• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

back after few months!

notmyself

Senior Member
Messages
364
hi everyone , it s been a while since i ve been here..i want to share my experience and maybe give some hope.I want to point out that recovery is possible and i'm the living proof.Please keep that hope in your mind ,cause without it is almost imposible.Things that improve for me in the last few months since i post here:

1.Blood pressure is stable now around 120-70( it used to be high,especially when standing )
2.My standing gentle walking heart rate is around 85( was much higher) and my resting heart rate is 60 or less..
3.The fatigue is better.( but plenty of room for improvement)
4.My gastro intestinal problems are much better .from being bloated or with diarhorea 6 days out of 7 ,i am 2 day from 7 now..
5.pain levels are tha same( never been major for me)
6.the sleep issues come an go..but except last night on wich i sleep just 5 hours i am on a 2 week streak of sleepin 7-8 hours a night without sleeping pills.
7. I still get dizzy and lightheaded plenty of times ,but somehow it doesn t feel that bad latelly,is either i get used with it or is just milder
8.Even tho it doesnt feel comfortable,and i'm pushin hard to do it ,i am able to run!!..i had run more than 100 km in the last 3 months.i had run a 5 km race in 20:30 min wich is actaully a good time for healthy people asweel..The estimated vo2max predicted from this race time is 48..when i tested 4 months ago on a cpet test i tested 32..I also run a 10 k in 47 min few weeks ago, So must definatelly my vo2 max and energy metabolism is higher than used to be!

Very important is to note that after my diagnostic i was close to suicide!And now i m here on the path to healing..KEEP THE HOPE ALIVE !!and rememer that if someone unfortunatelly suffered for years with this disease that doesn t necesarry mean you will be the same ,if depression settles in ,you will not even be able to see the improvements in your health!!
 

notmyself

Senior Member
Messages
364
Hello @notmyself - Congrats on your healing, that's great news!!:D I am making slow but steady progress in my healing as well, in the last 4-5 months. What did you do that helped you turn things around? For me, it's been mostly treating dysbiosis and leaky gut.

Jim
I take some supllements ,Noni extract for immune system regulation, Passion flower with valerian for slepp,MSM an antiimflamatory ,good for joints, and resveratrol wich is good for improving and regulating blood circulation and also eliminate fat and fried oily food cause i have high cholesterol..In my case i think the major cause for my ilness is blood circulation and venous insuficienty
 

pattismith

Senior Member
Messages
3,941
That's great!

This forum is wonderful to keep the hope alive. I've been ill for 35 years, with no diagnosis,
but I still keep thinking I will be cured one day, and reading your improvement story helps me a lot, thank you!
 

notmyself

Senior Member
Messages
364
That's great!

This forum is wonderful to keep the hope alive. I've been ill for 35 years, with no diagnosis,
but I still keep thinking I will be cured one day, and reading your improvement story helps me a lot, thank you!
I hope you will!try focusing in improving blood flow,if exercise is not possible,you can try suplement like resveratrol(is a grape extract,it's the reason why they say red wine is good for circulation) or arginine a vasodilator, also a diet to thinner the blood ,or statins in case you ahve cholesterol or medication that improve circulation depends what is your cause..i think blood circulation should be a priority for treatment with these disease..without a good circulation the blood doesn t supply the organs and all the tissues with enough oxygen and nutriments and this can easily lead to pretty much all the symptoms in cfs..wish you luck and good health
 

pattismith

Senior Member
Messages
3,941
..i think blood circulation should be a priority for treatment with these disease..without a good circulation the blood doesn t supply the organs and all the tissues with enough oxygen and nutriments and this can easily lead to pretty much all the symptoms in cfs..wish you luck and good health

the more I am thinking about it, the more I agree with you! Many of us may have blood circulation issues and localized hypoxia.
My profile is different than yours (low cholesterol, low blood pressure), but the result is more or less the same!
Thank you for your advices, take care!