I am not complaining, in fact I am lucky. Many people have more serious diseases and or ailments. I was diagnosed with Benign Fasciculation Syndrome (BFS) about 6 years ago. However, that diagnosis was incorrect and my diagnosis was changed to Cramp Fasciculation Syndrome (CFS) about 1 year ago. Both BFS and CFS are a type of Peripheral Nerve Hyperexcitation (PNH) disorder. More extreme types of PNH include Isaac Syndrome (many of my symptoms overlap with this syndrome) and Morvan Syndrome.
I have studied and written several blogs / articles on this subject over the past several years. You can find this material on my website: http://patrickbohan.elementfx.com/BFS.htm
I have the following symptoms 24/7/365: muscle cramping, muscle stiffness, muscle pain and fatigue, muscle fasciculations, muscle vibration sensation, muscle burning sensation, muscle pain, globus sensation and paresthesia (pain, coldness, stiffness, numbness, tingling, and pins and needles in the hands and feet). Most muscle symptoms occur in the legs but can occur anywhere on the body. These symptoms lead to some secondary symptoms such as lack of sleep, mental anguish, and exercise intolerance. People with CFS do not want to exercise, especially with any intensity which is needed to be competitive.
PNH is believed to be a disorder caused by a chemical imbalance of the potassium channel at the nerve endings. This imbalance causes muscles to fire involuntarily resulting in muscle fasciculations or twitches. Every human being gets fasciculations from time to time. However, when the condition becomes chronic major issues result because many muscle groups never rest or relax.
My muscles have an additional symptom not seen in PNH patients – they have a contraction issue as well. This is thought to be caused by an imbalance of the calcium channel at the nerve endings. My muscles, especially in the quads, look more like a sponge than liquid when contracting. About a half dozen ailments that can cause this issue came back negative. Hence, the causes for both the PNH and contracting issues remain a mystery and unexplained.
I take the maximum dosage of Carbamazepine daily. It helps to slightly reduce (not eliminate) some symptoms.
My exercise regimen lacked intensity for 5 years after my initial diagnosis. I was satisfied with going through motions. It was all I could handle. It was tough on me because I was an avid mountaineer and I could no longer do this activity without my body giving out.
The last few years I changed my goals from long mountaineering trips to short rock climbs. I also quit running and now only walk or do some short strenuous hikes. I discovered that biking is much easier on my legs. And I also surmised that I can increase intensity but for only several minutes to maybe an hour. I pay dearly for intense workouts later it the day, but I explain to people it is better than just sitting around feeling sorry for myself and wasting away. This change in my exercise program has gotten me to compete again on a bike. I even wrestled competitively again at age 50. My competition days for running are long over – my legs take several days to recover from short jogs and I even have to run “flat footed” (not pushing off the toes) to escape muscle cramps in the calves.
I do not feel like exercising, but I force myself to do something every day even if it is a mild walk. Competition is harder than daily exercise because the excitement, nervousness, and adrenalin work to exasperate symptoms ten-fold. I still have not completely figured out how to deal with CFS and competition. In fact, lack of sleep and muscle issues were so bad it forced me to withdraw from a few competitions.
I am not too sure why I can still exercise while others with the same disorder cannot, but I have a few theories: