Greetings:
This is a wonderful site/resource; happy to have found it.
In the name of full-disclosure, I have not been diagnosed with CFS, which, from reading other's stories, seems like an extremely difficult task. I do however suffer from debilitating fatigue -- physical and cognitive --, among many other symptoms, and based on recent genetic tests, appear to be at a heightened risk of CFS.
I was hopeful to share a bit about my past, symptoms and ask for suggestions/treatment options.
Since early childhood I have suffered from a temperamental stomach, chronic anxiety and poor long-term memory. Although I made my way thru college, graduate school and had a good career, I always felt highly anxious -- which is not my personality at all -- and perpetually tired/falling behind.
4-years ago, after I burned out of career #2, I was diagnosed with celiac disease. I was very hopeful that strict adherence to a gluten-free diet would greatly reduce my symptoms. Unfortunately, it did not. In fact, the gluten-free diet worsened many symptoms and caused the onset of others. It initially felt like I was going thru withdrawal – which, I gather I was. Follow-up testing have shown that I am faithfully following the diet. Go figure.
The celiac diagnosis was 4 -- very forgettable -- years ago. Since then, I have seen countless doctors, received a few addt’ diagnosis, and have not been able to work full-time. My journey also includes (til now) unresponsive hashimoto’s disease and dysthymia. Associated symptoms include: extremely debilitating fatigue, which may or may not be due to non-restorative sleep and horrible brain fog, which makes basic tasks difficult. Multitasking…forget about it. I also often have this odd wired feeling, headaches, heart ache (literally), lock jaw, mild hand tremors and chronic GI symptoms. And, of course, there is some joint pain/stiffness stuff going on.
Genetic testing revealed that I have a heterozygous mutation of all 3 MTHFR genes, as well as COMT V158M & H62H, both VDR genes, MTRR A66G, and both CBS genes. I also have a homozygous mutation of MAO-A R297R and BHMT 02, 04, 08. Sound like I did NOT hit the genetic lottery jack pot.
Recent labs/tests show: low vitamin-d (though in the 40s/50s w/ 5000 IUs daily), low testosterone, low PTH, elevated TPO (thyroid), slightly elevated cholesterol and glucose serum -- seems odd, as I am a 41 year old male, who, until recently, was quite active. Interestingly, I also have elevated vitamin E and vitamin B-12, as well as low iron and borderline low cortisol; probably some adrenal stuff going on. Finally, and I found this very interesting, I recently had my neurotransmitters checked, which I know traditional medicine doctors might dismiss, but they were all very low, which given my physical and occasional mental state, makes sense.
So, I am at a loss for what to do/where to start. I take supplements, but have cut back, given recent genetic test results. Suggestions? Amino acids? CBS protocol? Methyl/Hydro-cobalamin? Active form of folic acid? Exercise -- which I have been doing gradually, and seems to help.
I just want to get better. As a middle-aged male, I feel the added burden of not being able to properly work and provide for my family. Unfortunately, I can't say that my wife has been entirely understanding. How do you truly describe a fatigue that cannot be ignored and does not respond to sleep?
Be well
This is a wonderful site/resource; happy to have found it.
In the name of full-disclosure, I have not been diagnosed with CFS, which, from reading other's stories, seems like an extremely difficult task. I do however suffer from debilitating fatigue -- physical and cognitive --, among many other symptoms, and based on recent genetic tests, appear to be at a heightened risk of CFS.
I was hopeful to share a bit about my past, symptoms and ask for suggestions/treatment options.
Since early childhood I have suffered from a temperamental stomach, chronic anxiety and poor long-term memory. Although I made my way thru college, graduate school and had a good career, I always felt highly anxious -- which is not my personality at all -- and perpetually tired/falling behind.
4-years ago, after I burned out of career #2, I was diagnosed with celiac disease. I was very hopeful that strict adherence to a gluten-free diet would greatly reduce my symptoms. Unfortunately, it did not. In fact, the gluten-free diet worsened many symptoms and caused the onset of others. It initially felt like I was going thru withdrawal – which, I gather I was. Follow-up testing have shown that I am faithfully following the diet. Go figure.
The celiac diagnosis was 4 -- very forgettable -- years ago. Since then, I have seen countless doctors, received a few addt’ diagnosis, and have not been able to work full-time. My journey also includes (til now) unresponsive hashimoto’s disease and dysthymia. Associated symptoms include: extremely debilitating fatigue, which may or may not be due to non-restorative sleep and horrible brain fog, which makes basic tasks difficult. Multitasking…forget about it. I also often have this odd wired feeling, headaches, heart ache (literally), lock jaw, mild hand tremors and chronic GI symptoms. And, of course, there is some joint pain/stiffness stuff going on.
Genetic testing revealed that I have a heterozygous mutation of all 3 MTHFR genes, as well as COMT V158M & H62H, both VDR genes, MTRR A66G, and both CBS genes. I also have a homozygous mutation of MAO-A R297R and BHMT 02, 04, 08. Sound like I did NOT hit the genetic lottery jack pot.
Recent labs/tests show: low vitamin-d (though in the 40s/50s w/ 5000 IUs daily), low testosterone, low PTH, elevated TPO (thyroid), slightly elevated cholesterol and glucose serum -- seems odd, as I am a 41 year old male, who, until recently, was quite active. Interestingly, I also have elevated vitamin E and vitamin B-12, as well as low iron and borderline low cortisol; probably some adrenal stuff going on. Finally, and I found this very interesting, I recently had my neurotransmitters checked, which I know traditional medicine doctors might dismiss, but they were all very low, which given my physical and occasional mental state, makes sense.
So, I am at a loss for what to do/where to start. I take supplements, but have cut back, given recent genetic test results. Suggestions? Amino acids? CBS protocol? Methyl/Hydro-cobalamin? Active form of folic acid? Exercise -- which I have been doing gradually, and seems to help.
I just want to get better. As a middle-aged male, I feel the added burden of not being able to properly work and provide for my family. Unfortunately, I can't say that my wife has been entirely understanding. How do you truly describe a fatigue that cannot be ignored and does not respond to sleep?
Be well
