ended and I passed all my courses except for one. I expected to fail more but whatever… I couldn’t care less about school at this point. Living in a university dorm with a huge party school, I had the opportunity to try many drugs and lose myself in addiction or alcohol abuse. I always stayed strong though and never touched ANY drugs, and always controlled my drinking to no more than twice a month (I never even drank for the first 3 months to test my self-control)

With traditional western medicine unable to help me, I turned to my heritage, India. While my parents still didn’t believe it was as bad as it was (which I still resent), their love for me never wavered. My extended family was also very supportive and invited me to stay with them in India for a month to try naturopathic treatments. I was immediately skeptical. How could some old voodoo treatment do better than modern 21st century medical science? Turns out, naturopathy simple meant daily massages, minor shock therapy and IR therapy. Unbelievably, it helped. Let’s say before my India trip, my back pain was at 100%. After the trip, it was at 50%. I didn’t wake up crying, and I could sit in a chair without ruining my back for the night (although it was still painful).

NOW LETS FAST FORWARD TO 1.5 YEARS LATER as there were no major changes
My back pain is now about 35% of the original. Another huge issue I have is the anxiety I have from missing so much school and falling so far behind. My parents pressuring me to go back to school when I know I’m practically useless does nothing but cause more anxiety, but whatever, that is a story for another time.

Another rheumatologist put me on a drug called Remicade. The purpose of this drug is to eliminate the body’s ability to inflame. I’m on a 4 month trial, but after 3.5 months, it’s positive effect has been negligible, leading me to believe I don’t have Ankylosing Spondilitis
At this point, I’ve tried everything. I need help.

The emotional stress I’ve placed on my family constantly weighs upon me every day. I have a younger sister that I love very much, but I don’t deserve the love she gives me. What kind of older brother am I? I chastise my sister for not cleaning up her room or not doing homework or sleeping in, but here I am, sleeping for 12 hours a day (restlessly, but all my family sees is that I’m in bed, so when I complain and say I’m tired, they say “but you slept for 12 hours!!!!”) and keeping my room like a pig sty. My father has high blood pressure and is the sole provider for our family. We get into arguments all the time. My parents are always on a hair trigger because of me, which makes them extra harsh on my sister.

This is a plea to anyone who thinks they can help me. Please. I can’t go on like this. I haven’t had sound and painless sleep for 3 years. I have been in constant pain for 3 years. I want to be a productive member of society, not a burden on the taxpayers and more importantly, my family. I want an education.

Thank you

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