Monday, March 28, 2011

A Health Update & What Fatigue Really Feels Like

I think it's high-time for a health update (if you guys don't mind) and I'll start with the good news: I'm beyond thrilled to report that my pain seems to finally be under control! After about a year of consistent (and often burning) pain ranging anywhere between 6-10 on the "pain scale", I'm now about a "1-4" on any given day. Who knows how long it will last, but I'll take it! I attribute this change to a few important factors:

1) I finally found a drug that works for me as well as Humira used to. Since November, I've been receiving monthly Orencia infusions in the hospital that seem to work wonders. The 3 1/2 hour infusions aren't fun and, just like all TNF Blockers, Orencia weakens my immune system, leaving me vulnerable to illness and infection. However, I'm willing to take the bad with the good because...well...the good is so good. While I risk sounding overly sentimental (oh, who am I kidding? That's my middle name), I feel as if I have my life back; I feel as if I can be Maya again.

2) I've also been on a gluten-free diet since late November and, while I was initially skeptical and resistant to giving up my bread and baked goods, it has been entirely worth it (and please appreciate that this is coming from a bread fanatic)!  I have done lots of reading about the benefits of removing gluten from our diets. The truth is that  - sick or not - many of our bodies just can't handle the stuff. According to Catherine Guthrie, a writer for Experience Life Magazine, "gluten is an umbrella term for proteins found inside many grains and seeds, namely wheat, rye, barley, spelt, kamut and triticale. Although most of these foodstuffs, especially wheat, are considered a mainstay of the human diet, not everyone can digest them." She goes on to explain, "...grains in general are a relatively new addition to the human diet. Our ancestors began eating them, at the earliest, 15,000 years ago, which is a blink of an eye in our 2-million-year history. Some of us have adapted; others have not...Today, up to 90 percent of the protein in wheat is gluten, a 10-fold increase in the past 100 years. The average American consumes about 150 pounds of wheat each year."To read the rest of this article, click here. I'm not trying to push this lifestyle on anyone, but it's definitely worth a try! Trust me - if it makes you feel better, you wont even be tempted a little bit by that cookie. Your brain quickly becomes re-wired: Cookie = pain.

3.) I give myself ample down time and treat my body right. For the majority of my life, I think I was living in some form of denial, while the truth is that Spondylitis is here, it's forever,  and it demands some very real changes. Before last year, if I was experiencing a "good day", I would push myself to the limit. Part of that was being a college student and wanting to keep up with the fast-paced lifestyle, but deep down, I'd also somehow believe that a good day meant my disease was miraculously cured. It was obviously never the case and, with increased activity and stress placed on my body, my pain retaliated. I had a hard time accepting that my limitations were so different than those of my peers, but now I've come to a place of acceptance. If I'm in pain, I can't push myself to walk that extra 5 city blocks. I can't stay stand around in bars for hours because the pain that night and the following morning is just not worth it. I can't stay out as late as everyone else because sleep is a driving force in my pursuit of health. I can't just eat anything I want; food is fuel and I need to ensure the right things go into my body.  None of it is worth the aftermath and, the I know the longer I live in this body, the more self-aware I'll become.

Now on to the not-so-great news...

For the past month and a half or so, I've been feeling outrageously fatigued every day. I can wake up at 8:30am and easily get back into bed at noon for another four hours of rest. I feel as if I could sleep at any given moment which gives me a major disadvantage in school, as you can imagine. When fatigue hits,  each and every task (getting dressed, taking the bus, seeing friends, etc. ) feels tremendous and can completely knock me out. It's important to understand that real fatigue is not just feeling tired; it's an entirely different beast. I read some descriptions of fatigue by fellow patients on the Spondylitis Association of America's website. Michael from New York City wrote, "true fatigue feels like "wearing a jacket containing 40 pound weights in each pocket, while slogging through a vat of molasses with suction cups glued to the bottom of your shoes." Tim from Phoenix explains, "No amount of sleep will reduce the fatigue that makes me feel like I'm walking around all day with one of those lead aprons that they use at the dentist's office for x-ray protection. It feels like when you experienced a BAD case of the flu - pre AS." Unfortunately, these descriptions are dead-on. Below, you will read about Spondylitis-induced anemia. which I have apparently developed. My blood tests show "mild anemia"and it has been enough to profoundly impact my life.

Here is a more detailed explanation of the causes of fatigue in Spondylitis (copied from SAA's official website)

Fatigue In Ankylosing Spondylitis
As reported in our News Section on November 20, 2006.
"Fatigue has been recognized as one of the major complaints among patients with inflammatory rheumatic diseases." State Croatian researchers in a recent study. But what causes fatigue in Spondylitis? Fatigue can be caused by many things related to Spondylitis such as loss of sleep because of physical discomfort. But it can also be a by-product of the disease itself. Spondylitis causes inflammation. When inflammation is present, your body must use energy to deal with it. The release of cytokines(1) during the process of inflammation can produce the sensation of fatigue as well as mild to moderate anemia. Anemia may also contribute to a feeling of tiredness. Treating the inflammation caused by Ankylosing Spondylitis can assist in decreasing fatigue and anemia. We recommend discussing treatment options with your doctor.
Tip: Fatigue can be a big part of pain. In addition to speaking with your doctor, ask your physical therapist to teach you how to move with efficiency so that you may minimize fatigue and frustration. The Croatian researchers conclude that, "…the intensity of fatigue should be assessed more frequently in patients with inflammatory rheumatic diseases as a marker of both disease activity and functional ability."

(1) Cytokine: A small protein released by cells that has a specific effect on the interactions between cells, on communications between cells or on the behavior of cells. The cytokines includes the interleukins, lymphokines and cell signal molecules, such as tumor necrosis factor and the interferons, which trigger inflammation and respond to infections.

Although the fatigue is the hardest to cope with, I've also been experiencing a whole slew of other strange symptoms: occasional dizziness, extreme thirst, mild hair loss, many mouth sores, and night sweats. While these symptoms sounded like possible side effects of a drug, my primary care physician thought they sounded too "auto-immune" in nature. She believes that they're more likely linked to Spondylitis or maybe another issue all together (let's pray that isn't the case). She ordered a wide spectrum of blood tests that I got today. I just pray that we can get to the bottom of all of this, so that I can feel better and truly enjoy this improvement in my pain. Please keep me in your thoughts and I'm wishing all of you good health and happiness (as always).



  1. Thank you for this post, Maya, and also for the nice comment you left on my blog. I have been following Loving with Chronic Illness for months and it's so wonderful knowing other females out there with AS.

    I related to a lot of this post. I think it's really important to note the fatigue factor with our disease. For me that is a big part off it.

    I am happy the pain part for you is under better control now. That is wonderful news!

    I am right there with you with the other symptoms that are autoimmune. My rheumatologist thinks I may have another diagnosis going on also, but we are watching closely and waiting to see if more symptoms crop up.

    Wish you the best always!

  2. thinking of you, always. xo

  3. Maya,

    I don't always comment, but often stop by your blog. You are truly a beautiful soul and have a blog that is a delight to read. I appreciate you taking the time to update us about your health. It makes me happy to know that you are able to report a lower level of pain, but sad to hear that you are experiencing such intense fatigue. I'm hoping and praying that your doctor is able to get to the bottom of the other awful symptoms you've described. You will be in my thoughts and prayers.

  4. Jennifer: I'm so happy to have you as a loyal reader and your comments are so appreciated. I'm very sorry that you can relate to all of the symptoms I've been experiencing. I'll keep you in my thoughts and and pray that it's not related to another diagnosis. Please keep me updated on your progress, okay?

    Betsy: Thanks so much for the thoughts, as always. Know that you're on my mind now more than usual and I'm here.

    RheumforGod: I LOVE your blog too! I'm currently devouring several of your posts and I can also relate to many of your experiences. It's amazing how reading others' stories can make the world seem so much safer. Thank you so much for your beautiful comment and for taking the time to read about my progress; your support and prayers mean the world. PLEASE keep reading and could you remind me what your real name is?

  5. Thank you as always for your incredible honesty. I agree so much with your comment above: how others' stories can 'make the world seem so much safer'-I couldn't have put it better myself. From day one of reading your posts (almost a year ago now!), I felt safer in all of this. There was someone who 'got it' and it meant it wasn't 'just me'. I wouldn't have ever had that feeling if you hadn't opened up to us all.

    My love always, and wishing for the cause of these symptoms to be found soon, so you can be feeling well.