I'll preface the following by first apologizing for the novel below. I didn't start out with the intention to write one, but in the process, felt that a very thorough overview would helps those in the know to provide helpful suggestions.
I wish that I could simply glide through my days, without my body and brain ceaselessly reminding me of how crappy I feel. Maybe someday again...soon?
CATHARTIC VENT: While I have not been officially diagnosed with CFS, I have pretty much the entire lot of symptoms. I guess a differential diagnosis is possible, but I have already followed the treatment protocols for, to date: celiac disease, hashimotos and lyme...without benefit.
It's all so surreal, but in retrospect maybe unavoidable. While I didn't have much in the way of physical symptoms, i have been a life-long sufferer of anxiety, minor GI distress and moderate to mild memory challenges. Now, I believe that they are all inter-related. Over the past 5-years, I have had countless tests and mounting procedures, including recent sinus surgery, all in an attempt to break the ever maddening fatigue and brain fog.
Up until my mid-30s I was able to cope, well enough I guess, to have gone to college, graduate school and achieve sufficient vocational success. But then, in a short period of time, I left an increasingly stressful position, began my own company and had a child. During that time, I also began a gluten-free diet - in response to a celiac diagnosis. I also started taking adderall, because I literally could no longer focus. Any attempt to focus, particularly on things that didn't interest me, would cause massive anxiety. It was as if a fuse blew and my brain/body could simply no longer function. Sadly, on the outside, other than my eyes, I look perfectly fine.
I feel added pressure as a 42 yo married male with a young child. I have had to take a BIG step back from my former life and am concerned that I will never again experience normalcy. I try to keep my head up...and lexapro has definitely helped, but the symptoms are simply crushing and without a respite. They infect every experience that I now have. I feel particularly sad for my son, who never got to experience his former father. Sad.
SYMPTOMS: Whatever this disease or diseases is, it's thorough! I don't believe that a single body system has been left unaffected. Unfortunately, no doctor has been able to establish a protocol yet that gets me to a place where I can start to more actively participate in my recovery. That's critical imo. In the past 5 years, since the cataclysmal onset, I can't recall one time where my body has clearly said -- thata boy! You're heading in the right direction and here's why.
Exhaustion: 24 hours a day, 7-days a week. It also often comes with the bonus of feeling wired at the same time. All extremely devastating. It does lighten a bit at night, which is likely due to my inverted cortisol levels. To-date, i haven't figured out a way to break the cycle. It seems as if no matter how much i sleep, when i sleep or where i sleep, the result is the same. At this point, simply being awake is taxing my body. And, while my whole body feels exhausted, almost at a cellular level, i'd venture to say that my brain is even more exhausted.
Brain Fog: I literally feel like a vegetable. Everything has slowed down considerably. Brain processing, talking, walking, all forms of movement, etc. It's like I can barely muster the physical and cognitive energy to start/finish the most basic tasks. While no savant, I always considered myself intelligent enough. However, in retrospect, I believe that I have always suffered from sluggish cognition. It was as if my brain only operated at a specific (narrow) speed. Too little or too much stimulation would cause massive anxiety. I had a QEEG performed and the consulting psychologist described my brain as not having an accelerator. He couldn't say why though.
Stomach Ache: While the GI distress I felt as a child and young adult was occasionally a PITA, it was mostly a dull global pain, that, unless touched or discussed, i wasn't even aware of. However, once i began a gluten-free diet, my body fell off a cliff. I am now always aware of the stomach aches, which range along a more narrow pain continuum. Bowel irregularities have followed.
Headaches: I never suffered headaches until 7-years ago, when I had wisdom teeth surgery. They haven't left since. Guess they didn't receive the not-welcome memo. Like my stomach aches, they are always painful and move within that continuum. They also sometimes pair with radiating heat around my head. I find that pressure does help.
Stimuli: Increasingly poor response to light and noise. I adapt, but it's not immediate. I had to buy industrial earmuffs, as unexpected sounds were increasingly shocking to my system. Clearly, my nerves are fried.
Memory/Cognition: Simply poor imo. In light of the other symptoms though, this is the least of my worries. I suspect that if I can identify the root cause(s) and treat them properly, my brain function will improve.
Tremors: I have increasing hand and finger tremors. I went to a parkinson's specialist and she discounted the disease. I may see another specialist though, just to make sure.
TMJ: I often find that my jaw is clenched. Clearly, my body is reeling and this may be one of the ways that it is coping.
Balance, Gait and Fine Motor Skills: Worsening. At times, it feels like my right leg is a bit slow. It's very slight and not something that anyone (i suspect) would notice, but I do. It feels like my circuitry is just plain off.
Pain: I have vacillating pain, which is often global, though most pronounce in the gut and brain. I also often feel very hot, particularly in the same regions mentioned above.
Circulation: My circulation appears to be worsening. When I lie down to sleep, I can literally feel the lower part of legs go numb.
Hands: For some reason, they have progressively clawed. That's now their natural position. If not conscious, they'll form a fist.
Anxiety and Depression: Over the past 5-years I have, at times, experienced cycles of anxiety and depression that were unlike anything that I had ever experienced and quite scary. I am now on lexapro, which, has cycled from extremely effective to not so much. I have to figure out what is causing the inconsistency.
I'm sure there are others, but those are the biggies.
MY DAY: My mornings begin in shock. I often wake-up between 6AM to 7AM to tend to my son and my first, very desperate thought is, when can I go back to bed? My symptoms often are: disorientation, headache, stomach ache, sore throat, sore jaw, phlegm build-up, always needing to go to the bathroom, etc.
DIAGNOSIS TO-DATE: So far, I have been officially diagnosed with:
celiac disease
hashimotos
dysautonomia
lyme, which may be a bit controversial. I had many negative ELISA and Western Blot tests, before a single positive IgM test from Igenex. Even the IgG test from Igenex was negative. Not sure what to make of it all.
Epstein Barr: The titers came back extremely elevated.
I have increasingly heard from doctors, CFS/CFIDS and fibromyalgia.
TESTS AND RESULTS:
Endoscopy: Positive for classic case of celiac disease, which to-date, has responded poorly to the gluten-free diet.
MRI (with and without contrast) of the Brain and Spine: The results were, in the words of the doctors, unremarkable. Yay, i guess, but am still without answers. There were no apparent changes in grey and white matter. A 7cm arachnoid cyst was detected, but no one has said that should be a concern.
SPECT Scan: Found pronounce decreased blood flow to the right temporal frontal and temporal regions. Possible vasculitis, due to lyme-related encephalopathy. I went to a vascular neurosurgeon, who said that he couldn't detect the vasculitis demonstrated in the SPECT Scan. He recommended that I go to Hopkins for an possible autoimmune consult. They too dismissed vasculitis. Currently, I don't know what to make of those findings or who to see.
Thyroid: While my TSH #s progressively ventured to the low 8s and antibodies were present for hashimotos, there has been no mention or discovery of nodules. I have tried pretty much every medication in this category and, sadly, most have made my symptoms much worse. My body basically rejects common therapeutic responses. I'm currently on 50mcg of Levo. I may try to increase the dosage and / or add cytomel. Thoughts?
Allergen-Panel: Not too bad. Many minor allergic responses, but few majors. I have tried to remove those foods that I respond to. Unfortunately, my body has a poor response to most everything, so hasn't been much - or maybe i'm not paying attention well enough - to make true progress.
Pretty much every GI study: No finding to explain why my stomach is in near constant pain.
IGG: Some irregularities (Subclass 3), but nothing my doctors have mentioned as concerning.
Neurotransmitters: I believe except for dopamine (barely), they were all well below the normal range. I also had highly elevated glutamate.
Labs: Some of the ones that consistently stick out are: low vit-d (without intervention), elevated b12 (without a supplement), low testosterone, elevated glucose serum, elevated cholesterol, highly elevated EBV titers, and slight irregularities with a glucose tolerance test.
GENETICS: Evidently, poor. I have all of the biggie mutations: MTHFR, VDR, COMT, MAO-A, etc. I still am not sure where to begin and how best to manage the mutations.
THERAPIES:
I have tried many natural therapies, including nearly a year of acupuncture, a couple of months with a chiropractor, massages, meditation, sauna, moderate exercise, cognitive behavioral therapy, dietary changes, etc. Not a dent, which leaves me to believe that the symptoms / diseases are deeply rooted and, if there's to be any hope, require serious intervention.
I have tried most, if not all, of the supplements listed on this forum. I have actually greatly paired down my current supplement regimen, with the exception of some amino acids, enzymes and probiotics.
CLOSING: I am somewhat at a loss for what to do next. I tuned out for the past 6 months, as it all just got too overwhelming. I was consumed with getting better...fearing that if I didn't start to improve soon, I might no longer be able to help myself. While my support system is reasonably stable (for now) my wife is still having a very difficult time understanding and responding to my current situation. Can't really blame her. Neither I, nor my current doctors, know what to do either. Although, I do plan to make an appointment with Dr. Podell - hopefully he'll have some insights and recommend possible therapeutic alternative. Bottom-line, I NEED to get restorative sleep and relief from the brain fog. I can't see a way out of the darkness without success in those two critical areas.
If you've made it to the end -- I applaud your persistence and wish you well on your wellness journey.
Peace
I wish that I could simply glide through my days, without my body and brain ceaselessly reminding me of how crappy I feel. Maybe someday again...soon?
CATHARTIC VENT: While I have not been officially diagnosed with CFS, I have pretty much the entire lot of symptoms. I guess a differential diagnosis is possible, but I have already followed the treatment protocols for, to date: celiac disease, hashimotos and lyme...without benefit.
It's all so surreal, but in retrospect maybe unavoidable. While I didn't have much in the way of physical symptoms, i have been a life-long sufferer of anxiety, minor GI distress and moderate to mild memory challenges. Now, I believe that they are all inter-related. Over the past 5-years, I have had countless tests and mounting procedures, including recent sinus surgery, all in an attempt to break the ever maddening fatigue and brain fog.
Up until my mid-30s I was able to cope, well enough I guess, to have gone to college, graduate school and achieve sufficient vocational success. But then, in a short period of time, I left an increasingly stressful position, began my own company and had a child. During that time, I also began a gluten-free diet - in response to a celiac diagnosis. I also started taking adderall, because I literally could no longer focus. Any attempt to focus, particularly on things that didn't interest me, would cause massive anxiety. It was as if a fuse blew and my brain/body could simply no longer function. Sadly, on the outside, other than my eyes, I look perfectly fine.
I feel added pressure as a 42 yo married male with a young child. I have had to take a BIG step back from my former life and am concerned that I will never again experience normalcy. I try to keep my head up...and lexapro has definitely helped, but the symptoms are simply crushing and without a respite. They infect every experience that I now have. I feel particularly sad for my son, who never got to experience his former father. Sad.
SYMPTOMS: Whatever this disease or diseases is, it's thorough! I don't believe that a single body system has been left unaffected. Unfortunately, no doctor has been able to establish a protocol yet that gets me to a place where I can start to more actively participate in my recovery. That's critical imo. In the past 5 years, since the cataclysmal onset, I can't recall one time where my body has clearly said -- thata boy! You're heading in the right direction and here's why.
Exhaustion: 24 hours a day, 7-days a week. It also often comes with the bonus of feeling wired at the same time. All extremely devastating. It does lighten a bit at night, which is likely due to my inverted cortisol levels. To-date, i haven't figured out a way to break the cycle. It seems as if no matter how much i sleep, when i sleep or where i sleep, the result is the same. At this point, simply being awake is taxing my body. And, while my whole body feels exhausted, almost at a cellular level, i'd venture to say that my brain is even more exhausted.
Brain Fog: I literally feel like a vegetable. Everything has slowed down considerably. Brain processing, talking, walking, all forms of movement, etc. It's like I can barely muster the physical and cognitive energy to start/finish the most basic tasks. While no savant, I always considered myself intelligent enough. However, in retrospect, I believe that I have always suffered from sluggish cognition. It was as if my brain only operated at a specific (narrow) speed. Too little or too much stimulation would cause massive anxiety. I had a QEEG performed and the consulting psychologist described my brain as not having an accelerator. He couldn't say why though.
Stomach Ache: While the GI distress I felt as a child and young adult was occasionally a PITA, it was mostly a dull global pain, that, unless touched or discussed, i wasn't even aware of. However, once i began a gluten-free diet, my body fell off a cliff. I am now always aware of the stomach aches, which range along a more narrow pain continuum. Bowel irregularities have followed.
Headaches: I never suffered headaches until 7-years ago, when I had wisdom teeth surgery. They haven't left since. Guess they didn't receive the not-welcome memo. Like my stomach aches, they are always painful and move within that continuum. They also sometimes pair with radiating heat around my head. I find that pressure does help.
Stimuli: Increasingly poor response to light and noise. I adapt, but it's not immediate. I had to buy industrial earmuffs, as unexpected sounds were increasingly shocking to my system. Clearly, my nerves are fried.
Memory/Cognition: Simply poor imo. In light of the other symptoms though, this is the least of my worries. I suspect that if I can identify the root cause(s) and treat them properly, my brain function will improve.
Tremors: I have increasing hand and finger tremors. I went to a parkinson's specialist and she discounted the disease. I may see another specialist though, just to make sure.
TMJ: I often find that my jaw is clenched. Clearly, my body is reeling and this may be one of the ways that it is coping.
Balance, Gait and Fine Motor Skills: Worsening. At times, it feels like my right leg is a bit slow. It's very slight and not something that anyone (i suspect) would notice, but I do. It feels like my circuitry is just plain off.
Pain: I have vacillating pain, which is often global, though most pronounce in the gut and brain. I also often feel very hot, particularly in the same regions mentioned above.
Circulation: My circulation appears to be worsening. When I lie down to sleep, I can literally feel the lower part of legs go numb.
Hands: For some reason, they have progressively clawed. That's now their natural position. If not conscious, they'll form a fist.
Anxiety and Depression: Over the past 5-years I have, at times, experienced cycles of anxiety and depression that were unlike anything that I had ever experienced and quite scary. I am now on lexapro, which, has cycled from extremely effective to not so much. I have to figure out what is causing the inconsistency.
I'm sure there are others, but those are the biggies.
MY DAY: My mornings begin in shock. I often wake-up between 6AM to 7AM to tend to my son and my first, very desperate thought is, when can I go back to bed? My symptoms often are: disorientation, headache, stomach ache, sore throat, sore jaw, phlegm build-up, always needing to go to the bathroom, etc.
DIAGNOSIS TO-DATE: So far, I have been officially diagnosed with:
celiac disease
hashimotos
dysautonomia
lyme, which may be a bit controversial. I had many negative ELISA and Western Blot tests, before a single positive IgM test from Igenex. Even the IgG test from Igenex was negative. Not sure what to make of it all.
Epstein Barr: The titers came back extremely elevated.
I have increasingly heard from doctors, CFS/CFIDS and fibromyalgia.
TESTS AND RESULTS:
Endoscopy: Positive for classic case of celiac disease, which to-date, has responded poorly to the gluten-free diet.
MRI (with and without contrast) of the Brain and Spine: The results were, in the words of the doctors, unremarkable. Yay, i guess, but am still without answers. There were no apparent changes in grey and white matter. A 7cm arachnoid cyst was detected, but no one has said that should be a concern.
SPECT Scan: Found pronounce decreased blood flow to the right temporal frontal and temporal regions. Possible vasculitis, due to lyme-related encephalopathy. I went to a vascular neurosurgeon, who said that he couldn't detect the vasculitis demonstrated in the SPECT Scan. He recommended that I go to Hopkins for an possible autoimmune consult. They too dismissed vasculitis. Currently, I don't know what to make of those findings or who to see.
Thyroid: While my TSH #s progressively ventured to the low 8s and antibodies were present for hashimotos, there has been no mention or discovery of nodules. I have tried pretty much every medication in this category and, sadly, most have made my symptoms much worse. My body basically rejects common therapeutic responses. I'm currently on 50mcg of Levo. I may try to increase the dosage and / or add cytomel. Thoughts?
Allergen-Panel: Not too bad. Many minor allergic responses, but few majors. I have tried to remove those foods that I respond to. Unfortunately, my body has a poor response to most everything, so hasn't been much - or maybe i'm not paying attention well enough - to make true progress.
Pretty much every GI study: No finding to explain why my stomach is in near constant pain.
IGG: Some irregularities (Subclass 3), but nothing my doctors have mentioned as concerning.
Neurotransmitters: I believe except for dopamine (barely), they were all well below the normal range. I also had highly elevated glutamate.
Labs: Some of the ones that consistently stick out are: low vit-d (without intervention), elevated b12 (without a supplement), low testosterone, elevated glucose serum, elevated cholesterol, highly elevated EBV titers, and slight irregularities with a glucose tolerance test.
GENETICS: Evidently, poor. I have all of the biggie mutations: MTHFR, VDR, COMT, MAO-A, etc. I still am not sure where to begin and how best to manage the mutations.
THERAPIES:
I have tried many natural therapies, including nearly a year of acupuncture, a couple of months with a chiropractor, massages, meditation, sauna, moderate exercise, cognitive behavioral therapy, dietary changes, etc. Not a dent, which leaves me to believe that the symptoms / diseases are deeply rooted and, if there's to be any hope, require serious intervention.
I have tried most, if not all, of the supplements listed on this forum. I have actually greatly paired down my current supplement regimen, with the exception of some amino acids, enzymes and probiotics.
CLOSING: I am somewhat at a loss for what to do next. I tuned out for the past 6 months, as it all just got too overwhelming. I was consumed with getting better...fearing that if I didn't start to improve soon, I might no longer be able to help myself. While my support system is reasonably stable (for now) my wife is still having a very difficult time understanding and responding to my current situation. Can't really blame her. Neither I, nor my current doctors, know what to do either. Although, I do plan to make an appointment with Dr. Podell - hopefully he'll have some insights and recommend possible therapeutic alternative. Bottom-line, I NEED to get restorative sleep and relief from the brain fog. I can't see a way out of the darkness without success in those two critical areas.
If you've made it to the end -- I applaud your persistence and wish you well on your wellness journey.
Peace
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