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:
· Acclimation to a disorder may be the most important item in dealing with any disorder. Unfortunately, most people do not have this advantage – the disorder just hits them hard over night. Whereas, I was suffering from BFS and or CFS at a young age (I just did not know at the time). My symptoms have slowly progressed over my lifetime. This has helped me acclimate to the disorder.
· Pain tolerance can play a role in overcoming exercise intolerance. Pain is relative and I am not saying others with CFS have less pain and I have more pain. However, the fact I was physically abused as a child may have provided me with more pain tolerance as an adult. For instance, as child I had to live with broken bones that were not treated.
· Overachieving is paramount. I do not necessarily compete against others, but myself. I work each day to improve my times. Besides, I am always out to prove people wrong. Every time someone like a teacher or parent suggests you should not go to college or a doctor says you cannot exercise with intensity anymore – I want to show them they are wrong. After all, nobody likes being told what to do. When I put my mind to something, I am driven and will get it done. I have always been stubborn and an overachiever.
· Exercise redundancy is key to training the body and mind. I was an extreme athlete and have exercised my entire life. Intense workouts were common for me throughout my life. I also find it helpful to work out every day. In other words, it is important to train our brains and bodies that we need exercise and to feel bad if they do not get it.
· Adaptation is important – it is okay to change goals. Darwin’s theory of the survival of the fittest applies to all living things including humans. Hence, humans must also learn to adapt when they are hit with life altering adversity. The mistake many people make with CFS is to try to do the same types of exercise they did in the past. But this may not work. I was an avid runner and my body no longer likes this type of workout. I went from running 5K in 20 to 22 minutes 6 to 7 years ago to nearly double those times today. And what’s worse, my recovery time is several days if not weeks if I have bad cramps and pulled muscles. I have adapted and now hike and bike which seems more bearable for my body. If we do not adapt our exercise program than we will perish from heart disease, cancer, or diabetes.
· Acceptance of any disorder is key to moving on with life. Many people with BFS or CFS continually fear they have a worse ailment such as ALS or MS. After all, many BFS and CFS symptoms are onset symptoms to these deadly disorders. What’s worse, it is hard for educated people to accept what they have is benign especially if doctors cannot explain what causes BFS and CFS. Since there is limited research on BFS and CFS doctors know little about the disorder and cannot answer simple patient questions. In fact, I have seen 5 different neurologists looking for answers. Thus, it is hard for people to accept what they have and finally move on with their lives. But not being able to accept and move on causes a great deal of stress and exasperates symptoms.
· Managing stress may be the most pivotal thing we can do for a healthy lifestyle. Stress can wreak havoc on our lives and it can exasperate symptoms in BFS and CFS patients ten-fold. For the most part, I am doing a better job managing my daily stress factors. One thing that has helped me on this front is, for example, having a set daily routine.
· Draw inspiration from others. My climbing partner has Parkinson’s disease and my doctor has one leg. Both are great athletes and inspire me to fight through my disorder.
· Put your disorder into context. I have said it before and I believe it: “I am lucky”. There are people coming home from war with no limbs so where do I get the audacity to complain about a benign disorder (although I do not actually believe CFS is a benign disorder as doctors’ claim). There are literally hundreds of neurological disorders and BFS and CFS are probably two of the best you can get. Most are crippling and deadly. I always tell myself: “It can always be worse”. This puts you in the right mindset to move forward.
· Finally, I was always taught not to complain unless I can do something about the problem or issue. I am using my engineering and data analysis background to do a statistical analysis on these disorders. Still, I am trying not to complain too much (it is hard).
I have qualified for the National Senior Games in Minnesota in 2015 in cycling and a few track and field events. I am not sure if I will enter, but if I do I will do so in cycling. Track and field is much too difficult on the legs. I tried some shorter running and field events where running distances would be shorter. Still, the pain and subsequent recovery time from these events was too great.
I do not care if I finish last, which may very well be the case since I am at such a huge disadvantage. My bike and gear cost me about $1000 dollars (however, I am planning on upgrading this winter). Others will be competing with about 10 to 20 thousand dollars in state of the art cycling equipment to minimize drag. That being said, I would like to be competitive and I am afraid my disorder will get the best of me. I do not want to go to Minnesota only to withdraw because my body is going bonkers since I cannot sleep or rest. I need to figure out how to overcome the combination of CFS and competition. Part of my plan to overcome this issue was to enter several events in the second half of 2014 to see if my body can get used to travel and competition.
I believe there is one reason to account for the fact that my transition back into competition has not been smooth: Personality types. During my research of CFS and BFS I have noticed patients are more than likely Type A personalities. Type A personalities are more likely to get stressed out over little issues and are driven to succeed. Competition is a change to my daily routine and it stresses me out. I continually worry about miniscule things such as did I pack a toothbrush or did I check the derailleur on my bike when I should be sleeping.
Many people do not believe me when I tell them I have a neurological condition. They tell me that I look fine. But I try to explain to them that outward looks can be deceiving and hide what is going on internally within my body. It is impossible for anyone to understand how I feel unless they too have similar symptoms. And it is certainly impossible for anyone to understand how my condition affects my performance. For instance, in a short 5K cycling time trial I may have to adjust my position several times to overcome tightening muscles, burning muscles, and stiff and numb muscles. To make matters worse, I start to feel like I am chocking to death when I push to maximum output wattage – part of the globus sensation in the throat. Obviously, it is not ideal to move around on a bike – it is best to stay in one aerodynamic position. However, this is nearly impossible for me.
My biggest fear is that eventually my exercise intolerance will span all exercise activities making it impossible for me to not only compete, but to exercise period. Unfortunately, I believe that day is coming, but hopefully that will be a few decades down the road, and not a few years. I say this because my symptoms are worsening over time.
I do not tell my story looking for any sympathy or to brag because I can exercise and compete with a neurological disorder (If you look at my results below they are not top tier by any means. Besides, I cannot say for certain how much the disorder hurts my results since I have never been a great natural athlete to start with). I tell my story because I have been on a mission to bring more exposure to CFS and BFS. I would also like to help motivate people to exercise, compete, and live healthy lives – even if they have a disorder. We are only on this earth for a short period time and we have to make the most of it!
Here are some of my results this past year (* indicates the event result qualified me for the 2015 national senior games in Minnesota):
Old Timers Wrestling Tournament: 2nd
Washington State Peninsula Senior Games:
20 mile time trial: 1:03:00 (1st in my group – on a rental bike, 4th overall)
South Dakota Senior Games:
Cycling:
20K: 34:48 (2nd)*
10K: 17:09 (2nd)*
5K: 7:47 (2nd)*
Track and Field:
High Jump: 4’2” (2nd)*
400M: 1:22 (3rd)*
Long Jump: 12’0.5” (3rd)*
Standing Long Jump: 7’0.5” (3rd)*
Nevada Senior Games:
Cycling:
5KTT: 9:19 (4th missed 3rd by less than 0.3 seconds – was uphill 250 feet)*
10KTT:16:42 (3rd)*
20KRR:32:08 (3rd)*
40KRR: 1:08:12 (5th)
Utah Senior (Huntsman) Games:
Cycling (Class 3):
5KTT (1000 foot climb): 15:33 (1st in group, 9th overall out of nearly 300 riders)*
37KRR: 1:05:06 (1st in group and overall at this distance)*
Mountain Biking (Beginners Class):
1.5MTT (500 foot climb): 10:03 (1st overall in beginners)
2MTT (700 foot descent): 9:06 (1st in group, but pretty slow overall)
4MCC: 20:03 (1st in group, 2nd in beginners)
K – Kilometers, M – Miles, TT – Time Trial, RR – Road Race, CC – Cross Country
