I started noticing something was wrong soon after I left school, so at about 19 yrs old. At first it was just I was very sensitive to the cold, having to rug up really warm all the time, and I would feel disproportionate levels of fatigue in my muscles when doing ordinary things. (Though I should probably confess that for me back then, 'ordinary' things included an apprenticeship in truck mechanics and doing weightlifting training three nights a week.) Then I began to find myself too tired by the evening to go out anywhere.

Things grew worse over several years and I was forced one by one to give up my weightlifting, my apprenticeship and most of my community activities. My social life became very limited. For 5 years I managed to work part time as a live in boarding house mistress at a private school (there to be on call every night, only actually working four days a fortnight) before my health improved somewhat and I became a foster carer employed by a charity which provided the house and training etc, in a complex they called a village which was purpose built within a new suburb.

My condition remained fairly stable for about 7 years, though I still had to be careful about how much I did and rest whenever possible (as in while the kids were at school). The charity was very supportive and understanding but eventually could not maintain the village due to unrealistic restrictions the government department involved decided to impose. Rather than have the place close, the government took it over and I stayed for the sake of the children I'd been caring for but my only income was a sole parent pension and all of the support was gone.

My health began to deteriorate again and the whole thing was brought to a head about 7 years after the change with an extremely stressful time caused by departmental red tape. By the time that was finally settled (as much as it ever will be) I was reduced to applying for a disability pension and living in my caravan (I believe you call them trailers in the US). My health continued to deteriorate even after I was able to move into public housing until I was basically house bound, barely able to drag myself around enough to feed and clean myself.

I hit my lowest point last year (as chronicled in my journal) but have since improved slightly. This year is what you could call my 30th anniversary.

Hello Blue. You certainly have been through a lot and you too cimat. I became ill when I was 21 and I'm 68 now, so that is 47 years. I was able to work part-time for a few years afterwards, although it was extremely difficult. I should have gone on disability but I didn't. I did get married at 29 and had one child, a son but it was difficult for me to manage. I prayed and prayed and I believe that God gave me enough strength each day to do the most important things. My husband passed away 15 years ago when my son was 20 yrs old. My son moved out and got married and I found it very difficult looking after my 1/2 duplex alone. My energy has declined further in the last few years, probably age adding to everything else. My plan is to sell my house as soon as I can get some repairs completed. I want to move to a seniors residence and I am SO ready. I just can't mange this home and also large yard. It keeps me at home because there is always so much to be done. I don't want to spend the energy I do have looking after my home. It is too isolating and I want to be around people more. This is a VERY brief summery and I left out LOTS of details. I feel I could write a book sometimes. I might call it "Trying to do the Impossible" or something like that. We all need to pray that they will find a cure for this illness. They need to find out what causes it. I believe there are several kinds of CFS. It's a mistake trying to lump them all in together and it screws up the research. Hope this is helpful. Love and hugs from Cheryl xo

Hello, dear friend. I got ME/CFS when I was 16 after a bout with mono. I was quite ill through college. I got married, but I was very sick. I improved for a short time after having my second child. Then I got a flu shot and suddenly, I became ill again. It all came back--the shaking, the exhaustion, the pain, the chest pain, etc. That was in 2011. Since then I have been declining. I hope that I will be able to regain some function. Much love to you.

Hello friend!

I've had CFS for 10 years now. I had mono in my twenties. EPSTEIN BARR is the only blood work that comes back ridiculously high all the time. They tell me that this indicates that I had mono at some time, but not whether it is active right now.

The illness crept up on me. It just knocked me out one day at work. I thought I had the flu. I went home. I never went back. ER visits the first ten months were often. I got a diagnosis four months after disease onset and spent almost a full year in bed. I thought I was dying.

So did everyone else. Nobody knew about CFS. My doctors were of very little help. It was this place, DAILY STRENGTH, and the people on it that got me through. Thank God for you guys!

After the first year, and a ridiculous amount of testing, I was able to start to function again. Barely. That's it in a very small nutshell. The next three years, I was very sick almost all the time. My energy was GONE. I had small two to three day remissions where I could go downstairs or sit on the patio, but I paid for that dearly with extensive bedtime.

Coming to DS taught me how to MANAGE the illness, which is all we can do.

By year five I was walking, getting out for small outings, cooking and driving on occasion. At year ten, I am SO much better, in general. I'm out of bed for three weeks (let's say) then I "crash". Meaning.....I turn pasty white, blood pressure drops I feel fluish. This can last for three days to three weeks. I never know. It's always different in length and severity.
I am physically I'll and struggle to do anything at all other than lay in bed. I live a "push/crash" life. I am used to it.

So my message is positive. I give thanks to the good Lord that i have gotten to function much better as time has progressed. I think a lot of it has to do with my wonderful supportive family and friends and this support group that sees me through absolutely everything!

Never lose hope! God bless us, one and all!

I was a full time Krishna devotee, living in austere conditions and constantly under pressure and stress. I was sleep deprived due to rising at 3.30am and always feeling tired. Due to my sales ability, my assigned service became collecting funds for the movement (Iskcon) At the age of 28yrs, I contracted Glandular Fever and was bedridden for many weeks. I tested positive to both EBV and CMV. I felt unbelievably weak. Unfortunately, I did not rest long enough and surrendered to the demands of the temple president, who was not interested in hearing about my weakened state and expressed the need for more money.
I continued pushing my body every day, trying to please and surrender, believing I would advance spiritually. I did not use my intelligence and protect myself. I also had low self esteem so I was easily manipulated.
So I pushed to serve. To feel that I would be worthy and accepted by these great souls.Mmmm.
So when I crumbled and could barely walk, the temple president told me to shape up or ship out. Meaning...keep collecting money or go. Lovely hey lol! How very spiritual. Wow..what a great soul he was Lol! My story is just too long to continue here. I also suffered trauma . Another story.
Anyway I am now 63 yrs old and have felt ill since the age of 28 yrs. So 35 yrs of struggling every day with CFS. I have never regained my strength. I am frequently bedridden and when I'm up and out I'm still weak and shaky along with numerous other symptoms.I was only officially diagnosed by my GP and endocrinologist around 12 yrs ago. I could easily fill a book about all my experiences and treatments with this terrible disease. Thank God for DS and all the beautiful compassionate souls here. I am forever grateful for your love and support.

Hi Blue,
I self-diagnosed in early 2011 at age 56 and got the official diagnosis later that year after getting the standard panel of tests done to tell me there was nothing wrong with me (!@#*). There were, perhaps a half dozen triggers at that time that may have provoked things but what really brought me down was work stress. My condition has gone through some interesting transitions. In the beginning, I had overwhelming fatigue, sore throats and was generally getting sick all the time. Then my symptoms became more fibromyalgia-like with the addition of generalized myalgia. This was when I was at the height of my stress period at work. Interestingly, I became invincible when it came to getting sick and went for several years without getting so much as a cold, though all the while being extremely fatigued and in pain all the time. In July of last year my condition forced me to retire early. I was certain that once I did this I would make a miraculous recovery but alas this has not been the case. Oh, I feel better and almost never get headaches any more but the exertion intolerance and myalgia have not resolved. I basically feel like I want to crawl out of my skin some days and as always, my symptoms vary from day to day and week to week. It appears I’m in this for the long haul but I never give up hope that one day I’ll wake up a new man!

My story is somewhat different in that I was officially diagnosed in 2001 with CFS.
By that time, I was 58. I had lived a full life having finished college and marriage, two children, followed by divorce, and then working and raising my kids as a single mom. I was able
to take trips periodically and see many places. In my early 50's actually, I started having
symptoms. Vertigo was one. Big digestive problems, heartburn, malaise, plus on going
back problems which I'd had since my late twenties which included one surgery in my forties.
and then coming down with pneumonia several times and infections of various sorts. I would
go from one alternative health person to the next, sometimes gaining needed relief.
I kept on working. I applied for disability and that took several years. By the time I
got it, I was one year from retirement. Then, I was diagnosed with Lyme disease.
What next? Then, I was diagnosed with some CVID. I am able to take care of myself,
drive a car, go places and shop. I am most grateful for that. Sometimes, I need people
to come in and clean.
However, I have good days and bad days. Periods of time when I can barely
function due to exhaustion/fatigue. That was the case this past winter with lots of dampness and rain. I also worked with a very good naturopath for about eight years who kept
me going. He diagnosed the Lyme and treated me for that and CFS.
So, Bluebonnet, I don't know if that's of any help necessarily. I was glad to read that you
were able to have a child and that you have someone to help you. It sounds like you have
regained some of your energy in bits and pieces. It is hard. There's no doubt about that. It's
only natural to want the life we had. Yet, I say, it is fine to hope for the best for ourselves, IMO,
and I don't feel it's foolish at all . I am glad I read your post and just want to send you some
very good vibrations and hugs for today.

Sick for 27 years. Started with mono. Mono doesn't cause CFS. CFS causes mono to stick around.

Now I show zero titers for mono. Zero antibodies. Doctors try to convince me that I've never been exposed to mono, even though more than 90 percent of the population tests as having been exposed.

They don't get that my immune system isn't normal. I guess they don't believe me when I tell them I was diagnosed with "acute infectious mono" before my troubles started in 1990. Too bad I didn't take a copy of my records from back then.

I am SO OVER DOCTORS!!! I need a support group for people who are doctor-phobic.

I developed CFS after mascectomy with a saline filled, silicon-lined implant. Fourteen years later, I had the implant removed for pain reasons, and 6 months later, the fatigue was much less. Now, 10
years later, with the use of Garlic,yogurt with bididobacterium, Borage, and Elavil, my CF days are much less. Hope this helps. Love to all. Courage!!

Hello everyone,

I had a climbing accident when I was thirteen and I had surgery with a few complications, I was in the ECU for a week. A year after that I began having frequent throat and nose infections and then came brain fog and memory problems but it was not that severe yet. After I finished high school at 17 I had to enlist for the obligatory military service, it was then due to the bad living conditions that my problems begun to be really bad. Since then I did 3 more operations to fix breathing problems and remove tonsils unaware of CFS and blaming sleep apnea for the symptoms. Long story short I'm 25 now then I'm sick for 12 years so far. I found that B12 injections does wonders for me, for whatever reason its always low, I wish I had found it earlier it would be a life changer in high school.
As for intimate relationships I decided to avoid them until I can control my condition better.

Best of luck in your journey :)

To be honest, I was born tired. My mom carried me longer then she should have. I joke that I was too tired to come out. I was born with a hole in my heart and I was always tired. When I got a bit older, I used to get sick if I didn't get enough rest. It was manageable up until I had my 2nd child then it got really bad. I was officially diagnosed in 2011 so I was about 32.