Hi, I have POTS and NMH as well as CFS. Really, the diagnosis of CFS came right along with the other two. At Johns Hopkins in Baltimore, they told me that many people with CFS actually have NMH and POTS and are unaware of it. So, whoever diagnosed you with POTS should be able to verify that you have CFS as well. The fatigue gets worse one to two days after overdoing it. Many of us, myself included, have muscle pain and fatigue daily. The "I feel like I'm going to collapse" thing is also something I understand personally. Listen, the CFS diagnosis is pretty much a given when you have POTS if you have it bad enough to experience crushing fatigue, and it sounds like you do. So, talk to the doc who diagnosed the POTS and tell him that you have this extreme fatigue as well and the diagnosis should be forthcoming. I'm glad you are here with us. There are several other with POTS as well in this group. Feel free to post anytime. We would love to receive you with warmth and generosity of spirit. Many blessings.

Most doctors don't know how to diagnose ME/CFS, the hope is that will change soon as the Institute of Medicine gets the word out to doctors with its new diagnostic guides.

They renamed the illness as SEID, Systemic Exercise Intolerance Disease. So if you get flu-like symptoms 24 to 48 hours after physical exertion, you probably have it. Try doing something involving exertion to see if it makes you ill. If it does, tell that to whatever doctors you see...hopefully they'll know enough to pick up on that.

But there's no telling what doctors will do, most of them are appallingly ignorant about our illness.

Hi Reds, I just wanted say welcome. I'm sorry you feel fatigued enough to consider cfs. I hope you get some answers xx

welcome reds ! :o)
what is POTS? and is SEID ...CFS?
does fibromyaligia go with that too? when i do a light workout . i have muscle pain / joint pain in the fibro trigger areas neck & shoulders. when i do too much , i get the flu like symptoms. i am just going to sit back and become a little princess from now on & do absolutely nothing :o) (just teasing)

Red, I'm sorry I can't help you with your question since I only have chronic fatigue, but the overwhelming exhaustion you describe that comes on for no reason certainly sounds like CFS.

Welcome to the group! You will find lots of good people here, support and information.

Some questions were asked and I have answers...

POTS is an acronym for Postural Orthostatic Tachycardia Syndrome...it means your heart speeds up when you switch from lying down to standing up. It's caused by neurological dysfunction.

ME, CFS, SEID, and NEIDS are all names given to the same illness. Most researchers use ME/CFS to describe it now...so far the new name of Systemic Exercise Intolerance Disease given to the illness by the IOM hasn't taken hold.

By the way, the IOM is now the National Academy of Medicine, which is a kind of promotion in the world of government bureaucracy. It's still the same very highly respected panel of medical experts that operates independently of the government bureaucracy, like the National Academy of Sciences.

thank you so much Richie D for explaining that to me. i have learned so much from you & many others in the short time i have been i this sight than most doctors. educate us to eternity ! :o)