My name is Rebecca and I am 38 and I was diagnosed with Ankylosing Spondylitis in 2011. A few years before that, I had extreme fatigue and weakness (probably fatigue induced) and dizziness. I saw 2-3 different general practitioners who did blood work that didn’t reveal any abnormalities so one of them attributed my symptoms to depression and started me on an antidepressant. The 3rd GP sent me to a rheumatologist who did nothing to help me get answers except increase my antidepressant.
You see, I had a miscarriage in 2003 and lost a child in 2004 after developing severe preeclampsia/HELLP syndrome, so “depression” became the catch-all diagnosis for my symptoms. HELLP syndrome itself is a type of autoimmune response during pregnancy in which the body seems to be trying to reject the baby. It stands for “Hemolysis” (breakdown of red blood cells), “Elevated Liver” enzymes, and “Low Platelets.” The only cure is delivery of the baby and I was only at 24 weeks…he lived only 53 days in the NICU until he succumbed to infection/meningitis. Over time, I was able to heal emotionally and I have a strong faith and went on to have 2 more healthy children. I had a pretty positive outlook on life, so having my physical symptoms dismissed as depression all the time annoyed me.
Later, In 2009, I was in a car accident where I was hit from behind and got whiplash. I had extreme back pain down the length of my back and my muscles were in spasm for quite a long time. I went through months of chiropractic, massage therapy and physical therapy. What didn’t make sense was that my low back pain seemed to be worsening and I had excruciating tailbone pain whenever I went to sit down or stand up. It was terrible at work because I have a sedentary job as a graphic designer. I also had a lot of stiffness in my low back when I got up in the morning. Nothing was helping.
My chiropractor referred me to an orthopedic surgeon who was excellent because he took me seriously and LISTENED, did a careful exam AND ordered blood tests. He had a hunch after listening to my history of worsening low back pain— most especially tailbone pain, fatigue, etc. Unbeknownst to me, he ordered a test for HLA-B27 among other things. When it came up positive, he gave me a brief explanation that it was a potential marker for ankylosing spondylitis and explained that this was an autoimmune disease of the spine, and he referred me to a rheumatologist. The rheumatologist did more blood work, listened to my history, and had me go for X-rays. The x-rays revealed damage from AS near the hips/sacroiliac joint. Coincidentally, she also has AS and it was why she went into the field…she was diagnosed at 19 while in college and is actually the same age as me. It seemed like fate that I would be sent first to that particular orthopedic doctor and then to her. I am so grateful to for that because I finally had a name for it and could begin some kind of treatment.
After diagnosis, I was put on Enbrel to try to control the disease and diclofenac to help with the pain. Enbrel did help and eliminated my stiffness and tailbone pain. After taking it, it got to the point where I only had a little pain in the tailbone area if I bent left or right. I took it for about a year and a half, but I found it was hard to stay on it because I was told that if I was sick I shouldn’t take it and if someone else in my household was sick I should also stop taking it until they were better because it lowered my immunity. I have 2 small children, so I found that I had to take too many breaks from it. I also didn’t like that there were cancer risks with the med. So I have been off it for about a year and a half now and control pain/inflammation with Naproxen, motrin, or ibuprofen. Occasionally I use the diclofenac for pain if nothing else is working. I had been doing pretty well, but have had a couple bouts in the last year of pain/stiffness in my upper back/neck which make it difficult and painful to turn my head. I am going through one of these now…it has been a week. Because I had been doing well and disease seemed to be in a quiet state, I attributed these neck issues to sleeping in an odd position, but I think now that these are flares. I have also been having dizziness and now a constant hum/ring in my ear for 2 weeks now. I had dizziness/vertigo after I was diagnosed with AS and an ENT said that I could have some inflammation in my inner ear and that coupled with a slight deformity/lesion that was detected in one of my ears might be causing vertigo/dizziness. He had said my bouts with the dizziness could coincide with my disease. I recently read about autoimmune inner ear disease and AS was one of the diseases mentioned as being connected with it. I will see my ENT next week to have my ears re-examined. I read that Enbrel can be used as a treatment for AIED as well and I definitely had noticed I did not have dizziness/vertigo after a while when I took that med. Now the question will be what med can I take to help with this latest flare that does not have too many risks/side effects. I do not want to go back to the shots.
So that is where I am right now. I believe that my initial big flare of worsening tailbone pain came after a perfect storm of stress from my accident and in my previous marriage PLUS a genetic marker HLA-B27 PLUS a personal and family history of different autoimmune diseases (dad has Celiac). Despite my disease, I am a strong and faithful person and feel blessed that I am able to work for a company with generous medical coverage or I don’t know what I would have done all these years to get to a diagnosis and afford medication. I have a wonderful man who loves me and is so supportive and comforting when I do not feel well and I have 2 beautiful children who push me to stay active and I have wonderful friends and family who have also given me tremendous support over the years. I am thankful to God for all of it 🙂
New Jersey, United States of America