neurological cognitive problems with a crash ?

[Loba Esteparia]

I am starting to worry I have other neurological condition or I got severe . Sadly I can't go to the doctor after I crashed badly in August and I dont recover despite being bedridden and resting.
The trouble asking for an appointment with a neurologist and a brain scan its at the moment too much for me to handle.
I have severe memory issues, I can't handle a conversation , I can't sleep at night doe spasms in my legs , I am totally cramped , I could handle it with diazepam but I dont have any more and I dont get a prescription here. Sore throat, sore muscles and headache are also a problem.
Does anybody had this phase and did it got better just with resting? if it goes one like this I think I am going to starve some day because I can handle my appointments to get my prescriptions, cook and clean. I had help for a month from a friend but I have to go on on my own now., It has to get better.

 

[Rufous McKinney]

after I crashed badly in August and I dont recover despite being bedridden and resting.

I"ve experienced some pretty prolonged, multi month type crashes that took incredible amounts of time to improve from. I did however improve, given enough rest.

I don't know what happened in August, @Loba Esteparia but thats still recent history.

Neurological issues with this can get considerably worse in acute states and that can last quite a Long time.

Oh like 60 days it took me once, to recover from a physical push. Six months to recover from some viral digestive thing I get too often, that nobody can diagnose. A year, it took me a year to "recover"from 3 months not home visiting my daughter, and not participating in most things most of the time.

I can only imagine how tough it is if you are on your own. I have a husband who retrieves groceries and will go to the pharmacy- where I am convinced I'll catch the next plague if I enter that building.

None of my referrals have been pursued- seeing doctors is exhausting and so often pointless, I really don't want to go. So I"m not at a neurology referral, myself.

So it can get better...with more rest.
This is not an easy thing to figure out, pacing, crashes, body chemistry. Its "exhausting".

 

[andyguitar]

So it can get better...with more rest.

Yes, and resting also means not spending to much time on the internet which can use up a lot of energy and can be to much stimulation.

 

[Rufous McKinney]

Yes, and resting also means not spending to much time on the internet which can use up a lot of energy and can be to much stimulation

oh Yeah......the hardest part is pulling the plug on Dopamine.

 

[Emmarose47]

hi Loba
Thank you for reaching out and sharing ...
You are going through tough PEM phase by the sound of it ... Cognitive issues are very common for us and can easily be severe . Many have crashed for months .
For me its been important to keep hold of the trust that i will come to more stable ground again and i have each time. At my worse in Dec it was weeks and felt an eternity .
Learning to truly rest with very deep guided relaxations , keeping internet use down {easier said than done when often it is our only connection to outside world } turning off blue light ive found v helpful ..
using herbs for anxiety .. doing some gentle stretching of muscles on the bed when possible as too prolonged stationary . would cause me more discomfort and lots of meditation ..
Try not to worry { i know its hard not too } the body is needing to take me down so it can find itself again .
Can you identify what led to the crash ?
I too have had long periods of not being able to get anywhere ... I have had doctor and nurse out to the house . Got my perscriptions delivered from the pharmacy and found a volunteer to do shopping .... can you ask for anyy of this where u live ?

 

[HABS93]

Time and rest it does get better. An extremely amount of time though like a month type wait.
I'm a chef and I get the worst crashes cause I work too hard.
Sometimes i get some pretty good shifts then feel brain dead the next day and struggle through my entire shift.
Have you looked at any of the forums about PEM and sometimes you can reduce them. I believe theres about weed how it helps with crashes.
I've had to use weed after work and if I dont my crashes are more noticeable. I've also gained a reduction in PEM from eating 80% organic . Although it's hard to keep at it. Sometimes I get a chicken burger or a pizza cause I crave the taste. Then my PEM and stomach are worse the next day.

 

[Loba Esteparia]

Time and rest it does get better. An extremely amount of time though like a month type wait.
I'm a chef and I get the worst crashes cause I work too hard.
Sometimes i get some pretty good shifts then feel brain dead the next day and struggle through my entire shift.
Have you looked at any of the forums about PEM and sometimes you can reduce them. I believe theres about weed how it helps with crashes.
I've had to use weed after work and if I dont my crashes are more noticeable. I've also gained a reduction in PEM from eating 80% organic . Although it's hard to keep at it. Sometimes I get a chicken burger or a pizza cause I crave the taste. Then my PEM and stomach are worse the next day.

hey
you still work with ME??? how do you manage that?
i have severe MCS too. I am already 16 years sick. At the beginning I could work. I had to. I understand your position. Are you considering to ask for disability benefits or its not in your plans? Living from social help/ disability , if you didn't worked 30 years, its misery. So I can't afford much organic. Where are you living? How is your diet ? Do you eat dairy, gluten?
many questions. Thanks for your answer....
BTW: i am doing better ( cognitive)

 

[Loba Esteparia]

hi Loba
Thank you for reaching out and sharing ...
You are going through tough PEM phase by the sound of it ... Cognitive issues are very common for us and can easily be severe . Many have crashed for months .
For me its been important to keep hold of the trust that i will come to more stable ground again and i have each time. At my worse in Dec it was weeks and felt an eternity .
Learning to truly rest with very deep guided relaxations , keeping internet use down {easier said than done when often it is our only connection to outside world } turning off blue light ive found v helpful ..
using herbs for anxiety .. doing some gentle stretching of muscles on the bed when possible as too prolonged stationary . would cause me more discomfort and lots of meditation ..
Try not to worry { i know its hard not too } the body is needing to take me down so it can find itself again .
Can you identify what led to the crash ?
I too have had long periods of not being able to get anywhere ... I have had doctor and nurse out to the house . Got my perscriptions delivered from the pharmacy and found a volunteer to do shopping .... can you ask for anyy of this where u live ?

hey thanks ...no sadly I dont have any doctor ...who even want to get informed about ME ...I still didn't found anyone who makes house visits ( after 7 years xD) . Entire healthcare here is collapsed.
I am feeling better cognitive now, btw. But I had kidney problems ( if isn't something, is the other lol . But I have always something in my body wich fails ) .
Sending hugs

 

[Woof!]

So I can't afford much organic. ... How is your diet ? Do you eat dairy, gluten?

After eating a diet heavy in meat and dairy for decades (no grains outside of oatmeal because my body doesn't tolerate them), I decided, due to weight gain in my belly that made me feel like I was pregnant, to forgo all meat and 99% of dairy, to eat only whole foods (lots of veggies and nuts with cool spices that bring out their flavor). I'm soooooo pleased with the results. Not only did all the extra weight disappear, all the money that went toward meat and dairy could be put toward healthier, organic items (tho' I still can't get organic nuts).

As for muscle spasms, Ca++ citrate (400 mg 3x daily) and Mg++ citrate (100 mg 3 x daily) make a huge difference. Taking this dose 3x daily is vital, I find. If I try to take more twice a day, it's not the same. Note that Ca++ supplements can't be taken with thyroid meds (and other meds, too, probably).

 

[HABS93]

hey
you still work with ME??? how do you manage that?
i have severe MCS too. I am already 16 years sick. At the beginning I could work. I had to. I understand your position. Are you considering to ask for disability benefits or its not in your plans? Living from social help/ disability , if you didn't worked 30 years, its misery. So I can't afford much organic. Where are you living? How is your diet ? Do you eat dairy, gluten?
many questions. Thanks for your answer....
BTW: i am doing better ( cognitive)

Completely understandable that you cant work. I had a good 4 month break though cause of covid.
It's mainly muscle memory as I've only been sick for 3.5 years and I just turned 28.

Eventually I'll have to go on disabilities but Iove my job and have healed abit. That abit has been able to let me work hard and not doing amazing but I'm not getting migraines anymore. My PEM is still there after the 2nd shift but being around people in a busy environment. I cant think about anything except a lot of orders coming in at once. So I overload the sensory and during the rush I can almost hit the zone.

Organic is expensive. I forced myself to switch but some days I dont eat well . Usually my first day off when I have my PEM. Sleep all day and eat protien.
I rarely eat cheese. I usually drink kefir now. But I think gluten doesnt do well my stomach.
Very sensitive to coffee . I dont drink alcohol. Sensitive to the bad oils like deep fried anything. I switched to organic coconut oil in a cast iron pan.
One cup of coffee helps alot for work as well. No more or less. Just 1 cup.
I make my breakfast and lunch/dinner for work. Eat apples on way home.
Make chicken salad with 7 different veggies in it. I have to cook these meals all in one shot. Because after work I come home and crash for 10 hours else I'll feel bad for the next shift .

 

[Woof!]

but Iove my job.

That brought a lump to my throat, because I so loved doing what I was doing even tho' it made me sicker...

 

[hapl808]

I so loved doing what I was doing even tho' it made me sicker

Same here. Did it for as long as I could, and then probably another couple years that I should have already stopped.