I mentioned last week, I had an appointment with my rheumatologist on Tuesday to go over my lab work. When you are diagnosed with FMS (Fibromyalgia) there is no real test for it. Basically the doctor looks at your symptoms, gives you a physical check up where they observe certain tender points on your body and how you react to them, and then they order a massive amount of labs in order to rule everything else out.
They took 12 viles of blood from me for these tests if that gives you any idea the amount of things the doctor needed to rule out.
My lab work came back abnormal, which sent me through the roof in one of the worst panic attacks I've had in a long time. Why? Because I don't speak enough medical jargon and then decided to play on Google trying to figure it out myself. Not smart.
The doctor explained that my lab work was abnormal, but not enough. Basically everything that popped an alert up on my blood work could be easily explained by my weight, race, gender, time of year, or color of shirt I was wearing that day.
All except a few minor things.
1. Vitamin D deficiency, which is common in people with FMS.
2. HLA B27. A genetic marker that appears with people who have illnesses such as Reiter's Syndrome, Ankylosing Spondylitis, and Crohn's disease. However, about 10% of people with this genetic marker, never show signs or symptoms of any of these illnesses. I currently am one of those people. Which means that the rest of my life, I have to pay attention to my body extra special because as far as my doctor is concerned, you get a diagnosis of the above when you're brought into the hospital because early signs of the illnesses are Emergency Room major.
In the meantime, that left her with one thing left to do. Officially diagnose a firm FMS.
I fell apart in the car and my poor husband was confused. Didn't I just get good news? I didn't have rheumatoid arthritis or gout or lupus or hypothyroidism or any illness that was either life threatening.
And yes, silver lining that is good news.
But a part of me wanted my doctor to say: You have ____, and here's what we do next.
FMS isn't like that. It's different with every person. You can stay the same for many years, or get much, much worse. Or in some cases, you can manage your symptoms fairly well. But there is no cure. There is no direct course to take. There isn't a timeline I can follow to say, "I will be here in five years," and that's what frustrates me.
I'm the girl that makes a printable list of what to pack for a week vacation, and then I pack my bag a week ahead of time. I'm the girl that won't let anyone else in the kitchen to help unload groceries because I need to know where everything goes. I'm the girl who makes a plan of how to get out of the car, "Okay, I'll grab my purse and my drink, and you grab the food and your drink and I'll meet you at the door."
Not knowing everything, every little detail frustrates me.
FMS is about figuring out your symptoms, your triggers, how far you can push yourself without triggering something. It means testing foods, watching the weather, sticking to a flexible but strict schedule, saying no to things I really want to do, and of course . . . being in pain. A lot of pain. All the time. After that it's just a roll of the dice to see what other symptoms I get out of the 60+ that are associated with FMS.
And the hardest thing of all: No one understands.
I'm often met with "Oh, I know someone with FMS and she did ____ and now she's fine," or "FMS is all in your head. You look fine. You're too young to be sick," or "I knew someone who had FMS and they worked 14 hours a day and ran marathons, so you'll be okay."
Just typing that and I'm audibly groaning.
But I will see the silver lining. It's not fatal. It can be managed. I just need to figure out how.
I won't let FMS kill me or my spirit. At least most days.
I'll be the person who thrived despite a chronic illness.