Hi Spacepony
My apologies for putting this on public forum but do not know how to send you PM.
Sheehans Syndrome...happens to women in childbirth where the Pituitary Gland is affected..and causes problems with 8 different hormones...(hypopituitarism). There is lots of info on internet even though it is quite rare. Your doctor may never see a case in his whole career!
symptoms are almost identical to CFS!
It causes havoc with adrenals, growth hormone deficiency, thyroid, etc which makes people feel very ill and it affects their physical/ emotional
/mental state.
Specific tests are done to look for lack of specific hormones, I am having them done in a couple of weeks!
Treatment is to replace the hormones. So finding an Endocrinologist who specialises in pituitary disorders is necessary as most only know about thyroid or diabetes.
I hope this info is of help

Hi all, been crashing but will poke away at an answer to this one...
I had surgery at 9 yrs old for an intestinal issue, got double pneumonia and a full blood transfusion. After that I couldn't ever run again, I'd get winded really easily. I mention this because I will never know if I contracted this through the transfusion. The medical knowledge of if CFS can be caused by a transmitted virus is still new but I believe it's possible.If indeed that caused this I am not sorry I had the surgery because I would not have lived past 9 so any life after that is good even if it's different.
I caught mono from sharing a bathroom cup with my teen brother when I was 11.
I was molested by my brothers from ages 9-11. I still suffer ptsd when I must deal with my birth family. As I speak with my mother daily it essentially never goes away.
I worked in a wire coating factory starting in 1991, the air was full of smoke from the machines, pvc's, latex, etc. I can't even fathom what I breathed in.
About 2 yrs into that job I started to be quite ill. I developed herpangina, a virus that causes upwards of 100 canker sores in the mouth and throat. It was shear hell. It was 12 days until I could drink anything without crying and I never really recovered from it. I continued to work but went home to my 16 yr old daughter and went straight to bed while she took care of herself. When she and I moved from that apartment and we moved the furniture it turned out I was living with a wall full of black mold in the room I was trying to rest in....
6 months later my D.O. diagnosed me with Post Viral Fatigue Syndrome - one of the first names for CFS.
Its been up and down from my new normal of back then but when I lost my job to a buy out in 2008 and my mother in law happened to move home from Florida after my father in law died and needed care I took it on. I loved her dearly but she was wheelchair bound, had schizophrenia and was unintentionally combative. I cared for her 5 days a week for 8 hrs for 3 1/2 yrs (we had other caregivers with her otherwise), handled her money, docs, food, meds, VA pension, caregivers, etc. When she was dying I stayed with her 24/7 for several months. During the last year of her life I was fading fast and realized I'd never be able to hold a full time job again. I hoped to work part time but it was never to happen.
I sought out and received ssdi with the help of several of my docs and my pysch.
Thats my story in a nutshell. I can also add that I have been dx with past (or current, too expensive to find out) lyme disease (I grew up in CT) and also just got results that I have had mycoplasmic pneumonia (probably when I was 9), as I have antibodies to it in my system.

So, was it the blood transfusion?, the ptsd? the chemical inhalation? the herpangina? the mono? the mycoplasmic pneumonia? A combination? or it is just a so far undiscovered virus or autoimmune disease?.... I hope to find out while I'm still here on this plane.. it would be nice to know what put me/us in this condition.

ps, I recently had my dna done on 23andme.com I was careful to mark my CFS status in the questionnaire and they tell me eventually they may be able to match up folks with CFS and see if we have anything in common dna-wise. I do have the gene that causes a propensity for autoimmune disorders, of which I have 3 and which run rampant in my family.
ok, exhausted. hugs to all.

@ spacepony. we have so many experts in our forum who are better than most doctors out there which is wonderful! . i believe our syndrome gets us at our weakest moments and then takes over from there. adding a mixture of other illnesses for us to deal with on our journey thru this mystery called life :o)

Interesting how many peoples CFS got triggered or exacerbated by surgery and chemical exposures (chemo, flu shot).

I was perfectly healthy till my first knee surgery (had 4 surgeries in one year). I woke up from the surgery feeling like I had a different body. I haven't been the same since.

Got diagnosed with CFS and Fibromyalgia within months but was still able to work. Things didnt get to the disabling state till I was put on a medication that made me really ill. That was the final nail in the coffin. Functioning has been minimal since then.

Also, since getting CFS, my body has had a hard time processing stress. Since my life has quite a bit of on going chronic stress, my body has been in an almost constant fight-or-flight mode. Not the best for the healing process! Meditating and eating carefully help.

Good topic. Thank you.

Sunshinydays, I've never heard of that. I'm going to google it. Thanks!

Sometimes multiple stressors tip us over the edge. I think there are different illness that are diagnosed as CFS.

I agree LoriPletenik that we've become our own experts and advocates. Actually I would have liked to been a PA, but the illness got in the way.

All of my health problems started because of a birth control pill (Yaz). I was really healthy until I started taking it. It caused some horrible problems for me and weakened my immune system. I wish more women knew what it can do to the body.. I was young and naive, but I wish I could go back in time! I then got a severe case of mono. I also got a flu shot while sick with mono (which I now know is not recommended).

Bluebonnet08,
I had a flu shot while I was still weak from the mono. I really think the combo is what did me in.

I think I mentioned the flu shot in my post as well. I am afraid to ever get another flu shot after having gotten one and experiencing a terrible relapse. I would be very interested in knowing what it is about the flu shot that affects us badly.

That Yaz is bad stuff. My step niece nearly died of hundreds of tiny blood clots in her legs from that med and now has kidney disease and is on dialysis due to the treatment. I could easily believe it would stress a body quite a bit.

When I was diagnosed with poly cystic ovary syndrome a few years ago, I was put on a birth control pill called Diane to help treat it. A couple of years later I was in hospital with multiple blood clots in my lungs. They said the pill was the cause and took me off it.

the flu shot also did me in many years ago. i have not gotten one since. dreadful. :o(