Five things to do when you suspect this diagnosis and to help you get through the confusing symptoms.
Waking up with a ‘dead arm’ was my first symptom. At the time this anxiety provoking symptom occurred, I had just started my PhD, just bought a house and was travelling across the country. I had also moved all the contents of an entire apartment into my house. My first symptoms were quite alarming to me, as I knew I was completely self-sufficient and within a few short hours, my mind was thrown into the “What Ifs” of my life. I knew I could not be sick, especially if this was going to be something serious. That day, I immediately booked an appointment with my doctor, and when I saw her because she knew me so well, she was also concerned and that worried me even more.
My doctor and I together decided to do rule out several conditions by doing many tests. The purpose, of course, was how to get me well fast. After weeks of these tests, the doctors still did not understand what was wrong with me. Each day I saw new symptoms, such as the inability to grasp a gallon of milk or grasp a pen. The ‘dead arm’ symptom had transpired and changed into poor hand arm coordination and now my muscles were completely tense. The doctors did not know what to tell me and this was getting quite expensive. After weeks of physical therapy, I realized I had to take my own health seriously, trust that my body was telling me something was not right, and do the research myself.
I took a break from the doctors and decided to find the answers. I plugged in all my symptoms and internet search engines. Immediately, I saw that most likely, I had Thoracic Outlet Syndrome (TOC) and I realized what were the diagnostic tests that would tell me if I had bundled muscles in my chest. I was then able to get the diagnosis through the right doctor, pursued alternative treatments, and find out the best way to avoid surgery. The following is a list of things that helped me during these confusing times and my diagnostic workup. They could also help you to reduce the time you spent wondering and worrying about these troubling medical symptoms.
1. Use a journal to document the symptoms, what was going on around the time of the symptom and the physical activity that was done that day.
2. Find a primary care doctor who you trust and is experienced in rare muscle or thoracic disorders or who has a strong referral base.
3. Try as much to know your body changes and do light research on your symptoms. Trust what your body is telling you!
4. Reach out to a community or online community to see if you can relate to anyone and get support.
5. Research the best alternative treatments, and only after some healing, attempt small stretching and exercises.
The best advice that I could give to myself is to RELAX and go easier on myself. Because I feared being completely bedridden and not self-sufficient, I actually pursued treatments and exercises too soon before any healing had been done. When I started to see how my body needed to heal, that is when I could pursue a better life. I currently live almost symptom-free, but will carry some symptoms with me during stressful times.
Do you have TOC and how have you managed with your symptoms?
By: Roglesby, read more about me here.