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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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A treatment that helps me tremendously

Johannes

Senior Member
Messages
332
I tried eating sugar several times for this anxiety, which I would also call high mental stress. I found out that it helps only if it causes my body to produce hormones that cause happynes or good feelings. I found better help from other things that produce more of these hormones such as comforting words from my friend, and helping a stranger. I pet hugging would also do the trick. Why? Because when my wife was still with me, these symptoms were a lot less. She didn't need to hug me but just be there for me and close to me, and it helped. The same thing happened to me when my friend moved to live with me on January. But now that I am here in Spain alone, I can't feel the presence, and the symptoms are worse.

I know drinking alcohol did help but I haven't drunk for 11 days, and I won't drink for a long long time.

But the fact still is that if I don't eat protein containing food every 3 to 4 hours, I feel lousy.
 
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Nord Wolf

The Northman
Messages
594
Location
New England
My wife passed away last night. 😪 Her heart failed. I miss her so much!
Fucking hell man. Dealing with vision loss, the waiting for new visual aid tech, learning how to navigate and use it, struggling through a prolonged winter, getting sick twice since December… etc, I didn’t even find this news until now. Words can’t express the sympathies. I know you and I are near the same age, and cannot even fathom your loss. I’m sorry your year began that way and I’m not surprised your health as been extra challenging ever since.

Just a stray idea for you… I recently started using this device for vagus nerve health. It has settings for stress, anxiety, burnout, sleep, and pain. I notice using it multiple times a day makes a difference in both insomnia and nervous system burnout. I have a friend who got it last year and uses the burnout setting for grief and claims positive results.

Pulsetto

https://pulsetto.tech

Not any guarantee it would help with anything for you, of course, just a random idea.

I do miss the sun. We have had four major storms in the past 4 weeks. The 4th one is ending tonight. It was yet another blizzard that dropped 2.5 feet (76 cm) of snow and we lost electricity for 20 hours yesterday. A week ago, we had another storm that dropped 27 inches (69 cm) of snow. The week before that we got hit with 18 inches (45 cm). And the week prior to that one, 16 inches (40 cm) of snow fell. I want to sit in the sun and feel the warmth of spring already.
 

Johannes

Senior Member
Messages
332
"Fucking hell man. Dealing with vision loss, the waiting for new visual aid tech, learning how to navigate and use it, struggling through a prolonged winter, getting sick twice since December… etc, I didn’t even find this news until now."

Sorry to hear about your struggles @Nord Wolf !

"Words can’t express the sympathies. I know you and I are near the same age, and cannot even fathom your loss. I’m sorry your year began that way and I’m not surprised your health as been extra challenging ever since."

Thank you! It has been tough. But only at the end of last week I got rid of my stress and anxiety. My depression is almost gone. I feel it coming back every now and then. The sun has finally done its job 🙂 I still have some memory problems and problems with my muscle recovery after walking more than 3km per day. And I don't exactly feel pleasure normally, from food, or other. But I do feel happyness every now and then. I am still a bit tired.

I have done most of my greaving. So soon, some might say? I still miss my wife a lot but as my positive feelings happen at the same time, it is hard to be sad. And my cognitive functions are not exactly healed yet.

I had a good marriage. All good memories. Nothing to regret. We loved each others dearly. And she was the best for me. We were a match in every way. When I go back home, I will take her ashes to a forrest, where she wanted to have her final resting place, by the sea.

"Just a stray idea for you… I recently started using this device for vagus nerve health. It has settings for stress, anxiety, burnout, sleep, and pain. I notice using it multiple times a day makes a difference in both insomnia and nervous system burnout. I have a friend who got it last year and uses the burnout setting for grief and claims positive results."

Thanks for a tip. I tried similar piece of equipment and it didn't work for me.

"I do miss the sun. We have had four major storms in the past 4 weeks. The 4th one is ending tonight. It was yet another blizzard that dropped 2.5 feet (76 cm) of snow and we lost electricity for 20 hours yesterday. A week ago, we had another storm that dropped 27 inches (69 cm) of snow. The week before that we got hit with 18 inches (45 cm). And the week prior to that one, 16 inches (40 cm) of snow fell. I want to sit in the sun and feel the warmth of spring already."

wow! So much snow! In Finland, where I live, it is some 5 to 6 degrees Celsius day time. The snow is gone. But the trees are still not green.

Here is a picture taken from my terrace at Spain.
 

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Johannes

Senior Member
Messages
332
Something happened the 10th of Aprill, when my fried and her daughter arrived. I was affraid that I would be so very tired after spending time with them daily and sightseeing the country but I am only slightly tired after walking 6 to 9 kilometers per day and driving car daily for couple of hours for a week. My bowel isn't iflammated after eating food in restaurants. I can't explain why I am feeling as well as I normally feel at my best on August. My ques is that my loving friends have positive effects on me and my psychological stress and my being so much sunbathing during the last year or so. Also the psychological stress that I had concerning my wife's sickness is gone. I had it for four years. And some of the stress caused by my wifes death is gone.

I can't explain this otherwise. I feel healthier than ever since 2011 I got sick.
 

Johannes

Senior Member
Messages
332
Back at home. It seems that some 6 to 9 kilometers day was too much but I think I can easily walk some 3 to 4 km a day and do cooking and shopping. I am recovering quite fast from the last two weeks. I am now at my best summer condition and summer in Finland is about to start.
 

Johannes

Senior Member
Messages
332
The sun has been shining only for a week or so, since I came from Spain. It has been quite cold in Finland. But for the last five days I have been sunbathing. But I have done too much. Lots of work in the garden. So I have been very tired. But now I am resting for a longer period of time. It shouldn't take more than four days to feel OK. I can already feel that sunshine helps.
 

Johannes

Senior Member
Messages
332
I have been so quiet because I have been quite exhausted. I have tried to find a balance for my life after my wife's death. My wife did so much to help me. My friend who moved into my house to help me is causing me challenges because of social interaction that causes me fatigue. We talk too much. And as much as we like to talk, both of us are experiencing that it causes too much fatigue. Her daughter is very lively and that too is having the same effect on us. It makes us tired. She ofcourse chooses her daughter over me, so many time I just have to be quiet so that I don't cause her fatigue. It is unclear what her diagnosis is. Doctors don't yet know. To me it looks like maybe EDS/CFS plus something else.

Now that I had had so much sunshine I thought I could do more. So I have cooked a dinner for us daily but that seems to be too much. Also I have done too much work at the backyard.

And sailing is now causing me troubles. Although my friend is eager to participate all the things onboard, she doesn't yet know much about sailing at the archipelago. In addition to everything I did before at the sea, I now have to steer my boat, navigate it and read the sea charts. And listen to her daughers constant talking. That all made me very tired only after two nights at the sea. After five days we came home exhausted. My friend also became very tired of our sailing. She has now been laying in her bed for the last week. Me too on my on bed.

All this has made me quite tired. I now know that I have to sell my boat next year, unless she learns to help me more at the sea. Also, I am about to stop making dinners for us.

Another problem is that it is more expencive to live in this house than I thought. I may have to sell it and move to my brothers new house that will be ready at the end of next year. My 84yrs old father is moving in too. I like the idea.

Althoug I have become to like my friend and living with her and her daughter, this arrangement makes us both too ill. We like each others. Well, maybe I am a bit atracted to her too. But this relationship can not work. It makes us both very tired.
 

Johannes

Senior Member
Messages
332
When two persons with similar symptoms, just like mine, plus more, like each others and want to spent time with each others and talk to each others, there will be calamity. Our nervous systems are allergick to each others. We become sick. Very tired. Unfortunately, she became so much sicker than I. We must move apart. This makes me very sad. I loved her.

Because of that I now don't get her rent, I have to sell my home. Because she can not sail with me, and I don't know anybody else that could, I may have to sell my sailboat. But there is a silver lining in all of this. Now I get to move to my brother's and father's, who live next to each others in a seaside farm.

This is tough! First I lost my wife, now my very good friend moves out, and I have to sell my house. Luckily, I have friends that are close to me after I have moved. And my family. And a new lovely friend in Spain. A lady. We like each others. Nothing romantic though. But you never know...😉
 

Johannes

Senior Member
Messages
332
It has been stressfull. And as many of you know, stress makes our CFS symptoms worse. My friend has a mental sicknes of which she never told me. She through me out of my own home. She has so bad mental problems that my stress is overwhelming. She is yelling me and accusing me things that aren't true. I have to kick her out. But it is hard because I like her so much. But she makes me so sick that even sunshine doesn't help me anymore. As if my wifes passing away wasn't enough.

But there's a silver lining there. I learned, that many of us CFS patients benefit B12 injections and especially, when we have stress, increasing B12 dosage makes our stress related symptoms go away. As a matter of fact also other symptoms are relieved with it. I tried it with a higher dosage, and it really helped me with my mental stress.
 
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Florida Guy

Senior Member
Messages
146
Just a stray idea for you… I recently started using this device for vagus nerve health. It has settings for stress, anxiety, burnout, sleep, and pain. I notice using it multiple times a day makes a difference in both insomnia and nervous system burnout. I have a friend who got it last year and uses the burnout setting for grief and claims positive results.
That sounds similar to a device I was talking about in another thread. The main difference is my home made design using a tens unit costs less than $30 with the ear clips and the pulsetto costs $250. They don't really tell you how it works they just say it "stimulates" the vagus. It probably works on the same principal, by putting a little electricity into the vagus nerve. They say it uses a battery so its definitely electrical.

Stimulating the vagus does help so I think its legit, its just overpriced.
 

ruben

Senior Member
Messages
311
Hello all. Some years ago, on top of my ME/CFS I developed a cold along with a cough. My cold disappeared but the cough just wouldn't go. This chronic cough must have gone on 6-12 months. I read something online about vitamin D. Took my first tablet last thing at night and, a miracle, my cough had gone next day. I was feeling generally quite a bit better too with my ME/CFS. I've never had chronic cough since but my general improvement in my overall wellbeing didn't hold. I'm on 400 I.U of vitamin D a day, which is the recommended dose, 1 tablet a day in other words. Just wondered what a maximum dose would be safe for me to go up to in order to increase my general wellbeing. Suggestions much appreciated.
 

hapl808

Senior Member
Messages
2,216
People take some very large doses of Vitamin D. Ideally, if you have access, you should test your blood levels and then adjust your dosage accordingly. You might end up taking 400 IU, maybe 4,000 IU, maybe more.
 

pamojja

Senior Member
Messages
2,434
Location
Austria
Just wondered what a maximum dose would be safe for me to go up to in order to increase my general wellbeing. Suggestions much appreciated
That is very individual. Always best to start with the lowest dose and increase gradually over weeks, months and years.

Personally, during the last 15 years I needed in average 8,000 IU/d, to get a 25(OH)D3 serum test result of 70 ng/ml. But also have to add: when I accidentally overshoot to 135 ng/ml sudden reversal of a too high CIMT (calcification of the carotid arthery) for the first time happened.

The first toxicity sign is too high calcium serum test results, or a too high PTH. Usually with no other condition like CKD, that doesn't happen with a 25(OH)D3 below 200 ng/ml-

With higer dose vitamin D3, inform your self about necessary co-factor nutrients. At least, plenty of Magnesium and vitamin K2.
 

Johannes

Senior Member
Messages
332
Hello all. Some years ago, on top of my ME/CFS I developed a cold along with a cough. My cold disappeared but the cough just wouldn't go. This chronic cough must have gone on 6-12 months. I read something online about vitamin D. Took my first tablet last thing at night and, a miracle, my cough had gone next day. I was feeling generally quite a bit better too with my ME/CFS. I've never had chronic cough since but my general improvement in my overall wellbeing didn't hold. I'm on 400 I.U of vitamin D a day, which is the recommended dose, 1 tablet a day in other words. Just wondered what a maximum dose would be safe for me to go up to in order to increase my general wellbeing. Suggestions much appreciated.

Here some facts about safe vitamin D levels. This was a long time study:

Patrick J.McCullough Douglas S. Lehrer Jeffrey Amend, Daily oral dosing of vitamin D using 5 000 to 50 000 international units per day long term hospitalized patients: insights from a seven year experience. The journal of steroid biochemistry and molecular biology 189/2019, ss 228-239

https://www.sciencedirect.com/science/article/abs/pii/S0960076018306228

Vitamin D dosage is individual and should always be based on laboratory tests. My vit D, PTH and ionized calsium are tested regularly. Although not very often now, when the best dosage has been found a few years ago.

I use approximately 200 mcg = 8000 IU a day as injections. My vit D level is around 280 nmom/l = 112 ng/ml. With that and with sunshine, I feel a lot better. If I inject more, it doesn't help more. Once my vit D level was 403nmol/l but I didn't feel any difference. It should be noted that I have MCAS symptoms and this may be the reason I need so high dosage to get the best results. In addition I inject methylcobalamin, which helps my cognitive and possibly other symptoms.
 

Johannes

Senior Member
Messages
332
I learned, that many of us CFS patients benefit B12 injections and especially, when we have stress, increasing B12 dosage makes our stress related symptoms go away. As a matter of fact also other symptoms may be relieved with it. I tried it with a higher dosage, and it really helped me with my mental stress.

Yes, here some more information concerning my discovery:

https://www.drmyhill.co.uk/wiki/B12_-_rationale_for_using_vitamin_B12_in_CFS

I currently inject 3300mg methylcobalamin under my tammy skin every day. I have got rid of almost all of my psychological stress and the sensation, which I thought was anxiousness but is something else caused by CFS. This has also helped a lot with my cognitive functions, such as ability to concentrate, my memory and brainfog.

I used to inject 2500mg every second day but it didn't ease my stress and anxiousness. Now I have red, that some CFS patients can even go back to work because of these injections. And the longer one injects, the better the results. The higher the dosage, the better results.

Also, if I drink alcohol, I need more methylcobalamin to keep my symptoms away. But I rarely touch the stuff (alcohol).

But this is not cheap. It costs approximately 75 to 100 euros per month including needless, syringes etc. Our government doesn't approve my medication so I have to pay everything my self. I order my methylcobalamin from Germany because it is not sold in Finland.
 

Johannes

Senior Member
Messages
332
where do you get it if i may ask?

i am currently taking 2500μg methylcobalamin daily but orally and i noticed no improvement over my regular hydroxocobalamin injections (1500µg).
As you may have red from the studies, hydroxocobalamin didn't work even nearly as well methylcobalamin for CFS.

I buy my methylcobalamin from:

https://arnika-apo.de/

You can make your inquiries to this email in english:

manufaktur@arnika-apo.de
 
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