Importance of deep refreshing sleep

[62milestogojoe]

Yes, the cognitive function is included, but that only started 10 years after the onset of illness.

It is interesting to read about other people's experiences of ME. It makes me wonder if there are different MEs and if that is the case is there a common denominator to the disease or are there different factors responsible for different kinds of ME.
26 years is a substantial time to have survived this, after 6 years it feels like a prison.

 

[Mij]

There are subgroups. My worsening developed after continuing aerobic exercise and taking immune modulators.

 

[62milestogojoe]

There are subgroups. My worsening developed after continuing aerobic exercise and taking immune modulators.

Being unable to exercise properly is one of the most terrible things about ME I think. If a person is used to an active physical life then having it taken away is a kind of theft which undermines the purpose of life. I still deeply miss playing sport and being on the high mountains...it is my hope that one day I will be able to resume that life.

Do you mind outlining what immune modulators you were taking? I take up to 20 tablets a day to function as well as I can.

 

[Mij]

I took Imunovir.

 

[62milestogojoe]

I took Imunovir.

I am not familiar with it but will check it out. During these 26 years have you tried a wide variety of supplements/drugs and found a group that you feel are reliable-in the sense that they help keep a functioning baseline?

 

[Mij]

I have tried many supplements over the years and what has helped me most is treating the deficiencies. I took magnesium and taurine injections off and on for years, this was very helpful. I continue to rub magnesium gel transdermally to keep my levels optimal.

I also take Ubiquinol, but take breaks from it because it makes me feel wired and interrupts my sleep. Not sure it keeps me at baseline. Pacing yourself is the best medicine for this illness.

 

[62milestogojoe]

I think that is good advice and it is how I try to survive-by a kind of rule system with regard to pace which I or other people break sometimes. Over the time period of my ME I have tried so much stuff that sometimes I find it difficult to recall what was a waste of time and what was potentially damaging and what is worthwhile.

This balancing trick is difficult and with the nature of fluctuation I get put on my arse sometimes when I feel I have done nothing out of the ordinary. ME is like repressive master. I take Mg twice a day and CoQ10 daily too. Do you still experiment with other options?

 

[Mij]

No, I don't experiment with other options. Saving my money

 

[62milestogojoe]

No, I don't experiment with other options. Saving my money

I am a fiend with a Cap m Quik machine churning out kilos of shit! Waiting for a 500g delivery of q10 and alpha gpc at the mo. Thanks for sharing your knowledge