What’s Wrong With You? Part 3: ME/CFS

Myalgic Encephalomyelitis. As difficult to diagnose as it is to pronounce, ME is more commonly known as Chronic Fatigue Syndrome. I personally try not to tell people about this diagnosis as they generally believe it’s an excuse to be lazy or complain about being tired. The catch-all name “Chronic Fatigue Syndrome” doesn’t help with misconceptions either. While fatigue is a symptom, there are many others including: Post-exertional Malaise (PEM), sleep problems, muscle and joint pain, reoccurring pressure and tension headaches, orthostatic intolerance (dizziness and lightheadedness when standing or sitting upright), depression and anxiety, and memory and concentration problems.

Like many conditions found on this blog, ME/CFS is difficult to diagnose and treat. There’s no blood test or lab result that can confirm or deny this illness. Because of this, patients with ME/CFS might feel anxious talking about their problems to family, friends, or doctors.

“You just need to sleep better!”

cute cartoon woman with insomnia on the blue background

If I had a dime for every time someone told me I would be less tired if I charged my phone in the other room, or put it away two hours before bed, I could actually afford the stupid thing. I will be the first to admit my phone is probably not helping my sleep patterns. There have been many nights when I’ve fallen down the Youtube rabbit hole of cute Kim Namjoon videos and suddenly it’s 3am and I’m not even in my pajamas but oh look, another BTS compilation video! But let’s back up. One of the symptoms of ME/CFS is insomnia and sleep disturbances. Yes, Kim Namjoon’s beautiful face found all over the interwebs is not helping my sleep, but it certainly is not the cause. And to answer your questions, yes, I’ve tried that herbal tea, that essential oil, that meditation app. And they’ve helped! But they’re not going to solve my problem.

“You’re just out of shape!”

Okay, yes. That is a fair statement. I haven’t been in proper shape since I was in high school and playing field hockey. Even then, I was mostly living off of a teenager’s fast-paced metabolism and fun. Now I’m a sad adult living off stress and alcohol. Oh how the times have changed. Jokes aside, my lack of physical activity is not causing my fatigue, my fatigue is causing my lack of physical activity. I wish I could go out dancing with my friends, walking around downtown Towson and not worrying about my legs suddenly turning into overcooked noodles. Sometimes I can, sometimes I can’t. That’s the joy of an episodic chronic illness- you never know when it will strike.

“So, what can you do?”

Short answer: I don’t know. Longer, more accurate answer: I don’t know for certain. Some days my energy is up, and I am able to lead almost the same life I could 5 years ago. Other days I need to take a rest midday if I want to make it to my afternoon/evening classes. This usually means a lot of planning ahead on my part and occasionally using a mobility aid. When I had the great opportunity to spend some time abroad, my friend Linnea and I went to the British Museum. We wanted to see everything, and that place is huge! We decided the best way for me to get around was in a wheelchair borrowed from the museum. That way I could still have some independence in wheeling myself around but could take a break if I needed to. And Linnea and I didn’t have to pay for bag storage; my lap worked just as well.

If you know and love someone with ME/CFS, the best thing you can do is be flexible. And if you are someone living with ME/CFS, know that you are not alone. It can be a frustrating, depressing, and infuriating illness, and I completely understand. Remember that the only person who has to deal with the after effects of overexerting yourself is you, so take the time you need to recuperate, and then get back out there and be the kick ass, WorryWarrior you are!

What’s Wrong With You? Part Two: Fibromyalgia

Fibromyalgia (fi·bro·my·al·gi·a) is defined by the Center for Disease Control as a “condition that causes pain all over the body, sleep problems, fatigue, and often emotional and mental distress”. Fibro affects about 4 million adults in the US, yet the cause still is not known. The CDC reminds us however that fibromyalgia can be “effectively treated and managed”. Someone hasn’t told my doctors this

Okay, but what does that mean?

Fibromyalgia, like many other chronic conditions, affects everyone differently. The most common indicator is widespread pain. Sometimes that pain is an ache, other times it’s a muscle cramp, or a bruise feeling all over your body. People with fibromyalgia also tend to be more sensitive to stimulus than others, and can experience symptoms because of it; for example, they might be easily overwhelmed in crowds or noisy places, or be very particular about their bedding, towels, and clothing as certain fabrics irritate more easily than others.

In my case, fibromyalgia manifests itself most frequently in general aches and pains. Basically that means that at any given moment, at least one part of me is hurting. It’s like I’m trapped inside the body of an 80-year-old woman, but without the life experiences and cats.

On good days, my pain, on a scale from 1-10, is about a 3-4; think a headache you can work around, or the soreness from working out. On bad days, my pain can be anywhere from 6-9; 6 being broken fingers and toes, 9 being someone repeatedly slicing me open with a katana while a truck backs over my mangled corpse. (I don’t like using the 1-10 pain scale without examples because everyone’s scale is different, but more on that in a later post.)

Managing the pain

As mentioned above, the cause of fibro is unknown, so treatment plans are all about fighting the symptoms. For me, that means keeping ibuprofen on me at all times, going to physical therapy, using hot and cold packs, and occasionally using mobility aids such as a wheelchair or cane to keep everything in check. Recently I’ve started practicing a lot of holistic methods, and while they don’t work for everyone, some of them have worked for me. When I can concentrate long enough, I like to do a 5-10-minute guided meditation specifically for pain management. These tend to focus on allowing the pain to just be, instead of trying to make it go away. I also have essential oils for relaxation and energy, and I take supplements to fight inflammation.

Being in pain 24/7 can be overwhelming, and can feel isolating, especially when the pain keeps you from the things and people you love. It’s also quite frustrating; doctors can only offer short-term solutions, the embarrassment of not being able to do what you used to, and the fact that despite the absolutely massive numbers of patients (the majority female), fibromyalgia is still up for debate in the medical community.

Anyone who knows me knows I love a good mystery. I am always down to put on my sleuthing cap, grab the nearest Nancy Drew, and begin working out a puzzle. I guess it’s only fitting that the one I’m working on now is The Case of the Mystery Illness.

What’s Wrong With You? Part One: Endometriosis

en·do·me·tri·o·sis

/endōˌmētrēˈōsəs/

Noun– a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain.

As concise and accurate as this definition is, for people unfamiliar with endo, this does nothing to help understand what endometriosis is, and what it does. In order to understand endo, you have to understand the layout of the uterus and surrounding tissue. So get ready for a crash course in the female reproductive organs that is probably more useful and informative than every health class taught in American public schools!

So, as you (hopefully) know, people with these reproductive organs (because some women don’t have these organs and some men do) go through a cycle that lasts about 28 days, before starting again. This cycle is the basis for pregnancy, and is split into four phases: menstrual phase, follicular phase, ovulation phase, and luteal phase. The menstrual phase is the one that most people are familiar with as it is the only one with outward signs, namely, blood and tissue shedding. The thickened lining of the uterus, called endometrium, is needed to support a fertilized egg for pregnancy. When your body realizes you are not pregnant, the endometrium is no longer needed and so it sheds itself and exits, stage right, through your vagina. Endometrium is mainly tissue, but during menstruation it is normal to shed a combination of blood, mucus, and tissue.

The follicular phase overlaps slightly with the menstrual phase as it begins on the first day of your period. The hypothalamus (the part of your brain that coordinates the autonomic nervous system, body temperature, thirst, and hunger) sends a signal to your pituitary gland (the stupid bugger responsible for puberty) to release follicle-stimulating-hormone. This hormone tells your ovaries to produce anywhere from 5-20 small sacs, follicles, each containing an immature egg. Typically, only the healthiest egg will mature, however this can differ between women and cycles, resulting in twins! (or any set of multiples, really, but I’m a bit biased towards twins.)

The maturing follicle tells your body to produce a metric butt ton of estrogen, causing the lining of your uterus, or the endometrium, to grow and thicken.

Ovulation is when the matured egg is released through the fallopian tube and waits, hoping to be fertilized. After about 24 hours, if the egg does not get what it wants, then it will die and dissolve, which is a mood.

Finally, the luteal phase raises your hormones to keep the endometrium ready for the fertilized egg. If you are not pregnant, your estrogen and progesterone levels decrease causing the menstrual phase, and thus the cycle of blood and babies continues.

Okay so now that we understand the cycle, let’s talk more about Endometriosis.

Remember the endometrium we talked about? The blood and tissue pillows for the tiny egg baby? Well that lovely stuff sometimes grows where it’s not supposed to, and no one knows why. There are theories of course: that it’s genetic, that it’s due to hormone abnormalities, it’s retrograde menstrual flow, etc. However, despite every male doctor I’ve ever seen ‘knowing exactly what’s wrong’ with me, the mystery surrounding endometriosis continues.

As you can see in this lovely diagram, the female reproductive organs are surrounded by parts of the digestive system. When the endometrium grows outside of the uterus, it can latch onto the ovaries, fallopian tubes, colon, bladder, and even grow as deep as attaching to the fascia in deep muscle tissue.

So, why is this a problem? First, this is tissue that should not be where it’s growing. The body is smart, and knows that it isn’t supposed to be there, so it does what it does best; it fights the invaders. Your body is constantly at war with itself. Then, during the luteal phase going into the menstrual phase of the cycle, hormones are going through your brain telling that endometrium to shed itself, so it does, but it has nowhere to go, so wherever that extra endometrium is hanging out there’s engorged tissue and extra blood on top of all the cells fighting each other.

But Alex, it’s just a bit of extra tissue! Why is this such an issue?

Unfortunately, women’s health issues have always been put on the back burner as far as the medical community is concerned. So the pain is often written off as PMS, or “women having a lower pain tolerance than men”, again something I have heard repeatedly from my doctors. Endometriosis is not visible via ultrasound as it just looks like tissue. The only way to see that it is endometrium is to actually open up the pelvic cavity and look inside. Yup. It’s only diagnosable through surgery.

The pain experienced every day, and then those special excruciating moments during menstruation, differ with each person. For me, the every day pain can be as mild as annoying cramps, (like a charlie-horse in my pelvis), to feeling like I’ve angered an ancient Samurai spirit who is stabbing me repeatedly while simultaneously squeezing my insides with a hand made entirely out of razor blades.

Treatment

Being a chronic illness, and one that has yet to be fully studied, endo has no cure. There are a few different treatment plans, but nothing long term. Even getting a hysterectomy, surgery to remove the uterus, does not make the endometriosis go away. Some people go into surgery to have some of the extra endometrium removed, but this comes with its own side effects. Like all surgery, it’s risky, and there’s no guarantee you can remove the endometrium. It’s like removing a sticker from paper. You can get rid of it, but it’s going to either leave something behind, or take something with it. And the endometrium usually grows back within a years time.

Endometriosis is a little known illness, yet it affects about 176 million people worldwide. While there is currently no cure, and very few effective treatment plans, I have hope that we will one day get to the bottom of this illness. Because this illness might be strong, but we are stronger.

en·do·me·tri·o·sis

/endōˌmētrēˈōsəs/

noun- a condition in which the patient, while suffering from chronic pain, fatigue, increased anxiety and depression, inflammation, and scaring, still manages to be a kick ass, totally awesome, Worry Warrior.