AS Doesn’t Rule My Life!
Let me introduce myself
My name is Summer, and I have been diagnosed with AS. I have suffered from chronic pain since I was 16, I chalked it up to a car accident and went on with life for a long time. Then I became pregnant with my first child and suddenly my world began to change. At 18 I became severely anemic and suffered from severe chronic pain, now the cause was pregnancy, or so I thought and would be told for the next 6 years as I had all 3 of my children. Life was busy and I honestly didn’t think chronic pain was worth me seeking medical attention for, so I just did like many women do, suck it up.
I continued my life for the next several years just ignoring the increasing level of pain. When I was 29 I finally reached a point when I knew medical intervention was needed and began a frustrating journey of getting no answers once again. Doctors placed me on multiple medications just hoping to mask symptoms each one causing new symptoms of their own. I was switched from one antidepressant to another and eventually went into Serotonin Syndrome which can be a major medical emergency. After a rather scary event that led to an Ambulance ride by an ALS team to the ER having my heart monitored for a month and still only getting sicker, I finally gave up again. I asked to stop all meds and stopped going to the Doctor. What was the point, if I was only getting worse instead of better.
Once again my life changed in 2014, I began having some issues with my eyes. Iritis, little did I know this was about to be an unanswered prayer. After the third flare of Iritis, my eye Doctor started questioning my health. I answered all his questions and he ordered labs. This led to my diagnosis of Ankylosing Spondylitis and finally a road to treatment. This is just a small and very reduced version of my health issues. You are about to learn much more about this disease, that is if I still have your attention.
What is AS
AS or Ankylosing Spondylitis ( An-key-low-sing Spon-di-lie-tis ) is an arthritic disease that is also known as an auto inflammatory but auto immune mimicking disease. It can take years to diagnose due to the the way it presents. This typically hits between the ages of 17 and 45 although, there is no exclusion on age onset. It presents differently in Men and Women, at times with different onset symptoms for each gender. This is also a chronic pain disease, there is no known cause and no cure. It is considered a Spondyloarthritis disease, and degenerative, progressive disease. It has been linked to genetics, a gene referred to as HLA-B27 is passed down. All carriers of this gene will not end up with the disease and not all individuals with a diagnosis will have the gene. It is more likely that you will have AS if another family member also has it. ( I currently do not know of any family members having an actual diagnosis, that could change though. HLA-B27 is also the exact thing that led me to finally having answers.)
Ankylosing Spondylitis can be described as chronic pain that worsens with less activity. Stiffness in the morning and at night is often times another common problem for those suffering from AS. At times the pain and stiffness can be so severe that it physically prevents you from moving a certain way or getting out of bed at all. Many times I struggle to stand up straight when I have bad flares. Flares are what they refer to as episodes that are worse then other times. I have pain every single day, So some days were good days, and some were bad.
What are symptoms of AS
Inflammation is a primary symptom, the inflammation causes chronic pain that generally starts in the lower back. The pain can then later spread to the hips, pelvis, full spine, neck, shoulders, elbows, wrists, hands, knees, ankles, and feet. I have pain from inflammation in all the above locations. When I began seeking treatment at 29 the pain was so bad that I could not get up if I was in the floor without assistance.
Iritis, This is an inflammation of the eye that presents with severe pain, redness of the eye, blurred vision and light sensitivity. Iritis is very rare in individuals that do not have some form of arthritis or auto immune disease. Iritis can also be directly connected to AS. My first flare they passed it off as just rare luck. The second time they started thinking it was odd, then when it immediately came back and in both eyes, which is even more rare, even in patients with AS or any other disease directly connected to it they knew it was time to do labs. By this point my right eye had been damaged enough that it no longer dilates properly because my pupil is stuck to the lens of my eye. This now leaves me at a greater risk of developing Glaucoma.
Psoriasis, redness or rash on the skin. This symptom has avoided me, however I have severe dry skin that can be connected to the skin issues that it can cause. This is called Eczema.
Digestive issues. Inflammation of the intestines, leading to many diseases such as Crohn’s or Ulcerative Colitis. I have IBS Irritable Bowl Syndrome.
Dactylitis is known as sausage fingers. It is the direct inflammation of the tendons in fingers and toes.
Enthesitis is inflammation in the site that connects the tendons and ligaments to bone. This is what can cause the fusion of the spine and other areas. It forms a boney mass restricting movement in that area. This leads to issues with reduced range of motion. You begin to have issues with range of motion prior to any fusion due to the damage constant inflammation causes to the joints, tendons and ligaments. This is an issue that I must battle as I show signs of lose of range of motion at this point.
Lung and heart issues can develop from the inflammation around the lung, heart and rib cage. This can lead to the feeling of pressure in the chest and lungs not properly expanding. Chest pain and heart rhythm issue can also become an issue due to the heart working differently due to the inflammation. As I mentioned above I had a trip in an ambulance and was on a heart monitor for a month. My heart rate for no reason hit over 200 BPM and I was rushed to ER. My heart couldn’t regulate itself properly regardless of the task, I would wake in the dead of night with my heart racing. Doing activity meant I was most likely going to pass out due to my heart trying to work so hard. I am now on an inhaler if I am doing any strenuous exercise and my heart still likes to remind me that it’s not happy trying to keep up with me. Anyone that has hiked with me has definitely heard me huffing and puffing up hills, and like I said that’s with an inhaler. The thing to keep in mind is that the lungs can be reduced to only expanding half the amount that they should in a healthy person. With the lungs not expanding properly, naturally the body is not getting proper oxygen thus leading to the heart trying to work harder to provide the body with what it needs.
Fatigue, when they say fatigue..they mean it! For a long time I functioned on little to no sleep everyday. I even reached a point that I was averaging 3 hours of sleep a week. I was mentally and physically exhausted yet my body couldn’t and wouldn’t rest. I was always tired and felt like I never had the energy to do anything. The less energy I had, the more pain I was in because I was less active. This led to a vicious cycle because the worse the pain was, the worse the fatigue was.
The treatment will depend on how far they think the AS has progressed. Let me add that I suffer from restless leg syndrome as well that is due to the AS. So my treatment began with an antidepressant Amitriptyline that is known for stimulating the nerves to reduce pain and also calm restless leg. This was a miracle for me, because I finally started to get some sleep. The medication knocked me out cold at first, so I knew what a solid 5 hours of sleep felt like. I was then placed on Naproxen Otherwise known as Ibuprofen and this did nothing to help my pain. Which I still had even on the antidepressant. The use of the Naproxen only caused me to have severe Gurd which I am now taking medication for as well.
I continued this route of treatment still having no relief from the pain and actually reaching a point of a strong 9 on the pain scale. I was starting to have issues getting up and down again, as well as struggling on hikes. My Doctor then checked me again and noticed a decrease in my range of motion and decided it was time to branch out to the injection medications. These are a group of immunosuppressant medications. I began my injectable dose of Humira and it was no time at all before I was achieving 6-8 hours of sleep a night and actually having days that I was 100% pain free.
I thought my miracle had finally arrived. Then I never seemed to catch a break with my difficulty breathing, and struggled through a small rough patch of pain. Things looked up again and I went on an Epic 8 day adventure hiking in 4 states out west and reaching elevations I had never before been at. One day while out hiking my fingers, then hands and arms began to swell and go numb. I swelled half way up my forearm. A trip to the ER resulted in a “follow up when you get home.” Upon arrival home it was a hope that I would see a change, thinking maybe it was elevation and travel related. This however was not the case, it got worse, it went to my legs. I then started having shooting pain in my arms. For the last several weeks I have been battling this and they stopped the Humira resulting in my pain returning.
Why does all this matter
You might be wondering why I wasted time with providing so much information. For starters April is Ankylosing Spondylitis awareness month. Secondly, I want you to have some kind of idea what this actually does to someone that has it from a first hand account. Finally I tell you all of this because, AS Doesn’t Rule My Life!
I started hiking because I wasn’t going to let anything get me down, then I was diagnosed and I knew it was that much more important not to give in to how it makes me feel. Now that I am currently having to go through this entirely new set off issues, and it happening right at the edge of AS awareness month, I knew it was time to once again take control and start spreading awareness too.
So hopefully you will join me on a journey that will only lead to maintaining as healthy of a life as I possibly can. I am reaching out to raise awareness by doing a #ASdoesntrulemylife hike. This will only be a piece of a journey that I will be doing to #walkyourASoff 1 million step challenge during April 1st through May 31st. Hopefully you will join me again on May 2nd for the AS World Awareness Day for another hike.