4.22.2013

My Disease: Living with Ankylosing Spondylitis Part 1/2

* Disclaimer: I started writing this post weeks ago and then stopped it how it is now, because it didn’t feel “done” and I have a lot more to write about.  For now I am just going to post it and then write the rest another time in a second post. I don’t mean to complain by any means or try and get sympathy. I am doing fine. I am slowly accepting the fact that I have this disease and I will have it for the rest of my life as there is no cure. Anyways, I guess I am writing this because I think it would be good for me and at the very least I can go back and read this to see how my symptoms were managed (or very out of control) as time goes on and I try to figure out this lifelong disease and what works and doesn’t. Actually I just remembered, some people have emailed me or sent messages through my Facebook page because they have Ankylosing Spondylitis as well…so if you have it, speak up! :) Let’s share ideas of how we can deal with the pain and disease! Or maybe you may have some of these symptoms and this helps you find a a possible diagnosis…REALLY hope that isn’t the case! Oh, and April is Ankylosing Spondylitis Awareness Month so now you are aware!!! *

Here goes! 

I have been meaning to write about this dang disease…for months now, but I haven’t felt like it because 1. It pisses me off and I don’t want to get in a bad mood, and 2. I know it will turn into a novel and take me hours to write…

I will first tell you about the disease and then my experience with it.

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A little about the disease, found from the Spondylitis Association of America:

Overview: Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis. AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected. The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.

Most Common Symptoms: It is important to note that the course of ankylosing spondylitis varies greatly from person to person. So too can the onset of symptoms. Although symptoms usually start to appear in late adolescence or early adulthood (ages 17-35), the symptoms can occur in children or much later. Typically, the first symptoms of AS are frequent pain and stiffness in the lower back and buttocks, which comes on gradually over the course of a few weeks or months. At first, discomfort may only be felt on one side, or alternate sides. The pain is usually dull and diffuse, rather than localized. This pain and stiffness is usually worse in the mornings and during the night, but may be improved by a warm shower or light exercise. Also, in the early stages of AS, there may be mild fever, loss of appetite and general discomfort. It is important to note that back pain from ankylosing spondylitis is inflammatory in nature and not mechanical. The pain normally becomes persistent (chronic) and is felt on both sides, usually persisting for at least three months. Over the course of months or years, the stiffness and pain can spread up the spine and into the neck. Pain and tenderness spreading to the ribs, shoulder blades, hips, thighs and heels is possible as well.  Note that AS can present differently at onset in women than in men. Varying levels of fatigue may also result from the inflammation caused by AS. The body must expend energy to deal with the inflammation, thus causing fatigue. Also, mild to moderate anemia, which may also result from the inflammation, can contribute to an overall feeling of tiredness. In a minority of individuals, the pain does not start in the lower back, but in a peripheral joint such as the hip, ankle, elbow, knee, heel or shoulder. This pain is commonly caused by enthesitis, which is the inflammation of the site where a ligament or tendon attaches to bone. Many people with AS also experience bowel inflammation, which may be associated with Crohn's Disease or ulcerative colitis. AS is often accompanied by iritis or uveitis (inflammation of the eyes). About one third of people with AS will experience inflammation of the eye at least once. Signs of iritis or uevitis are: Eye(s) becoming painful, watery, red and individuals may experience blurred vision and sensitivity to bright light.

Advanced Symptoms: Advanced symptoms can be chronic, severe pain and stiffness in the back, spine and possibly peripheral joints, as well as lack of spinal mobility because of chronic inflammation and possible spinal fusion.

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My experience with AS:

I first heard about the disease when my mom would talk about it here and there. I was probably in junior high when I heard the term and was like “What the heck is that?” It was just some disease that I knew my mom’s aunt had (it is genetic) and it had the stupidest name I had ever heard of. Ankylosing Spondylitis? Dumb name. Like who has heard of that? No one, other than your rheumatologist. I wish it had a different name…but that is the least of my worries…but a valid one haha.

On a related or un-related side note: Rewind to elementary school, once at a yearly physical, the doctor told me to bend over to see how flexible I was. I did, and they thought my lower back wasn’t very flexible. I got an X-Ray because of it and I don’t remember much else about it, other than the fact my lower back wasn’t really flexible. Fast forward to every PE gym class ‘Sit and Reach’ test. I always dreaded those and sucked at those. I’m not sure if this is related or not. Still to this day, my lower back is…very inflexible. I even took Ballet classes at BYU and stretched daily trying to eventually do the splits…yeah, right haha…and I was a dance major haha! {In clogging you don’t have to be flexible :)}

Moving on, I had heard of the disease and knew it was associated with an HLA-B27 gene that ran in our family. I know my mom tested positive for the gene and same with my brother Zach and sister Kelsi. I think my brother Patrick may not have the gene (doesn’t necessarily mean he doesn’t have AS) and I don’t think Hunter has been tested as of yet.

Throughout high school, I would get random eye infections/inflammation. Eyes can be affected with AS. I would have to stop wearing my contacts (and wear glasses) and use steroid eye drops multiple times a day. I remember wearing my glasses for months at a time while the infection cleared up. I remember, always wanting the infections to go away so I could go snowboarding and wear my contacts with my ski goggles. Also, working out and playing tennis is the literal worst in glasses. But, I had blepharitis, chronic keratitis, in addition to inflammation. Maybe related to AS? Iritis sure is…and I got that a few years later…

Also, in high school, I played tennis. I remember one summer while playing competitively, my lower back started hurting. I thought it was practicing my serve (with the back bend) and playing tennis everyday. I ended up doing physical therapy. I remember the physical therapist doing the TENS Unit on my back and thought it was awesome. Also, I remember it kind of going away after that summer.

Iritis: A couple years later, I move to Provo to attend BYU and one semester I start getting an eye infection – iritis - inflammation of the iritis. This is the eye infection associated with AS. This was THE WORST eye infection I had ever had in my entire life. It hurt to move my eyeballs even with my eyelids closed. Light was so incredibly painful. I would try to do homework in the dark at my apartment. I had to have all the lights off in our apartment otherwise it was too much. I remember my friend Celestine coming over to my apartment once while I had it (and before I went to an eye doctor) and she was shocked I was living in the dark like that. I remember Kevin being out of town for BYU Baseball for some of it… Basically my eyeball hurt to move and was insanely painful when there was any light. Also, my eye was very red. Before I went to the eye doctor, I tried to go to an Accounting review and meet with a tutor but it was too painful. I met with my Accounting teacher and he said I could skip the midterm and he could just average my other tests or something…he let me out of the test luckily. I also wore an eye patch to school…how awkward!!! I wore a hat of course to make the eye patch less obvious. Finally, Kevin came back into town and drove me to the eye doctor. Walking from the car to the eye doctor’s office, I was covering my head with my hands and wincing in pain. He thought I was joking but it was so painful. The day light was too much! Finally, I met with Duane Nelson, an ophthalmologist at the Utah Valley Eye Center. I really liked him because he was very nice, caring, and helpful. He diagnosed me with Iritis and I started steroid eye drops every couple of hours. On a side note- I was dancing on one of BYU’s Folk Dance teams and had a dance performance a couple days later…at a practice – with glasses and an eye patch – I remember the teachers weren’t very nice. Try covering your eye and then dancing and being spatially aware of the dancers to the side of you (out of your peripherals) and trying to make perfect lines, etc.…Whelp, when you have one eye covered, spatially things are off and your eyes and brain can’t process things the same way. Luckily, I had started my drops and begged my ophthalmologist to let me wear my contacts the evening of the performance and all went well. He said if I hadn’t come into the eye doctor then, that I could have gone blind. It was so serious. My mom wanted me to bring up AS to my ophthalmologist right away since her aunt – who had AS – has had iritis numerous times, has seen more than 50 different eye doctors, and sometimes gets such bad cases of it that it can take 6 months to heal! So she wanted me to bring it up to him and see if I should get tested for the gene. He agreed and thought I should tested for it and possibly see a rheumatologist.

HLA-B27 Positive:  A doctor at the BYU Health Center sent me over to their lab to get my bloodwork tested and to check for the HLA-B27 gene. The results were yes. I had the gene and I had the eye infection (Iritis) and my mom’s aunt had the disease. LUCKILY, I had no pain at this point…

Beginnings of Back Pain: All was well until after I graduated BYU in the spring of 2011. Kevin and I packed up all our stuff and moved to my hometown, Fort Collins, Colorado. I started experiencing back pain and blogged about it here. I wasn’t sure if was a new bed? Kevin and I stayed with my parents for the summer until we bought a house in October. Before living at my parents we had a King sized bed and then we downsized to a Queen? We were definitely cramped after being used to our King sized bed. That was one possibility of my back pain…Also, I used to ALWAYS, for years, sleep on my stomach. Ever since we moved to CO, in April of 2011, I haven’t slept on my stomach because of back pain. The pain got really bad sometimes. My mom knew of the symptoms and urged me to meet with a rheumatologist. When I had Iritis at BYU, they wanted me to see a rheumatologist but I didn’t have back pain so I brushed it off then.  At the rheumatologist appointment, they had me do X-Rays, but not that many, because Kevin and I were planning to start trying to get pregnant and too much radiation isn’t a good thing at that time. I then got results and the X-Rays showed my spine wasn’t fusing here, so at that point they couldn’t clearly say I had AS. My back pain lessened and all was well…for maybe a few months.

Pregnancy: I got pregnant with Ryder around November of 2011 and things were good until about January of 2012…I was in my first trimester and started experiencing really bad back pain. I kept talking about it to my OBGYN and told them about the possibility of AS. I was waking in the middle of the night in so much pain I couldn’t lay in bed in any position, so I would try to lay on the ground to sleep, lay on a recliner chair, and often times, I couldn’t do any of those because it was so painful. I would have to sit for hours for the pain to go down so that I could lay down in any way. It was very frustrating to not be able to sleep when I was so tired. Plus, the first trimester of pregnancy is already so exhausting! Anyways, the only time I truly threw up while I was pregnant was actually because of bad back pain…not because I was nauseous. I went into my OBGYN that day because of it. My OBGYN was very concerned and sent me to Physical Therapy. Unfortunately, my health insurance only covers 20 visits a year and I used 17 of them in the first few months. I was so worried that my pain would be horrendous when I was in my 3rd trimester that I stopped seeing my physical therapist because insurance wouldn’t cover more (my doctors and physical therapists tried hard to get me more visits and couldn’t :( ) and how could you pay so much for multiple visits a week out of pocket?! I did all my exercises religiously and honestly felt like the back pain wasn’t correlated to the exercises…it flared up really bad for a few months and calmed down a little in the second trimester enough that I could function. I honestly don’t feel like physical therapy helped… Because of my back problems, I wasn’t able to exercise as hard as I used to (and of course being pregnant you can’t exercise as hard as well). My OBGYN and physical therapist told me I couldn’t do basically anything but swim or walk. I did some yoga and eventually just walked several miles a day but my back would hurt so bad I would have to stop sometimes. My back pain got really bad in the third trimester again and of course Ryder was packing on the pounds. He also decided to make me pregnant to exactly 41 weeks…stubborn little boy who did not want to leave the womb! In some patients with AS, their symptoms go into remission…unfortunately that wasn’t the case for me. :( Overall, I felt lucky that I didn’t have any major health problems while being pregnant with Ryder other than my disease. But I do think the disease made my pregnancy a lot harder than some others.

Labor & Delivery: Ryder’s entrance to the world was…crazy haha. It was NOT how I planned and I would say my plan was pretty flexible minus the fact that I wanted the DRUGS! I was ALL ABOUT the epidural. Unfortunately it didn’t work well and I read on some website that if you have AS, sometimes the epidural doesn’t really work. Something because your spine is all inflamed and you’ve got arthritis of the spine sooo… I’ve asked 1 rheumatologist and a Physician's Assistant at my rheumatology office and they hadn’t heard of that…just makes me wonder! PS. Ryder’s birth story here.

Post-Partum: After I had Ryder, I felt amazing – well, ignore the c-section and feeding issues for Ryder. I had no back pain and I was hoping it was because I wasn’t pregnant anymore and an insane amount of weight loss. Like goodbye 20-30 lbs.! Reality Check: I wasn’t sleeping more than 1 hour at a time for 2 months because Ryder didn’t know how to suck correctly. Because he couldn’t suck right or nurse, I had to attempt to nurse (10-20 minutes), bottle feed, and then pump 20 minutes for each feeding period. Now multiply that at least by 8 times a day and all through the night. Well, you don’t really sleep while trying to solve that kind of feeding issue. After meeting with my amazing lactation consultant, Becky and a physical therapist for Ryder, he figured out how to nurse at 8 weeks. Then, I read Baby Wise and Ryder started sleeping through the night, in…a week or less?

Post-Partum Back Pain Flare: Welcome…back pain…in November. The back pain I have would wake me up in the middle of the night it was so bad. I don’t know how to explain this sort of back pain other than the fact that if you lay immobile too long, your spine gets inflamed and painful. I went from sleeping maybe an hour at a time to sleeping…8+? That is what brought on the back pain again. I forget what the name of it is but basically when you remain immobile for too long everything gets inflamed and that is was what was happening. It would be great if I could stay active and move nonstop all day and all night…! Anyways, It would get so painful that I had to get out of bed and sit vertical in my recliner – Ryder’s rocking chair.

Costochondritis: This pain can also affect your ribs so those would get so inflamed that breathing is painful. (Costochondritis is inflammation of the ribs.) You cannot take deep breaths at all. I would try laying on my stomach but it was impossible. Also, tried laying on the floor but every time it didn’t work. The best was sitting in a recliner or moving around for the inflammation to go down just enough that you could maybe fall asleep again in an hour.

Now only being able to sleep for 4 hours at a time and then having to be awake for an hour or two to then fall asleep for one before your baby wakes up is not ok. Actually, this type of sleep is not okay for anyone! I really wish I didn’t have to sleep so I could be productive and semi-pain free. When I would wake in the middle of the night, I would sometimes try to move my spine around (with very limited motion and lots of pain) but usually ended up sitting on the recliner on my iPhone. I would be in a very bad mood and often times that is when I would Google “Ankylosing Spondylitis…this…” or “Ankylosing Spondylitis…that…” Kevin would sometimes wake up in the middle of the night and realize I am not there or wake up to get ready for work and find me in Ryder’s room on the chair trying to sleep. I read that some people just sleep a few hours at night and take naps throughout the day but that is no way to live. I can’t take a nap everyday because I take care of Ryder and he doesn’t always take naps on schedule and for a certain amount of time. Then you think about what a waste of time the hours from 4 am to 6 am are when you are trying to sleep but can’t because you are in pain. Sometimes, I’m like, “I need to make the best of this disease so what could I do to be productive at those hours?” I could blog…clean…workout…but the fact is when are you going to ever sleep those hours in the rest of the day? Plus, when I would wake up, I would get pissed off and so that wasn’t really an option. I also sometimes tweeted things like “I hate AS! Let me sleep!” sooo… Also, I decided it was pointless to take Advil when I would wake up because by the time the meds would start to kick in, if I just sat there awake, they wouldn’t help me sleep any sooner. Why pop tons of Advil every night and eventually get an ulcer? (My mom got ulcers from pain meds before) And of course, with AS, you are more tired than normal people because your body is trying to fight the inflammation, all the time! Lots of fatigue over here.

I finally made an appointment with my rheumatologist in December, right before our Brazil trip, because it was getting worse and I knew I had met my deductible for the year. I really wanted to take advantage of that because if I got X-Rays or other testing it should be covered. Until this day, my rheumatologists didn’t say for sure that I had AS other than the fact that I had the gene, I had Iritis, it ran in my family, and I had the symptoms…I had gotten X-Rays in the summer of 2011 which showed my spine wasn’t fusing. The hard thing about this disease is that it can take up to 10+ years to diagnose! Some people don’t know even longer than that because doctors can’t figure it out! Also, when your X-Rays finally show stuff going on, is during the more advanced stage of the disease. Anyways, when I met with her, I asked her “Do you think I have AS?” And she said, “Yes, honestly, I think you do.” She didn’t come out and say it but she did when I asked her. Awesome. I was one of the lucky 1% of the population with it! So I went and got X-Rays – a lot of them too – and went to Brazil as I wouldn’t be using my phone and wouldn’t hear the voicemail with my results.

Here is Ryder in the dressing room at the X-Ray office. He was an angel during my X-Rays haha! He slept the whole time – hanging out in the back with the X-Ray technicians as he can’t be in the same room as me during X-Rays - and didn’t make a peep!

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My back was okay in Brazil. I remember waking a few times on the trip not being able to sleep but it wasn’t the worst it had been. When we got back to the states and I got cell service, I called the nurse from my rheumatology office. Finally, I spoke with her and apparently my spine wasn’t showing it was fusing or anything! So that was good news. In the appointment, we decided I would try some medication (after hearing the results) and they wanted me to start physical therapy. I said I would like to try some medication and that I would start to work out instead. It is hard for me to want to start physical therapy when I didn’t feel like it helped much – if at all – a year ago. It was just expensive. My rheumatologists always say the people who are more active with AS do better, so that was my plan. She said that I would be limited in medications I could take because I am nursing Ryder and I told her that is ok. There had to be options.  I later read that after pregnancies you often have really bad flare ups and that is what had just started! Joy! But so worth it because Ryder is now in our family :) At the beginning of the year (which is where I am kind of caught up to in this post), I was in a lot of pain and it would only get worse.

To be continued…Part 2 coming soon!

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