My ME, Part II - Discovering Myalgic Encephalomyelitis

Leaving my job was absolutely the right decision, and I was lucky enough to find something else with my alma mater as an online TA while on sick leave from my old job. But there were some toxic things I had to ditch in my life in order to start feeling better.

The first of these was aspartame. I read the symptoms of aspartame poisoning and it sure sounded like a good candidate. I'd practically been hooked intravenously to a Diet Coke since I hit puberty, but I'd given it up before for good health, and I could again. I knew I was looking at a far more sedentary life, so I vowed to exercise regularly and bought an exercise bike and dusted off my yoga mat and DVDs, and I downloaded an app to keep an eye on my calorie consumption. Then, I started a symptom tracker app so that I could try to figure out what was going on with my health, especially with my symptom of 'air hunger' - the feeling that, despite deep breaths, you are not getting enough oxygen.

All my research pointed to my issues being something to do with oxidation or oxidative damage, so I started taking an antioxidant blend made by a formulator I know personally and trust, as well as a formula for nerve pain. The antioxidant blend was predominantly B-vitamins, which perked me up considerably and near-instantly.

I didn't notice less brain fog with less aspartame, though; however, I did notice that I immediately dropped five pounds and felt better in a general way, so I decided to stick with it. I found that, unless I ate less than 1300 calories, I gained weight, which seemed insane (it is, kids - don't try this at home). Lest you imagine I was wildly miscounting everything, I'm a chemistry teacher. When I thought 'this has to be wrong', I started measuring everything in measuring cups and with my kitchen scale, guys, I am not kidding when I tell you how many calories it took for me to not maintain, but gain. So quite obviously something was wrong with my metabolism for some reason. I'd gotten my thyroid checked over and over and it was all systems go on that front.

My symptom tracker informed me that I had trouble breathing right before it stormed. I'm in a part of the world known as 'temperate rainforest', so that's pretty much every day, so I thought it had to be coincidence. However, when I actually looked it up, guess what? The dropping barometric pressure means less oxygen in the air, and other people with breathing issues find it's worse before a storm so... it's not nonsense. Yay for data! I also had trouble breathing when the percentage humidity went up, and on hot days in general. (Lovely.) I was more likely to have it before my period. Hmm.

Then I realized I was more likely to have it on days when I had a lot of milk products. They had to go.

My weight magically dropped five more pounds.

I went to an MS clinician at Cleveland Clinic, who said, "fatigue and muscle pain and they never tested you for myasthenia gravis, or copper, or zinc, or Vitamin D, even?"

If she was arguing other docs' incompetence, I couldn't contradict her. As it turns out, I had no Vitamin D stores. The week I started on high-dose Vitamin D, I dropped five more pounds.

Meanwhile, I was having trouble with exercising. Fifteen minutes of my favorite yoga tape seemed to be fine, but if I did that and biked, I was completely wiped out the next day, and I felt profoundly ill. I figured I must be pushing too hard, so I backed off. But as if my body had some kind of magical do-not-cross line, at about 18-20 minutes of moderate activity my body warned me really loudly to stop. I kept backing up and moving forward again, certain if I just did it right, I'd push past that invisible barrier.

I didn't know this at the time, but I was trying some kind of modified GET.

So I hit 23 minutes and my body was like a computer suddenly showing the blue screen of death. My hands and feet went ice-cold and so did my gut. When I stood from the exercise bike, I could barely walk, I was so dizzy and weak. I stumbled into the shower, but I could feel the hot water chilling against my skin. Have I mentioned the cold? We're talking Winter-Is-Coming levels of freezing. I left the shower and was instantly cold again. I wrapped myself in a towel, in a robe over the towel, pulled every cover up over me in my bed and still shook. It was frightening and I was miserable. My brain fog felt all-encompassing and profound. I could barely string a sentence together in my head, much less aloud. This was in the morning, and I spent the rest of the afternoon and evening in the bed until I finally warmed enough to sleep. The next day, every muscle ached and my symptoms were still awful. By the third day, I was almost back to baseline.

Still, I tried again. Something must've happened - I must've done something else, because what supposedly healthy thirty-something can't do a bit of light bike riding for less than 25 minutes? So I had a week of no exercise before I started again at ten minutes. That was okay - even good. Yoga for 10-15 minutes left me feeling loose and relaxed, with better circulation. I slowwwly upped it again.

...and the same thing happened again, in the same timeframe. UGH. It wasn't as bad this time, because I kept an 'eye' out for growing too cold or shaky, but events repeated anyway, complete with a 36-48 hour recovery time.

And that is how I found ME. Nowhere else that I can find does ANYONE describe this as a symptom in any other disease or dysfunction. When I searched, that was when ME popped up on my radar, and the more I read, the more I was convinced that this was really it, this was really what was wrong with me. When I realized that it was conflated with CFS, I became even more convinced... especially when my oldest sister admitted she'd been diagnosed with Epstein-Barr, something she'd kept to herself up until that point.

Of course, I'd been convinced before. I'd have to look backwards in my internet tagging history, but at one point I've been equally 'sure' that I had Isolated ACTH Deficiency, CAH, Dopamine-B-Hydroxylase Deficiency, and a bevy of other likely candidates. But none of them had this symptom.

Meanwhile, my breathing issues were getting worse. They actually started becoming a problem years ago, but they'd only surface in the summer (when it was very hot and very wet out). It got bad enough that there were certain days, when it was thick and humid outside, where I just wouldn't leave the house. Then, it crept into autumn as well as summer. At the point we are in our narrative, I could have them whenever. And if you're wondering if they're stress-related, they quite clearly were not: I could get them sitting at my desk reading a novel, outside walking, or lying in bed. I did not tend to get them more often on days or weeks that had been stressful, like one does with a delayed panic attack.

However, the fact that I tended to get them before my period had given me a clue. I looked at which hormones dip around that point, and checked to see if any of them had associations with respiration and healthy breathing, and yes - when progesterone gets too low, one can have increased breathing difficulties. I recalled an herb that helped increase progesterone by increasing FSH: Vitex agnus-castus. Hmm.

Mid-breathing episode, I pulled the herb out of my stores as a powder, dumped some in a cup and Keuriged that mofo. I downed it the moment it was cool enough to drink.

At first I thought I was just imagining it, but eventually it was clear that the herb had stopped the breathing difficulty in its tracks. I was ecstatic, guys, really - you have no idea how much else I'd tried before that did the trick. One gram is a dose, if you're thinking of trying it for yourself.

Then I ate a muffin and had horrible orthostasis and gut cramping and thought, 'okay, guess wheat's out the window, too.' And I lost five more pounds...

My last piece of toxic baggage was my GP (185 pounds of deadweight!), who I should have gotten rid of long before I did. He was always relatively clueless, but it was his attitude towards me that was so poisonous. He was convinced that the fact that I'd seen a rheumatologist, an MS specialist, and an endocrinologist meant that all potential illnesses had been ruled out. While that's charming at a childlike level (yes! science understands everything, and anything that three experts cannot find does not exist!) it is not the attitude one looks for in one's primary care physician. He also mentioned I'd been to see a gastroenterologist and an immunologist (neither of which was the case), and that I'd had no abnormal lab results from the MS specialist's visit (also not the case, as previously mentioned). He did this all with a reddened face and a raised voice. That cued me into the fact that he was so convinced he already knew there was nothing wrong with me, that he'd long since ceased paying attention to new data.

I'd pretty much hung on as long as I could so that he would refer me to the Mayo Clinic in Rochester, Minnesota. My mom had advised me it would be too much trouble to get someone new, someone who didn't know me or understand my case, and honestly? I was too exhausted and foggy to look elsewhere.

"I'll give you the recommendation for Mayo this time," he said, "but if the other experts didn't find anything, they're not going to find anything, either. This is the last time I'm willing to do this for you," he added. Can I mention that he tried to look paternal but stern as he did so? I kid you not, he dipped his chin and looked up at me through his lashes like a freakin' Norman Rockwell painting of an admonishing doc. Behind it all, I could tell he was furious with me for disagreeing with him, and was trying to cover up his anger with this faux-fatherly act, which I didn't (and still really don't) understand. "When they don't find anything, you can come and get a prescription for an antidepressant from me."

Very luckily for me, he was wrong about Mayo finding nothing.

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