Ankylosing Spondylitis: Chronic Pain and Chronic Fatigue
I had a few symptoms before I even knew I had AS. All these things that led up to where I currently am, doctors not knowing for the longest time, and not enough testing being done (just baffles me).
Shifting weight and back problems
Looking back (approx. 9 years ago) I was having trouble with plantar fasciitis as I gained weight and I had back pain early in the morning. I figured if I lost the weight I gained it would help. I lost the weight and the symptoms went away.
I was very athletic growing up, played sports, and never had problems so I picked up running again. Now, I was running 8-10 miles each day, but then my knees started hurting (doc said I had meniscus tears) which were painful! I slowly gave up running and then gained weight from new meds my doc prescribed. I was back at having back pain, but it got worse.
It eventually lead to POTS and I was finally diagnosed August 2019 (9 years later). I'm in constant pain (my entire body), super tired, and I get terrible headaches. I want to lose weight because I want to see if it will help again, but I'm forever tired and just want to rest/sleep.
I just hope to overcome this and try something like Humira to see if it would help me. The most scary part of AS is coming down with POTS (caused by AS). It makes you dizzy, faint, gives you tachycardia, and causes nausea. My doc prescribed me some meds, so it has been helping in the meantime.
Wishing for a cure
I wish so badly for a cure. This disease has tested my faith several times. It had lead me to think horrible thoughts about wanting to die, it was that bad and writing about it makes me cry. Knowing that it got that bad several months ago is just so surreal.
Now, I find strength in my family, friends, and my faith. Those who are also suffering, you're not alone. I've been labeled a hypochondriac before I was diagnosed, or basically crazy because it was all in my head. Many people seem to not understand invisible disability and chronic diseases, which frustrates me. I could go on and on.... I wish everyone well, keep fighting.
Do you use the word disability to describe your AS?