2Cor.12:19
Senior Member
- Messages
- 280
Sometimes it seems like all I ever do is chase rainbows. With each new diagnosis and corresponding treatment, supplement, diet --fill in the blank, comes a glimmer of hope for significant and lasting improvement. But it always ends up being just another small piece of the puzzle leaving me wondering which came first, the chicken or the egg.
In addition to a bunch of other things, I have Idiopathic Axonal Polyneuroapthy which is progressing. It's been coming on gradually for about 20 years. This kind of nerve damage affects both sensory and motor nerves and can sometimes affect the autonomic nervous system.
Prior to my APN diagnosis, I was diagnosed with Mixed Sleep Apnea, which is a combination of central and obstructive apneas. I've had sleep apnea for as long as I've had ME/CFS, and yet none of the dozens of doctors and specialists I've seen over the decades thought to order a sleep study, until I was referred to a pulmonologist for pulmonary hypertension. I've been on CPAP for 3 years now which helps immensely, but as usual, it proved to be just another rainbow.
My current doctors (5 different specialists) ordered numerous tests in search of the cause of my PN and coming up with nothing, labeled it Idiopathic. About 1/3 of PN cases have no "known" cause. No one has suggested my decades long untreated Sleep Apnea might be the culprit, even though studies show that peripheral nerve damage can be linked to chronic night time hypoxia (oxygen de-saturation)
Axonal polyneuropathy in obstructive sleep apnoea
Peripheral neuropathy in sleep apnea. A tissue marker of the severity of nocturnal desaturation
I was also recently diagnosed with SIBO (small intestinal bacteria overgrowth) and suspect the underlying cause is down to poor gut motility. When treating SIBO, it's important to get to the underlying cause. I'm guessing that I also have autonomic neuropathy as well because I have so many of the classic symptom: POTS, dizziness, constipation, digestive and bladder issues, heat intolerance, and poor night vision. I'll be checking with my neurologist and gastro doc about this possibility.
Autonaumic Neuropathy - Stanford Health
The autonomic nervous system in functional bowel disorders
All of these issues, the PN, Apnea, and SIBO seem to be interconnected, but which came first and why? I was perfectly healthy before my 35 year cat and mouse game with ME/CFS began. I can't help but wonder if the initial Epstein Barr infection that triggered my ME caused permanent nerve damage that later cascaded into a domino effect. My nervous system was severely impacted from that first day when I woke up "vibrating" from head to toe.
Whatever treatments are to be had for what ails me now may help to a degree, but it won't really put a much of a dent in the overall picture. I'm still disabled and living in the shadows.
But I'm not in despair over it as I've learned to be content and appreciate the many other kinds of blessings I have. And I'm so very thankful for all of our researchers and advocates! At the end of the day, finding real answers to the mystery of ME/CFS will be the pot of gold at the end of the rainbow we all really need.
In addition to a bunch of other things, I have Idiopathic Axonal Polyneuroapthy which is progressing. It's been coming on gradually for about 20 years. This kind of nerve damage affects both sensory and motor nerves and can sometimes affect the autonomic nervous system.
Prior to my APN diagnosis, I was diagnosed with Mixed Sleep Apnea, which is a combination of central and obstructive apneas. I've had sleep apnea for as long as I've had ME/CFS, and yet none of the dozens of doctors and specialists I've seen over the decades thought to order a sleep study, until I was referred to a pulmonologist for pulmonary hypertension. I've been on CPAP for 3 years now which helps immensely, but as usual, it proved to be just another rainbow.
My current doctors (5 different specialists) ordered numerous tests in search of the cause of my PN and coming up with nothing, labeled it Idiopathic. About 1/3 of PN cases have no "known" cause. No one has suggested my decades long untreated Sleep Apnea might be the culprit, even though studies show that peripheral nerve damage can be linked to chronic night time hypoxia (oxygen de-saturation)
Axonal polyneuropathy in obstructive sleep apnoea
Peripheral neuropathy in sleep apnea. A tissue marker of the severity of nocturnal desaturation
I was also recently diagnosed with SIBO (small intestinal bacteria overgrowth) and suspect the underlying cause is down to poor gut motility. When treating SIBO, it's important to get to the underlying cause. I'm guessing that I also have autonomic neuropathy as well because I have so many of the classic symptom: POTS, dizziness, constipation, digestive and bladder issues, heat intolerance, and poor night vision. I'll be checking with my neurologist and gastro doc about this possibility.
Autonaumic Neuropathy - Stanford Health
The autonomic nervous system in functional bowel disorders
All of these issues, the PN, Apnea, and SIBO seem to be interconnected, but which came first and why? I was perfectly healthy before my 35 year cat and mouse game with ME/CFS began. I can't help but wonder if the initial Epstein Barr infection that triggered my ME caused permanent nerve damage that later cascaded into a domino effect. My nervous system was severely impacted from that first day when I woke up "vibrating" from head to toe.
Whatever treatments are to be had for what ails me now may help to a degree, but it won't really put a much of a dent in the overall picture. I'm still disabled and living in the shadows.
But I'm not in despair over it as I've learned to be content and appreciate the many other kinds of blessings I have. And I'm so very thankful for all of our researchers and advocates! At the end of the day, finding real answers to the mystery of ME/CFS will be the pot of gold at the end of the rainbow we all really need.
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