I know EXACTLY how you feel!! I've been this way for 4 years and it just keeps getting worse!! It started with sleeping for 15-18 hours a day and feeling like i can hardly go to the toilet nevermind lead a normal life and it would last for a week out of 4. Then over time the time between each episode got shorter and shorter and now im ill for 7 days then hav 4 good days and then im ill again :(

At first my doc thought it could be hormonally linked but now after 4 years of being told this could be the case my gyno said its not and they will refer me else where which means im back to square one!!!!

If anyone felt like this too and knew what was wrong please tell me, i hate not knowing and having to give up my job and degree for this stupid illness!!

For me crashing is what this whole disease is about. That's the part my friends and family notice. They can't see so easily that every day is a battle. But they remember how hard it is for me when they discover me asleep on the floor in the kitchen after a failed attempt to get food. Everyone makes a big deal out of it when it happens - worried that I'm half dead and it won't take much for me to be fully dead. They are probably right, but after 10 years - this is living.
I'm lucky though that I know what most of my triggers are now and I know how to avoid them most of the time. It did help me to reach a full recovery once for a few years, and I'm sure it will help me get there again. But I haven't managed to figure out how to avoid smokers and people with bugs yet.

Yep I used too.
Usually found it was pre infection (Ear, synus, throat or chest)
Completely wiped out days. Bed only option. Crawl to toilet.
Didn't know much about CFS back then.
Now I better understand Neuro Endocrine Immune disease and the preconditios that have our Immune system, our Energy delivery system and our gut on the edge of a cliff. The only things sthat I could do to get through were hydration, safe foods and days of rest.

Aart from any pree conditional toxic load in our immune system (Virus's and organics like Metals and Petrochemicals) ,one of the reasons I suspect the 'randomness of rashes' is due to the interplay between specific Gastro Intestinal bacterium levels and its interpalay with Free Radical Oxygen bloood gas species in our extra cellular space ie Nitric Oxide levels.

I was reviewing my paper journal that I've kept tor years recently and discovered that I get gastrointestinal problems just before I have a crash. I'll have to go back over more journal entries to find out how much of a correlation this is.

It seems to fit what Al said, and the success some have had with probiotics in treating CFS/ME. There could be many possible explanations for the connection...microflora in the gut getting out of balance, pathogenic bacteria, parasites, etc.

Or it could just be where a flareup starts having its first effects if all our symptoms are being caused by a virus. Anyone who's had the flu knows what a virus can do to our gastrointestinal tract.

There are so many areas where research on our illness could give us answers...too bad there are so few who want to study ME/CFS. I guess there is just more money in cancer research.

Yes! If I stay up late I feel it the next day, like I've been through boot camp. Also applies if I mess up on my diet and eat a little junk food. My body won't let me get away with anything anymore. God Bless, nrthngl4ever

Yeah, I have them. Just living used to give me days like that. Now, I work as a cashier, 5-8 hour days. On my first day off I used to crash hard. I'd get up, end up in bed an hour later and sleep until 3-4. After seeing my chiropractor and massage therapist for over a year I finally got to this point. The last couple weeks have been better. But that might just be a boon and next week I might go back to my crash days. I don't overwork when I have these crash days. So if I only have one day off, it's a wasted day and nothing gets done. Read my posts about what I've been doing to combat this dreadful condition. Maybe you can use some of it. Good luck.

Yes. Many times I can figure out what preceded the crash -- maybe I did too much, had an arguement with someone, was in the sun too long, etc. -- but other times they make no sense at all.

My acupuncturist thinks that the change of seasons (especially humidity) often triggers them. She should know: She's been treating me for 8 years and has taken copious notes. But she scraches her head a lot, too, over my crashes.

Have bad brain fog today. Need to sign off...

You are not alone. My crash days seem to be getting worse. It is so frustrating. Why do some of us have to be ill with this. I had hoped part of my weakness was due to not being very active, but if I try even a little I crash for days. It certainly doesn't help with depression.
Do you find your muscles ache and sore throat. I seem to be having this everyday.

Jebias, it's funny that you mention change of seasons. Sometimes I notice more crash days at the start of spring, just when I think I should be feeling BETTER!

Mystie, my muscle always ache because I have pretty severe Fibromyalgia. For the past three days I've had an odd, nagging mild sore throat that perplexes me. I know this is common in CFS, but it's not a symptom I usually experience. I wonder if it's mild allergies due to everything being in bloom.

Here's something interesting I learned about springtime allergies.

When my area was mostly woods and pastures, I did not have too much trouble with allergies and sinus problems. But as the area changed into upscale residential on a massive scale, my allergies just got worse and worse.

I did some reading and found out that this happens to a lot of people. It's blamed on the ornamental flowering shrubs and trees that developers use in landscaping. Pollen production in trees and shrubs is dependent on available phosphorus, and professional landscapers and homeowners use superphosphate fertilizers in great quantities. This causes an abnormally high production of pollen.

Also, recent climate change has cause a steep rise in pollen counts all over the world. Medical issues related to allergies has followed this rise in temperatures. There is much more pollen in the atmosphere than there was twenty years ago, and it keeps rising.

When I was young, people with asthma used to relocate to Phoenix, AZ for relief. Then the area changed from desert flora to irrigated ornamental shrubs as the city grew, and now it's a terrible place for someone with allergies.

Sometimes you just can't win.

Richie, my neighbors are THE most compulsive ornamental gardeners. They have a huge yard filled with all types of plants. Plus, they have people come to work on literally it every other day with machinery! I'm not even exaggerating. I can't even enjoy the nice weather with the windows open (since I'm often not able to be out and about) due to the buzzing of machines and pollen assault.

You definitely are not alone! When reading through the replies, MaryMargaret's was my double....lol. Also the one on sleeping 12-18 hours/day and still not being able to walk a straight line.
The sad part is living in a very small town the docs don't understand this sudden loss of energy, and aren't willing to study up on it. I've taken reports and gently handed them reading material....but know their time is limited and it probably is never read, even though they thank me.

Getting extended family to understand how I can on rare days get out of the house for a few hours, and other days not make it out of bed is not easy, and I think the part of being snubbed by others is the biggest hurt of all. But then I have to remind myself that if someone would have told me they felt this way before I were ill, perhaps I would not have been too understanding either. Especially if they'd said they are sometimes so exhausted they have to remind themselves to breathe........