My Story

I am a senior in college and over the past few years I’ve been discovering answers to some medical issues I was having making school and work more challenging and sometimes what I felt was impossible. First off I get migraines, some put me in the emergency room all day others kept me home from class, work, and led me to cancelling plans with friends often. I finally got professional help 6 months ago, only hesitating in the past due to money and a lack of anyone to talk to about it. My neurologist prescribed me medicine to help prevent migraines as I was getting sometimes up to 3 or 4 a week at the most. The medicine helped tremendously to the point I was mad at myself for suffering so long without it. Around the same time I had the first appointment with the neurologist, I had another problem arise. I had terrible pain and stiffness on the right side of my jaw. I went to my dentist thinking it was a tooth problem, who referred me to a specialist that treats TMJ disorders. That specialist made me a splint, prescribed me antinflammatory meds and a muscle relaxer. I think the muscle relaxer more than anything has helped but I go days feeling like I’m cured and then days of my jaw and muscles on the right side of my face spasming, aching, and hurting to chew or open and close my mouth. It is a current issue as of today. My migraine medicine stopped working after two months so my dose was doubled and has helped since. Now the third part of my story, the reason I’m joining this community is the symptoms I believe are fibromyalgia. It started months ago, I felt sore all over my body on my skin and muscles as if I had had a hard workout the day before and everything hurt. I remember going to bed that night and was shocked when the blanket brushing on my legs hurt and I became concerned. After about 24 hours I was back to normal. A couple weeks later it happened again. It felt like all my muscles hurt and my skin was sensitive. I remember driving in the car with my friend that day telling her it felt like I was sunburned all over as I leaned forward driving so that my back wouldn’t touch the seat as that was painful. Changing clothes was the worst. I didn’t want to feel the fabric press against my skin making me ache all over. For about two months this reoccurred about every two weeks. After the first two times I began to think something new was happening. I didn’t know if it was side effects from all the medicine I’m on or a separate problem. Either way it was frustrating not knowing. The third and fourth month this pain became more frequent, happening once a week and then twice. I noticed that some days all my skin was sore but it was much more subtle than the worst days. The fourth and fifth month of experiencing this became worse because other symptoms accompanied the pain. Fatigue hit me so hard I would regularly sleep once a week from 12-19 hours at one time. This would happen when the pain was bad once a week. I would spend two days doing nothing but laying on my couch in soft cloths and rested and slept until my energy came back and the pain went mostly away. This is stressful to happen as a busy college student who is overwhelmed with studying and work. Now I get tired every 2 or 3 days. If fatigue hits me, just going out to lunch with a friend or to a movie feels like I haven’t slept in a week once I get home. Another symptom was brain fog. This brain fog was happening from the start but I didn’t recognize it as being connected until recently. I would become so mentally exhausted it felt like my thinking slowed down, I couldn’t concentrate, I would become emotionless and not energize enough to socialize with people at work or friends when it was bad. The most embarrassing and scary for me was forgetting what I was saying in the middle of a sentence. Every time this happened my heart would race as I tried to remember what I was talking about and I was so embarrassed after it happened with a co-worker. I cried at home that day not understanding what was happening. Some of my friends made fun of me joking how bad my memory is. While one close friend was understanding and was used to it, but it still makes me feel dumb and ashamed. The last symptom to build on all the others was my body temperature going out of whack. Once a week when this problem is at its worst I usually get cold. One time I had the chills for 3 hours. I gently piled blankets on me and it took an hour and a half to warm up again. Other times when the pain was bad it felt like heat radiated out of the skin where I was most sensitive. I got scared but something told me it was probably related to all my other weird symptoms. When my muscles and skin hurt all over it effects me from head to foot but is worst on my arms, thighs, and back and sides of my torso. Even now areas on my scalp are tender and painful to touch and is terrible when I brush my hair. I have to shoo my dog away so he doesn’t touch me and so his tail doesn’t hit my legs. Bumping into furniture was the worst and I learned quickly to slow down and be extra careful. Now this whole ordeal is becoming expected and is becoming a ‘new normal’ but I don’t want it to be. Every time I googled my symptoms fibromyalgia is all that pops up. I’ve read a dozen articles that have stated how TMJ disorder and fibromyalgia are extremely commonly connected which shocked me the first time I read that because it was that moment I knew what I had. I have messaged my neurologist about these symptoms and have yet to hear from him. I feel a lack of support and a lack of answers from him that make me almost want to find a new doctor. None of my family know what is going on, they only know I get migraines which is thankfully at the moment the least of my problems. I am just looking for a community of people who don’t think I’m crazy, who are in the same boat, and who may be able to teach me more things about fibromyalgia as I know little. I hope to talk to people that knows how it feels to be surrounded by people who don’t realize how much of an act you are putting on to look and feel happy, energetic and normal. Who don’t realize you have had to build up the energy to go out and will have to recover from it for days at home. Who don’t see the invisible condition that I fear is starting to control me. I hope to find a way to improve my living because right now I’m scared it will keep me from doing what I want in life. I’m studying to be a teacher, I am 22, and I don’t understand why I have these medical problems or how to manage them. I take some comfort knowing I am not alone.