I am feeling awful. Just can’t stay awake. Even to drive. Ihave had this since 1995 or maybe earlier. I see some people get better w/out relapses and some relapse and eventually get better. I am neither. I have maybe some good days, but the rest, I am always tired. On those good days, I take advantage and get what I can get done and then I pay for it later.
If anyone has any ideas to offer, I would greatly appreciate hearing them!
Deb, you have me curious… what is white tea??? im never heard of that.
“The biggest thing I learned about this condition is to SAY NO which I never did before!”
I had to learn that too. Its amazing how hard it used to be just to say that one word. NO~!
You are right on the No word. I have to start saying that more and I find it very hard to do.
A Quote from someone:
I am only one,
but I am one.
I cannot do everything,
but I can do something;
and what I should do and can do,
by the Grace of God, I will do.That is so beutiful!
over the last few years i have often relapsed after getting a bit better, but now it has been at least a year now since i have relapsed.. and i continue to improve :O!!
What is you secret? I went to see my Dr. last Thur. I cried because I feel so angry that no one it taking me serious. She told me I was marked as Severe Fibro and CFS. That when I go to the Dr. to ask for help with my problems, I scare the Drs. because they don’t know what to do for me other then pain management. That they still don’t know why I have this condition. She asked my if I fell down the stairs any time during my life. I told her yes. Twice. Also if I had been in any car accidents? Which I have 3 times. If I had been raped or abused. I haven’t but have always been afraid of heights, speed and speaking up for myself. She also said that I will get much worse before I finally start getting better. She said don’t think about a wheel chair because that was to negative of thinking. Also, I must keep moving. If I don’t, my muscles will get weaker. She said she is a christian woman and she believes God is the only one who can get me thru this. She has had several patients that have survived this terrible condition only by the grace of God. That I must seek a higher power to get me thru this. …DEB
Deb… from a couple of things your doctor has said, Im thinking that maybe you should be seeking out another doctor for the CFS. Your doctor thou she has had CFS patients before, some of the things being said to you, another doctor certainly would not say and would disagree.
“Also, I must keep moving. If I don’t, my muscles will get weaker.”
Many CFS patients already push them stuff too hard and over do things due to their personalities… for many, they need to be told to slow down. You need to listen yourself to your body and find out what helps you and what makes your CFS worst. If moving about more does help your CFS (as it can help FM) move about… if it is making you sicker thou, you probably need to slow down if you want to end up recovering.
“She also said that I will get much worse before I finally start getting better.”
Now your doctor saying that really bothers me. How on earth can she know that? Unless that has been the case with all her other patients cause she’s given them some bad advice which they may of followed??? If her patients always go getting worst before starting to get better that would bother me and have me innerly asking myself what may be going on there. CFS is a quite unpredictable illness and NO ONE can tell you that you are going to go and get worst!!! You may not. With early CFS the best chance of recovery has been shown to be by rest.
Please dont think you are going to go and get worst cause your doctor as said that, you may not… and thinking this will only cause you more stress which will not aid your recovery.
Think about finding another doctor who knows about CFS. I also want to ask you "what supplements or medications has your doctor got you on to try to help with the CFS? There are things which can be tried and often things do help a bit. Is she doing anything at all for you?
It's my opinion that she should be recommending you try various things, to try to work out what does help you (help not cure..as this cant be just cured), most CFS specialists do this. Its an experiemental process of various things till one finds things which help as every CFSer is slightly different. Any doctor who says that nothing, no treatment, can be done for a CFSer, is a bad doctor. They just are completely naive.
I had years wasted of dealing with CFS in which had I had a better CFS doctor, I could of been trying more things… and not wasted as much time as was wasted doing nothing for it at all. Fortunately Ive got a very good CFS doctor now in which we are trying various things and Im finding many things which do help me. 
. The first time I saw him he promised me he’d had me feeling better, and you know what, he actually has . Pity I just had this illness for almost 10 before finding him.
tom… is that improvement you think due to pacing yourself well and resting whenever you need too??? or due to something else??
Hi there,
Some of you were talking about relapses. So far I havnt had any, i used to suffer from arthritis in my ankle and my knee used to hurt aswell, although i dont think my knee had developed arthritis though. Anyway’s, i changed my whole out look onlife because everything i was taking just wasnt working. the drugs did help a little but as soon as you stop taking them the pain just returns. That is no way to live.
I turned to more natural remedies because my doctor didnt have much else to offer me. Anyway, the point i am trying to make is that i have made a real difference to my life. I slowly changed my whole outlook on life, everything from food, exercise and even my spiritual perspective. Well if i can do it, then anyone can. I just hope that i can bring a little hope to people lives.
If anybody needs any help then i am more than happy to help.
Michelle
I'm sorry it has taken me a while to reply.
Deb i pretty much agree with what Tania has said, i'm not sure your current doctor is the one for you.
Resting and pacing myself has been pretty important. Although it took me a long time to accept that pacing myself was something i had to do. Just laying down and turning off (usually without actually falling asleep) is something i have started doing when i feel over-tired, and within 20-30 mins i am usually back to just normal tired :D.
I too have tried _many_ different therapies / medicines to help me recover. Unfortunately none have had any significant benefits for me. Although i have heard that many people have found a wide range of things to help them.
I have started to beleive that 'quality of life' is very important, if not the most important part of recovery, at least for me. If possible removing the aspects of your life that you don't care for, we all have them and continue to do them for different reasons. Indulging yourself in healthy things that you enjoy.
I realise some things are necessities, but perhaps a major life change is whats needed.
To give you an example from my life:
I was doing pathways in highschool (a program that allows you to complete your final year over up to 5 years). To my understanding at the time there was no alternative. Completing highschool was something a must do, no matter what the cost. Yes, i was doing a heavily modified workload thanks to pathways, but it was going to draw my highschool out for an extra 3 years.
I never realised how much i hated it, i pushed the part of me that felt alone and alienated down, and forced my way through it. But because of this i was halting my recovery. I was using so much of my energy forcing myself through the motions of something i didn't want to do. I didn't even realise i didn't want to do it untill the third year was comming up.
At any rate i decided to take a risk and leave school and apply for a college to study counselling. It was a terrifying thought, leaving what i knew was safe behind, but the moment i made the decision i felt releived. I now attend the college 3 times a week, for 3 hours each session, far more than my workload in highschool. But i have far less problem doing it, because i want to do it. I get to be around people my age and older, making new friends.
I know that i am not yet recovered, probably at least another year off, if not more. But i am 3 months into the change of scenery, and i feel 100% more lively. I guess the difference is that i now feel inspired to wake up and experience my life, where as before i felt trapped and alone.
If you have read this far thankyou for indulging my thoughts :). Weather or not this is true or will help you in some way i have no way of telling. But i do feel that by making our lives more enjoyable, we help to remove things standing in the way of our recovery. I am only 19 and have no responsiblities, so i imagine its easier for me to do than some of you guys, but i think even small things can make a difference.
I hope this finds you all relatively well, best wishes.
Tom x
Hi all Hi Deb I agree with Tania
I think you should get yourself another Dr. Hon.
Someone who understands CFS much much better.
In my opinion (as I have experienced it) I don't believe it gets a whole lot better. It's kind of like you feel like real crap and then it gets better and you only feel like crap.
I also find (from my own personal research :) that many of us go on to expand our medical conditions. Just to add variety to our lives.
"
I also find (from my own personal research that many of us go on to expand our medical conditions. Just to add variety to our lives. "
lol Wen… Ive started to think of us as pizzas, calling myself an alphabetical pizza. This is cause we add a bit of this and add a bit of that, whats going on with our pizza today, what variety, flavour is it going too be… I wonder this each morning.
We end up looking something like ME/CFS/FM/MCS and the list goes on.
ya it's like Okay what's the flavor of the month.
Lets try a little abdominal and joint pain sprinkle it with nausea add a cup of hair loss and smother it in brain fog. Now isn't that a fine combo.
The alphabet surprise special!!!!!
< those who do appear recovered.. often have cut back on a lot of their life stuff and still could be at risk of a crash. >
Absolutely. For 12 years, I was considered one of the success stories, because I recovered and went back to work full-time. But work was all I did. I had to drop my volunteer work; it was too much after I crawled home from a day at work. I had to stop going to church -- if I went to church on Sunday, I could not make it through the week at work without taking a day off.
I appeared normal from 8 AM to 6 PM, but quite literally, when I got home from work at 6, I'd collapse on the couch and have to stay there for at least an hour before I could manage to get up and cook dinner. That was what people didn't see.
And if I got the flu during the winter, I could count on spending all my non-work hours for the next 6 weeks sleeping. But, by God, I was passing for normal at work. (Though there were a few comments about the fact that I seemed to have the flu a lot.)
After 12 years of pushing myself that way, I wound up with the mother of all relapses. I've been down for 7 years. The first 2 years, I was begging for sleeping pills to improve the quality of my sleep and all they'd give me were anti-depressants. One of the doctors later said I was spending enough hours in bed, he didn't want to give me sleeping pills so that I'd spend more time in bed. Didn't get it that if I were sleeping more EFFICIENTLY, I wouldn't be spending 12 hours in bed trying to get 3 hours sleep. And since I was only getting 2 hours a night (usually between 5-7 AM), I just kept getting worse.
Finally got some extremely powerful sleeping pills, and after a few months of sleeping 8 hours a night every night, my immune system reactivated. It took 6 months, but it got the virus back under control, and I started to improve very slowly.
But at this point, the "structural" damage has been done. I was allowed to deteriorate so far that I'll never be able to work full-time again. I can sit (well, recline) and work on the computer for a couple hours a day, but housework gets me exhausted/short of breath in a matter of minutes.
Wow! I thought I had it bad. I have to go for another sleep study to see if I also have narcolepsy because I am so drop dead tired even with the machine for sleep apnea. Then the doc wants to make sure everything is checked and then treat me for chronic fatigue syndrome. I am so tired of being tired and dealing with this for so long. I want to work, but after reading this post, I am not sure I like what will happen if I d.
Thanks for sharing this~
< I want to work, but after reading this post, I am not sure I like what will happen if I d. >
Thing is, the doctor had advised me in 1988 to cut back to part-time. But my husband didn't earn enough even to pay our rent, and wasn't interested in getting a better job, so I had no choice. Doctor's orders and financial reality weren't compatible.
If I had been working PART time, as the doctor ordered, and not pushing myself to my limits, I would not have gotten as worn down over time.
But the major damage was done AFTER I stopped working, when the doctors kept blaming me for "refusing to get better" when they were giving me the wrong medication. Both the consulting rheumatologist and the pain management specialist whose lecture I attended put the blame for my rapid deterioration squarely on the doctors and their failure to treat, and not on the CFS. They both felt that if I'd gotten the sleeping pills and pain pills I wanted the first time I asked for them, instead of years later, we could've arrested this and gotten me back to work.
There's no reason to be afraid of going back to work, as long as you stay within your limits. I obviously wasn't, since I was working full-time and coming home exhausted.
I have been working from home since my Unemployment ran out (started my own business when no one would hire me), and find that I can handle 6-10 hours a week without a problem. But if I push that to 12-15, I start tempting fate.
And there's the key word for any CFS-related activity -- PACING. Do what you can without pushing your limits, and you'll be fine.
I think one of the hardest parts of this illness is never knowing what you are going to feel like and never knowing what exactly is going to trigger a relapse. I can tell sometimes when I am starting to wear down to the point where things can get really bad and I have learned to adjust my activity level. But it does not always work.
That is something that I have not learned yet, pacing. I know about it yet I still do not listen to my body!
"Lets try a little abdominal and joint pain sprinkle it with nausea add a cup of hair loss and smother it in brain fog. Now isn't that a fine combo."
lol Wen.
........
"I have been working from home since my Unemployment ran out (started my own business when no one would hire me), and find that I can handle 6-10 hours a week without a problem. But if I push that to 12-15, I start tempting fate."
nods.. that is about where I'd be with the CFS too.. only able handle 6-10 hrs work a week (if im lucky).
< that is about where I'd be with the CFS too.. only able handle 6-10 hrs work a week (if im lucky). >
I have a friend who worked for State VocRehab and told me 6-10 hours a week is almost impossible to find. Now, perhaps if I was related to someone who owned a business, I could ask them to create a job just for me, but even fast food is usually 15 hours a week. (and that involves things I can't do like standing and walking and carrying)
And then he did some quick math. The point of VocRehab is to get you off Disability, so you should be earning more than what Disability considers "self-supporting". As tough as it would be to find me a job 6-10 hours a week, it would be even tougher to find one that pays enough per hour to get me off Disability on 6-10 hours a week. Then add in all the other factors (I need a place to lie down flat, not just sit quietly; I need total flex time; I need unlimited sick days) and he really was not too encouraged about even State VocRehab finding me a job 6-10 hours a week.
As I said, I started my own business. Work gets e-mailed to me and I e-mail it back. If I need a nap, I take a break. If I really don't feel well, I send the work to my healthy back-up, and just let the clients think that I'm swamped.