Hello Jelly I was just told I have this I also have Common Variable Immunodeficany too. I was noticing that I would get up in the morning and I was so exhausted that I just felt like I could not move. I tried so hard to do chores in the house but had to keep taking breaks. I went to the Dr. a couple weeks ago and he said that this does come out with all I have. I am not in a flair now it did pass but for 2 weeks it was hell and I was so scared that I had something really wrong with me. I am glad to be here still do not know enough about it so hope others can share info with me.

Hi Jellybean!
I was a very healthy, outdoorsy, outgoing country girl until I came down with mononucleosis (Epstein-Barr virus) in the spring of 2009. I didn't know it began with mono until I was tested for it over a year and a half later.
When I first got sick, the doctor told me "It's just a bug. you'll be fine in a week or two." I was almost completely bedridden for over two months. My feet and legs felt like they weighed a ton. It took all the energy I could muster just to go from the bed to the bathroom. I got some better, but tried to work and relapsed. Now, I can "function", but not well enough to work or do any of the things I really love to do.
For a lot (but not all) of us, the ME/CFS began with an infection or a virus.

My illness started also with getting mono in 1985. I was an energetic happy kid until then. I was very sick with mono, taken out of school for six months, lost tons of weight, and couldn't keep hardly any food down for many many months. My digestion, energy, etc. was never the same after that and the symptoms progressively got worse as I got older. My mom too began to have similar issues starting around that same time, even though she never seemed to have mono. She was later diagnosed with chronic fatigue syndrome. I have never gotten an official diagnosis of chronic fatigue syndrome but it has been clear to me that's what I've had all these years, and I know that's when everything changed for me, after getting mono.

I had mono (ebv) as a child when my eldest brother got it and it spread through the house, we think through the bathroom cup. It was just after intestinal surgery so it took a while for me to bounce back. Even at that I never could run again without breathing issues. But life went on and it wasn't until I was 33 in 1993 and came down with what many call a "trigger virus" - mine was herpangina- that I truly became ill. The virus lasted only 14 days but I never got my energy back, not truly. Six months after the virus I went to an excellent D.O. who tested my thyroid, blood levels, etc. She did some research and determined I had Post Viral Fatigue Syndrome. I would have periods where I'd feel better. Months, even a time of a year or so. But always my energy would falter eventually. Docs treated me for anxiety, depression, suggested counseling. I was told I needed more exercise, better food, etc, etc. Finally in 2008 I was given thyroid meds. They helped a bit for my brain fog but physically I was still exhausted and in much pain. Things haven't changed much since then except to get worse to be honest. I swim 3 days a week in a warm pool for 30 min; I get physical therapy for myofascial pain. I have a walker to use when my balance gets very bad. I'm on disability, unable to work even part time. I'm still hopeful for periods of remission. I find stress does make it worse, and truly feel there is an adrenal component to this illness as my naturopath says I have all the earmarks of adrenal fatigue. She and I are trying to find a combination of herbals that help, but so far it's rest with some exercise every other day that does the best for me. That, and a proper diet; meaning not eating those foods for which I have an intolerance.
Re: hereditary - I have not seen a study on this, but anecdotally I can say yes, the tendency for this illness to take hold is passed along in dna. My aunt, myself and my niece have all been diagnosed with ME/CFIDS. Not surprisingly we all look very much alike, and have other illnesses in common - Hashimotos thyroiditis, myofascial pain, gastrointestinal issues, grain intolerances, insulin resistance. That's too many things to be a co-incidence. Moreover we live far apart, so it would not be locational in nature except perhaps for the winters being harder on those in the north with this illness (so it seems). Sorry for my brain wandering, it happens at 3 am when I'm up.

There was a bad flu going around, lots of people I knew had it and I did too. For me it never left. Along with flu symptoms (brain fog, exhaustion), I also had splitting headaches and I believe I lost some hair.

I went to my regular doc and she sent me to another in her practice who diagnosed me with Fibro based on the tender spots on my back. I don't have FM now but still have CFS 20 years later.

The symptoms on CFIDS.org are worth reading, they do refer to headaches of a new type and might mention hair loss.

I have read CFS is contagious in the initial stages and hereditary too. More on this can be found at Phoenix Rising ME website, there might be research.

I spent the first 3 years quite ill but gradually got better, I'm not well but able to do quite a bit. I couldn't hold down a regular job but before I got this already worked from home.

Pacing is the key. I wouldn't have been so sick initially if I hadn't pushed myself so hard to do my normal things like riding my bike 2 hours a day. I took Bruce Campbell's course and it helped more than anything else:
http://cfidsselfhelp.org/library/using-self-help-recover-cfids

Hi! My symptoms began after varricella infection and the flu. Extreme fatigue and low grade fever were my first symptoms. I had so many tests done but have never been officially diagnosed with CFS. I've had it for about 18 years now. I also had mono when I was 14, but I was feeling ok until I got varicella 8 years after mono, so maybe it was a trigger.

My journey did not start with infection. I went through a period of severe stress was put on meds which I think were not right for me and lost function over a 2-3 year period.

From reading it seems ME is classified as having viral origin but CFS onset can be due to infection or trauma. It seems to be one of the key distinctions between the two conditions.

Some CFS sufferers do not experience ongoing flu-like symptoms, but still meet the diagnostic criteria because we have the other symptoms (exhaustion, cognitive issues, pain, neurologic issues etc).

Have to remind the newbies though, there are a raft of treatable conditions which present with similar symptoms as CFS. Even if your doc diagnosed you please insist that screening tests be done for the potentially treatable conditions. Remember CFS is a diagnosis of exclusion.

This is very interesting. Most responders said their symptoms started after a virus. My symptoms didn't start with a virus (at least not that I know of).

At first I was functioning normally but I started to notice unusual "dips" in my energy. I'd be walking my dog and all of a sudden feel tired and my legs would burn like I was really working them (even though it was a normal walk that I'd done dozens of times before). Then I went through a period of stress at work (trying hard to move into a new department).

During this stressful time at work I took a trip to Arizona and it's like my nervous system went complete haywire. I experienced extreme "energy crashes" from doing simple things like walking around a mall along with panic attacks and weeks of disordered sleep. Four months later I'm doing better (panic attacks have ceased and I have much less insomnia) but my energy is still not even close to where I'd like it to be. The physical sensations also really bother me. My legs and arms often feel tired and heavy like they have lead in them.

My doctor thinks it's just "anxiety and depression" and his magic answer is for me to take an antidepressant. I think anxiety is a symptom of something deeper going on and not the root of it. I think something is happening with my nervous system (like it's faulty or extremely over-active).

Like LaneZ, my symptoms began after having mono. I was in high school and I was so weak that I could barely walk around with my books. In college the symptoms got worse to the point that it's a miracle that I actually finished. At the time, I still did not have a diagnosis. I had been given all the lines about how it was simply depression. I don't deny I was depressed, but depression was not the cause of my near inability to walk and function. I went to five doctors before I got a diagnosis. I remember I had just gotten married and someone called my mother-in-law to tell her that my husband only married me because I "was going to die" and he felt bad for me. I was finally diagnosed in 1999 with Neurally Mediated Hypotension, Postural Orthostatic Tachycardia, and Chronic Fatigue Syndrome. It was overwhelming, but at least I had an answer.

I know how much you are suffering. I am so sorry this is happening to you. You are doing the right thing by seeking support in this group. I will pray for you that you find empathic care from doctors and that you will have many friends to walk this journey with you. You are not alone.

I was diagnosed with CFS last year... but I have likely had it for a lot longer (I was diagnosed several years earlier with lymphopenia, a rare blood disorder, which shares many of the same symptoms).

Just as I was recovering from that, I got really sick again, which had me checking blood levels at my GP - but it wasn't until I saw another doctor, and he suggested my doctor referred me to a specialist to look into CFS that I had any inkling it could be more than the lymphopenia!

I'm having a bad go of it at the moment (I go through periods when I'm sick all the time, but I can deal with that, then the exhaustion sneaks up and I 'remember' it's more than just being sick).

I'm a former workaholic (someone who actually defined themselves by working.... now I can't even hold a part time job, let alone a full time one!) :/

Courtney550, you describe how I feel to a "t." I also feel that my nervous system has gone haywire. I described it to a friend the other night that there was something underlying inside, it's not overly noticeable but it's just there. I am dealing with chronic EBV, just found out last week that it's still active & has shown active for 4 yrs. now. I'm so glad to have found this forum and have some understanding people around...it's gets tiring (not what we need) trying to keep explaining yourself to everyone over and over and.....

After several years of traumatic experiences (house fire, homelessness, abuse, loss of work, breakdown in family ties and nearly losing my boyfriend while we worked abroad) I was the main breadwinner and self employed performer working five jobs and looking for a roof for my boyfriend after he recovered from surgery. My body just gave out.
I started to get viral infections like laryngitis over and over again with only a week in between. I carried on working to get us a flat and put food on the table.
The stress and pushing my body so hard meant that over a period of 8months I was diagnosed with Chronic Fatigue. I see my GP regularly and have had every blood test and urine test taken in this time.
I have my first appointment with an occupational therapist next week and I cannot wait. I have not been able to work for over a month, spent most of that time in bed and have had to give up my performing career.
If you have symptoms and are worried get a good doctor that believes in you and stop pushing yourself before its too late. Whether it be ME/CFS or Fibromyalgia don't wait for it to get worse! I have a friend who was bedridden for four years as a result!

Good luck with everything. The way I see it, I have started the journey to a healthier, more balanced life. I know my life is never going to be the same, but my warped lifestyle was no good and I life has forced me the opportunity to change for good. :)

I don't know which makes me more fatigued, sjogren's syndrome, and/or fibromyalgia, weight gain from Lyrica, and aging. I do need to nap during the day now, something I never did before. Since my older son died, and my youngest son had a very serious motorbike accident and almost died, my nervous system is all over the place. Life is very challenging I'll say. We do keep on keeping on, so thanks for such a nice place to write. Love, Abby

The point at which one would start going to the doctor is when you can't function anymore. Going to work is hard and you don't have a social life anymore. I haven't worked for over 10 years and I am STILL going from doctor to doctor trying to get a diagnosis. Regular doctors want to give me pain pills or anti-depressants and the CFS specialists are too expensive.

My journey starting from an injury from maladjustment from chiropractor. He whip lashed neck, knock jaw out of alignment and cause occipital neuralgia. I believe he messed up my system so bad and I pushed so hard as working, going part-time to college and single mom of 2 sons, led to me being totally disabled within 2 years of injury. My doctors kept telling me nothing was wrong. I was dx in 1994 after 3rd hospital stay. My world spiral out of control as so did I. I couldn't keep balance, in so much pain, sick on stomach... I think I had maybe three things unchecked of ME/CFS.

I don't see a doctor for it as I was treated so bad for so long, I gave up. I imagine I seen over 20 doctors that really didn't do much to help. I do see a neurologist every 3 months. I am housebound and receive Mobile Meals. I quit most of my meds except two. I take supplements and monitor how I feel. I have changed the way I eat, try to keep mobile without causing crash and enjoy life... laugh.

Hugs to all :)