My life has changed in the last 9 months. I used to be very active. Running half marathons, training for a 100 mile bike ride. The beginning of last July, after a typical bike ride, I felt a lot more fatigued that I normally would be after a ride. The next day the symptoms did not improve. I did not ride my bike that day. I then took a trip to my parents house to go golfing the day before the 4th and needed several ibuprofen to make it tolerable. Over the weekend I developed a fever. So I went in to the clinic on Monday to find out what was going on. I figured for sure that it was strep throat. Deep down I was hoping it was not Lyme disease. Strep came back negative so we did blood tests which included a Lyme test. The doctor figured to be safe I should start the antibiotic just in case it was Lyme disease and I agreed. 3 days later I found that it was negative but stayed the course with the antibiotic because the possibility of a false negative.
During this time I was riding my bike a little bit and gradually ramped up to a two 40+ mile bike rides in a week near the end of July while I was still on the antibiotic. The day I quit the antibiotic, I rode my bike again and felt very tight and sore the rest of the day. So I asked my doctor what it could possibly be and he figured it was out of his scope and referred me to an orthopedic doctor and physical medicine doctor.
I got X-rays and MRI’s done of my pelvis and lower back in July to see if it was pinched nerves causing the pain in my legs. Nothing was showing up that would cause this pain. I went and got an EMG done. I scared myself half to death of this test as I heard about needles and such. It wasn’t near as bad as I thought it was going to be. It was painful, but not overbearing. This also did not show anything. I was fearing a nerve disease. Course, when nothing is showing anything, you fear the worst and hope for the best. Not knowing anything was starting to wear on me. I was then scheduled to see a neurologist. Only had to wait 3 months.
This neurologist I saw in October and November was phenomenal. She listened to my back story and figured for sure something strange was going on. She ordered 20 different blood tests and urine tests. Man do I love needles so I was really looking forward to this. Good thing the floor and leaned back chair were there to hold me up. I didn’t pass out though cause I am really tough. I had so many odd blood tests the lab tech didn’t even know what half of them were. These lab tests came back negative for things like Lyme’s disease, Celiac’s, and a litany of other things. I did have some high marks in a few things that led her to believe that it might be a metabolic myopathy called CPT II deficiency. After our second meeting, she figured she needed to pass me on to a neuro/muscular doctor because my case was not leading down a neurologists pathway.
What is CPT II you might ask? So did I. Turns out it is a pretty rare genetic disorder that has only a little over 300 diagnosed cases in the United States. Told my wife instantly that she married one in a million. She didn’t quite see the humor. To find out if this is the case or not, I would need to do some further testing at a specialty hospital. They would need to do a muscle biopsy and/or genetic testing to see if I have any metabolic myopathy’s. Best thing is I had to wait until March in order to see this speciality doctor. 3 month waits have made me a google doctor and I have correctly diagnosed myself with 35 different possibilities of what it could be.
The day of the appointment arrived and I was nervous and excited to finally be going. Appointment said muscle dystrophy instead of metabolic myopathy so I quickly asked my google doctor what those were and they were nothing good. Drove the 3 hours to the appointment. A resident neurologist came and did a history with me and did a bunch of the same tests that my prior neurologist did. She then told me it was not a muscle dystrophy which made me happy but she didn’t know what it would be so she said wait and see what the specialty doctor thinks. He walks in and does a few tests and then asks me if anyone else in my family of 11 siblings has anything like this. I say nope. Asks if I have been healthy till I was 36 and symptoms started happening last summer. I said yep. Asks a few other general questions about my history. He then proceeds to say further testing would be unnecessary and a waste of money. He had 8 other patients with similar cases and further testing turned out fruitless. What I had was an overuse injury from riding my bike to much. Definitely not a metabolic myopathy because it would have presented itself sooner in my life with how active I have been and none of my siblings had anything like it. I just needed 1-2 weeks of rest with some meds to help with the muscle pain and I should be ready to start slowly exercising.
Shocked. Utterly shocked. And speechless. He asked if I had any questions and I couldn’t barely respond with anything other than will I ever not have pain. He again assured 1-2 weeks of rest and I should be okay to start very slowly exercising again. Could use creatine to help increase my athletic performance. He then got up and thanked me for coming to visit an left the room. My wife and I looked at each other like did that just happen? After we left, all the questions I should have asked came flooding to my brain. Once unfrozen, my brain began to process what he told me. Not sure how 1-2 weeks of rest is going to help what the last 6 months of rest did not do. Not sure if he read my history where I did not exercise from September to January. The pain did not go away during that time. I have exercised 8 times since then to see if I can handle it. I can’t do much more then once a week as I don’t want to overdue it and it takes me 3-4 days to recuperate back to my new normal. I hadn’t exercised for 2 weeks prior to the appointment. I still have daily pain in my legs, hips, and between my ribs. Sometimes it is very light and sometimes it burns. How does my rib pain and side spasms I had in October associate to my overuse of my bike? I don’t know either. I get massages once every 10 days to help relieve some of the muscle tightness. I was getting them twice a week from September to January so I could function somewhat normally.
So, here I sit. I sent the specialist doctor an email with all the questions I wish I would have asked when I was at the appointment. I also sent an email to my prior neurologist to see if she had any suggestions. I don’t have any more answers today then I did last July. If it isn’t nerve/muscle/genetically related, what could it be? Is there a test that will help give someone a clear direction which way to go? Is it all in my head? I don’t know how I can conjure up the pain I feel in my imagination. Though I know the brain is very powerful. Do I need to suck it up buttercup and just get back to exercising? I don’t know if what I am eating is helping or hurting or if exercising will cause long term damage? I need to exercise some to help keep the stress of life at bay. Maybe I just got to start playing my guitar and piano again. Round is a shape right? Is taking a sauna a good idea as normally my muscle aches become more pronounced for a while afterwards. Can’t give up the sauna as it is the one place I can contemplate life. As you can tell, my brain is racing and I don’t have any answers. I am a really laid back individual and take things as they come. This is really testing my personality.
So till next time, I have banned searching google for myself as it is a rabbit hole you can’t climb out of. If all goes well, maybe those two highly intelligent doctors will point me in a direction that leads to something. And if they can’t find anything, I feel maybe I would rather have the tests show it. If I have to live with the pain I feel daily, then that’s what it is. I will have to change my diet to make up for the lack of the ability to exercise often. But at least I would like to explore the possibility that the unlikely can happen. A great friend of mine developed Type 1 diabetes in his 30s which is very very rare. Shouldn’t happen. But it did. Maybe it something, maybe its nothing. Here’s to hoping its something that’s nothing.
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