Looks like I officially get to be apart of the surprisingly large group of people who call them selves FibroWarriors. Do I get a pin or something? Chronically Fabulous maybe…or Sick Club? Fibro Chic? No? Okay then…
Spent the better part of the day at the Rheumatologist. I had a pressure point exam, ultra sound of my wrist and fingers and some other lab work done as well as a very informative lecture about Fibromyalgia–mostly stuff I already knew because of my dad’s ex-girlfriend has Fibro. Also a lot of you spoonies have Fibro and have been wonderful in my diagnosis journey.
I’m a little relived that they’re leaning away from Lupus but also a bit nervous and depressed because there are less treatment options for fibro than lupus and other autoimmune diseases. My internist didn’t want to go the fibro route because I’m young, fairly active and I don’t have all the symptoms (no IBS–yet–thank God!). But the Rhematologist is almost positive its fibro, but she is ruling out everything else before making a final diagnosis. Fibro would account for my widespread pain and chest pain but I’d rather her rule out everything else first. She also told me to do some research, look into a yoga class and also for a physical therapist. The sad thing is, they’ve stopped looking at pain reduction and are now looking into pain management. And this is why:
Fibromyalgia is a pain disorder, not an autoimmune disease. Now this doesn’t make me(or any of you) any less of a spoonie than before. It’s still a chronic illness, just not an autoimmune illness. The fatigue, horrible pain, allodynia(did I spell that right?), light and temperature sensitivity are awful things to live with–which is why some people make major life style changes because of this.
I used to run, dance and weight train in my early college days, not to mention I was working retail and tossing around fifty pound bags of dog food every day. But as the symptoms got more intense I sort of fell out of my routine because it hurt so much to even stand. Supposedly, if you stick with it your body gets used to it and the pain actually improves so I guess its worth a try, right? I’m also looking into vitamins to help battle the fatigue since I’m probably going to have to weed caffeine out of my diet. *sobs*
I don’t exactly eat healthy…I mean…I don’t eat junk food. But my eating habits aren’t healthy. When you’re in a lot of pain, food is the last thing on your mind. I usually get nauseous when I hurt really bad so I rely on peanut butter, bananas and string cheese to get me through the day. That’s not a lot of protein. Apparently loosing thirty pounds in nine months with no noticeable life style change other than my no meat rule isn’t healthy either. This prompted my doctor to recommend me to a blood specialist–just in case. I also received a lecture about making sure I eat properly.
I am going to focus more on healthy substitutes for what I call my ‘spoonie diet’. I’m currently on a quinoa and black bean kick, I just I hate cooking. Never fear! I have it all planned out, when Anita and I move in together she will cook all the veggies in the world for me because she doesn’t eat meat either. Together we will make each other healthier. #spooniesunite!
I’m going to get back to my research and morning decaffeinated tea. I’ll write again soon. Promise.