Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
We’d love your story as well! Send it to us at firstname.lastname@example.org
Tuesday, July 11, 2017
My name is Summer. I was diagnosed with AS in 2016 but that was far from the beginning of my journey. It all started 19 years ago, or as best I can figure it did. It always seemed that some issues explained away my concerns.
When I was 16 I was in a horrible car accident and was thrown across the vehicle. I checked out 100% other than minor scratches and bruising which was mostly on my face from impacting the gear shifter during the tumbling toss around the car. It was not very long after this when I began having chronic back pain. It seemed believable when doctors told me it was related to my accident so I never questioned it again until I was 18.
I became pregnant with my first child, and suddenly my body seemed to be struggling much worse. The pain increased and even in my first trimester my doctor claimed it was because I was just so little and pregnant. This was laughable to me, tiny people get pregnant all the time, they don't suffer from chronic back pain in the first trimester! Still, it was just ignored.
Pregnancy number two came and so did horrible car wreck number two. This time I was hit broadside by an 18 wheeler. The only damage during this accident was that labor was induced and I was only six months along. I was placed on bed rest. My pain levels increased daily; at this point it was hard to tell if it was from the contractions or the chronic back pain I had come to know so well. Every day for three months I laid in bed with pain levels at nine. On days I had to be out of the bed, sciatica was so intense my legs would give out on me. Doctors continued to blame the pregnancy, but not the car wreck this time around.
Pregnancy number three came and I was literally miserable for nine months with pain. The baby came and now I had three little ones and my marriage was falling apart because I no longer had a desire to be touched. I hurt all the time and he grew tired of it. We went our separate ways eventually.
At this point I began to have multiple abdominal issues. I had severe pain and hemorrhaging. They did exploratory surgery and discovered that I had developed scar tissue that had grown all over my abdomen. This led to two additional surgeries including removal of my gall bladder and an oblation on my uterus.
You think none of this really matters, but the more I have learned about AS the more it all feels connected to me. Especially when my story continues. I continue living with chronic pain that I never mentioned to anyone for several years.
I began having issues with my bladder, then suddenly it was my bowels. I never got a diagnosis on my bladder and that could simply be related to three kids, but I was diagnosed with IBS. I never was able to get control of it either, no matter what I did or tried. The next thing I noticed was that suddenly I started having difficulty breathing. Something had happened and I could now no longer climb a hill or run without getting really short of breath. You would think that's enough, right? No. I started having severe bouts of vertigo. By this point 10 years have passed and I still don't mention my chronic pain.
I refused to see doctors because when I did it was always passed off as depression or because I was small and couldn't handle my job. I started to believe I was crazy because not one soul in the medical field wanted to help me feel better.
I finally had a doctor willing to toss meds at me even though they had no clue why. They wanted to try every possible anti-depressant that was known to help with pain. The first caused suicidal thoughts, the second was stopped by my insurance shortly after starting it, the next was given to me as a sample and then the insurance refused to pay when the sample was up. All the while I was getting sicker and sicker and had a list of 12 medications due to them just masking side effects instead of trying to actually discover what needed to be treated. I went into Serotonin Syndrome. I lost all hope at this point.
I gave up. I stopped seeing the doctor again. Then one day the scariest thing happened. I didn't feel right. I sought emergency medical treatment and my heart rate was over 200. This led to new doctors and a cardiologist. Still no answers and a defeated girl. I thought this cycle would never end. I was now 29 years old. I gave up and a second marriage failed.
I went on with life ignoring all my aches and pains and the moments my heart seemed to want to run away without me. I started having feelings of weakness in my arms and got that numb tingling feeling rather often. It was enough of an issue that I struggled to hold a 32 ounce drink. I began having issues with my legs. Odd feelings of needing to move and just unexplainable discomfort. Almost always at night and then I began to have what I can only describe as tremors in my legs. Uncontrollable jerking reactions of my entire leg. Both legs, and it was intense; if you were next to me you'd get kicked pretty hard. Then the pain became so intense that if I was on the ground I could not get up without help.
I did some physical therapy and massage to get myself through this. Sleeping was only possible if I applied heat to my legs. Then suddenly sleep was just never possible. I reached a point of about 3 hours of sleep a week. Once again you'd think that's got to be enough, but no! My eyes, my eyes began to suffer. Iritis is such an awful thing to get. Round one, it was a two month process to get the inflammation down. Then it came back, another two months to get it down, and it was back the same week. Oh with a vengeance too, it hit both eyes. My eye doctor ordered labs and began asking my medical history. I told him of all my issues and he said, “well you tested for the HLA-B27 marker, I think there is a strong possibility you might have ankylosing spondylitis. Please see your GP and request they get you referred to a specialist immediately.”
It not only took two months for my eyes to improve but they actually had to go as far as to research what route to take because nothing was working this time around. My right eye never returned to normal and now does not dilate properly. The blood work came back and I had the HLA-B27 marker. My GP said that didn't mean anything but referred me to the specialist. The specialist instantly diagnosed me with AS. He said I already had signs of my spine taking damage as I'm already stooped in posture due to the loss of range of motion.
He started me on Naproxen first in hopes that we could calm things with minor treatments. Then my GP decided they wanted to jump on board and they said well, let's start Amitriptyline it will help with pain and with restless legs. I quickly developed severe acid reflux and they started Omeprazole for that. Then anxiety set in as well. So they added Hydroxyzine. Oh and don't forget Vitamin D because Omeprazole can cause Vitamin D deficiency. When I returned to my specialist, things had gotten worse. I showed more signs of loss of range of motion and was daily on a nine pain scale. He started Humira.
My diagnosis only came late last year in 2016. I began to know what normal felt like. I had days of zero pain. All symptoms under control and I was feeling amazing!! That is except the breathing, that was still a struggle and I was prescribed an inhaler. It does not help. I started noticing issues with my heart rate again and the tingling sensation is becoming very intense and affecting my full arms and legs. I also swell when I do anything at all. I bruise super easy now too. The doctor is concerned that it's a side effect of Humira so that was stopped and a referral to a neurologist was placed.
The pain is back, and it seems a million times worse just knowing I had a glimpse of what normal felt like. I once again await answers and sit wondering and scared. That however is why I have worked so hard to not let this rule my life. I started hiking about four years ago because I was determined nothing was going to hold me down. That gave me strength and courage to keep going and keep fighting. Now I'm looking for that same courage and strength. As hard as it is, I'm determined to live every day in a way that says #ASdoesntrulemylife.
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