The Mysteries of Cramping

Today, people still do not understand the true reason behind why cramping happens – unless you have some sort of neuromuscular disorder or disease where cramping is a symptom. The misconception is that cramping occurs because muscles are depleted of water, minerals and electrolytes through sweating. This is false, in fact, cramping has nothing do with the muscles and everything to do with the nerves. This was theorized back in the 1990s by Martin Schwellnus. Schwellnus hypothesized that neural signals between the muscle and spine are distorted do to muscle fatigue. A distorted signal could cause the muscle contraction signal to keep firing, hence causing a cramp. Schwellnus came up with this hypothesis after it had been proven (2 decades ago) that there is no correlation between electrolyte levels and cramps. So why do we still think electrolytes are the answer to prevent cramping?

I believe the answer is simple – the 10 billion dollar sport drink industry. Gatorade, founded in the 1960s, still to this day has commercials about how their product stops cramps. Others are doing the same thing and this is false advertising. I would say hydrated muscles complete with electrolytes would perform better than the converse, but it does not stop the process of muscle fatigue.

Scientists are finally starting to catch on to Schwellnus’s theory. Two neuro scientists – Bean and MacKinnon, have created a supplement that has ion-channel activators that controls the nerves within the digestive track which simultaneously calms nerves throughout the body making it much harder for fatigued muscles to disrupt the nervous activity between muscles and the spine. This supplement should be available on the market soon.

Of course, I have been preaching something similar for years. I have Cramp Fasiculation Syndrome (CFS). I am an avid fitness enthusiast, but with CFS exercise is increasingly more difficult due to muscle pain and cramps. People would tell me to hydrate more and drink Gatorade, but I would explain that I am fully hydrated. They would argue and say “you can’t be hydrated if you are cramping”. I would say “Oh, yes, you can!”. I am living proof of this.

With CFS, my muscles are constantly in pain and are fatigued. Why? That is the 6 million dollar question, but I contribute this to two factors. First, people with CFS have a tough time resting and sleeping properly due to all the fasciculations occurring in their bodies. It feel like bugs are crawling under my skin. Secondly, I have constant small muscle fiber fasiculations (twitching), 24/7/365. Hence, my muscles never rest and this is a good reason why they are fatigued, even before I start to exercise. And this explains why they are more apt to cramp than a person without this type of peripheral nerve disorder.

Bean and MacKinnon are working on a drug that would help people with MS and ALS who have cramping symptoms. CFS has some of the same onset symptoms of MS and ALS, but with one major difference. CFS symptoms are due to an imbalance at the nerve endings, MS and ALS symptoms are triggered from the brain. MS and ALS causes muscle atrophy in most patients. Smaller and weaker muscles fatigue much easier than normal ones. Hence, it is easy for someone to conclude muscles for MS and ALS patients can cramp easy.

People with restless leg syndrome get cramps because their leg muscles are fatigued, not because they need Gatorade. This is so intuitive to people with muscular disorders that cause cramping. Obviously, the first thing I did was drink all the time to eliminate cramping and it did not work. It did absolutely nothing to help me. I even experimented further: I found that I could ride 30-40 hard miles on my bike and the chances of my cramping was about the same whether I started on an empty stomach and 16 ounces of water, or if I ate a full meal and had 32 ounces of Gatorade. I ate and drank nothing during the ride to control the experiment. In fact, my performance was not much different in either case. With my legs, cramping is likely to kick in after 3 hours of constant exercise and that threshold could go down depending on the intensity of the workout. It could happen within 30 minutes if I am really pushing myself to the limit in say a time trial activity.

Bean and MacKinnon’s company is Flex-Pharma: http://www.flex-pharma.com/. I have written them and will see what they say about their supplements and drugs for treating CFS.

The Keys to Training

Everyone has their keys to training. I have not read any books on it, but having a neurological disorder I have found the following works training plan works for me:

Go – You may not feel like working out, but once you start you will get into it. If you do not get into a bad habit of missing days, then you will train your body and mind to want physical activity and it will feel deprived on days you miss a work out. I sleep worse on my days off – it is like my body did not get what it needed during the day.

Get a computer – Having a computer on my bike has helped me immensely. It tracks my workouts on GPS (gains and distance), speed, cadence, power and heart rate. These are great pieces of information that will enable you to put together a great workout plan. It helps you compete against yourself anyone else who may have done the rides or runs you do. For instance, data from a hill climb race I saw how much time I lost over the last 1.8 miles to other riders. I did great up to that point, so my hill climbing endurance is not where it needs to be. The downside is that a computer may take you away from enjoying rides and focusing on the beautiful scenery.

Work Out Hard – I lived on the philosophy of riding and training hard every day. I am not that gung ho anymore – I do some recovery rides and take some rest days. But most days, I really do push myself. Some think I over train, and that may be the case. However, I am willing to have shorter workouts if I work hard (1-3 hours). I do not think that is any different than people going on 3 to 5 hour rides at a medium rate of intensity.

Compete – The best way to learn and push yourself is to compete. The more I compete the more relaxed I became about doing it. This is key to me, because stressing out only makes my symptoms worse and it makes it impossible to sleep. I have to try to stay away from that vicious cycle.

Work Out Alone – I do not ride with others. It may become too easy to draft off others and not get as good a workout. There is plenty of time for drafting in races. On the other hand, riding with others does teach you how to handle riding in groups. Riding in groups can be intimidating, but competing will address that.

Cross train – Anything that works on your core is good. Unfortunately, for me, I cannot do many of the exercises I enjoyed in the past – so I stick with just cycling and some strength lifting and exercises.

Get a Coach – If that helps motivate you or gets you the tips you need to train correctly and improve.

Train at altitude – It has really helped to expand my VO2 levels. This is one way to naturally dope your body with red blood cells.

Get good gear – It is very easy to be stingy and get cheaper gear. Good gear is better. I have not spent anywhere near what others spend on the race circuit. They have multiple bikes for competing. I have one bike, but it is a good bike. I convert it between a time trial bike and road bike. I still do just fine without a specialized time trial bike, but the key is that I got a good bike.

Enjoy pain – The few times I have ridden with others I can hear them say “Oh crap here comes a hill” while at the same time I am saying “Oh boy here comes a hill”. I accelerate to the hill with joy while others put their heads down before they even hit the hill. Maybe it is easy for me to enjoy pain because I already live in pain – so what is the difference? I probably suffer more after similar workouts than others so I do not know if that is a good reason. However, I can tell the difference between good and bad pain and more good pain is a definitely a good thing especially if it masks bad pain.

Improve – I am not happy if I am not improving. If you are not improving change things up. Competing is a sure way to get better.

Enjoy life – I am grateful for every day I get. I had my scare that I was dying of some neurological disorder. Now I understand that I am lucky, I get to live with paresthesia in the hands and feet, irritable bowls, and muscle pain, fatigue, stiffness, and cramping. This may not sound like a bunch of joy, but there are so many people that have it worse than I do – so I truly believe I am really lucky.

Listen and Learn – A lot can be learned from other more experienced people in your sport.

Evolve – If one sport is not working out so well, do not be afraid to try other sports. I found cycling after other sports washed up for me. It sounds crazy that I can bike but at the same time I have a tough time walking without lots of pain. I have pain in cycling but trust me it is so much more tolerable than the pain I have from other activities.

Live in the Moment – I used to fear how long I could cycle – I figured it was just a matter of time before that became too painful or dangerous due to paresthesia symptoms in the hands. That day may come much sooner than later, but right now I am going to live in the moment and try to enjoy what I have.

Never give up! – It is easy to quit. I could have quit a long time ago. Instead, I quit some other activities and moved on to another section of my life.

Do Peripheral Nerve Disorders have any Benefits?

Do peripheral nerve disorders have any benefits? Maybe but probably not, and if yes, the negatives surely outweigh the positives. But a person actually asked me this question, a question I never thought about in the past, and it got me thinking. For most people I think the answer to this question unequivocally no. For me, I do think there are some benefits.

Paresthesia, muscle stiffness, muscle cramps, and muscle fatigue and pain are all bad. These symptoms hamper everything I do in life. However, I started to wonder if fasciculations are all bad. It is true, my symptoms bother me too much to jog and do many sports. But for some reason I can cycle and I can do this at a fairly high level. So why is it I can do this (which is probably temporary as my symptoms progress)? Why is the symptom of exercise intolerance avoided for this activity? When I was competing at the Master Nationals time trial championships I met a fellow rider who had the same experience I had with BFS / CFS. He could no longer run, but he could compete at cycling at a high level (much higher than myself I might add). How is this possible?

First, I believe fasciculations are constantly exercising the leg muscles and making them somewhat stronger. 24/7/365 fasciculations can wreak havoc our lives and led to many detrimental symptoms, but they can also keep legs strong and lean.

Second, all this activity helps maintain my weight and keep me light (I am by no means a small cyclist, but I am not large either). Small is good in cycling – you need to produce less power to maintain higher speeds. I suspect we may lose a couple hundred calories per day because of this constant muscle activity.

Third, the pain from BFS/CFS seems to mask a lot of the pain I would feel from cycling workouts. In order to be good at any athletic sport (especially individual ones that are races against time), you need to tolerate huge amounts of pain. In fact, I broke my leg in a fall (a chipped bone in my shin) and sure it hurt, but not enough to stop cycling or competing. The doctor said the pain and or discomfort from such an injury would have forced many to stop most activities and it would certainly affect performance – Not me. Granted, it was not a bad break, but it was a break nonetheless.

To conclude, and this may sound weird, but if people with peripheral nerve disorders are able to overcome their symptoms and force themselves to become active and exercise, they may be able to benefit from their symptoms. Well, at least to a very small degree. So much of what gets printed about peripheral nerve disorders is negative, I am merely trying to find some positives that some people may be able to build upon.

Is it Possible to have More than One Peripheral Nerve Disorder?

Is it possible to have more than one peripheral nerve disorder? Three years ago I would have said it is highly unlikely – like a 1 in 10 million chance. However, today, I am convinced the prevalence of a peripheral nerve disorder is much higher than I originally anticipated. It would seem the likelihood of getting a peripheral nerve disorder would be much less than 1% (1 in 100). If 1% were the case, they garner more attention. But I am starting to believe that 1 in 100 is much closer than my original estimate of 1 in 10,000. If the odds are 1 in 100 then the odds to have more than one peripheral nerve disorder is 1 in 10,000, meaning up to 32,500 people in the United States can have two peripheral nerve disorders.

Several years back one neurologist opined that I have both Raynaud’s Syndrome and BFS. I thought the two were related and the symptoms were caused by just one peripheral nerve disorder. I told the neurologist that the chance of that happening was 1 in 10 million! I still believe I was right in that case, I only had one peripheral nerve disorder, but my math was wrong. I changed my mind about the probability of having a peripheral nerve disorder a few years back when I was diagnosed with a muscle contraction issue. It is very prevalent in my quad muscles. Essentially, my muscles do not contract fluidly, they contract like a sponge. It is estimated my quad muscles contract about 12 times slower than normal.

My theory is that this issue has basically eliminated any fast muscle twitch I had. I notice when I cycle I do not accelerate into a sprint very well. Once I get myself into a set pace, I am fine, but to change speeds it seems I am much slower than my competition. Other than this, I do not see any negative effects on my lifestyle from this anomaly. Hence, it is highly plausible that more people may have muscle contraction issues but may not have seen a doctor about it. Why? It does not affect their lives. Mine was only discovered because I was being evaluated for BFS/CFS type symptoms. I suspect, disorders such as rippling muscle disease are more prevalent than 1 in 10 million.

BFS is a muscle firing problem caused by an imbalance at the potassium channel at the nerve endings whereas contraction issues are caused by an imbalance at the calcium channel at the nerve endings. They are mutual exclusive and therefore, I do have more than one peripheral nerve disorder. This was verified by neurologist who said he has seen dozens of patients with BFS and none of them have contraction issues with their muscles as a symptom (I am unique in this respect). He tested me for lots of potential causes but like my BFS, the origins are unknown.

This really got me to believe the probability of getting a peripheral nerve disorder is much higher than I originally anticipated and I believe these odds are increasing over time. This is a hypothesis, and I cannot prove it, but the quantity of people in my BFS survey is a little bit of data to support this theory.

I posted a very brief video of me punching my quad muscles to show that they react much differently than a normal quad muscle – they are not fluid:

https://www.youtube.com/watch?v=M59D3jQtMgQ

The below video (very brief) shows what appear to be fasciculations in my right quad. However, I have quad muscle flexed (okay do not laugh at my chicken legs) and generally you cannot see fasciculations when the muscle is flexed, just when it is relaxed. That is why I am not sure what you are seeing is fasciculations – I actually believe when my leg is in this state the muscles are confused as to whether contract or fire and it cause a fluttering motion (much more prominent in person than on film).

https://www.youtube.com/watch?v=rOM2XXcnZPs&feature=youtu.be

Cycling and BFS / CFS

Seven years into my diagnosis of BFS/CFS my exercise intolerance continues to get worse. CFS/BFS are benign disorders because they will not kill you, but that is not entirely true. If a person can no longer exercise, they will waste away and die younger. And there is nothing benign about worsening symptoms that are debilitating. Many sports I performed a few years ago are becoming much more difficult to perform – hiking, rock climbing, wrestling (some things are considered too dangerous such as rock climbing with paresthesia symptoms in the hands) and so forth. Even walking is becoming exceedingly difficult – lots of pain and discomfort and longer recovery times.

Cycling is the one sport I am able to do with less pain and in fact I am able to do at a fairly high level. I am astonished as to what I have accomplished in the sport this year. Right now, cycling is saving my life. I do not know what I would do without it – I believe I would be becoming a burden on my family. I am not too sure how long I can keep it up, but right now I am living in the moment and trying not to worry about it. I have plenty of pain when I cycle but it is far more tolerable.

This past week I competed in the National Senior Games in Minneapolis Minnesota. I placed 10th and 14th in the two road races, but 3rd and 7th in the 10K time trial and 5 K time trial respectively. This exceeded my wildest expectations. My times have improved by nearly 2.5 minutes in the 10K time trial in just over the past year. Yes, I invested in better equipment, but I am still the only person competing in time trial events with a road bike and not a specialized time trial bike.

Each day is difficult, I wake up stiff and in a lot of pain. I force myself to cycle and usually feel better for doing it. My rankings in USA cycling continue to rise steadily. At the Colorado state time trial championships I won Category 5 (although not officially recognized) and broke 1 hour for the 25 mile time trial. That is a huge barrier, breaking 25 mph for one hour! On shorter events I am now breaking 26 mph. Even my training runs are a lot faster. I have taken 10 minutes off my time to do the 4000 feet climb and 18 miles to the summit of Cottonwood Pass. I am on a roll and rank 18th in the country for Category 5 Time Trials.

BFS and CFS changes lives, but it is not over. We have to work that much harder to succeed. I remind myself everyday how lucky I am because people have it so much worse than I do. This helps me to stop feeling sorry for myself and to push forward.

My USA cycling results can be found at (This does not include my results at the Arizona, Colorado, and National senior games):

http://www.coloradocycling.org/results/individual?usac=457284

Evolve or Die

When a person is hit with adversity, such as a disease or debilitating condition, it will change your life forever. Activities and every day actions that we routinely took for granted in the past have become no longer possible or much more difficult to accomplish. Simple things, like getting dressed in the morning have become more of a challenge for me (mornings are difficult until some of the muscle stiffness goes away). I was diagnosed with a “benign” nervous disorder – Cramp Fasciculation Syndrome (CFS) – and also have some muscle contraction issues. CFS is benign only because it will not kill you, but it can be debilitating and therefore could eventually kill you due to inactivity. I am an avid fitness person, but hiking and running became more and more difficult to do. Although these activities are not impossible to do, the pain and recovery time was just too much. Rock climbing became impossible due to dexterity issues in my hands and feet caused by paresthesia symptoms (it was deemed as being no longer a safe activity). Doctors also advised against wrestling (feeling it too was no longer safe). Unfortunately, many people with chronic Peripheral Nerve disorders such as CFS resort to inactivity. It is just too painful and sometimes unsafe to exercise. However, I am a true believer if we do not evolve, we will waste away and die.

With many past fitness activities becoming harder and harder to do, I turned to biking and now competitive biking. For some reason biking works best for me. Is it still hard and painful? Absolutely. It seems to have made my paresthesia worse in my hands and feet. What’s worse, my right leg muscles including my quads are going numb. That being said, I am still pushing forward because I have less leg pain after exercise. I do not know how much longer I can cycle – 1 year, 5 years, or the rest of my life – who knows. But you only live once and got to make the most of it. After all, I know there are many more people with worse diseases or conditions – so I have no reason to feel sorry for myself and give up.

I have a lot to learn in cycling, such as bike handling skills. I think some of these skills are diminished due to CFS symptoms – paresthesia, balance issues etc.. I believe I will get better, but how much better is the real question.

You can track my USA Cycling results on the below website:

http://www.coloradocycling.org/results/individual?usac=457284

I am currently riding in the lowest category (5). But I am ranked 16th in the country for Time Trial racing in category 5 (all age groups). I would still rank in the top 100 nationally for a category 4 racer. My road racing rankings are not that great, but they are getting better. Colorado is a very large and competitive group of racers (one of the toughest states in the country) and that makes it easier to improve.

I am trying to evolve so CFS does not get the best of me - both mentally and physically. Maybe I am making symptoms worse, but I do know that I feel better about myself when I exercise and fight through it all too even compete at a fairly high level. I also believe that by giving in to this disorder and being inactive will make my health worse, even if symptoms do not progress. I am positive I am making the right choice.

Simply put, I advise people with Peripheral Nerve disorders to evolve and find those activities that they can do (with less pain) and live. We only get one shot at playing the game of life, we must make the most of it.

Exercise, Competition and Peripheral Nerve Neurological Disorders

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: 2^nd

Washington State Peninsula Senior Games:

20 mile time trial: 1:03:00 (1^st in my group – on a rental bike, 4^th overall)

South Dakota Senior Games:

Cycling:

20K: 34:48 (2^nd)*

10K: 17:09 (2^nd)*

5K: 7:47 (2^nd)*

Track and Field:

High Jump: 4’2” (2^nd)*

400M: 1:22 (3^rd)*

Long Jump: 12’0.5” (3^rd)*

Standing Long Jump: 7’0.5” (3^rd)*

Nevada Senior Games:

Cycling:

5KTT: 9:19 (4^th missed 3^rd by less than 0.3 seconds – was uphill 250 feet)*

10KTT:16:42 (3^rd)*

20KRR:32:08 (3^rd)*

40KRR: 1:08:12 (5^th)

Utah Senior (Huntsman) Games:

Cycling (Class 3):

5KTT (1000 foot climb): 15:33 (1^st in group, 9^th overall out of nearly 300 riders)*

37KRR: 1:05:06 (1^st in group and overall at this distance)*

Mountain Biking (Beginners Class):

1.5MTT (500 foot climb): 10:03 (1^st overall in beginners)

2MTT (700 foot descent): 9:06 (1^st in group, but pretty slow overall)

4MCC: 20:03 (1^st in group, 2^nd in beginners)

K – Kilometers, M – Miles, TT – Time Trial, RR – Road Race, CC – Cross Country