Here is the list of symptoms that have been strongly present since late September.
1. weakness and fatigue. I was winning bike races and riding 14-16 hours a week. Now able to do zero exercise. Sleeping 3-4 hours longer than previously if not woken up. Find myself getting out of breath doing simple things like walking around. My 10 mile bike commute to downtown is totally out of the question.
2. Bowel issues- not always diarrhea. These symptoms are varied. Generally stomach gets more and more upset as each day goes on. 90% of the time any meal prompts a bowel movement 20-60 minutes after. On bad days sometimes will have 2-4 bowel movements after lunch and after dinner. I have kept a food journal (actually have for most of last 3 years) and there does not seem to be much rhyme or reason. Bowel movements range from almost pure water to a normal consistency. They are never normal colored- for a while they were very dark brown, then grey or light tan, recently a dark forest green.
3. Aching back. It could be because of tightness in my stomach, maybe not?
4. Exercise induced acid reflux? Never realized I had this but prilosec and tums taken before exercise do seem to alleviate part of my symptoms (currently just leaving my achy and fatigued, where previously I felt even worse while exercising. Previous symptoms included burning throat, aching that I thought came from glads under jaw, headaches).
5. Minor weight loss. The doctors don't think this is a big deal because it's only a couple of lbs. I think it is because during the same time period I've also stopped riding a bike 14-16 hours a week and not watched my diet much. My appetite has generally been good throughout but I have noticed that I feel full sooner than expected. Often I'm hungry again relatively soon. I've been snacking throughout the day more than eating in order to try to tame a lot of these symptoms and that has had mixed results.
I have also noticed other issues that may be related
1. Difficulty sleeping. Once awakened during the night my heart seems to race. Feel panicky. Can take over an hour to control this and get back to sleep.
2. My beard is thinner (my hair has always been thinning).
3. Knee pain has increased despite relative lack of use. My left knee cap doesn't track right and there is some damage to cartilage in there. This has flared up despite minimal use.
4. On a couple of occasions I have felt dizzy, foggy in the head etc.. pukey with no real reason. I did have these symptoms very heavily one day where I was forced to leave work and go to bed around 8pm due to their severity but I think that was due to improperly washed quinoa (which I know sounds weird).
5. Multiple cold sores. I do not have a history of having cold sores.
6. Sexual performance/drive is down (this correlates strongly with the days/weeks when I have worst stomach symptoms)
6. Sexual performance/drive is down (this correlates strongly with the days/weeks when I have worst stomach symptoms)
On a longer time line I've had these issues which may not be related
1. Heat sensitivity. Over the last 3 years I've gotten progressively less able to function athletically in warm weather. I become fatigued easily, develop a terrible headach and basically shut down. I am unable to keep up with the overall field in bike races, where in cooler weather against the same fields I win or podium. Initially these symptoms only showed themselves in longer events with very high temperatures and humidity. Last summer I had trouble even in the 80-85 degree temperature range. I have basically quit mountain biking and reduced my road racing schedule due to this since most of those races are contested at such temperatures in the midwest.
2. A sometimes painful bump between my anus and tail bone has developed along with fairly constant anal itching. This has come and gone to a degree for 2 full years.
Medical history this year-
I felt very strong this year until the middle of June when the temperature started to go up. In July I was unable to finish any of the road races I entered due to heat symptoms. Eventually I went in to the doctor and was given an antibiotic which seemed to help and I was able to train and race reasonably well late in August and the first 3 weeks of September. I won a couple of races and had a good showing at a big CX race in Madison.
Starting in the final week of September things have just fallen apart. At first I didn't see the pattern and just tried to rest more and skip some workouts. Eventually I realized something real was going on as the bowel movements started to increase more and more. In many of my cyclocross races I was only able to ride 5-10 minutes. I had a hard time riding at all during the week.
I went to the doctor (Dr. Podein) at the end of October in Lake City. I was given a general blood test, tested for mononucleosis etc. and then referred to a specialist here at Mayo.
Dr. Nehra here at mayo met with me and then recommended a flexible sigmoidoscopy. This found nothing. I tried to press her for more information and more testing but got no where. I used the internet to determine that all she had ruled out was ulcerative colitis? Never did she tell me what she was testing me for or what I should be worried about. I did not feel she took me seriously. While there I had her check out the bump thing by my tail bone and she said it looked like a scratched pimple. She also had no concern about the cold sores. At that point I was sort of freaking out because I was (and am) afraid that I have crohn's and that those could be part of the larger picture.
I went back to Dr. Podein having exhausted my options with the specialist. He ordered another general blood test and checked my thyroid levels. Everything looked normal. He was out of ideas and suggested I try omeprazole for two weeks.
After ten days on 20mg of omeprazole each morning I felt about the same and came in last Monday to see a doctor Addissie in Rochester (Dr. Podein has left Lake City for a new job in Madison). I explained my symptoms to him and he decided to perform an EBD. I got the next available appointment and that procedure took place on Tuesday. I expected results in 24-48 hours per the piece of paper that I was given. I had heard nothing this morning so I called the appointment line and was told that Dr. Addissie was both in the office today and had received my results (but that the person on the phone couldn't tell me anything more). She offered to send him a note to remind him to contact me. At 3:30 today I still hadn't heard anything and I called again. The conversation was an exact repeat of the 10am conversation and the results were the same.
Now I have to wait until Monday for results and am finding that very stressful. This weekend is also the state cyclocross championships which one of my main goals all year cycling wise besides the actual national championships next month. I'm going crazy here.
Other notes-
I've been taking various probiotics throughout this time period as well as eating tons of yogurt
Immodium keeps me from having a bowel movement for a while but I haven't been taking it because my stomach still hurts and that just makes it hurt longer (no relief by pooping it out).
I stopped taking the Omeprazole and saw Dr. Addissie multiple additional times. He even tested my heart (seriously- if this had been my heart deteriorating that fast I would have been dead in a hurry!) with echocardiogram, event monitor and an exercise test.
At that point I was told I could not get a referral to see Endocrinology (where a friend had talked to a doctor who had agreed to see me). I realize that might have been a shot in the dark, but instead they told me to give it 6 weeks.... sent me on my way.
I know that is super long and all and probably not interesting for anyone to read. For a while there I was searching for non-medical reasons as to what was going on. Was I doing too much? Was I not sleeping enough? Did I just suck? In the end none of those things really fit.
I keep a lot of information about what I eat, when I sleep, how much and how hard I ride etc.. Some of my competitors/friends wanted to say I was overtrained (maybe they were even trying to be helpful) but I think that says more about them and their wanting to beat me/be stronger than me than anything else when I look at the data.
Anyways, I did start to feel better a bit and was able to ride about 11 hours a week on average for the last 8 or 9 weeks. I felt I was getting stronger and I lost a bit of the weight I had put on while doing nothing. Things were looking up. Triple D didn't go as planned, but I had felt strong until dropping due to knee pain. I was excited for the coming season. I rode 80+ miles on the fatbike pretty strongly one day. Was starting to feel strong when riding with my normal friends and riding partners. I was still only riding about 10 hours a week, trying not to push it too much (and it's been sooooo cold).
Then over the course of the last 2-3 weeks the stomach symptoms have crept back. I was dead beyond all reasonable belief at CIRREM. Dropped by mile 12. Nothing like the fitness I thought I was showing just 2 or 3 weeks ago. In fact, less fitness than I would have expected to have if I had broken my leg the day after the Filthy 50 and literally not ridden a bike since.
I made a new appointment to see the doctors here at Mayo. This time with a new individual doctor. I had become very frustrated with the fact that Dr. Addissie never responded with my test results in a timely manner during the late fall. I had even requested to see another doctor once at the time, but when I showed up the appointment had been switched to see him.
At my appointment on Monday I explained the situation and why I was back. We looked over my previous testing etc.. and then he started asking questions about my mental health. Was I depressed, anxiety etc.. drug use? alcohol problems? It seemed he really wanted to give me some sort of depression drug? Finally, he went and consulted with some other doctors and decided to rerun some of the same blood tests previously done and gave me a pamphlet on IBS and an appointment with a dietician.
I am losing it. Doubting myself about everything now. It's been so long since I've been able to compete or even to finish a bike race. I know I shouldn't doubt that I'm actually sick here at this point and that there has to be something, but when I talk to the doctors I feel literally insane. They don't seem to believe anything I say. I know I don't look like the fittest guy in the world, nor am I the fastest but I was pretty fast last year before this all started, wasn't I? I'm worried that I don't look fit enough for them to take seriously. I'm worried they just don't even want to deal with it as it's become "difficult" (the doctor actually said "you've become difficult" to me on Monday). I'm worried they just want to wear me out and have me go on my way. What a mess to potentially have all these things there are no answers for, or not to have them. Or not to really even know if I have them and just to question myself.
I'll share more as I find out, it's been hard to figure out how to. I know this is disjointed and random, but I feel better having written it out.