My new diagnosis. My new reality.
I feel scared. I feel uncertain. I feel numb. I feel relief. I feel fear. I feel sadness. I feel grief. I feel hope.
Tears keep coming on and off no matter how hard I try to stop them.
For so many years now, I’ve known there was more to my medical story. More of a diagnosis that wasn’t found. My symptoms have perplexed many doctors and specialists, especially the level of pain I experience all day every day all over my body and in my stomach. I’ve traveled out of state to a very well known, reputable clinic, only to leave again without real answers. I was tested some and then they stopped looking. The answer was you have chronic pain, Fibromyalgia (“Fibro”), and IBS (irritable bowel syndrome). They recommended a month long chronic pain program to learn “to live” with my pain. I struggled through it. I knew I’d be coming home the same. I knew in my heart something else was there.
Every five or six years since I was about 22 years old, I’ve seen a rheumatologist. Many of my pain symptoms resembled other autoimmune diseases like Rheumatoid Arthritis (“RA”) or Lupus, but testing was always negative. I was continually told I had Fibro, but all of my symptoms just weren’t explained.
I didn’t give up trying to find answers. I tried a more holistic approach seeing functional and integrative medicine doctors. Many of those doctors weren’t able to help me either, but some were. I saw one in Texas two and a half years ago. I made two trips and spent several weeks there. He was helpful in determining many issues. However, my holistic medical path hasn’t been enough, and I still hit roadblocks on it.
After continuing to suffer excruciating pain that just didn’t make sense, I decided to see another rheumatologist while pregnant in January 2018. She ran the typical rheumatology bloodwork. All looked normal, but she mentioned I had a positive HLA-B27 gene. Healthy people can have this gene though, so it alone doesn’t mean anything. However, this was new information for me. She recommended a possible scope being done after pregnancy to look at my stomach again because a positive gene can make an inflammatory bowel disease more probable, but she never mentioned what else could go along with this gene.
After my own tireless research, I found a condition called Ankylosing Spondylitis. The more I read about it, the more it seemed to fit. I didn’t give up. I figured it out, and I was officially diagnosed with Ankylosing Spondylitis on September 20, 2018. The doctor said he’s 100% sure. I asked several times. I have the positive gene, HLA-B27 (which is usually positive for this diagnosis but not always), and a hip x-ray that shows progression of the disease, which is damage and inflammation in the sacroiliac (SI) joints. His first question before telling me my diagnosis was, “Have you ever seen a rheumatologist before?” He had surprise in his voice. He knew this had been missed by others.
So, what is Ankylosing Spondylitis (“AS”)?
- AS is a form of arthritis that mainly affects the spine, but it may also affect other joints. It can cause severe, chronic pain and discomfort. Some seem to consider it an autoimmune disease, and some consider it an autoinflammatory disease. An overproduction of systemic inflammation occurs with AS.
- It has been estimated that about 0.35% to 1.3% of the population in the U.S. have it.
- It can cause damage, inflammation, pain and stiffness in other joints too such as the shoulders, knees, hips, ribs, joints of the hands and feet, and jaw. The eyes and sometimes the heart and lungs can also be impacted.
- Damage found in the SI (sacroiliac) joints on X-ray or MRI confirm the diagnosis along with HLA-B27 and symptoms. The SI joints are at the base of the spine where the spine connects to the pelvis.
- AS can also cause bowel inflammation and possibly be linked with other conditions such as Ulcerative Colitis or Crohn’s.
- Progression may (not always) lead to spinal fusions, limited or restricted mobility, joint replacements, and more. Sometimes it can be debilitating.
- Symptoms, severity, and prognosis vary from person to person and typically appear in late adolescence or early adulthood such as during the ages of 17 to 45. It seems to be much more common in males than females.
- There is no cure.
A brief overview of my symptoms potentially related to AS:
- 1991-current: Constant stomach inflammation and pain started around age 11-12 that I still have today; we don’t know if my severe food allergies and intolerances are related.
- 1999-2000: Undiagnosed chronic low back pain that started in my low back; it was attributed to the Endometriosis that was found in 2000.
- 2001: Severe rib pain in college for about six months to eight months. It was misdiagnosed as an infection.
- 2002-2003: Low back pain that became unbearable. It was treated with injections, spinal blocks, and pain medications.
- 2005: A Spinal Cord Stimulator (“Stim”) was implanted for the low back pain. It is an internal transcutaneous electrical nerve stimulator (TENS) unit that is surgically implanted. A pocket was cut in my right buttock. The device was placed inside, and the wires placed in my back to lead to my spine. It was somewhat helpful with pain. An internal morphine pain pump was also discussed, but I quickly rejected that idea.
- 2007: My body began rejecting the Stim (it was visibly trying to come out of my body and dangerous if I fell), so it was surgically relocated higher. I stopped all pain medications due to dangerous side effects my body was having.
- 2010: Severe knee pain started and became chronic; it was undiagnosed.
- 2011: Severe buttock pain. Assumed from Stim, which was surgically removed in 2011 after my body continued to reject it.
- 2016-current: Severe chronic back pain and rib pain escalated at night, and I stopped being able to sleep more than several hours at a time. On and off eye inflammation. Increased sensitivity to light and trouble driving at night.
- 2017: I sold my car because my hip and buttock pain became so unbearable to just get in and out of it. I got an SUV.
- September 2017-May 2018: Second pregnancy and childbirth
- 2018: The pain is now in both sides of my ribs, my shoulders, entire back, hips, neck, knees, ankles and sometimes jaw. I still can’t sleep through the night with the pain; Positive Gene found for HLA-B27
- September 2018: Decreased appetite. Increasing pain. Abnormal electrocardiogram (EKG). Cardiologist ordered additional testing to be done later this month. Diagnosed with Post Traumatic Stress Disorder (“PTSD”) related to my health history. Ankylosis Spondylitis diagnosis confirmed.
So, that’s not even close to my full list of symptoms and medical history. I didn’t include my 12 surgeries and more; however, I feel like this points to some of the AS symptoms that went unrecognized for so long. I strongly believe this has been undiagnosed for about 18+ years. I will continue many of my holistic medical treatments and a restricted diet, but they haven’t been enough to combat this disease. I feel my only choice is to now try medication. The potential progression of the disease without medication is scary and unknown, and my quality of life is frankly very bad.
These are the typical treatments I’ve found for AS:
- NSAIDS – (Nonsteroidal anti-inflammatories) (which can wreak havoc on your gut)
- Specialized physical therapy (only after inflammation has greatly improved)
- Careful exercise as tolerated (right now I can barely walk around the block)
- Potentially certain diets (some improve with low starch, gluten free, paleo, ketogenic)
- Prescription medications called biologics.
My doctor’s recommended drug of choice is Humira, a biologic drug. It seems to be the #1 prescribed biologic for AS. Biologics work to suppress certain parts of the inflammation process. They suppress your immune response; sometimes they may suppress it too much. They can leave you more susceptible to illnesses, colds, flus, and rarely even more susceptible to cancer. The side effects can be scary. There are many kinds of biologics.
So, I have a new diagnosis and medication. Great, right? I wish it was that simple. Reality is we don’t know if I’ll tolerate the medication. I’m highly sensitive to all medications. We don’t know if it will work. We don’t know how long it could take to work. If it works, will it continue to work? Sometimes it just stops working. We don’t know how much of my pain it could help or how many of my symptoms it could help. It can’t reverse damage that’s already done.
It will be at least another 2 to 3 weeks before I can start the medicine. It is a process because of insurance. The medicine can take up to 3 months or longer to work once it is started. My doctor will reevaluate me at the three-month mark. So, I’m possibly another 4 months or more away from seeing any possible relief.
The last time I remember feeling strong and mostly healthy (even though I had issues then) was in high school, so over 20+ years ago. I can’t imagine what life could be like with less pain. I will proceed with cautious optimism. I have an opportunity to take a medication that could reduce my pain, possibly help me sleep again, and stop the progression of a very painful disease. There is still so much uncertainty about my future prognosis and treatment though. All I can do is hope, pray, and try and ask God to carry me through it.
How have I made it this far in my life with what I’ve been through? Truthfully, I don’t know. Many days I want to give up. Many days I ask God why, and I don’t think I can go on. Many days I cry and cry until I’m too tired to cry anymore. By the grace of God, I have gotten to today. God finally came through and answered my anxious, weary heart. I’ve now gotten a bigger answer. So, I’m wiping away my tears and my fears and begrudgingly stepping up to my next challenge. I’m trying to find some peace with at least knowing more. Understanding more. Part of the anxiety and depression has been living without more answers for over 18 years. I can’t really put in to words what that does to a person.
One of the hard things about my illnesses including this one is that they are invisible. I don’t look sick. Yes, it is blessing, but it can also be a curse. “But you look great” is one of the hardest things I hear when I feel like I’m dying on the inside. Somehow it seems to diminish what I’m going through. Instead it is nice to hear “I’m proud of you.”
My courage seems to have faded in the last few days after hearing the news and knowing there is more uncertainty to come, but I will find it again. I’ve lived what I’ve felt is an impossible life for as long as I can remember. The physical and emotional demands of motherhood with my conditions are extremely difficult to say the least, but being a mother is a huge gift that I don’t take for granted. There is a bigger purpose for me on this Earth beyond my pain and struggles. I’m determined to live out God’s plan for me, and he’s the only one that knows where my story goes next.
Recently, my daughter and I walked around the block in our neighborhood. I told her we had to turn back because of mommy’s knee. She asked me when it would feel better. I said that I didn’t know, but I was working hard to get it better. She said,”Well, mommy, when you go to heaven, it won’t hurt anymore.” Her words took my breath away and brought tears to my eyes, happy and sad ones. “Yes, honey, you are right.” I said. She smiled and kept walking ahead of me. One day I’ll be pain free whether that is on Earth or in heaven.
Stay tuned for more health updates. Thank you for your love and support.
If you’d like to read more about AS, see the links below.
https://www.spondylitis.org/Ankylosing-Spondylitis
https://www.everydayhealth.com/hs/ankylosing-spondylitis-treatment-management/surprising-symptoms/
Emily says
I am so happy for you to have a real comprehensive diagnosis even though there remains a lot of unknowns. I cannot imagine living all these years with more pain than i have experienced in just this one year, 2018. Praying for you friend. Please know that you God is going before you to prepare away. He has brought this diagnosis at a time when you can receive it and he can use it and you to serve his kingdom in ways you could never imagine without it. You gots this and i am immensely proud of you for not giving up when that would have been a hell of a lot easier. Much love dear friend.
Ansley says
Thank you so much! I’m so glad you are on the mend. Your accident broke my heart, and yes, this is all in God’s hands. Take care! Love to you too!
Jennifer Essary says
Thanks for sharing your story! Since my early 20’s I had really tight connective tissue. Muscles in my back would crunch when rubbed and my massage students used to ask if they were muscle or bone. Feeling my arms and legs they felt as if I were flexing all the time but at the same time I’m still really flexible. Fibro crossed my mind but I never pursued a diagnosis because the pain points they use and sensitive on 90% of the people I have ever given a massage to. All I have ever been told is to drink more water. Water wasn’t the solution. When I gave up wheat I felt my body begin to relax like layers of an onion. It helped but I was still tight.
My acupuncturist has always told me that I have too much heat. I didn’t know why or how because I didn’t eat all of the sugar that he thought I ate. Then I came across Whole 30 and a light went off: anti-inflammatory diet, too much heat…it just made sense. Once again I felt better, more relaxed, by day 4 I felt like my body was no longer fighting itself. After my Whole 30 I couldn’t add anything back and that’s when I figured out that my joints didn’t hurt from practicing massage therapy, but maybe it was rheumatoid.
That prompted me to go autoimmune paleo in 2015. Within 2 weeks the bottoms of my feet were no longer achy and crunchy. My back muscles began to soften. I’ve since come across an article by Weston J Price about nightshades and how they can cause calcification of soft tissues. I’ve changed my diet a lot but I attribute the removal of nightshades to softer muscles.
Recently I became intolerant to eggs and feeling frustrated that I wasn’t making progress I decided to try the carnivore diet. I know it sounds crazy. It goes against everything we have heard or been taught. My goal was to remove fiber and lectins and see what happened. Within 3 days my intestines had never felt so relaxed. Then my MIL came to town and I slowly came out of it by adding greens and other veg. The most interesting thing is that eggs no longer bother me. They used to give me joint pain for 3 days! I’m going to play with it a bit more and go carnivore for 2 weeks and see what happens. There’s a gal in the carnivore movement who has been sick her whole life. I forget what AI disease she has but she’s been carnivore for 2 decades and has been symptom free.
I’m a big believer that what you put in is what you get out so I’m curious to see what the future of food as medicine looks like. What I’ve learned lately is that we really know very little when it comes to human nutrition.
Wishing you the best in your journey to wellness. <3
Ansley says
Wow! Thanks for sharing. I’m so glad to hear you’ve found some relief. I’m curious to see where that diet leads you. It is definitely interesting!!