Let’s just get that red tape out of the way… This is my personal experience. I’m a no-longer-able-to-work-due-to-chronic-illness legal/compliance person, but by no means am I a health care professional, in any way.
If you or someone you know have been diagnosed with an unsolved mystery illness, like fibromyalgia (FM), you may have taken to Dr. Google looking for ways to make life better. You’ve likely come across many people claiming to have the cure, from juices, to supplements, to avoiding certain foods, and on and on. All I can say about that is please keep in mind that the cause and exact cure for FM, and many other mystery illnesses have not been found, so all of those ‘cures’ are more of what might work for one, but not necessarily for another. I don’t know why I’m adding that…if you’re here reading you already know that! 😊 So, what’s my point? Well, let’s get to it.
My FM back story:
My FM story goes way back to 2004. Basically, after a round of Cipro, I was diagnosed with FM. Am I saying don’t take Cipro or that it causes FM? No, no I’m not. (I will tell you that it has a black-box warning so buyer beware, and that there has a been a link between it and FM.)
A black box warning is the strictest warning put in the labeling of prescription drugs or drug products by the Food and Drug Administration (FDA) when there is reasonable evidence of an association of a serious hazard with the drug.
In all honesty, I didn’t take the FM diagnoses seriously. I thought, well I’m young, I’ll shake it off, and folks, I kinda did. I changed my diet, and exercise routine (more about that below). I payed close attention to where the pain came in and what caused heightened insomnia and then I tried to work around those things. This worked for an entire decade, until the day it didn’t. July 2014 I was plugging along, working full time, following a mixture of Mediterranean/keto/whole food diet, doing yoga daily, I’d just finished homeschooling my son through high school, I was walking 10 to 15 miles a week, things were busy but good, in other words the FM was under control. And then one day, almost five years ago now, I got what felt like the flu (approx. 144 symptoms deep) and it’s yet to go away. That was the onset of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (MECFS), but since we’re here to talk about FM, I’m going skip all that for now and just share below what helped me the most back when it was just FM.
Here’s how I held FM at bay:
Bye, Bye Caffeine…I know ouch! I did still drink a bit of green tea, but coffee, whew it caused my pain levels to go through the roof!
So long my first love, also known as sugar…Also ouch. I’m not going to go all scientist on you because frankly I no longer have the brain power. Let me just say this – sugar causes inflammation, lots of sugar can cause chronic inflammation, and fibromyalgia also causes inflammation so the two together are no Bueno. For me sugar causes extreme pain, keep-you-up-at-night writhing-in-bed pain. So, it had to go. Do I still treat myself? Yes. Do I pay for it? Also, yes.
I walked folks…Everyday, I walked and walked and walked. It doesn’t hurt that I love walking. It was my favorite hobby pre-MECFS. Something wonderful would happen to the pain when I was walking, it would let up and often until the next day.
And lastly, but most importantly, I stopped worrying and stressing about things I had no control over – definitely easier said than done. I’m a worrier by nature so yes, I still find myself ruminating here and there, probably always will, but I found a direct correlation between stress and FM pain. I have no idea why this was happening, but emotional stress was causing my body horrible pain. Let go of the stress, lighten up the pain. Got the message body, destress, no sugar, more walking.
For 10 beautiful years those things worked. They kept me adulting the best I could. Sadly, with the onset of MECFS the walking took a huge hit. I remember two months after onset of MECFS I was put on a treadmill for a stress test. I lasted 50 seconds (just two months prior I had been walking miles and miles…barefoot on the beach). The Cardiologist noted in my chart that I was ‘deconditioned’. I was horrified at the time, but I now know this is common, I’m certainly far from the only one with MECFS who has deconditioned in their chart. I suddenly found myself without the ability to care for my FM as I once had and had to learn how to rearrange my life to continue on. A while back my therapist, who I primarily see to deal with the crappy things doctor’s do and say, said, “If you have to do literally nothing all day so that you can get outside at night (my best time of day) and take a few steps you do that because the health benefits are immeasurable”. So, I did that, I followed her advice and for my furkiddo’s last walk of the day I would try to tag along with whoever was walking him if I was at all able. What I didn’t know was how much this was helping with the pain. Which leads me to this year.
This year, as you know if you’re a regular around here, I lost my furkiddo to cancer. Which means the nightly mini walks stopped and as the heartache set in my pain levels went soaring. I tried to do what I could by eliminating sugar (I’d fallen off the wagon a little with regard to sugar). I thought if I cut the occasional sugar the pain would surely let up. As a Valentine’s gift to myself I practiced sugar-free February, but the pain just kept getting worse. By the end of the month it started to dawn on me, it wasn’t just the sugar. My body does its best when I’m doing all of those things (no sugar, no stress, and walking). I’d never stopped walking (even if only a teensy bit) since I had FM. Now I know. I have to do what I can because even though it doesn’t touch the MECFS pain, it does help the FM pain (I haven’t even mentioned the MECFS pain because that’s a whole different type of pain with its own triggers). I’m still coming to terms with the fact that I have two competing chronic illnesses, one (MECFS) that refuses to allow your body to reproduce enough new energy and makes you much sicker if you push it and the other (FM) begging you to expend energy. It seems rather unfair doesn’t it? I think so.
My final thoughts – When these illnesses are understood better, FM and MECFS, I believe millions of people will realize they’ve been misdiagnosed. My experience is that they are not the same, in fact the pain isn’t the same, the symptoms aren’t the same, the fatigue isn’t the same. I can’t tell you how many doctors don’t believe in MECFS and tell me I have severe FM. To all those people out there who have been told you have FM but you experience PEM (post exertional malaise – a worsening of symptoms after minimal physical or mental exertion, which can be delayed 24-72 hours or more) please be cautious. What worked for FM (exercise) doesn’t always work for MECFS, in fact it could be harmful, it was for me.
Thanks for stopping in today, my apologies that the post is kinda ‘Debbie downer’ but it’s my PSA from me to you. I know you could be doing absolutely anything with your day and you chose to check out what’s on my mind and I appreciate that and you! If you agree or disagree or would like to add absolutely anything I’d love to hear from you in the comments. Below are a few more of my doodles as I continue to follow along with World Watercolor Group prompts on IG. Wishing you a day filled with kindness. 🌸