Hi everyone. Though I am still recovering from the move I wanted to let y'all know that I will be doing the second charitable donation next week.
Again, I'd like to thank for their support as well as helping out by posting about this project and setting this account as the beneficiary. This helped so much.❤️🦄
On a personal note, I don't want to jinz things but I have added a new supplement and am taking a very specific stack and it's working better than anything else has. With my main condition ME/CFS there are no treatments and frankly patients are just left to suffer on their own with no help. Less than no help because doctors do not take them seriously at all. Too sick to eat? Try exercise (which is proven through invasive CPET and blood tests to make patients worse, much worse)
Most doctors don't even know what PEM is even though it's in the diagnostic criteria . There is. no excuse for this. It's like saying you don't know asthma can cause shortness of breath and wheezing then don't believe your patients when they describe it.
Here's a great article about exercise and ME/CFS including evidence of pre-load heart failure.
So I have been my own guinea pig for decades. I may have found something that actually works.
I am getting some relief from this supplement stack for my POTS symptoms too, but I am also taking supplements and about once a week I will take one beta blocker (I often have more tachycardia at night ).
The main thing I am noticing with the new stack is the fact that I just moved and am not in a PEM crash. We did hire movers but it was still a lot. Exertion like this usually leads me to being bed-bound completely for weeks, often times unable to eat because even my jaw has no energy.
That is not happening now though. I feel mostly ok, except am in a lot of pain and a little more brain fog than usual. It's not just delayed onset muscles soreness, though I have that too. It's more like feeling like my muscles are slowly being ripped off the bone (this is typical of me in general but especially in a crash).
I can't remember a time ever where I did not crash after doing so much activity several days in a row. I see this as a good sign but also recognize it may be a fluke. Time will tell.
Is a remission event likely in my future?
The thing I am noticing and this could be a little PEM is that my energy seems to have flipped. I used to have a lot of mental /cognitive energy but barely any physical energy. I am feeling a little less mental energy and am a bit more brain foggy than usual but physically I am feeling more energy.
This has been a trend since adding the new supplement to the stack. I think my mitochondria is actually producing energy again.
If you are interested in what I am taking let me know in the comments and I will write another post about nit and include some references to studies etc. I am not quite there energy wise to do that today.
As always thanks for reading.