EVERYONE SHARE YOUR SYMPTOMS

[Ali_Mardiyev]

My name is Ali. I'm 20 years old. I live in Azerbaijan(Baku). I am an economics student. I got ME/CFS 4 months ago by a stupid mistake, due to my own ignorance, from corticosteroids.
https://forums.phoenixrising.me/threads/introduction-theory.89177/

I'm spending ALL my time to find the pathogenesis of ME/CFS.
I created this thread for people to share their illness onset and ALL of their symptoms. I will read through each and every response as am gathering information to prove my possible theory(hypothalamic dysfunction).


A thread, where I share different studies in order to determine the pathogenesis(I encourage everyone interested, especially more knowledgeable members to take a look and contribute by posting other studies if you want): https://forums.phoenixrising.me/threads/hypothalamic-dysfunction-theory-studies.89226/


My symptoms: debilitating fatigue/muscle weakness, anxiety, sleep disturbance(inverted cyrcadian rhytm + restless sleep(vivid dreams)), autoimmune encephalomyelitis(happens only in the mornings), mild brain fog, low appetite, high blood pressure(130-140/90), high resting heart rate~82 while using 40mg propranolol(was ~100 before propranolol), POTS, low libido.

Interesting remarks:
I feel absolutely normal at night, not only physically, but if I'm mentally a different person as well. Like I was previous to this disease. This happens from ~2 till 7-8 A.M.
1. I have almost 100% of my previous energy
2. My memory and learning abilities drastically improve
3. My appetite comes back
4. My libido returns(possibly dopamine receptor upregulation or release, due to higher cortisol)
5. Mild hypomania

Contrary during morning-daytime:
1. Extreme fatigue
2. Slower reaction time + depersonalization
3. Moderate light and sound sensitivity
4. I experience autoimmune encephalomyelitis(possible MCAS)
5. Zero appetite + IBS
6. Feeling extremely valetudinarian(possibly enhanced amygdalar activity) and hopeless

Due to all of this I sleep from 10 A.M. till 6 P.M. My sleep quality is absolutely disasterous. I get delirious thoughts and dreams, almost schizophrenia like. I think this is caused by dopamine receptor downregulation.
When I wake up, I don't feel refreshed, but as the time goes on I start feeling better.
And this cycle haunts me every day.

I read a lot of threads of others describing their symptoms, with a tendency for the symptoms to be worse in the morning and improve during night time. The fact that most people report neuroinflammation(microglia activation, excess glutamate, dopamine deficiency etc.), adrenal issues, and my own disease onset makes me believe, that hypothalamus is the culprit of everything.

Blood work(after 4 hours poor sleep): 9 A.M. 12/2/2022
Potassium: 3.7 Reference: 3.6-5.5
Natrium: 134.8 Reference: 126-160
Glucose: 5.57 Reference: 4.11-5.89
Ionized calcium: 1.10 Reference: 1.05-1.30
ACTH: 56.32 Reference: 7.2-63.3
Cortisol: 760 Reference: 171-536
Free testosterone: 22.3 Reference: 1-28
Estradiol: 41.68 Reference: 7.63-42.6
Progesterone: 1.3 Reference: 0.2-1.4
Free T3: 6.78 Reference: 3.1-6.8

I encourage everyone to post their symptoms in depth, even if you've done in another thread. Just copy and paste here for me! I will try to analyze/engage/answer as much as I can!
Best regards, Ali(I'm writing this at night so I'm very enthusiastic and hopeful that all of us will be cured one day😅).

Edit: if you have extensive blood work(hormones, viruses etc.) send if possible.

 

[Rufous McKinney]

You've done an amazing amount of work!

I experience a strong 24 hour daily pattern that seems to result in symptoms intensifying late in the afternoon when "the yin" is entirely depleted (overheating starts up, yang)

But I ALSO experience another cycle in which I"m feel quite awful after I get up. Then I sort of perk up for a while, then am run down again mid afternoon. Four and Five pm I feel quite AWFUL.

I think my version is mostly Eppstein Barr and a lot of problems with the lymph and "liver". But now I get alot of weird neurological stuff including periodic gastroperesis.

 

[Rufous McKinney]

The fact that most people report neuroinflammation(microglia activation, excess glutamate, dopamine deficiency etc.), adrenal issues, and my own disease onset makes me believe, that hypothalamus is the culprit of everything.

I"ve noticed more glutamate issues recently.

I am trying a new probiotic called Mood Probiotic and it's supposed to improve the HPA axis. This seems to have been a helpful addition to my system.

1) less IBS-d and associated drama
2)sleeping a bit less- not ten hours, more like eight
3)I think my mood is a bit better but I am not taking them for "mood".
4) I don' t tend to have to totally crash out in the afternoons ..which was often common (but still happens with PEM)

I just spent the last WEEK mostly in intense PEM From 45 minute chat with my GP; and making a phone call in PEM extended the PEM to more days.

 

[Ali_Mardiyev]

Did you check for EBV?
And if yes, did you check IgG or IgM?
IgG shows, that you've been infected in the past, whereas IgM shows, that the virus is currently active

 

[Ali_Mardiyev]

I"ve noticed more glutamate issues recently.

I am trying a new probiotic called Mood Probiotic and it's supposed to improve the HPA axis. This seems to have been a helpful addition to my system.

1) less IBS-d and associated drama
2)sleeping a bit less- not ten hours, more like eight
3)I think my mood is a bit better but I am not taking them for "mood".
4) I don' t tend to have to totally crash out in the afternoons ..which was often common (but still happens with PEM)

I just spent the last WEEK mostly in intense PEM From 45 minute chat with my GP; and making a phone call in PEM extended the PEM to more days.

I genuinely think we need to do more research on the hypothalamus to find the patogenesis, and then the cure!

IMO, all the other problems are just downstream results off hypothalamic dysfunction.

 

[Rufous McKinney]

Did you check for EBV?

if your asking me that, I experienced repeated bouts of "impossible" mononucleosis as a child starting at ten, and was living in almond orchards heavily sprayed with organophosphates. I had some "mild" version of often run down which I described as chronic Eppstein Barr.

I'm now 69. Much much worse set in around 66.

I have no idea what test for Epstein Barr even means. My doctor said: they gave you the wrong test. We never did another one and I tend to believe it harbored in tissue and isn't going to be picked up in blood tests.

 

[Andryr]

Hello from Ukraine. Got sick right after tetanus booster vaccination. 3 years of fatigue, unrefreshing sleep, sleep deprivation, anxiety (starting from the 3rd year), bad memory, problems with thinking. I feel the worst in the morning.
Labs were OK for 8 months. Then I got: sluggish thyroid, very low testo, high blood sugar, high blood pressure, liver hepatosis, sore throat. Due to medications my labs are in healthy range now. But all of my symptoms are still there.

 

[Nord Wolf]

Here are my symptoms as requested. My ME, CFS, Hyperadrenergic PoTS, (dysautonomia), chronic pain, fibromyalgia, lung damage, vision loss, and other conditions began in 2005 after I was poisoned with a lethal dose of arsenic trioxide which was mixed with other toxins. After 2 years of healing from that (though ti took about 4 in total), my system began sliding. It was a slow onset noticeably starting around 2007. Symptoms began rapidly advancing around 2014, and once 2017 came around I was completely compromised.

Today these are my symptoms:

• Fatigue - worse in autumn and winter, but poor all year
• Exhaustion - worse in autumn and winter, but poor all year
• Wake up exhausted - always
• Weakness - full body
• PLMD (periodic limb movement disorder)
• Tinnitus - high pitch screaming!!! severe and increases with flair ups
• Lightheadedness, severe - when upright
• Dizziness, severe - when upright
• both dizziness and lightheadedness go away when I lay down, but always return when standing or many times even sitting
• Headaches - regular
• Migraines on occasion
• Head pressure
• Brain stem pressure
• Cervical spine pressure
• Lung inflammation
• Labored breathing
• Shortness of breath
• Wheezing
• Hot burning lungs
• Lung constriction
• Lung ache
• Lose voice easily
• Talking is full body and mind exhausting
• Scalp dermatitis
• Fading fingerprints on both hands
• Sinus swelling
• Nasal passage swelling
• Bronchial irritation and swelling
• Coughing - mostly first half of day
• Raspy phlegmy throat
• Post nasal drip typically in autumn
• Spontaneous body sweating, diurnal mostly and even when cool
• Muscle cramps and spasms
• Body inflammation - moves around
• Strongly fluctuating appetite
• Loss of balance - comes and goes
• Heat intolerance
• High humidity intolerance
• Dehydrate quickly - always thirsty
• Drink a lot everyday
• Always crave salt
• Chest palpitations
• Racing heart
• Immediate highly elevated heart rate upon standing - decreases when lay back down
• typically rises 30-50 beats per minute from resting tachycardia
• Spike in blood pressure upon standing, always
• resting averages 118/72 - standing spikes it to an average between 160/89 to 200/98
• Cognitive difficulties, loss of words, memory, concentration, focus, missing time
• Vision loss when showering
• Vision loss when exhausted
• Vision loss sometimes when standing up
• not darkness, but rather my vision turns to nothing but flat light with washed out colors, no shapes, no form, no depth (blindness without the dark - “whiteout”)
• Wavy vision, like being drunk - comes and goes
• Spots in vision comes and go
• Blurry vision comes and goes, but more often than not these days
• Tunnel vision upon standing
• Nerve pain, many locations
• Nocturnal emission frequency that annihilates my energy, spikes all symptoms and makes me feel literally ill, like the flu
• Severe exhaustion from emission, and takes 1 to 2 weeks to recover
• Emotional challenges - depression, moody, anger, frustration, irritability
• Nighttime body anxiety and insomnia
• Difficulty sleeping
• Low O2 upon waking 84-92 average
• Drops in O2 - diurnal - sporadic
• Cold hands and feet
• Mild fluctuating nausea throughout the day
• Decreased appetite the last few months on average

Those are most of them. There are some more as well but I figure that is enough to list. Actually this is a copy and paste from what I sent my healthcare team two weeks ago. Far too wasted today to have typed it all out now. The PoTS only started last year. Everything else was a steady slow progression since 2014.

 

[Rufous McKinney]

Today these are my symptoms:

oh, those are only today? Quite the list. What, you don't receive enough attention at home? ( I am entirely kidding, this is a list of NOT Fun At All)

Last week I was about 2/3 of your list minus the dizzy part. I refused to check the ridiculous BP.

I could add-

right side of neck unraveling, I wonder when my head is going to just fall off one day

mostly missing right nipple ( I think this is a remarkable symptom, anatomy simply disappears)

missing finger prints

Lots of bizarre peripheral neuropathies.

On Friday the brain was 100% electric (which is what the tinnitus thing seems like to me)

 

[hapl808]

Those are most of them. There are some more as well but I figure that is enough to list. Actually this is a copy and paste from what I sent my healthcare team two weeks ago. Far too wasted today to have typed it all out now. The PoTS only started last year. Everything else was a steady slow progression since 2014.

Holy crap that's an impressive list. I feel like it would've taken me since 2014 to write all that.

But yeah - most of Nord's list applies to me. Easier to say, same, but subtract:

minimal tinnitus
mild dizziness (but I use crutches to walk)
normal-ish appetite
constant tachycardia but only jumps from about 100 sitting to 120-120 when standing
no hot burning lungs
don't really crave salt
not specific nighttime body anxiety

I'd say the rest of that incredible list pretty much applies generally or very specifically. One of my biggest efforts was to try to minimize spending the first half of every day coughing, which I did even when ME/CFS was moderate. Trying to just unravel LES/GERD on its own is a lifetime task.

Anyways, there it is.

 

[Rufous McKinney]

to try to minimize spending the first half of every day coughing

my right side is much sicker so my right lung is far more congested and was reading how thats hooked into the liver. And that is generating the lymph. So in my case all that feels hooked together.

Been doing some lung moistening herbs which help clear out and a nattokwinase every few days.

 

[Nord Wolf]

Holy crap that's an impressive list.

"Holy crap" - well said.
Some of these symptoms I had prior to developing myalgic encephalomyelitis.

Chronic pain I have had for probably 25 years. it started with too many on the job injuries. The symptoms associated with lung damage started mildly in 2010. My healthcare team traced the origin back to the last time I was waterboarded. I was in Mexico and they were using putrid water for the task. Once stateside I was treated for infections and parasites. Nothing showed up on lung scans, but the scans missed a tiny spot in the lower left lung. That spot very slowly damaged the lung tissue around it over years, which showed up in scans long after the fact. I think the ME just amplified the symptoms from the damage in recent years.

Much of the nerve damage as well was from years back. Much of it began after I was electrocuted during capture in a foreign country. A few more times of capture and torture just amplified and spread the nerve damage. Of course some nerve pain is from part of a surgery I didn’t ask for or agree to in which the surgeon “found and cut out damaged nerves”. The nerve pain in that region is worse than before that idiot operated many years back. However, I’ve noticed the symptoms have increased with the elevated severity of ME over the years.

Headaches too started long ago. Between the severe nature of my employment, and typically pushing myself to my limits on a regular basis, headaches became a common occurrence. However, with the development of ME I have found that anything acting as a vasodilator gives me headaches. Pushing my energy envelop brings on headaches or migraines; weather fronts, high humidity and the like do as well.

The tinnitus started long ago as well. It is far worse today, and has noticeably increased with the advancement of ME. But tinnitus was brought on by close proximity to too many explosions.

Again, some of the symptoms do not originate, in my case, with ME, but rather events long past, and have simply amplified with the condition of ME, CFS, Hyperadrenergic PoTS, (dysautonomia), fibromyalgia, etcetera.

 

[ScienceWillWin]

Here are my symptoms as requested. My ME, CFS, Hyperadrenergic PoTS, (dysautonomia), chronic pain, fibromyalgia, lung damage, vision loss, and other conditions began in 2005 after I was poisoned with a lethal dose of arsenic trioxide which was mixed with other toxins. After 2 years of healing from that (though ti took about 4 in total), my system began sliding. It was a slow onset noticeably starting around 2007. Symptoms began rapidly advancing around 2014, and once 2017 came around I was completely compromised.

Today these are my symptoms:

• Fatigue - worse in autumn and winter, but poor all year
• Exhaustion - worse in autumn and winter, but poor all year
• Wake up exhausted - always
• Weakness - full body
• PLMD (periodic limb movement disorder)
• Tinnitus - high pitch screaming!!! severe and increases with flair ups
• Lightheadedness, severe - when upright
• Dizziness, severe - when upright
• both dizziness and lightheadedness go away when I lay down, but always return when standing or many times even sitting
• Headaches - regular
• Migraines on occasion
• Head pressure
• Brain stem pressure
• Cervical spine pressure
• Lung inflammation
• Labored breathing
• Shortness of breath
• Wheezing
• Hot burning lungs
• Lung constriction
• Lung ache
• Lose voice easily
• Talking is full body and mind exhausting
• Scalp dermatitis
• Fading fingerprints on both hands
• Sinus swelling
• Nasal passage swelling
• Bronchial irritation and swelling
• Coughing - mostly first half of day
• Raspy phlegmy throat
• Post nasal drip typically in autumn
• Spontaneous body sweating, diurnal mostly and even when cool
• Muscle cramps and spasms
• Body inflammation - moves around
• Strongly fluctuating appetite
• Loss of balance - comes and goes
• Heat intolerance
• High humidity intolerance
• Dehydrate quickly - always thirsty
• Drink a lot everyday
• Always crave salt
• Chest palpitations
• Racing heart
• Immediate highly elevated heart rate upon standing - decreases when lay back down
• typically rises 30-50 beats per minute from resting tachycardia
• Spike in blood pressure upon standing, always
• resting averages 118/72 - standing spikes it to an average between 160/89 to 200/98
• Cognitive difficulties, loss of words, memory, concentration, focus, missing time
• Vision loss when showering
• Vision loss when exhausted
• Vision loss sometimes when standing up
• not darkness, but rather my vision turns to nothing but flat light with washed out colors, no shapes, no form, no depth (blindness without the dark - “whiteout”)
• Wavy vision, like being drunk - comes and goes
• Spots in vision comes and go
• Blurry vision comes and goes, but more often than not these days
• Tunnel vision upon standing
• Nerve pain, many locations
• Nocturnal emission frequency that annihilates my energy, spikes all symptoms and makes me feel literally ill, like the flu
• Severe exhaustion from emission, and takes 1 to 2 weeks to recover
• Emotional challenges - depression, moody, anger, frustration, irritability
• Nighttime body anxiety and insomnia
• Difficulty sleeping
• Low O2 upon waking 84-92 average
• Drops in O2 - diurnal - sporadic
• Cold hands and feet
• Mild fluctuating nausea throughout the day
• Decreased appetite the last few months on average

Those are most of them. There are some more as well but I figure that is enough to list. Actually this is a copy and paste from what I sent my healthcare team two weeks ago. Far too wasted today to have typed it all out now. The PoTS only started last year. Everything else was a steady slow progression since 2014.

Hi-
Just a thought but have you had testing for Tick born diseases done with a lab like IGenex done yet? I have many of your symptoms and ended up with 3 different co-infections that can cause many of your symptoms. Look for an ILADS or Lyme Literate Doctor to test you.
Best wishes-

 

[Nord Wolf]

Just a thought but have you had testing for Tick born diseases done with a lab like IGenex done yet? I have many of your symptoms and ended up with 3 different co-infections that can cause many of your symptoms. Look for an ILADS or Lyme Literate Doctor to test you.

@ScienceWillWin - I've had tick born and mosquito born diseases tested by IGenex a few times in the last 7 years, and always they were negative. With the severity of my last illness the hospital ran all the following (some were shipped out of course), and they were all negative or normal as well:
Magnesium
CMP
Complete blood count and differential
Gram stain
Cell count, CSF
HSV, Molecular detection, PCR
Protein CFS
Glucose CFS
Bacterial culture smear
EHRLICHIA/ANAPLASMA PCR, BLD, ACUTE DISEASE ORDER
Lyme AB, IGG, IGM (tested in-house and also sent to IGenex)
Bacterial culture blood
Sepsis evaluation, lactic acid with reflex
Bacterial culture blood - another

Of course the white blood cell count, platelets and absolute neutrophils were all dangerously low because my system stoped fighting, but they will recover on their own as I strengthen.

 

[linusbert]

Here are my symptoms as requested. My ME, CFS, Hyperadrenergic PoTS, (dysautonomia), chronic pain, fibromyalgia, lung damage, vision loss, and other conditions began in 2005 after I was poisoned with a lethal dose of arsenic trioxide which was mixed with other toxins. After 2 years of healing from that (though ti took about 4 in total), my system began sliding. It was a slow onset noticeably starting around 2007. Symptoms began rapidly advancing around 2014, and once 2017 came around I was completely compromised.

Today these are my symptoms:

• Fatigue - worse in autumn and winter, but poor all year
• Exhaustion - worse in autumn and winter, but poor all year
• Wake up exhausted - always
• Weakness - full body
• PLMD (periodic limb movement disorder)
• Tinnitus - high pitch screaming!!! severe and increases with flair ups
• Lightheadedness, severe - when upright
• Dizziness, severe - when upright
• both dizziness and lightheadedness go away when I lay down, but always return when standing or many times even sitting
• Headaches - regular
• Migraines on occasion
• Head pressure
• Brain stem pressure
• Cervical spine pressure
• Lung inflammation
• Labored breathing
• Shortness of breath
• Wheezing
• Hot burning lungs
• Lung constriction
• Lung ache
• Lose voice easily
• Talking is full body and mind exhausting
• Scalp dermatitis
• Fading fingerprints on both hands
• Sinus swelling
• Nasal passage swelling
• Bronchial irritation and swelling
• Coughing - mostly first half of day
• Raspy phlegmy throat
• Post nasal drip typically in autumn
• Spontaneous body sweating, diurnal mostly and even when cool
• Muscle cramps and spasms
• Body inflammation - moves around
• Strongly fluctuating appetite
• Loss of balance - comes and goes
• Heat intolerance
• High humidity intolerance
• Dehydrate quickly - always thirsty
• Drink a lot everyday
• Always crave salt
• Chest palpitations
• Racing heart
• Immediate highly elevated heart rate upon standing - decreases when lay back down
• typically rises 30-50 beats per minute from resting tachycardia
• Spike in blood pressure upon standing, always
• resting averages 118/72 - standing spikes it to an average between 160/89 to 200/98
• Cognitive difficulties, loss of words, memory, concentration, focus, missing time
• Vision loss when showering
• Vision loss when exhausted
• Vision loss sometimes when standing up
• not darkness, but rather my vision turns to nothing but flat light with washed out colors, no shapes, no form, no depth (blindness without the dark - “whiteout”)
• Wavy vision, like being drunk - comes and goes
• Spots in vision comes and go
• Blurry vision comes and goes, but more often than not these days
• Tunnel vision upon standing
• Nerve pain, many locations
• Nocturnal emission frequency that annihilates my energy, spikes all symptoms and makes me feel literally ill, like the flu
• Severe exhaustion from emission, and takes 1 to 2 weeks to recover
• Emotional challenges - depression, moody, anger, frustration, irritability
• Nighttime body anxiety and insomnia
• Difficulty sleeping
• Low O2 upon waking 84-92 average
• Drops in O2 - diurnal - sporadic
• Cold hands and feet
• Mild fluctuating nausea throughout the day
• Decreased appetite the last few months on average

Those are most of them. There are some more as well but I figure that is enough to list. Actually this is a copy and paste from what I sent my healthcare team two weeks ago. Far too wasted today to have typed it all out now. The PoTS only started last year. Everything else was a steady slow progression since 2014.

Wolf, I commend your strength. I read your list and i get anxiety.
Especially this vision loss you mention makes me panic.
How long does it last? How do you get around with it?

 

[Nord Wolf]

Wolf, I commend your strength. I read your list and i get anxiety.
Especially this vision loss you mention makes me panic.
How long does it last? How do you get around with it?

@linusbert - Appreciated. There are folk here that are worse off than me, but yes I land solidly in the severe category. Typically in autumn through winter my average bed or couch bound time averages 85%. Anyway, yes my healthcare team also thinks it is quite a list...
The vision issues are challenging. The severe blurriness has slowly increased to many times obnoxious levels in the past year. It is the most persistent and aggravating issue of my eyes. Chronic dry eyes is also vey annoying. The whiteout blindness episodes vary in time length. They can last minutes up to a full day at their worst. Usually they happen in autumn and winter when my energy is lowest. They can happen in the warm season, but typically only in hot showers or sometimes when standing up, and only for about 5 minutes after a shower and just 60-120 seconds after standing.
Getting around my house is no real issue. We've been living here for 14 years, so I know this house blindfolded. I know how many steps it is to and from every point. And since I am mostly housebound in autumn and winter, getting around out in the world isn't a big issue. But I do have a white cane and know how to use it when I need to.
Next Tuesday I am being driven 2 hours for a Visual Evoked Potential test - 1.5 hour test. They are testing the speed of nerve impulses between my eyes and my brain. Then the eye doctor in early April. Then the first week of April I have to go back for a 2 hour Autonomic EMG test. Hopefully the tests will supply workable results.

 

[linusbert]

@linusbert - Appreciated. There are folk here that are worse off than me, but yes I land solidly in the severe category. Typically in autumn through winter my average bed or couch bound time averages 85%. Anyway, yes my healthcare team also thinks it is quite a list...
The vision issues are challenging. The severe blurriness has slowly increased to many times obnoxious levels in the past year. It is the most persistent and aggravating issue of my eyes. Chronic dry eyes is also vey annoying. The whiteout blindness episodes vary in time length. They can last minutes up to a full day at their worst. Usually they happen in autumn and winter when my energy is lowest. They can happen in the warm season, but typically only in hot showers or sometimes when standing up, and only for about 5 minutes after a shower and just 60-120 seconds after standing.
Getting around my house is no real issue. We've been living here for 14 years, so I know this house blindfolded. I know how many steps it is to and from every point. And since I am mostly housebound in autumn and winter, getting around out in the world isn't a big issue. But I do have a white cane and know how to use it when I need to.
Next Tuesday I am being driven 2 hours for a Visual Evoked Potential test - 1.5 hour test. They are testing the speed of nerve impulses between my eyes and my brain. Then the eye doctor in early April. Then the first week of April I have to go back for a 2 hour Autonomic EMG test. Hopefully the tests will supply workable results.

how fast does the blindness transition from "normal" to blind, or the other way around?
if you close your eyes, is still everything white or does it get dark?

i fear this soo much because i started to get problems with my eyes as well the last months. its just a slight blurry ness and i can usally still read. i had one or 2 phases were i couldnt read or focus anything but just on one eye like it got a few strengths worse in seconds - took 30 minutes to go back to normal. i also had those weird phases were i can see clear but it feels like my brain cannot bring the optical data from left and right eye together. or the images dont fit together. it feels really weird.
sometimes its also like i can see and the image is factually clear, but i somehow have a hard time figuring out what i am actually seeing.
for me it feels like as if the brain is running out of power. its always connected to an exhausted state.
and this scares me as fuck. especially since i lost my smelling on last corona time. smelling isnt that important compared to visual and hearing. but realizing how fast a sense can get lost terrifies me soo much.

you talk about it as if its "easy" for you to come around in your place. for me this sounds like horror.

"There are folk here that are worse off than me, but yes I land solidly in the severe category"
yes. i think the same, when i read your list i think like what am i even whining about.

 

[Nord Wolf]

how fast does the blindness transition from "normal" to blind, or the other way around?
if you close your eyes, is still everything white or does it get dark?

@linusbert - it can happen quick, less than two minutes. Even its return is quick. If it is happening and I close my eyes I just see dark. The whiteout is only with eyes open.

i fear this soo much because i started to get problems with my eyes as well the last months. its just a slight blurry ness and i can usally still read. i had one or 2 phases were i couldnt read or focus anything but just on one eye like it got a few strengths worse in seconds - took 30 minutes to go back to normal. i also had those weird phases were i can see clear but it feels like my brain cannot bring the optical data from left and right eye together. or the images dont fit together. it feels really weird.
sometimes its also like i can see and the image is factually clear, but i somehow have a hard time figuring out what i am actually seeing.
for me it feels like as if the brain is running out of power. its always connected to an exhausted state.
and this scares me as fuck. especially since i lost my smelling on last corona time. smelling isnt that important compared to visual and hearing. but realizing how fast a sense can get lost terrifies me soo much.

Well, first obvious question - when was the last time you visited an eye doctor? I wear contacts so by law need to go once a year for check ups. The eye doc every year tells me my eyes are healthy, so the issue is either in the brain or optic nerve. Hence the neurologist ordering the Visual Evoked Potential test. I guess the test is far more accurate in seeing and measuring optic nerve health, function, and brain visual sensory than say an MRI.
But my vision has been slowly getting worse over the last 10 years. My healthcare team said my development of ME/CFS was probably about 16 years ago now. My guess is that the vision issues are thus part of the dysautonomia conditions.
Blurry vision can be a symptom of PoTS as well. But it can be a symptom of many things, including just aging eyes.

you talk about it as if its "easy" for you to come around in your place. for me this sounds like horror.

When I was still working spec ops my vision was fine. But in the last 10 years it has degraded fairly quick. Today without my contacts I am 400% over the level of “legal blindness” numbers. But so far my vision can be corrected with contacts so I’m not legally blind. However, every year my prescription gets higher, and yet my eyes are “healthy”. So hopefully this Visual Evoked Potential test shows something useful and workable.

Point being I’ve been dealing with this for a number of years. I wouldn’t say it is “easy”, but I am used to navigating visual issues, so much so that a few years ago I had white cane training because I knew there would be times I would need it. And since that training I’ve had to relay on the white cane numerous times. The cane I have is white with a red bar. This signifies I’m visually impaired but not totally blind.

When my vision started sliding I didn’t have tinnitus, so I could really rely on my hearing. But today with the severe level of tinnitus, it does tend to make low vision harder. This is one reason I’m trying to get in with an audiologist this April.

My rather lame suggestion concerning your vision issues is to get your eyes looked at and tested. If they look healthy then perhaps seek out a neurologist specializing in autonomic disorders who could order a Visual Evoked Potential test.

Sense is how we interact with the world, so yes when our sense wane it isn't just physically challenging, but also mentally and emotionally so. For me it helps knowing the medical advancements in the senses category. They can do far more for improving senses than they can in doing anything about ME/CFS! I wouldn't get too worried about it until you see some eye professionals and perhaps get some testing so see if anyone can target your vision issues.

"There are folk here that are worse off than me, but yes I land solidly in the severe category"
yes. i think the same, when i read your list i think like what am i even whining about.

Whine all you want, we all have the right. I doubt anyone here minds.
Yes my life has never been easy. Much of it was fraught with danger and pain. But I was strong, healthy, high energy, and driven, so it was a challenge. Today I’m still driven, but that super strength, high energy, and solid health went down the drain… I try to keep a positive attitude and interact with people from that stance, but in all truth, the reality of my current life is very difficult.

 

[linusbert]

Well, first obvious question - when was the last time you visited an eye doctor?

i visited my doctor so long ago that i do not even have one in the city i am living right now.
my optics guy closed and sold his shop to another guy - i learned this just recently when i asked him to make the exact same glasses he made back then and send me with mail.
i do not know exactly how long that was i purchased the glasses for the first time, like 7-9 years ago.
my eyes didnt really change , because i still can see really sharp.
the 10 years before that they didnt change much either. i think the eye problems stopped with 20yo... and stayed constant. just the rotation got a bit weirder.
the only thing they ever diagnosed with my eyes was that they are pretty dry.. that was when i was a kid. didnt change for the better for sure.
i visited the eye clinic within the last 10 years , 2 times. because my contact lenses broke and swam in my eyes.

i dont think my vision problems are due to physical changes. maybe the dryness makes problems now. but what could i do against that despite artificial eye drops , which dont change much.

i think the symptoms are mostly because of muscular and brain exhaustion. though the one time i lost sharpness in one eye i attribute to dry eyes.

there are mitochondriopathies which bring on such weird eye problems. i hope its just a temporary thing and gets better again... weeeelll

 

[Nord Wolf]

i visited my doctor so long ago that i do not even have one in the city i am living right now.

Maybe it is time to find another? Even if nothing more than to be sure it isn't a physical eye issue?

i dont think my vision problems are due to physical changes. maybe the dryness makes problems now. but what could i do against that despite artificial eye drops , which dont change much.

I agree, even the "best" eye drops don't seem to last more than a minute before the dryness returns in force. My eye dryness issues have gotten a lot worse over the last year. Couldn't tell you why.

you talk about it as if its "easy" for you to come around in your place. for me this sounds like horror.

I to up front, at this point I would rather have very low vision the rest of my life, but have all my energy back and not ever deal with ME/CFS and PoTS again, than to live with this crap and have good vision. People with solid energy and poor vision can live really great lives. But living with severe ME/CFS just sucks... and then to have failing vision on top of it is just ugly and cruel.
Well, that is just my opinion...