Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
This is my first post on the discussion board. I've been housebound for about seven months now. Done a lot of research, kept my doctors appointments and listened to your stories. You folks are dear friends to me. My question is this. I know that people tell me that I will "get better", maybe, and only to some extent, but there is no cure. Ok, I've got that. I've also heard that some symptoms subside after a while. What I think I need to know is, have you all had some time where almost everything goes away, even for a short while and you are able to claim back some of what used to be your life. It's time that I asked that question, because I truely have no idea what's ahead of me. Anything you have to contribute to this will be helpful to me. Thanks so much. Sincerely, Darla
-
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
-
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I think each person is unique in how we get sick and in how we may be able to get well. That would mean getting rid or lessening of some symptoms as well.
I don`t think theres a one shoe fits all answer here, is what I`am saying. Some of my symptoms have subsided or lessened but I believe that was because of trial and error with detoxing my body. That is not to say that same detox would work on you.I believe we are all sick for different reasons.
Rosanne
the second day, same thing...no pain...not an ounce of fatigue...my hopes started to raise...IT WAS OVER !!!
by the third day I was ruff houseing with ruff nephews...I was climbing stairs 2 at a time...I ran AFTER our dog...my husband had TEARS in his eyes...never had he seen me.."WELL"
by the 4th day I was makeing some hikeing plans with a friend...I live right next to the badlands and they are beautiful to hike thru...
i woke up on the 7th day...the terrible theif hnamed FM/CFS had broke loose from his chains...and attacked me sometime while i was asleep...I was down for almost a month hardly able to get self out of bed...
but...
I had Hope...hope that whatever was attacking my body can go away...I had heard of remission...and thought it odd that I was in remission from Both at the same time...perhaps FM and CFS truely are one DIS-EASE...no idea about that...but the HOPE is very much alive and well within me...is the one thing that keeps me going everyday !
I have had debilitating symptoms for almost three years. I am slowly...every so slowly recovering. I have no idea how much functionality I will secure...but every little bit...provides hope....I'm learning to take whatever I am given and find ways to enjoy life whether I have ten minutes of symptom free activity or 10 hours......
Andrew
I don't believe WE are all different. But the amount of variables involved? Sure makes it look that way sometimes! We talk so much about what you are or aren't putting in your body as treatment - and very little about what is stuck in there already, entering from your environment, or growing in you as all the millions of organisms you carry around with you duke it our for supremacy in their little world that is your body.
I can tell you in retrospect what happened when I experienced a remission after the fist couple of years. I moved locally, then I across country in rapid succession. That fed my suspicion there was something environmental involved. But I had no answers. They called it 'endemic depression' and handed me more pills. Propped up by antidepressants, I resumed a successful career and a very active lifestyle. That lasted for 5 years, and it was amazing. What a gift!
Then my workplace became contaminated with mold. Only this time I went down much, much harder. And I got confirmation of the genotype connected to the inability to shed mycotoxins.
A whole lot of things became clear to me then. When I was sick before? I was working full time managing hundreds and hundreds of water-damaged buildings. Then I got too sick to continue, though my husband continued so I was still in it. But when I left? Like it faded away. Not cured, by manageable.
There is research literature supporting the idea that succeeding exposures DO become worse. That fits my experience of it exactly. This time, I either can't recover, or just haven't put the right keys together yet. Shoemaker's data suggests a 6-month window of opportunity for recovery if you can get out and get treated. But I was in there this time for 10 months plus (thanks to the cover-up), and had been exposed before to the point of disabling illness. So my chances may not be so hot this time. I'm not happy about that, but I understand it now and so spend my time on advocacy and practical living as much as looking for a cure.
Some people recover spontaneously within a couple of years without ever even knowing the cause. Of those, a fair percentage fall again and do not recover. Others never catch a break, and of those, some go on to other diagnoses.
I'd say, go after the causes for you. You know the list - mold (whether environmental or from breast implants), c. albicans, pfisteria, Lyme, HHV, enterovirii, HIV, RA, Lupus, West Nile, Ehlers-Danlos, hemochromatosis, other toxins such as mercury, etc. There's a regular encyclopedia of stuff to test for and question. So start at the top, which would be mold - since 25% of the population carries that vulnerability. Dig around the family medical history, if you can. Cruise the Lyme groups and get the right tests. Then work your way on down the list.
We're clearly a human dumping ground here. Find out what all got you dumped here, and you'll know more about your chances for crawling out. No guarantees. But a logical and practical personal sleuthing mission is a whole lot more likely to get you where you want to go than hanging out wishing it would happen! It's not all la-ti-dah-nobody-knows. There's hard science under it already and more on the way. This thing is NOT unknowable. But it won't drop itself in your lap, either.
If you're going to fight for yourself, asking the hard questions is EXACTLY the right place to start.
And please - be wary of those who fluff it off as post-viral fatigue. That's a non-answer. Virii have names, and the illness from mold exposure or Lyme? Can't usually tell it from the flu. Looks and feels the same. In fact, MOST of the suspect illnesses I named look and feel like 'flu' when you first get them. Odds are, either you didn't feel bad enough to see a doctor, or you did and they just blew it off and tossed you some broad-spectrum antibiotics - which not only wouldn't be likely to help, but could make matters worse, as antibiotics are made from mold toxins. They're notoriously inept at killing virii anyway. If you had Lyme AND the vulnerability to mold toxins? Whoa. Not nice. Environmental mold toxins, and they add to it? Double whoa. No antifungals? Helllooo c. albicans - another assault. So there's a place to start, anyway.
Go get 'em!
I have had CFIDS for four years but didn't realize what it was until this summer. The first time it "hit" it lasted for six months. Some of that time was during the summer and I did work for three months while exhausted and running a low grade temp. Then I went into remission for a couple of years. Two summers ago I got sick again in the IDENTICAL way. It was a harsher albeit shorter time frame, but I recovered less from it. Still worked. This PAST summer I got hit again and it has knocked me silly. NOT recovering from it and NOT able to work. The more I read CFIDS' patients stories the more familiar my own becomes. It appears a LOT of us don't get diagnosed the first round and go on to become further disabled down the line. You're in a good spot ... this is your first round. HOPEFULLY you'll be able to catch it and forever change the way you care for yourself ... perhaps netting you fewer and shorter relapses!
I researched and made appointments with every specialist in the book. I spent ten hours a day on the computer and going to the library to get publications and books while ignoring my wonderful family. None of these doctors were able to help me and they never would have been able to help me so I kept searching. Dont give up keep looking for a cause and when you figure out what it is look for the most qualified in the field and do what it takes to get well. This is our life and we are worth it.