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Hey all!
I'm cross posting from a Facebook group.
I would like to list my life of symptoms and want you to tell me - like you'll be invited as CFS expert on TV
- what you think are the most likeliest underlying pathologies in my very weird and RAPIDLY DECLINING ME/CFS.
Can I use your clever brains to guess my pathology? Would appreciate that.
My doctors, family and myself are all at a loss.
I went from fully functioning and full time working to bedbound and having to be on benzos in a few weeks.
I would love ideas and explanations for the strange and rapid decline of my CFS.
My ME/CFS is rapid, unusual, and a lot of CFS specialists have missed it in the past in its mild form.
I'm at a point where 90% of my time is absolute torture, yet everything is always clear.
What is unusual is the psychiatric features for a person that is the opposite, the lack of brain fog and classic crashes. I do not really recover from crashes.
I personally feel there could be a mechanical element, just because of this huge disconnect between my personality and the features.
What's puzzling is the rapid decline.
I'll give you the basic time stamps and symptoms.
Before 2014:
Always cold hands and feet
Sweaty hands and feet (allergy against heat)
Often throat infection.
2014:
Thyroidectomy. Hard to adjust to hormones. Ft3 always low. Can't deal with T3.
6 weeks afterwards: development of burning mouth syndrome (neuropathy?). This got worse throughout the years (clenching my jaw at night), but also better.
Occasionally depression after sports.
Sometimes numb hands.
Some skin allergy starting.
2016:
12 months cough after moving to Hong Kong (pollution more than mold probably).
Hoarse voice. No reflux (did manometry and 24h study)
Always living with dry throat and changed diet to come by. Better 2018.
Developed constantly blocked ears and lump on throat (protection against silent reflux?)
2018: start of slower healing of tendons in different parts of my body.
2019:
Unknown virus in Vietnam.
Nausea for three weeks.
Then strange vagus nerve related illness, lost lots of fluid, change of stool.
Belly cramps after all food.
Diagnosed with severe pancreas insufficiency afterwards.
At the SAME time my pancreas and gut were off: my nervous system was constantly wired. Daily panic attacks just in my head, unrelated to my feelings. Pancreas treated with enzymes - took away pain and cramping.
2020:
Development of CFS mild.
"Anxiety" wasn't treatable with antidepressants (make me wired or instant panic). No help with therapy. I would more call it dissociation attacks than anxiety. This changed to mild depression which resolved after introduction of pacing (!)
This was when I undertood that my PEM manifested as depression/rumination/heightening of the nerves/somehow on the vagus nerve. It's like pocket windows of mental PEM.
2020: I developed postprandial syndrome: after all food my vagus nerve got "stuck" or high. Sometimes sleepy after eating, and walking while digesting was particularly bad.
Adjusted with pacing and worked full time in home office. Took Ketotifen, but mostly helpful with sleep.
Developed formication (bugs crawling) on skin.
2021, May:
Covid vaccine. Pfizer 1.
Extreme reaction. Dissociation 8 hour into it. Over 2 weeks my ME became severe - even though I paced.
Bedbound. My PEM again after physical and mental exhaustion: panic attacks and depressive rumination (indicating crash and lower baseline). Imagine that like a dissociation attack after eating, a shower - one that I can feel as my brain nerves (on top of my head) heat up.
Went into hospital to exclude other things. No autoimmune. Thyroid levels low (high TSH) despite no change in medication. Heart all normal. Slight bradycardia in sleep and shortened sleep.
Spinal tap done: normal. Two attempts, very traumatising as I was very nauseous and weak and almost passing out.
Crashed after spinal tap: very weak, post punctual headache/spinal leak.
Extremely high nervous system, extreme insomnia. Recovered a little but never completely. My main symptoms with the leak: burning scalp, skin, positional headache after 10 minutes. I felt my cranial nerves in the same night as my spinal tap.
Two weeks after spinal tap:
Positional headaches stop. Still scalp burning and migraines triggered. Very subtle symptoms of leak, in particular neurological.
But extreme crash after three weeks: to now very severe.
Extreme hyperacusis. Burning head/scalp. I get 8 hours nerve inflammation attacks per day where I can feel my brain inflammation. This is often related to burning back, burning between shoulder blades. Burning skin (arms, chest mostly).
Then I can have days with less symptoms.
All my PEM is daily. The brain inflammation is limiting and paralysing, but also related to extreme depression and rumination. Once the brain inflammation attack stops, I am back to my usual self. I describe this as daily torture.
All of my pain is in the head and apart from the migraines don't have to use pain killers as I am 100% flat.
I have to use benzos because nothing else helps and I have extreme medication sensitivity. It's like an otherworld, when the brain inflammation sets in. Also speaking is hard (due to nerve weakness?), and I have a big lump on throat.
Then every once in a while, I would get lead feeling in body. 3 good days. Back to wiredness.
I can't stand communication anymore, am extremely dysfunctional, my parents have to do everything. Sounds are like penetration, as is communication.
Of course this makes hospital or doctors extremely difficult.
I also have extreme reactions to medication (for instance trying a migraine med sent me into a big crash).
Eating and communication is very difficult.
Before the vaccine, I've always thought my ME is metabolic, due to pancreas illness etc.
But because of the mega unusual vaccine reaction and the mechanics of the fluid leak, which makes me believe that there could be nerve stretching involved, I've thought: what if my body is extremely sensitive to any changes in the nervous system?
Then there is this unusually rapid presentation and the extreme burning of my brain, but it is not a swelling.
So I am wondering what could be going on mechanically.
Recently I've even thought: what if it is not the crappy pancreas, but the pancreas just an expression of what's going wrong at the nerve (or even brain) front? In particular because my pancreas looks fine on imaging, so it can only be a hormonal or nerve thing.
The postprandial high nerves are definitely mechanical and not related to what I eat (although harder the more the pancreas is working!).
There is also so much talk about connective tissue recently.
Maybe there are other pathologies worth considering, for instance nutrition and gastro issues, next to EDS like conditions?
I've been wrecking my brain about my pathology. Likely there is more than one thing involved.
How does it read for you?
Are there other people who have a very psychiatric presentation and rapid decline? Did you find value in exploring the mechanical route or connective tissue theory?
<3 from brain attack torture land
Thank you for reading!
I'm cross posting from a Facebook group.
I would like to list my life of symptoms and want you to tell me - like you'll be invited as CFS expert on TV
- what you think are the most likeliest underlying pathologies in my very weird and RAPIDLY DECLINING ME/CFS.Can I use your clever brains to guess my pathology? Would appreciate that.
My doctors, family and myself are all at a loss.
I went from fully functioning and full time working to bedbound and having to be on benzos in a few weeks.
I would love ideas and explanations for the strange and rapid decline of my CFS.
My ME/CFS is rapid, unusual, and a lot of CFS specialists have missed it in the past in its mild form.
I'm at a point where 90% of my time is absolute torture, yet everything is always clear.
What is unusual is the psychiatric features for a person that is the opposite, the lack of brain fog and classic crashes. I do not really recover from crashes.
I personally feel there could be a mechanical element, just because of this huge disconnect between my personality and the features.
What's puzzling is the rapid decline.
I'll give you the basic time stamps and symptoms.
Before 2014:
Always cold hands and feet
Sweaty hands and feet (allergy against heat)
Often throat infection.
2014:
Thyroidectomy. Hard to adjust to hormones. Ft3 always low. Can't deal with T3.
6 weeks afterwards: development of burning mouth syndrome (neuropathy?). This got worse throughout the years (clenching my jaw at night), but also better.
Occasionally depression after sports.
Sometimes numb hands.
Some skin allergy starting.
2016:
12 months cough after moving to Hong Kong (pollution more than mold probably).
Hoarse voice. No reflux (did manometry and 24h study)
Always living with dry throat and changed diet to come by. Better 2018.
Developed constantly blocked ears and lump on throat (protection against silent reflux?)
2018: start of slower healing of tendons in different parts of my body.
2019:
Unknown virus in Vietnam.
Nausea for three weeks.
Then strange vagus nerve related illness, lost lots of fluid, change of stool.
Belly cramps after all food.
Diagnosed with severe pancreas insufficiency afterwards.
At the SAME time my pancreas and gut were off: my nervous system was constantly wired. Daily panic attacks just in my head, unrelated to my feelings. Pancreas treated with enzymes - took away pain and cramping.
2020:
Development of CFS mild.
"Anxiety" wasn't treatable with antidepressants (make me wired or instant panic). No help with therapy. I would more call it dissociation attacks than anxiety. This changed to mild depression which resolved after introduction of pacing (!)
This was when I undertood that my PEM manifested as depression/rumination/heightening of the nerves/somehow on the vagus nerve. It's like pocket windows of mental PEM.
2020: I developed postprandial syndrome: after all food my vagus nerve got "stuck" or high. Sometimes sleepy after eating, and walking while digesting was particularly bad.
Adjusted with pacing and worked full time in home office. Took Ketotifen, but mostly helpful with sleep.
Developed formication (bugs crawling) on skin.
2021, May:
Covid vaccine. Pfizer 1.
Extreme reaction. Dissociation 8 hour into it. Over 2 weeks my ME became severe - even though I paced.
Bedbound. My PEM again after physical and mental exhaustion: panic attacks and depressive rumination (indicating crash and lower baseline). Imagine that like a dissociation attack after eating, a shower - one that I can feel as my brain nerves (on top of my head) heat up.
Went into hospital to exclude other things. No autoimmune. Thyroid levels low (high TSH) despite no change in medication. Heart all normal. Slight bradycardia in sleep and shortened sleep.
Spinal tap done: normal. Two attempts, very traumatising as I was very nauseous and weak and almost passing out.
Crashed after spinal tap: very weak, post punctual headache/spinal leak.
Extremely high nervous system, extreme insomnia. Recovered a little but never completely. My main symptoms with the leak: burning scalp, skin, positional headache after 10 minutes. I felt my cranial nerves in the same night as my spinal tap.
Two weeks after spinal tap:
Positional headaches stop. Still scalp burning and migraines triggered. Very subtle symptoms of leak, in particular neurological.
But extreme crash after three weeks: to now very severe.
Extreme hyperacusis. Burning head/scalp. I get 8 hours nerve inflammation attacks per day where I can feel my brain inflammation. This is often related to burning back, burning between shoulder blades. Burning skin (arms, chest mostly).
Then I can have days with less symptoms.
All my PEM is daily. The brain inflammation is limiting and paralysing, but also related to extreme depression and rumination. Once the brain inflammation attack stops, I am back to my usual self. I describe this as daily torture.
All of my pain is in the head and apart from the migraines don't have to use pain killers as I am 100% flat.
I have to use benzos because nothing else helps and I have extreme medication sensitivity. It's like an otherworld, when the brain inflammation sets in. Also speaking is hard (due to nerve weakness?), and I have a big lump on throat.
Then every once in a while, I would get lead feeling in body. 3 good days. Back to wiredness.
I can't stand communication anymore, am extremely dysfunctional, my parents have to do everything. Sounds are like penetration, as is communication.
Of course this makes hospital or doctors extremely difficult.
I also have extreme reactions to medication (for instance trying a migraine med sent me into a big crash).
Eating and communication is very difficult.
Before the vaccine, I've always thought my ME is metabolic, due to pancreas illness etc.
But because of the mega unusual vaccine reaction and the mechanics of the fluid leak, which makes me believe that there could be nerve stretching involved, I've thought: what if my body is extremely sensitive to any changes in the nervous system?
Then there is this unusually rapid presentation and the extreme burning of my brain, but it is not a swelling.
So I am wondering what could be going on mechanically.
Recently I've even thought: what if it is not the crappy pancreas, but the pancreas just an expression of what's going wrong at the nerve (or even brain) front? In particular because my pancreas looks fine on imaging, so it can only be a hormonal or nerve thing.
The postprandial high nerves are definitely mechanical and not related to what I eat (although harder the more the pancreas is working!).
There is also so much talk about connective tissue recently.
Maybe there are other pathologies worth considering, for instance nutrition and gastro issues, next to EDS like conditions?
I've been wrecking my brain about my pathology. Likely there is more than one thing involved.
How does it read for you?
Are there other people who have a very psychiatric presentation and rapid decline? Did you find value in exploring the mechanical route or connective tissue theory?
<3 from brain attack torture land
Thank you for reading!
