What it feels like to have ME/CFS and finding hope

I know how this feels man. Thank you for sharing your experience with ME

I’m so glad I came across your video today. Very similar experience, though I’m still struggling to reach the things you talked about near the end. Still trying. Thanks for making this

Just over half way through, but have to comment and say thank you for taking the time to describe this awful condition. The fact that it goes on year after year with very slow improvement, no matter what you try, makes it all the more difficult to live with. You describe my symptoms perfectly, right down to the right hand side neck, shoulder and arm pain. My illness started around 2012 after a lot of stress and coming off antidepressants too fast, it was made worse by trying to go back onto several medications. Now I'm left with what I presume is ME/CFS, but no official diagnosis, validation or medical support. I live alone, so have had to manage the best I could, getting out to shop for groceries has been difficult at times, but I'm a fair bit better now than I was a few years ago, so its slowly getting easier. I've had a few periods of feeling completely recovered, but then have become sick again, so I have hope that with more time, complete recovery is possible. My experience is that increases in stress are what cause this illness in the first place and cause set backs in recovery. Any kind of stress will do it , physical, chemical, emotional or mental and combinations of all kinds of stress. A complete change in lifestyle is needed in order to recover I think. But its the proverbial catch 22, many people are too sick to make the changes needed in order to start to get well. Having understanding, supportive friends and family can make a big difference I expect.

Your story helped me realize that I was dealing with this much longer that originally thought. I just kept masking the symptoms allowing this to grow to fully debilitating state. My wife thinks I had CFS/ME for about 3-4 months. But I began randomly throwing up and dizzy spells for about 1.5 years. I would take Epinephrine (adrenaline) for fatigue to get through my days. Kratom for painkilling. Just that I became debilitated in November and bed ridden in Dec. The stories I hear of years and years battling break my heart and make me ashamed of my suicidal thinking for my short stint. I grieve for those who do no have an understanding family (spouse in my case). For those who saw no hope and then did end their lives I weep. For those still suffering or going through waves of illness as I expect I will I pray. So far I am recovered quickly via strict paleo diet (low fruit even), fermented carrots and sauerkraut and water Kefir, Massive vegetables and prebiotics (I think these did better than the probiotics), mostly grass fed beef and non-gmo and organic, and then taking diflucan (fluconazole) orally and with enema. I share if someone out there needs to try another program. I feel like 90% after just 2.5 weeks on the medication. So Lee, what causes relapse for you? Is it when you fight a virus or other infection? What about food, stress, sleep, and for me the big one is ANGER! When I get really angry I have a relapse Thank you for sharing your story, helped me today.

Thank you,you discribed this horrible illness so well.I am suffering everything you talked about.Ive had it for 18 years !...I hope you are managing it okay...

Hi Lee. Just watched your video. Thanks for sharing. Sorry you are suffering so much but you sound like such a strong and amazing person. The stuff about your soul really hit home. Take care xx

Watched it all now...........& u r being real. Thumbs up! Good description.

Can totally relate Lee. Especially the drinking alcohol. Havent drank alcohol since 2008. Everyday is a hangover with no party. Great video. Hope youre doing okay. Its crazy how theres usually a trigger. A virus / trauma / stress / prescribed drug withdrawal and the body and CNS go What the actual F! And the WTF is extended over years lol x its not funny but we have to laugh. Someone on my video commented " its like internal sunburn". Never heard the feeling in my body described so well.

Thank you so much for sharing. I have good days, bad days - weeks and months with this. Having a relapse with CFS/ME. You helped me figure out some of the things I have been dealing with are part of this same illness. I think the anxiety also comes from fear and always feeling behind on life due to exhaustion. I've had this for years and it suddenly is getting worse with age and I am now really not pushing myself and saying, "No" - because the last time I did not, and resorted to Adderall to get through a freelance gig, I am still sick over a month later. I am having to learn how to be my own friend and adviser through this. One of the hardest things is people not understanding and trying to push me to do more. I am also getting the users out of my life (because I am a nice and helpful person in spite of about three different chronic illnesses), and it helped to really run me down over the past two months. If they don't understand, oh, well. They can not be in my life anymore.

I am sorry you feel this way. I am in the same both only worse. Please see my story, I developed total food intolerance even water is causing a autoimune reaction. Is insane.

I found your video very helpful and think you are very brave. The things I have found helped me were Vit D supplements and very high doses of good quality probiotics with sugar free diet. If these do not seem to be helping in short time, about two weeks, they may not be for you. I also started doing mindfulness body scan meditations twice a day a few weeks ago. This is the most relaxing thing I have tried to date. I have noticed a very gradual improvement in energy levels and sleep. I use Bose noise cancelling headphones- just on silent when I am overwhelmed by noise. Tuning in to music can increase tinnitus so beware. I also believe that we create our own reality so I try to focus on elements of my body that are doing OK. As far as is possible I try to ignore my ME. This is not easy as I am mostly bed bound. Good luck.

i get this from an ssri adverse reaction. burning skin, toxic feeling, can't barely walk anymore because the strange feeling in the legs, heavy pains all over, nerve pains, heavy fatigue. I know it's a nervous system thing. But i cant do anything about it i eat more healthy but can't excercise. I just survive the days minute after minute for longer than a year now. and thinking of ending this mess. I lost my job, my wife, my friends and i guess the next thing is my house if i cant work. i can't even go to a store or something How can people go on with such conditions? how to make money for rent and groceries? how to find joy? i don't get it. A work boss won't say take a nap no problem... What keeps you going...? if it takes 10 year to recover how to get a job after 10 years unemployed im 30 years old :( thanks for the vid. you sound so calm and accepting even when in such condition. I guess i have to much grief and anger to doctors who did this to me and ruined my life. Is there perspective? that makes me suicidal Can i do something about it except healthy diet? i cutted sugar but can i take fruit? thanks if someone replies and have some insights