A Letter Worth Reading from A Fibromyalgia Warrior to Her Friends
Dear Friends (Old, New, and Future),
As you already know, or will know one day, I have fibromyalgia. You can Google the details if you want, but it means I am constantly in some form of pain, usually fatigued, and experiencing a ton of other symptoms that make the easier things in life feel like the Olympics. While you are most likely already very sympathetic and supportive, there are some things you should know about what my condition is like and why I act the way I do at times.
Sometimes I just don’t want to do anything. Some days I will want to run around town and see everything life has to offer. These days are full of energy and usually fueled by anti-inflammatory medications. Other days, I can’t find the strength to roll out of my bed. Getting up to run to the bathroom in the middle of the night can be a nightmare, and if I get a cramp in the middle of the night, forget it, I am never moving. So please have patience and be flexible with me. On Monday, I may want to spend the weekend out of town, but by the time Friday rolls around, I may just want to watch Netflix on your couch.
I will complain about how messed up my body is, just roll with it. Often times, I will get mad at my body, especially when it kindly reminds me that I can’t do all 855741 things I want to do on any given day. I will say to you at some point, “Man, my stupid body won’t let me get up from this table right now” while trying to stand up after lunch and my legs are stiff or, “My brain is blocked” when I get the inevitable brain fog. Just go with it. I am not self-deprecating as much as it may sound like. I am just venting. On most days, you don’t have to overthink if you will be able to take that hike and still make it to the car without crawling or crying. I do. It’s fine, but it will get me mad and upset at some point, so best advice is just roll with the complaints or just smile.
Yes, I have pain relievers, but no, you may not be able to handle them. At any given time, you may have a headache/cramps/bruise/sprain and will think, “oh she will have pain relievers, she has fibromyalgia” and you aren’t wrong. I have an endless supply of pain medication that helps me function during a flare. However, the doses I am prescribed are nowhere near the over-the-counter doses. And they are prescribed to me, so firstly, I need them, and secondly, there is a law to not share meds. But perhaps most importantly, the dose is too high for you.
Fibromyalgia isn’t just about the pain. Remember earlier how I said I will sometimes get brain fog? Good because I didn’t. Fibro attacks it all. In most cases, fibromyalgia will include but is not limited to: brain fog, anxiety, IBS, chronic pain, chronic fatigue, dizziness, irritability, etc. The list of symptoms are endless (or at least seem endless), but for the most part, I have ways to control most of them. If not, please understand that if I have painful bloating, I will just refer to my discomfort as “pain” instead of telling you it feels like an elephant is on a trampoline in my gut.
It’s not just for middle-aged women. I started having symptoms of this condition at 24. I was healthy and could run miles without a worry and literally in one day it all changed. I started getting severe back pain, something I never had, and my muscles started cramping. After about a month of heats pads and pain cream, I went to the doctors. Hundreds of blood tests, scanning, x-rays, and multiple second opinions narrowed it down to fibro. Now at 30, I have been on this roller coaster for six years and have tried getting off the ride but instead have only managed to raise my hand to tell the ride attendant I want to get off… but he didn’t notice my wave.
I am not mutually exclusive with fibromyalgia. Unfortunately, fibro is not all I am working with here. I have another condition I was just diagnosed with (still on the secret side while I work it out). Many of us in the chronic pain community are working with a couple of other conditions, which means sometimes we are weak for a reason other than pain. It’s fairly common, so just please be nice while we work it out.
That’s all I can think of to let you know. We are obviously friends because we have things in common and I feel comfortable enough with you to tell you about fibromyalgia, so it’s a safe bet that most of this may not be new to you. But please know that while I appreciate your help, all I really need from you is flexibility and a good laugh every time I see you.
Your Friend With Fibromyalgia