Positive for Epstein Barr, my fatigue has lasted 7 months now and am going back to the doctor to see if I am still positive. I also have low cortisol levels. I am willing to bet MOST CHFers have some kind of autoimmune/viral condition that was the initial cause of the problem.

Also, to reply to the first post - I have not been able to work at all. I changed my diet, basically flood my system with antiviral foods and herbs such as lemonbalm and reishi teas, take raw milk, royal jelly, vit d, zinc, natural food selenium supplement to name a few things I do. I was getting better, back to 75 percent for a few weeks back in September and then crashed again. Slowly getting better though - I am NOW making gut health a number one priority to help strenghen my immune system (probiotics and fermented foods), lots of veggies, whole foods. Recently took a trip to Hawaii and used the wheel chair service at the airport and a scooter at the resort we stayed at. I am hopeful that I can at least get back to 80 percent (hopefully better) of what I was. It will depend on if I can get this mono virus inactive again ASAP. Hopefully it is inactive now, I will find out soon. Doing whatever it takes to stay positive as most of us know, depression lowers immunity. Also absolutely no sugar or caffeine, ever. The only time I get sugar is if it is a hidden ingredient I do not know about. Lots of laughter, hugs, and refusal to worry about anything anymore. No more carrying the world on my shoulders. I am done working full time, even if I got back to 100 percent. I realize I will need to stay on top of this for the rest of my life. My health is more important than money. I am preaching to myself people!:) Oh, and if I get tired, I take a nap, get to bed by 10:30 or earlier, 8-10 hours of sleep a night. I used to work a lot - now I at least get to spend more time with my family, and I do appreciate that. I also read again, I had not picked up a book in 15 years.

I got sick in 1988, after shoulder surgery. For about a decade, I was stuck in bed, then I gradually got better, to the point I could go out and about, to the beach, even go on short trips, if I made sure to get in bed rest at least 16-18 hours a day (that includes sleep time). I think I was about 40%, maybe 50% of normal then. I had high levels when tested for some viruses about 10 years back, but I can't remember which ones. Something like HHV6, maybe EBV? Then about 5 years ago, my husband developed PTSD related to his time in the service. He raged at me daily, and was pretty awful. The stress made me much sicker, and now I'm about 5% of normal, bedbound most of the time, housebound the rest of the time. He's in a VA hospital now, and I'm hoping he can work out his issues there. I work on not stressing to the best of my ability, and use prayer and various meditations when I start to stress out. It's easier with him gone, but life is never stress free. I'm very careful with my diet, vegetarian, no sugar, no junk food, enough protein. I count my steps every day (well, my phone counts them for me) and I use that to gauge how much I can do. Right now I'm crashed again, and can only get about 150 steps a a day. When I feel better, I can get maybe 600 a day. When I left to to live with a friend 2 years ago, I got up to 1000 steps a day, and felt much better, but when I came back home I got worse again.. Sometimes I overshoot my steps, or one of my kids has major issues and I get pulled in, and I end up sicker again. One thing about CFS that is hard for me is that even after all these years, is that it's so hard to gauge what I can do! Often I don't feel tired when I overdo it, until later when I crash, so I try to be very self disciplined and not increase my steps by more than 10% at a time. I'm hoping I can work back up to maybe even 20% of normal, that sounds pretty wonderful to me! I'd love to see the sky again. I'm kind of worried though, that getting older (I'm 67 now), combined with 5 years of extreme stress, may have broken my body down so far I won't ever get there. I hope not. But then I remember how much sicker some people are, unable to even eat or talk at all, and I am grateful I can at least use a computer.

I started noticing the first mild symptoms about 1987, a couple of years after I left school. For a few years I lived a pretty normal life but my condition gradually worsened until I was forced to give up my apprenticeship. I got a job which only involved four and a half days work a fortnight and being on call every night (though I wasn't actually called out very often). That allowed me to recover and after 5 years of that, I felt well enough to go back into a more demanding job.

I went into foster care where I was able to work around my fatigue and for 15 years, functioning at about 70% most of the time, with occasional bad patches that saw me at about 50%. At the end of that time, a particularly stressful situation tipped me over the edge.

The last 5 years or so have been a living nightmare of fatigue. I have been basically housebound most of the time, only able to gather enough energy to get out for essential shopping and appointments by hoarding my energy for those occasions. Last year, when even walking from the bedroom to the kitchen of my tiny house was almost more than I could do, I had what I've termed a major meltdown (as chronicled in my journal) which was my lowest point both physically and emotionally.

I'm now still functioning in what I think of as maintenance mode, I just get through each day as it comes and avoid focusing on all the "can'ts" in my life, hoping that soon a treatment will be discovered or I might enjoy a significant remission. The plus side is that I now have a mobility scooter, which allows me to get around the shops and such without triggering a huge crash. That added freedom has been a life saver.

Hello everybody!
I’m 21 years old and I have “Chronic Fatigue Syndrome”. It’s been 5 years since it started. Most doctors confused it with severe depression but there where never fully convinced...
It has been getting worse over the years. I’ve been diagnosed these year.
My parents are psychically unhealthy and emotionally very unhealthy.
We are having economic problems.
My sister is studying in Argentina and doesn’t want to work yet. My littles sister just finished school. She would work to help pay her studies. My family is very toxic.
And me? I had to leave my studies, I can barely work. There is nothing I wished more in my life than to earn enough money to be independent and be able to help my family somehow. I used to be so smart, so full of life. But now I can’t, and I’m not sure how long I won’t be able to do so.
My parents don’t care about my wellness. They are too bad and busy to do so. They just kinda hate me because yes, somehow I am useless human who is bringing more problems. There is no member in my family apart from my parents who could help me and my friends don’t have money, they are studying (I have few friends).
I've tried to read everything I could. This year the digestive symptoms became very clear (leaky gut). I'm doing the Low Fodmap diet and trying to do streching and meditation at home. What else could I do to get better by my own? :(
I don’t know what to do. Maybe there would be more hope if I had money to receive treatment. I just can’t find the solution, the only solution I can’t think of is suicide.
Any recommendations or solutions you can think of? PLEASE

Hello there LMNKeternity. Time is on your side. There is more awareness of this disease these days and more research happening and fortunately you are still young. So you must not give up despite your suffering and your disadvantaged home life. I'm sorry to hear that you are not receiving the love and support that you need. So take shelter here and anywhere else that may be beneficial to your needs. You deserve to be loved and cared for, and although you cannot see a light of rescue at the present moment, it can still manifest in your future. Just do your best no matter how little, and know that you are not alone. Do not allow this disease to define yourself.
There are many sad stories here at DS. The bravery of those people who suffer with CFS on their own is truly admirable..

Hello there LMNKeternity. Time is on your side. There is more awareness of this disease these days and more research happening and fortunately you are still young. So you must not give up despite your suffering and your disadvantaged home life. I'm sorry to hear that you are not receiving the love and support that you need. So take shelter here and anywhere else that may be beneficial to your needs. You deserve to be loved and cared for, and although you cannot see a light of rescue at the present moment, it can still manifest in your future. Just do your best no matter how little, and know that you are not alone. Do not allow this disease to define yourself.
There are many sad stories here at DS. The bravery of those people who suffer with CFS on their own is truly admirable..

I recently discovered a blog by a Buddhist woman who has CFS. I've found some of her posts very helpful. She's also written a book called How to Be Sick, though I haven't read that. She's so compassionate and kind, understands what having CFS is like, has some good suggestions on how to deal mentally when you can't do much physically, and that really helps me on days I feel like I just can't handle any more sickness. https://www.psychologytoday.com/blog/turning-straw-gold

I have been doing a lot of research on what I call the Epstein Barr virus devil, and stealth viruses in general. I know many of us are positive for antibodies with Epstein Barr, western medicine does not take that seriously. Well, this means the virus is alive and active, I do not care what the doctors think. The reason we cannot get it to go dormant is because the virus goes deep into the cells, it takes over our immune cells, just everything, and antiviral herbs and medicines cannot touch it. I recently read some information from a specialist named Dr. Martin, the center for Complex Infectious diseases, from Minnesota. He said we need to thin the blood to get the virus to come out, (he likes garlic, a natural blood thinner), then create an environment in our bodies detrimental to viral replication (this is hard, no eggs, grains, dairy, corn, gluten, and keep the diet higher in lysine than arginine - I have just switched to goat milk, cheese, etc, ), then boost the immune system by promoting higher levels of interferon, interleukins, while increasing NK cell (natural killer) activity ( I read vit c does this). To visit his site, go to ccid.org. It is refreshing to read about a doctor who is aware that a multitude of issues stem from stealth viruses, and are unrecognized enough if at all in the medical community because they would have to admit that they have been wrong about a multitude of illness for years, and how they come about, not to mention all of the pharma. medicines that treat them. I will keep you all posted on how this new diet is working, and how I am feeling.

Not much spunk today so short.
I had EBV in high school, but recovered in a month or so.
I had herpangina in Dec 1993, never got my energy back, and was dx with PVFS in May or June 1994. I managed working as long as I did not much else.
I have had two longer periods of remission, one was 9 months. The last time I felt well for more than 2 days was a couple yrs ago. These days I have about 4 hrs a day of "energy" broken up in pieces. I keep our small house as well as I can mostly from a rolling chair. I choose times when my brain is a bit sharper to do the bills and our medications. I have the desire to do much more, for example I really want the xmas decorations to be up already but every time I try to get into them and get it done I manage to just about open the bins and put out a piece or two and Im done for the day. It's depressing but I don't have depression as such. I accept my life for what it is. I have had the very definite feeling lately that my push over the past year to get us downsized and moved has done me in permanently. I'm fading and I can feel it to my core. I fight being in bed all day because, well, just because I feel the need to get up, get dressed and have some semblance of a life I am used to. But it's getting harder to do even that.

Thank you so much for your answer aussiedi. It really made me smile.
You are so kind!
I won't give up. Head up!

I like what AB101 has to say about coping mentally when it's difficult physically. I also turned to meditation and spiritual practice over the past
twenty some years maybe without knowing exactly why I raised two daughters as a single mom and worked various jobs. In my forties, I started developing eye problems and back problems. I could write a book about my various medication challenges. In brief, I was told I had CFS and Lyme when I was 58. This August I was diagnosed with WM, a rare cancer which effects your blood. Now I'm on treatment and my strength is returning I'm happy to say. During my periods of not being able to function, I would read New Age books, ie Wayne Dyer and various healers, talk to people on the phone from a CFS support groups I had attended, watch a lot of detective programs on TV, write in my journal, paint pictures when I was able. come onto DS, talk to my dog, pray, meditate, burn sage. This may not be for everyone I also go to bed early now and eat as healthy as possible Hope some of this may be of help to you Oh, I also go to talk therapy I feel we all have to find our way with this and I wish you many prayers and good wishes

whoops, a few typos there. various medical challenges, not medication though that's part of it, and I Send you my prayers

I"m glad you're gaining strength again. That's wonderful! I hope you continue that trend. Nice to hear someone else that meditation helps too. It's pretty good stuff.

LouiseS, thank you for your feed back, and you may be right. I have already requested to get tested for enterovirus, and coxsackle. Thanks for the information. My EBV IgG antibodies are over 750, they are supposed to be 20 or less - doctors can be useless. Mine does not think this is significant. My antibodies for active mono came back negative. Has anyone here been able to get on disibility with CHF? Thanks everyone.