That's an interesting question. There were lots of factors for me: a very stressful 4 year relationship, taking lots of vitamins, homeopathy and herbs, being vegetarian for 18 years which did not suit me at all, living in moldy flats, running 2 businesses...it was a gradual spiral into it with no one factor. I think I would not now be bedridden if I hadn't been pushed repeatedly by family and medical people. I had issues with my energy for at least 10 years before I got CFS and I had episodes of fatigue and exhaustion in the years leading up including tons of viruses. I couldn't say it was caused by X really.

Welcome Lori. Good topic.
I was a tired child, something was wrong. I struggled along and in my early 30's I had several episodes of the flu back to back and never recovered. I remember seeing a Newsweek magazine that featured the newly named "Yuppie Flu" and thinking I hope I don't get that because I am so tired already. I did not realize I already had it.
A few years later a doctor did blood tests and found that I had "astronomically high titers" for Epstein Barr, cytomegalovirus and Herpes virus. I held steady for about 25 years, then started going downhill in the past two years. Now not as much fatigue/pain, but bad brain and lots of odd other symptoms. Still going downhill.

Welcome Lori,
Like Lupin, I don't have a straight up answer to your
question either. I have had some major 'stressors' as they call
them during my life. One was divorce, another was being a single
parent of two children for many years. Another was work and
back problems. During that time, I had some major flues and
surgeries. So I can't pin it down to 'one thing' During all of that,
I was able to function. I was always reading up on good health
and exercising. During my 50's I did start to have fatigue
symptoms. When I was diagnosed, I was also told I had
Lyme disease. So I've been treated for both Lyme and
Chronic Fatigue for about 15 years. It is often difficult to know
which is which because they both effect the immune system.
When you say you had many episodes of the Epstein
Barr virus, does that mean herpes? It may seem like an
odd question, but I've never known if that has other
symptoms.

Hi, Lori. Welcome. I was a tired child like Linda mentioned. I got mono at 16 and never really recovered my energy. I was diagnosed with NMH (Neurally Mediated Hypotension) and POTS ( Postural Orthostatic Tachycardia) as well as CFS, but it's all really the same ball of crap. I had about 6 years where I was in a remission of sorts and then I got a flu shot and fell back into it again. So, that's my story. Thanks for asking. It's good to put a narrative to it sometimes. Much love.

I fell ill with glandular fever at the age of 23. It was not diagnosed in the beginning and I did not rest properly. Instead of getting high temperature, my temperature dropped to 35 degrees. This was actually the first thing which made me think ... some inflammations followed and 3 weeks later I realised my first symptom of M.E. 2 more weeks and I could not even walk 5 minutes without crashing ...

Heres my story - early childhood trauma (suppressed for many years - only just facing it) Domestically abusive relationship for 20 plus years - child on aspergers spectrum, child who self harmed, quit school and went totally off the rails, a job that requires me to be verbally abused by people on a daily basis and a non supportive management structure, a cheating husband and subsequent divorce, a bitter divorce battle, a daughter who had break down at uni and a son who got into all sorts of things shall we say:( , various failed relationships, always feeling unwell aches pains acute tiredness and always pushing myself to do more and not be the failure I have been told most of my life. Contracted a virus and after 7 different anti biotics and a spell in hospital it still wouldn't clear. time off work unkindness and job loss threats on return continued the cycle of the last 5 years until finally I self diagnosed and went to my doctor who send me to a specialist whom confirmed my fears. So here I am am. I think CFS is a nervous breakdown of the body rather than the mind, my body clearly needs a break but life doesn't allow for one .
Not sure if this is of any help but it is what it is .

My first symptoms appeared when I was 18. Nothing dramatic, just a sensitivity to cold, constantly but mildly swollen glands in my neck, a vaguely sort throat and being more tired than what I was doing would explain. It was about 5 years later that I left my job (apprentice mechanic) because of it, still not understanding what was happening. After many doctor's visits and tests, I was told I'd had glandular fever (mono, as many on this site call it) at some stage in the past and now had post viral fatigue syndrome.

After about 3 more years of constant low grade sore throats, I demanded a referral to an ENT (ear, nose and throat specialist) and he took my tonsils out - or at least the mass of puss that was all that was left of them.

Lots of other things followed, but that's where I believe it all started.

wow , thank you all. i have been in the health & fitness field since i was 18 & want to help anyone & everyone who has our syndrome
and make it a "real illness" to prove to the outside world who most have no idea what we go thru day in & day out. your responses are greatly appreciated. i am 48 and planning on trying to go on part time disability . i work at part time @ metlife stadium in the owner of the jets elevator & dont ever want to leave that job . because it is very relaxing & enjoyable except when either the giants or jets dont win. today will be tough to choose a side. hope i get more responses , till then keep the faith & love from your supportive friends & family :o)

Welcome Lori,
Love your job, because I am a diehard Giants fan and my adult son is a Jets fan. Lol. Just watched Jets beat my Giants yesterday Grrrrrrrr!

As for me I can't pin it all down to one cause either. I had childhood trauma, that wasn't dealt with until my 30s. I raised my son as a single parent in NYC. Left my husband when my son was two due to his abuse to our boy. He was an alcoholic with cruel abusive behavior. I worked two jobs sometimes as I raised my son until I got registered in finance for Commodities and Stocks, but I preferred The Commodity Markets and traded/ Broker. I got asthma at 30 and was on and off prednisone a great deal, which I believe weakened my immune system along with the stress if working among disrespectful men on my daily business. When I became disinterested in evenings out to fine dinning with friends due to feeling tired I knew something wasn't right, because I loved being out in Manhattan at the best Resturants, and theatres.
All through my 30s I struggled and finally went to the gamut of doctors to check what the heck was wrong back in the late 80s early 90s. I finally found an Immunologist that found all the same factors in my blood as yours. He took more blood to rule out all other possible diseases until he diagnosed me in 1992 with CFS. I HAD TO STOP WORKING IN 1994 when I became bedridden for a year and a half. My son was in her 20s and already on his own. I have been on disability since and it continues.
I tried PT jobs seven times but couldn't last or be depended on. I also went to college for many years on and off hoping to get my AA degree and try working as a teacher's substitute. I am about 12 credits short of the degree but just too fatigued to complete. I loved school though it was an amazing experience.
Perhaps the stress, prednisone, childhood trauma, and who knows what else are the causes.

I haven't been here too much because I was diagnosed with breast cancer in March, had surgery, and 33 radiation treatments that ended in July and that has set me back quite a bit.

I wish you well and happy you have joined DS. This is my saving Grace often bc at least everyone here understands and has compassion.
LOVE & LIGHT

Epstein-Barr, almost off the scale. I was healthy, athletic... Went hiking, canoeing, etc. I had mono when I was in my early 20s - just an average case. I was back to normal within a week. Then I caught it again in my mid 40s. I never really recovered.

I got over-stressed from being the primary caregiver of an elderly parent for five years while working full time. It started with aches and pains, then about five years later, extreme fatigue set in.

I went to many doctors who ran a lot of tests on me. I was misdiagnosed as having an autoimmune disease (Sjogrens) although my symptoms did not really fit that disease. Recently, I was diagnosed with fibromyalgia. So that was what was causing the cfs.

Hi Lori, and welcome. I know when my symptoms first appeared during chemotherapy. I was diagnosed with breast cancer at age 55 and underwent surgery, chemotherapy and radiation. After the first infusion, the glands in my neck swelled significantly. It felt as though I was wearing a too tight neck scarf. I also became markedly short of breath, weak and suffered from chemo brain and neuropathy. These were all thought to be common reactions to chemotherapy. My once small and tidy handwriting became large and sloppy. The glands reacted after every infusion and never really went away. Six weeks of physical therapy resulted in minimal improvement of my shortness of breath. By then my radiation had been completed and I felt somewhat competent, though I was able to do no housework and worked limited hours at my job. I thought I would gradually improve as the weeks went by, but I did not. Instead I developed more alarming symptoms: my face, neck, and arms swelled. I was very dizzy. I developed visual disturbances and pounding in my head. The shortness of breath and fatigue worsened. All symptoms were exacerbated by bending over, turning suddenly, or even minor exertion. After months of numerous scans, tests, specialty consults, and hospitalizations, it was finally discovered that I had developed a huge blood clot around the port through which the chemotherapy had been administered. The clot continued to grow after I was placed on anticoagulants and the port was removed. The clot did not grow any further after I was placed on Xarelto, but it will never go away. It completely blocks the superior vena cava and prevents blood flow from my upper body to my heart. I eventually developed collateral veins which relieved some of my symptoms. However I continue to have symptoms most compatible with CFS extreme fatigue, exercise intolerance, heat intolerance, shortness of breath, dizziness, weakness, pounding in my head, muscle cramps, and progressive cognitive impairment to the point that I can no longer hold a job. Although nearly everything else has been ruled out, I have not been officially diagnosed with CFS. Still, I am convinced that the assault to my immune and central nervous systems from chemotherapy resulted in the same damage as that which is possibly caused by viral infections and extreme stress. I plan to pursue official diagnosis as soon as I feel up to more doctor visits. I hope that a definitive diagnosis will facilitate my disability application. Thank you for this post, Lori. I have long wondered if anyone else developed symptoms following chemotherapy.

Hi Eweneek
I just to tell you that you are right about people who have chemo very often develop CFS and there is a lot of information on the subject on the internet! Scholar articles etc!
So if you are feeling up to it...do some research and present to your doctor.
It is surprising how little doctors know about this....
Cancer Related Chronic Fatigue because they may never see another patient with this type of problem so their experience/knowledge is limited.
The cancer causes absolute havoc with the human body then you are given chemo aswell.
It is really difficult when you are so weak and ill to actually get to the doctor and then try and talk about all this stuff.
So I now write everything down in the form of a letter and let the doctor read it. Then I have another written list of questions.
It works really well for me as I have ususally lost the plot by the time I start talking!!
Anyway I will stop now as I am going to post on here how I think I ended up with CFS!!

Hi Lori
Welcome!
I will try and keep this short!
Feb 2002 - thrown from horse and suffered head and neck injury, lost 3 teeth in the impact!
April 2002 - bitten by insect on trip to USA(I'm from UK) Severe Fever
Never recovered but was diagnosed with Chronic Anxiety because my adrenaline ran non stop.
Diagnosed in 2006 with CFS after many years of trying to get help.
March 2010 - had Mitochondrial Function test only available privately
showed very poor motichondrial function and which affects every muscle in the body including heart. I am almost bedridden but push myself everyday!
A few months ago I came across an article about Hypopituiatarism caused by head trauma!
I then searched on the internet for an Endocrinologist who specialised in pituitary gland disorders in north west England...where I live!
Got all my written stuff together an asked GP if I could see this Endo?1
My GP did say that she had only ever seen another patient in 27years who had a problem with their pituitary gland(radiotherapy had affected this patient), but had never heard of a head injury causing problems!!

I have recently been tested for EBV, CMV, HHV6, and polymyalgia rhuematica and all came back clear!!

Well I got to see this Endocrinologist quite quickly....on the NHS...10miles away! I have been paying for private treatment for years as NHS just give you the label CFS and you're left to deal with it on your own!
He said that it was well documented worldwide that head trauma can cause major problems with the pituitary gland!

He knew exactly what he was going to do and I am at the moment back and forward to the hospital having various tests done looking for lack of human growth hormone and cortisol...it has taken 13years to get to this point and most of it I have had to find out for myself.

The Mitochondrial Dysfunction is probably related to the insect bite or exposure to toxins. The way our bodys' produce energy is a very complicated process, mine unfortunately does not work properly.

It is alo well documented worldwide that Mitochondrial Dysfunction has been found in many many patients who have CFS.

As with most other people with this horrendous condition I have lost everything including all my family who think this illness is "Fake"...but that is a whole other story in itself!!

Anyway, I hope this helps with anyone out there who may have had a similar experience.

Hugs and Peace to you all

Hi and welcome. Thank you for starting a very interesting discussion.

I had an emergency c section after a healthy pregnancy. My first surgery. I feel my body was just shocked by the insult. I don't think I slept a night through for four years, during which I was a hyper vigalant parent (I've got ptsd). When my kid was about six, I had difficulty standing to do things like dishes. Finally began lying down during the day. Then bed ridden for over a year. Just collapsed. I think I just kept whipping myself to keep going until I couldn't :(

I'm maybe at sixty percent. Small days enjoying everything that comes my way. Able to sit up and knit :)