I have been officially diagnosed since August 2004. The major fatigue symptoms which affected my day-today activity levels occurred the spring of 2003 after 2 bouts of cold/sore throat type virus. It had been an extremely busy school year as a 6th grade teacher. I was the major organizer of a outdoor camp for the 3 sixth grade classes at our school. Now that I look back at my health history there are other strange health issues that doctors had difficulty identifying the cause. I took early retirement from teaching in 2005. I have only been able to work part time on and off over the years since my retirement from teaching.

Mono was the initial kick off for me.

I can say I know the virus that triggered my first official crash...but whether other things contributed??
My virus was something called "Herpangina".
It's a coxsackie virus, causing something like cancer sores on the soft parts of the mouth and down into the throat. Most people get under 10 of them. My doctors (needed two to diagnose) counted at least 30. For a while I wished I would just die or be put under until I healed. It took 12 days to be over the whole thing, and it changed everything.

http://en.wikipedia.org/wiki/Herpangina

However, I had stomach surgery at at 9 and needed 8 units of blood. I sometimes wonder about that, because after that I never really was the same kid....

In early April I was running 5 miles and was on mile 4 with an uphill incline when a tendon in my foot snapped. I was on crutches for a little while but from that day on I started getting very tired and taking naps all the time. It has just gotten worse gradually with it really getting bad around the holidays. Most of the summer I could still drive and do short runs with my son but as winter came along the brain fog was too bad to drive most days.

Because I newly have this I have spent a lot of money on doctors like a sleep specialist (to rule out apnea) and blood work (particularly thyroid). I've really just run out of money. I had so much fatigue that running my home business was really tough. I gave it up and now have no income at all and rely on my husband. There are still things I could do online to make money but I have no energy to even think it all through.

Someday when I get more energy I'll go back to the doctor and get more tests.

Mine cfs also started with a bad case of mono. I was a teacher. Our school had a few cases of mono in the spring of '09. I came down with it and was bedridden for two months. I tried to teach another year, but I had to resign. Apparently. I had a stroke while I was down with the EBV, too.

My mom got sick with cancer! I helped her get through that, while working full time and taking care of my dad. I got weaker, sicker...while watching her go through this cancer. I wore myself to a frazzle! After she passed, one day I got very sore shoulders in the morning and felt very dizzy. I went to work. By the afternoon, I was so weak and sick, I left work and told them I must be getting the flu.

I never went back. I went to bed that day, and never was the same.

In my case, although I have a past history of mono, I would have to say that the stress of my mother's death and my trying to push forward, dragged me right smack into CFS. Stress. It's a killer!

I was finally diagnosed with CFS just last September, 2014, but I've been suffering with fatigue and an inability to fully function since 1989 when I had to leave my professional career as a computer systems analyst as I couldn't cope with the stress. I've worked only part-time or temporary jobs since then though I continued to get sicker. Finally in 2013 I had to stop working at all. In my last job I would work 3 hours on Monday morning helping a senior (cleaning, laundry, driving her shopping), then I'd be so crashed I couldn't drive safely home ~ I'd have to sleep in my car for several hours before I could drive 9 miles home. Then I'd be sick for 3 days before I went work for her again on Fridays ~ and be sick all weekend until Monday morning came. I did that for 3 years.

At least I finally have an MD who has made a CFS diagnosis and is trying to treat me using Dr. Jacob Teitelbaum's protocols. My doctor also says I have candida yeast in my intestines that is also making me sick. The first time this doctor met me he said I'd been working on getting this sick for a lifetime ~ I've had significant stress in my life pretty much non-stop since the age of 10 when I started having major depression. I also had a bad case of mononucleosis when I was 17.

Recently (last June, 2014) I also had breast cancer and a double mastectomy. The crushing fatigue I felt after the surgery never let up and finally compelled me to seek help for the fatigue problem. Up until then I had decades of doctors prescribing antidepressants for me since I had a history of depression. However the antidepressants did nothing to improve how I felt particularly being crashed and unable to function after having active days.

For everyone on this discussion who can no longer work ~ have you applied for Social Security Disability Insurance? We're unable to work due to illness ~ we should receive SSDI payments to help support ourselves. I've been denied but now have an appeal pending. I'm lucky to be able to support myself with early withdrawals from my retirement savings (I'm 59) as I live alone and have no family. I hope that you have doctors who will state that you're unable to work due to illness ~

I had mono when I was 17. After that it seemed that I was less resilient than I'd been previously. IF I exercised (like cross country skiing) I'd often get sick a day or two later. I lived my life finished college, went to graduate school and got my Masters in Counseling Psych. I'd get sick frequently and my room-mate said she'd never known anyone who got sick as often as I did and stayed sick for along time. Kept pushing - tired a lot, but got my Psych. License and was in private practice for 7 years, limping along. I'd be sick often and have to rest in between clients. in 1986 my MD told me I had CFS. On Jan. 7, 1992 I got what I thought was a flu and never got better. Had to close my practice and go on disability. There's more to the story, but I think I just answered your question..... I think it is nearly identical to many other people's stories....

I was awarded SSDI in Nov 2103, with an official disabled date of Nov 2010.
I used a lawyer from step one. It cost me $6500 of my award but I would do it again in a minute. A good SSDI lawyer knows what they need and helps get it from our doctors. I think, personally, it's not worth waiting to see if you get refused..because 99% of non terminals are and then it will cost the same and you may have made errors you can't come back from.
My first go was a refusal, they almost all are.
We held back some info because when they refuse they won't look at it again unless there is something new (see, that is what a lawyer is good for). I had documents and forms from:
PCP
physiatrist (pain doc)
Psych
Neuro
Endo
Ortho
Naturopath
All that confirmed each other's conclusions but not exactly so it didnt look like they had a form to copy off of.
Also, test results from 5 yrs of testing (I keep records and results on paper of every thing that happens to me medically)
And the thing that I am told by SSA put me over the edge,
My pain journal. I sent them over 100 pages with some parts highlighted of my journey with this illness. How it affected the person I used to be, the pain, emotionally, etc....
Applied in January, first refusal in June, awarded in Nov. Not too bad actually.
Something to remember if you do this - the money you are awarded is income for the year(s) it is awarded for. For most folks it won't matter much but just to be aware.

I had a terrible breakup that was highly stressful, then a flu went around to all my friends. When I caught that flu I just never recovered.

In hindsight I had short bouts with CFS but recovered a couple times. During periods of high stress I had it.

Nina1959: Thanks so much for all the information you shared about the process you went through to successfully get SSDI payments ~ I glad that worked out for you! I have been denied once and also felt that it was worth it to get a lawyer at this level of appeal. You had a lot more doctors than I had ~ plus that was a great idea for you to submit your pain journal that documented the difficult health problems that you're struggling with.

My big problem is that I don't have a lot of medical records documenting my declining health especially this past 12 years because I didn't have health insurance so I couldn't afford to go to doctors much. I was denied health insurance when I moved to Oregon in 2003 due to pre-existing conditions and I couldn't afford $600/month for the high risk pool health insurance coverage. So I managed my illnesses going to the local subsidized clinics and prayed that I didn't get a major illness that would require hospital expenses that would bankrupt me.

I'm so incredibly thankful for Obamacare as I finally got health insurance in 2014 ~ just in time as I was diagnosed with breast cancer and needed surgery in June, 2014. I now also have a primary care doctor (not at the subsidized clinic) who is attempting to treat my CFS. The doctors at the clinic were just trying different anti-depressants even though I was telling them that my fatigue was physical ~ I know what fatigue from depression feels like and it's different from this.

I'm glad to hear that it's didn't take you years to get SSDI. I've been told by the lawyer's office that if I'm denied now, it will be about 2 years to wait before I'll get a hearing before an administrative judge. I need to remain hopeful that I'll be granted SSDI on this appeal level as the CFS diagnosis is new information for them ~ I didn't have that diagnosis yet when I originally applied last June.

I'm not going to make it financially to age 62, which is the normal early retirement social security age (I'm 59 now) so I really need to get these disability payments. Though I understand that they don't take into account the applicant's financial condition when deciding whether to grant an SSDI claim ~ it's doesn't matter if the person is going to be homeless, it only matters that the medical records prove that the person in unable ~ and will remain unable ~ to work for at least the next 12 months.

When my original denial letter came it said that with the proper medications, I could be working full-time again in less than 12 months ~ I actually laughed when I read that! I haven't been able to work full-time since 1989. I sure wish some magic drug could make me that functional again but unfortunately I don't see that happening ~

I developed CFS after breast cancer surgery and chemo in 1992. When I had the saline-filled,silicon lined breast implant taken out in 2006, my life improved greatly. The "crashing fatigue" stopped and the fatigue was much less. Hope this helps someone. Isabelle1954

I have had cfs for 33yrs.As crazy as that sounds it is the truth.I believe many things contributed to my ill health.I overworked my body and was running on nervous energy for a long time.I would say my difficult childhood caused the nervous energy, fear ,and feelings of low self worth and wanting to feel loved.Then I became extremely ill with glandular fever and was bedridden for 6 wks.Unfortunately I didn't allow myself the necessary time to recover.I felt weak every day.My husband, my young son and I decided to move into the Hare Krishna temple and farming community across from where we were living.I had already besn associated with this movement since 1976 ,however on a more casual basis mainly attending festivals ,Sunday feasts, and the occasional evening programme.The move was a BIG MISTAKE! ! I attended early morning programmes rising at 3.45 am for the 4.30 am programmes and followed all other requirements.Wearing saris and covering my head felt stressful every day.I lived in austere conditions on the farm in an old caravan.I worked hard collecting large sums of money while the temple president travelled the world .As I was previously experienced in sales this was my given temple service.I worked my butt off trying to prove myself worthy and to be accepted by the devotees. I gradually became weaker and weaker and my body developed tremors.I approached ths temple president explaining that I was becoming seriously ill.His words were" Shape up or ship out".Nice hey !! Sooo spiritual LOL !! So we left with no money and no where to go I felt used and abused and broken hearted..Fortunately some people rescued us.My story is too long.I need to write a book.By the way , the reason I became involved in the Krishna movement was because my husband was a strict devotee when I met him.I was a Christian.
Anyway to cut a long story short and back to the original point.The attack of viruses (EBV & CMV) contributed and a lot of ongoing stress in my life.Trying to take care of my father until he died ( another painful chapter) and long term stress with my daughter who was raped at 15yrs which resulted in her near death and a drug addiction.She was an A student and state champion in ballroom dancing previous to this.
I feel like my body is permanently damaged but I pray that somehow I will recover. I try to count my blessings.Your valuable association helps me.I am very grateful to you all.Love and healing.xo

Sorry.I guess I revealed too much personal stuff and it didn't go down too well.

Di - that is why we are here, right? If we are judging each other on past experiences and our own feelings about them...we don't belong here.
You had quite the experience! Believe me when I say if I posted some of what I did when I was younger it would make you blush and offend nearly everyone!
And hey... I'm a witch, remember? Died in the wool, long black hair, live 45 min from Salem witch. In fact I'm an ordained priestess. A witch with papers!
You did what you did for love....haven't we all done something we'd change for love?