A treatment that helps me tremendously

[Long Haul Mono]

...but then I have to worry about her too. I thought I had done my worrying and anxiety, concerning my wife's wellbeing. When she died, my anxiety was gone. Now I have to worry about my friend. This is a bit too much for me right now. But she takes it easy. She can still work. It is just finding out what kind of work is good for her. The medical personnel are taking good care of her.

Worry: seems to be the mortal enemy of ME/CFS sufferers.
I've heard it mentioned (medically) a number of times as well as hearing from forum members' experiences. There seems to be a type of disconnect between the conscious mind and the physical response, leaving the physical stress response to seemingly go out of control.

I find I need to keep my thoughts in check all day and night (as long as I'm awake). Any run-away thoughts or concerns can turn into stomach-churning stress that's completely disproportionate to what's on my mind at the time.

Trying to explain this to others (without ME/CFS) and you get thrown into the 'mental health issues' category by non-doctors. I guess the only way people can understand this condition is to experience it for themselves, and I hope they never do considering there is still no cure.

Personally, meditation has been my primary way of dealing with stress/worry that can get amplified when I'm exhausted. By chance, I also found a legal medical marijuana dispensary when I was on holiday in Queensland last year. They've been a big help. I found THC and CBD cannabis are valuable additions to the ME/CFS symptom management 'tool kit', particularly THC to help with nocturia/insomnia and CBD during the day.

... My drinking was anxiety related. I don't feel like drinking at all. If I drink in the future, I only drink every now and then. Not daily, not even weekly. But I might be without alcohol for a long time.

...for those of us that can drink!

Alcohol (for me) is like drinking methylated spirits (based on the smell... I haven't actually drank metho ). I'd get sick before I'd get tipsy, but I'm happy to have said goodbye to alcohol. I don't miss it.
Likewise, the cannabis (particularly the THC) doesn't get me 'stoned'. I get a slight buzz, and it's great to get me to sleep and keep me there instead of waking hourly to go to the toilet, and there's no hang over effect like with sleep drugs.

I might see my friend and her daughter in Spain, just before I fly back on the 22nd of April. Maybe for a week or two, I hope. We'll see.

I hope your trip to Spain does you well. Don't forget to post some pictures!

 

[Johannes]

I have been five days here in Spain now. It was hard for me to travel here, because it was only three months ago when we were here with my wife and the dog. Everything here reminds me of her.

And my friend who is living in my house, just had her first crash down with her CFS/EDS, which has not been diagnosed yet. She was in her first rehabilitation but they have no idea what's wrong with her. All she can do is sleep. Although her bed has not been comfortable and she has not been able to sleep much. Now she got a new bed. She's been the only one who I can talk to, about everything.

There is a change that she might have the version of EDS, that leads to a rapture of an arthery around 50 yrs of age. It breaks my heart. I love her so dearly. We are still just friends but inhave feelings for her.

 

[Johannes]

There has been two sunny days since the 3rd of February. They both had several hours of UV radiation, over UVI 3. I even tanned a bit. As experienced in previous years, if there is enough sunshine, I will start to feel better in two weeks. And even better in a month. But it seems that during February, there will be several cloudy days, so the time will tell.

I have walked too much. Now that my wife is not participating my daily routines, I have to walk less. Right now I am very tired. Had PEM in three days. Slept 60 to 90 mins. during daytime, each day. Yesterday, I ate in a restaurant, which caused me really bad systemic reaction. There were some artificial chemicals in that food.

My friend is feeling better now. They actually could help her with her symptoms, and depression and anxiety.. She is just starting to learn about her sickness and it seems that she is not in as bad shape as I am.

Sorrow is a terrible thing. Grief.

Enclosed a couple of pictures from here.

 

[pamojja]

They both had several hours of UV radiation, over UVI 3.

What a contrast. Been since 19th Jan. on my South Indian beach again, not one cloudy day. Since 2 days it got warmer - sweating like in a sauna - therefore I checked for the first time the UVI: AT 11! at midday, right before I usually swim almost an hour in the ocean, and as much sunbathing too. Walking only little..

Sorrow is a terrible thing. Grief.

I understand, grieved myself many years. But there is a way right through it, and it could pass.

 

[Johannes]

Two days ago I felt that sunshine helps again. Slowly, I am getting better. Depression/anxiety has been difficult but now I can also feel the effects of sunshine there. I am getting rid of my anxiety. Depression takes a bit longer to disappear. What's left is sorrow. Slowly, that too is a bit easier to handle. I can now walk 3km with the dog without getting fatigue but that is too much for me in order for me to have strenght to prepair my food. Sunshine affects my mood. It feels so good to feel the sunshine, its warmth, and the light.

 

[Johannes]

Two days ago I felt that sunshine helps again. Slowly, I am getting better. Depression/anxiety has been difficult but now I can also feel the effects of sunshine there. I am getting rid of my anxiety. Depression takes a bit longer to disappear. What's left is sorrow. Slowly, that too is a bit easier to handle. I can now walk 3km with the dog without getting fatigue but that is too much for me in order for me to have strenght to prepair my food. Sunshine affects my mood. It feels so good to feel the sunshine, its warmth, and the light.

Well, it seems to take time untill I feel better. I've had help with the dog but now my help flew back to Finland. I am getting a bit tired for walking the dog. I tested some methylcobalamin (injection) for my anxiety and stress, and sleeping problems. It helped, so that means that I am not getting enough out of sunshine yet. Maybe another two weeks sunbathing will make the difference.

 

[Johannes]

Last thursday, the 14th of March I really started to feel the effects of sunshine. My depression and anxiety disappeared. I could walk more. I had walked maximum 3km per day before, but now I walk some 4 to 5 km per day. And I am doing rubber band exercises 3 times a week and my back and stomach muscles 3 times a week. I feel a lot better. I do too much, and I am a bit tired. My muscles don't work as they should yet. And my brain don't either. I still have problems to sleep well too. This all is pretty normal for me, normally around at the beginning of June, in Finland.

My sorrow is a lot less. The stress caused by my wife's death made my symptoms a lot worse, especially on February. But now it seems that the sunshine is helping as usual. I don't think I can feel the difference anymore.

I am going to do a bit less in the future, so that I am not as tired as I am now.

My friend and her daughter are flying to help me on the 10th of April for two weeks. Then we will fly home togethet.

 

[Johannes]

Sorry about long writing.

I normally inject vitamin D once every 12 days. There is a reason for that. If I inject it every 14 days, I get symptoms but only in winter or if I do too much physical exersises. A week ago I desided to inject myself every 14 days but forgot the injection, so I injected after 15 days. That was too long a time. I wasn't ready even for once a 14 days. So I got symptoms: headache, muscles didn't work well, mental stress, depression. But at the same time I had started to walk 5 to 6 km per day. That was too much. Together with bowel inflammation, I felt terrible. Inflammation made me very tired. And there was no sunshine for a week.

All this made me feel quite ill. I could barely walk with my dog 2,5-3km a day. I had problems to make my own food. And I could not eat the normal foods without inflammation getting worse. I stopped drinking alcohol, because that is one thing causing the inflammation.

It normally takes me some seven days to get better, if I inject vitamin D too seldomly. Now day number 8 is beginning and I can feel the difference. It takes normally some 5 days to feel better if I do too much. It takes 11 days to get rid of most of the inflammation and start to feel better. Sunshine started again two days ago.

This wouldn't be the case normally in the middle of summer. But these kind of things happen in the beginning of summer season. It should be noted that like last autumn, I stated to feel the effects of sunbathing after two weeks and after four weeks I felt a lot better. But that is just the beginning. Earlier, before Spain happened, it had taken almost two months for me to be at my best wellness. This can still be expected.

The first sunshine with UV index 3 or more were here 13th of February. 29 days after that I started to feel a lot better but the stress caused by my wifes death made my symptoms worse. It took around six week to get to the point where I am normally after four weeks and it seems that my recovery is still slower than normally. I had terrible anxiety and depression from physical doing. One reason for this is, because my wife helped me so much with cooking, walking with the dog, shopping and other. But now I am well enough to do those things by myself again, if I am carefull and don't do too much. And if I get help with shopping.

The health care system in Finland will arrange some help for me there. It is yet to be seen how much they can help. In the meanwhile, my friend will help me as much as she can.

But I have made a new discovery. I knew from earlier, that I need to make sure I eat every 3 to 4 hours, and my food need to contain enough animal protein, otherwise I feel a bit ill. Now I discovered, that the symptom I call anxiety, may not be anxiety at all but something similar, because if I don't eat every 3 to 4 hours, I get this "anxiety". And that feeling is terrible. But my "anxiety" is gone if I eat regurlarly. In Summer, my eating habbits don't cause me "anxiety". This is good news for me. Now I can manage this symptom too, easier.

It is very clear to me, that if I want to feel as well as possible, I need to travel to Spain every Winter, and I need help here. I need electric kick-bike to give my dog enough exercise. I need to live close to food store or I need transportation to food store. I need to fly here sooner, after the Summer in Finland, around the beginning of October or in the middle of it latest. There is no UVI 3 here beginning the third week of November. And it doesn't exist before the second week of February here. So I can live in Finland in December and January. These are the rules

I will write more in two weeks.

 

[Long Haul Mono]

I normally inject vitamin D once every 12 days.

Have you tried Calcifediol (Activated D3)? I take 40ug of this each day for immune support.

I stopped drinking alcohol, because that is one thing causing the inflammation.

Alcohol, chocolate, sugar, anything that can be labeled "Junk food" is off limits due to the (gut) inflammatory effect that follows.
...(personally) considering none of these are really beneficial, maybe it's for the better.

But I have made a new discovery. I knew from earlier, that I need to make sure I eat every 3 to 4 hours, and my food need to contain enough animal protein, otherwise I feel a bit ill.

I found this works for me too, namely to (try to) keep energy levels from "swinging". Eating unprocessed food (mostly a carnivore diet with a few exceptions) has helped me a lot.

Now I discovered, that the symptom I call anxiety, may not be anxiety at all but something similar, because if I don't eat every 3 to 4 hours, I get this "anxiety". And that feeling is terrible. But my "anxiety" is gone if I eat regurlarly. In Summer, my eating habbits don't cause me "anxiety". This is good news for me. Now I can manage this symptom too, easier.

That's sounds very familiar. You call it "anxiety" I refer to it as "anonymous stress", ie I don't have anything on my mind that would justify anything close to the gut-twisting stress I'm experiencing at that time.
The only clue I have is that I have pushed myself too much without taking a rest break, and over the days this 'anonymous stress' (likely to be a dysfunctional 'fight or flight' response) gets worse until I get more rest.

 

[Violeta]

Sorry about long writing.

I normally inject vitamin D once every 12 days. There is a reason for that. If I inject it every 14 days, I get symptoms but only in winter or if I do too much physical exersises. A week ago I desided to inject myself every 14 days but forgot the injection, so I injected after 15 days. That was too long a time. I wasn't ready even for once a 14 days. So I got symptoms: headache, muscles didn't work well, mental stress, depression. But at the same time I had started to walk 5 to 6 km per day. That was too much. Together with bowel inflammation, I felt terrible. Inflammation made me very tired. And there was no sunshine for a week.

All this made me feel quite ill. I could barely walk with my dog 2,5-3km a day. I had problems to make my own food. And I could not eat the normal foods without inflammation getting worse. I stopped drinking alcohol, because that is one thing causing the inflammation.

It normally takes me some seven days to get better, if I inject vitamin D too seldomly. Now day number 8 is beginning and I can feel the difference. It takes normally some 5 days to feel better if I do too much. It takes 11 days to get rid of most of the inflammation and start to feel better. Sunshine started again two days ago.

This wouldn't be the case normally in the middle of summer. But these kind of things happen in the beginning of summer season. It should be noted that like last autumn, I stated to feel the effects of sunbathing after two weeks and after four weeks I felt a lot better. But that is just the beginning. Earlier, before Spain happened, it had taken almost two months for me to be at my best wellness. This can still be expected.

The first sunshine with UV index 3 or more were here 13th of February. 29 days after that I started to feel a lot better but the stress caused by my wifes death made my symptoms worse. It took around six week to get to the point where I am normally after four weeks and it seems that my recovery is still slower than normally. I had terrible anxiety and depression from physical doing. One reason for this is, because my wife helped me so much with cooking, walking with the dog, shopping and other. But now I am well enough to do those things by myself again, if I am carefull and don't do too much. And if I get help with shopping.

The health care system in Finland will arrange some help for me there. It is yet to be seen how much they can help. In the meanwhile, my friend will help me as much as she can.

But I have made a new discovery. I knew from earlier, that I need to make sure I eat every 3 to 4 hours, and my food need to contain enough animal protein, otherwise I feel a bit ill. Now I discovered, that the symptom I call anxiety, may not be anxiety at all but something similar, because if I don't eat every 3 to 4 hours, I get this "anxiety". And that feeling is terrible. But my "anxiety" is gone if I eat regurlarly. In Summer, my eating habbits don't cause me "anxiety". This is good news for me. Now I can manage this symptom too, easier.

It is very clear to me, that if I want to feel as well as possible, I need to travel to Spain every Winter, and I need help here. I need electric kick-bike to give my dog enough exercise. I need to live close to food store or I need transportation to food store. I need to fly here sooner, after the Summer in Finland, around the beginning of October or in the middle of it latest. There is no UVI 3 here beginning the third week of November. And it doesn't exist before the second week of February here. So I can live in Finland in December and January. These are the rules

I will write more in two weeks.

The anxiety condition that improves with eating regular balanced meals sounds like hypoglycemia.

So that made me wonder what does Vitamin D have to do with hypoglycemia and I found this.

https://diabetes.org/food-nutrition/diabetes-vitamins-supplements/low-vitamin-d-insulin-resistance
Another study tied higher vitamin D to a lower risk of insulin resistance, when the body is unable to respond to or use the insulin that it’s producing.

However, hypoglycemia can also be caused by the adrenals not being able to keep blood sugar levels stable; it is their job to do that when blood sugar levels drop.

" Vitamins D, E, and K are important parts of keeping your adrenal system functioning properly." A deficiency of D can be involved in adrenal fatigue.

Another possibility is a problem with glucagon. I can't find a relationship between glucagon and Vitamin D, mostly just see that biotin is important for it.

"When you haven't eaten for several hours and your blood sugar level drops, you will stop producing insulin. Another hormone from your pancreas called glucagon signals your liver to break down the stored glycogen and release glucose into your bloodstream.Nov 18, 2023."

 

[Johannes]

Have you tried Calcifediol (Activated D3)? I take 40ug of this each day for immune support.


Alcohol, chocolate, sugar, anything that can be labeled "Junk food" is off limits due to the (gut) inflammatory effect that follows.
...(personally) considering none of these are really beneficial, maybe it's for the better.


I found this works for me too, namely to (try to) keep energy levels from "swinging". Eating unprocessed food (mostly a carnivore diet with a few exceptions) has helped me a lot.


That's sounds very familiar. You call it "anxiety" I refer to it as "anonymous stress", ie I don't have anything on my mind that would justify anything close to the gut-twisting stress I'm experiencing at that time.
The only clue I have is that I have pushed myself too much without taking a rest break, and over the days this 'anonymous stress' (likely to be a dysfunctional 'fight or flight' response) gets worse until I get more rest.

I haven't tried calcitriol because it is dangerous to be used as an injection. I am unable to use oral medication.

I make all of my food at home from scratch. Although, sugar don't cause inflammation to me, it has been seen from colonoscopy and laboratory tests.

The same thing here. This anxiety is not coming from thoughts that would normally cause axiety. It is a feeling that is separete from thoughts.

 

[Johannes]

The anxiety condition that improves with eating regular balanced meals sounds like hypoglycemia.

So that made me wonder what does Vitamin D have to do with hypoglycemia and I found this.

https://diabetes.org/food-nutrition/diabetes-vitamins-supplements/low-vitamin-d-insulin-resistance
Another study tied higher vitamin D to a lower risk of insulin resistance, when the body is unable to respond to or use the insulin that it’s producing.

However, hypoglycemia can also be caused by the adrenals not being able to keep blood sugar levels stable; it is their job to do that when blood sugar levels drop.

" Vitamins D, E, and K are important parts of keeping your adrenal system functioning properly." A deficiency of D can be involved in adrenal fatigue.

Another possibility is a problem with glucagon. I can't find a relationship between glucagon and Vitamin D, mostly just see that biotin is important for it.

"When you haven't eaten for several hours and your blood sugar level drops, you will stop producing insulin. Another hormone from your pancreas called glucagon signals your liver to break down the stored glycogen and release glucose into your bloodstream.Nov 18, 2023."

It is yet to be tested weather sugar would help my anxiety, a pear, or just plain sugar. That would tell me wheather this is hypoglycemic, right? But atleast I know that animal protein helps with slow carbohydrates.

My cortisol levels are so low in the evenings that one can't even get readings from my saliva. But it is normal during daytime. This doesn't affect my symptom.

But what ever is causing it, this problem doesn't exist during summer, when I have been sunbathing adequately. And bad inflammation in my bowel, as well as overdoing physical exersize makes it worse, during winter.

 

[Long Haul Mono]

The same thing here. This anxiety is not coming from thoughts that would normally cause axiety. It is a feeling that is separete from thoughts.

That's always been the difficult thing to explain to non-ME people (not that we need to explain ourselves ).
Without any other information I simply consider it a sympathetic nervous system 'flare up' that often precedes a crash.

The odd thing is, I have both CBD and THC cannabis. When the worst of that 'anonymous stress' hits, it seems to 'blast through' any calming effect that CBD or THC might provide. No idea why.

It is yet to be tested weather sugar would help my anxiety, a pear, or just plain sugar. That would tell me wheather this is hypoglycemic, right? But atleast I know that animal protein helps with slow carbohydrates.

I found this post and on the topic of carbs and thought you may find it interesting. I know I did.

 

[Violeta]

It is yet to be tested weather sugar would help my anxiety, a pear, or just plain sugar. That would tell me wheather this is hypoglycemic, right? But atleast I know that animal protein helps with slow carbohydrates.

My cortisol levels are so low in the evenings that one can't even get readings from my saliva. But it is normal during daytime. This doesn't affect my symptom.

But what ever is causing it, this problem doesn't exist during summer, when I have been sunbathing adequately. And bad inflammation in my bowel, as well as overdoing physical exersize makes it worse, during winter.

Whatever it is, it's good you realized that eating a balanced meal every 3 or 4 hours helps.

Reishi mushroom powder might give you a boost.

 

[Johannes]

Whatever it is, it's good you realized that eating a balanced meal every 3 or 4 hours helps.

Reishi mushroom powder might give you a boost.

Thanks! Sorry, can't eat mushrooms.

 

[Johannes]

By the way, I have lost 7kg in two months because I am too tired to cook or because I don't feel like eating and partly, because I drunk less beer. I haven't had any alcohol now for a week. I quess greaving does that to you too.

 

[Johannes]

...

There is a change that she might have the version of EDS, that leads to a rapture of an arthery around 50 yrs of age. It breaks my heart. I love her so dearly. We are still just friends but I have feelings for her.

My friend got her test results. She doesn't have the thing affecting her heart. I am so happy and relieved.

 

[Violeta]

Thanks! Sorry, can't eat mushrooms.

I can't eat mushrooms, either. Besides causing gut pain I showed up as being allergic to them in an allergy test. Medicinal mushrooms must be very different, reishi always helps me with a couple of symptoms.

 

[Johannes]

The anxiety condition that improves with eating regular balanced meals sounds like hypoglycemia.

So that made me wonder what does Vitamin D have to do with hypoglycemia and I found this.

https://diabetes.org/food-nutrition/diabetes-vitamins-supplements/low-vitamin-d-insulin-resistance
Another study tied higher vitamin D to a lower risk of insulin resistance, when the body is unable to respond to or use the insulin that it’s producing.

However, hypoglycemia can also be caused by the adrenals not being able to keep blood sugar levels stable; it is their job to do that when blood sugar levels drop.

" Vitamins D, E, and K are important parts of keeping your adrenal system functioning properly." A deficiency of D can be involved in adrenal fatigue.

Another possibility is a problem with glucagon. I can't find a relationship between glucagon and Vitamin D, mostly just see that biotin is important for it.

"When you haven't eaten for several hours and your blood sugar level drops, you will stop producing insulin. Another hormone from your pancreas called glucagon signals your liver to break down the stored glycogen and release glucose into your bloodstream.Nov 18, 2023."

The next time I had this "anxiety" which also included high mental stress and irritability, I tried some refined sugar. I had had these symptoms going on for an hour or so, and they started to become irritative, stronger, so I ate a little less than a table spoon of sugar, and my symptoms were gone in 15 minutes! I have to test this again. But it seems that this may be similar to a so called Reactive hypoglycemic reaction (tried to translate this from finnish). I had eaten healthy meal 2 hours prior to my symptoms: cabbage, green beans, chicken breast, a little potatoes. If this works! I mean, I have lived with this for 13 years, and only now I may find help for this. Thank you in advance!

 

[Violeta]

The next time I had this "anxiety" which also included high mental stress and irritability, I tried some refined sugar. I had had these symptoms going on for an hour or so, and they started to become irritative, stronger, so I ate a little less than a table spoon of sugar, and my symptoms were gone in 15 minutes! I have to test this again. But it seems that this may be similar to a so called Reactive hypoglycemic reaction (tried to translate this from finnish). I had eaten healthy meal 2 hours prior to my symptoms: cabbage, green beans, chicken breast, a little potatoes. If this works! I mean, I have lived with this for 13 years, and only now I may find help for this. Thank you in advance!

I was awake in the middle of the night and when I read this it made me so happy.

Reactive hypoglycemic reaction is the correct translation. Good for you for figuring out a way to discern whether that was the cause!