HI THERE,YOU SEEM TO BE FOLLOWING THE SAME PATTERN AS ME...I GO THROUGH STAGES OF THIS AND THEN I SEEM TO PICK UP A LITTLE.I FIGURE IT'S JUST OUR BODIES WAY OF GETTING THE REST IT NEEDS.
AM AT THAT STAGE AGAIN AND YES ITS A PAIN AND I GET DEPRESSED BUT I DO KNOW IT'S NOT OUR FAULT...IT'S CFS...I TRY NOT TO DO THE GUILT THING ANYMORE,IT JUST ADDS TO THE MISERY.
SORRY I DONT HAVE ANY QUICK FIXES...I WISH I DID.MANDY.

Yes, CFS can get this bad. You can end up in bed for weeks or longer, with total exhaustion and no idea when you will get back up!

The secret to dealing with the really down times, I am learning, is number one, don't blame yourself for the little things you can't do for family and friends.

It's CFS that's bringing you down and sapping up your energy. It's not your fault. I tend to want to feel guilty too, it's a normal response. But please don't do that to yourself. Your husband will understand that you were unable to make dinner. He can help! He can help make the beds too!!

So, sleepy Sue. Yes, it can get so bad that all you can do is stay in bed, but you will get up again!!

There is always hope!
Blessings!!

Hi, Yes i'm afraid it can get this bad. I'm going through a very difficult patch myself at the moment,in and out of bed. I know it's difficult but try not too feel guilty,as Darla says it's not your fault. Please, please rest,i don't want to frighten you,but i know of people that have been in bed for years!!! I'm terrified of that happening, and sometimes when i feel that ill,i think i hope i can get up again!! But i try to remain positive,yes i get down,this thing can really drag you down, especially when your not feeling well. Just remember you came out of the last relapse,and you'll come out of this one. Sorry if this came over a bit harsh,but these things can happen,and i just want to make you aware of what this dreadful condition can do to you. Please rest !! x

I'd ask around and see what people are doing to save there energy and use it only when needed.

I knew this one lady that is was a dancer in the nutcracker and she told me never lay down try and keep moving and save your energy whenever possible. I have seen a special where people were bedridden big time and nobody was/is doing anything about it. I sometimes wonder about our scientists or the cdc.

Yes it does get that bad and worse. When I have spells like that I look to see what might have happened to trigger such a big flare-up. It's usually something that stressed me somehow.

You can fight it off to some degree, I had to do that when I was a caregiver and there was no one to pick up the slack, but eventually you have to crash. Sometimes there is no arguing with it, you just have to let the disease win for a while. If I try to work through it, I wind up vomiting until I am so dehydrated I need an IV, so I try not to do that anymore. The ER is just too much of a nightmare for me.

For alot of people it gets that bad, and a hell of alot worse. For me, bedbound is as bad as i've got, out of bed for a maximum of 2 hours in the day, for meals, i'm up more now, and just about able to do 4 hours college a week, pretty much all the rest of the time i'm in bed. i'm still only able to walk for 5-7 minutes, or else i'm in a wheelchair.
I have friends who are tube-fed, their energy is so little that they can't chew, can't open their eyes etc.
This is such a hideous illness, the more determined you are to fight against it the harder it will fight back at you.
Listen to your body!
Take care Sue, and feel free to message x

Those are all the same symptoms I've felt since I came crashing down with CFS 18 months ago. Plus it was a huge effort to string words together into a coherent sentence.

I went to three doctors, and none of their treatments worked (hormones, food supplements, dietary changes).

But I have gotten better these past four weeks for some reason. Here are a couple of things that worked.

Acetyl-L-Carnitine helped get my brain unstuck. (You can get it at any heath food store.)

Plus I recently got prescriptions to treat the vertigo and vomiting. (Like RichieD, I would vomit if I overextended myself.)

I am still in bed most of the day. I measure my wellness by this: did I have enough energy to take a shower today?

One thing I've learned from the DS site is that this disease seems to have its own timetable of ups and downs. I haven't figured mine out yet, but I did want to let you know that you aren't alone in what you're going through.

I guess I am one of the only ones, but when I got to the point you are at my DR put me on Provigil, and then added Adderall to it so now I take both every morning. I have to work full time and Ihave a 4 year old at home, and these meds are lifesavers for me. I have been on them over a year and they still work great. I do have days, not very often, where the fatigue is greater and I have to take a day off and sleep all day, but they don't happen often. I try to sleep in on the weekends, well on Sunday when my husband is home to catch up on rest. I don't know down the road if they will continue to help but these meds saved my life the way I know it. I am only 34 and got CFS and Fibro at 30. My worst symptoms is the fatigue, and nausea and throwing up, and pain of course. I have a med for nausea now. If I could get rid of the fatigue I would deal with the pain. Maybe your DR is willing to try one of these meds to help you. I have seen others on Adderall or Provigil, not usually both. I need both to function my fatigue is so bad I would sleep all day without them. Good luck. Message me if you have anymore questions. I don't seem to have any rebound fatigue with these meds either. They make me feel normal again most of the time.

Yes this has happened again to me on and off over the past 2 years after having me/cfs for over 10 years..dx thn....it is terrifying..just as bad as the beginning but now I know what it is...fortunately I do have periods of betterness but really can,t do much...GUILT..I am learning NOT TO feel guilty ..I made that choice but by gosh its mighty hard isn,t it I hear you..I think its the woman in us...the care....all the best my friend

All of this is an autonomic nerve system response that tells your system when to shut down and when to wake up and that you're well rested...

Come check out the neuropathy group. There is over 100 photos and 30 research topics with hundreds of links..

http://dailystrength.org/groups/neuropathy

More specifically the topic on autonomic neuropathy:
http://dailystrength.org/groups/neuropathy/discussions/messages/3273854

I developed mono and the Epstien Barr Virus in Jan 2007. My family physician and I both thought at first I had a bad case of the flu. I returned to work 3 days of 12 hour shifts and it was a mistake because it was then that I became bedridden for 3 months and in the same position you are now. I was stricten down with CFS and Fib and so weak I could hardly get from one room to the next, much less up and down stairs. I remained in a severe condition for around 5 months and it was in the 6 month that I began to regain some of my cognitive and physical abilities back.

I have read that when we are in this stage we need "progressive rest therphy" to recover. Unfortunately our bodies help our minds figure this out on our own cause we are so weak and have little or no energy. WE couldnt do too much if we tried. We dont have a choice in the matter. Listen to your body and get some progressive rest so that your likelihood of recovery will be increased and you can beat this.

It is a dramatic change in lifestyle. I think what bothered me the most being in that stage was feeling isolated, and unproductive...like my life was meaningless. It is human nature to feel quilty for not being there for our loved ones. It is ultimately frustrating when this becomes a prolonged period of time and we have no control over it.

Please try to develop this perspective on it all. This is probably a temporary thing, I am resting so that my life will be more meaningful in my future, my body needs some healing time and I have to accept that and not allow it to bring me down nor think it makes me an invaluable person or less of a loving human being. Try not to be hard on yourself cause the more positive attitude you have the faster you will heal. I believe in the power of positive thinking in healing.

It is much easier for our bodies to heal when our minds are optimistic although I can understand what you mean when you say it depresses you. It can put us in a helpless, and hopeless feeling state. I feel for you and hope that this will not last too long and that you will start feeling better soon.

I contribute my progressive rest and relaxation plus my will to feel better as me being successful and recovering to a better condition and or state. I am sure that it will take some time for you to feel better but keep the faith and rest, take many supplements, eat right, drink lots of water, and try to relax. I hope that your husband will stand by you and give you support.


Everyone case is different so not only you cant determine how long you will remain in this state. What you can do is rest, take supplements, I would get Ribose, eat right, try to get up for short periods of time and walk, pace yourself, it will increase your circulation and help with stiffness and muscle and joint pain. I would try to get up 5 times a day atleast and do light stretching and walk around.

Yes CFS can get this bad, and I get this way too.

Whoops cutesy I doofed up - sorry about the ending - I mean it is saying the same thing over again. I had a friend come over and got back on and forgot where I was on the post. Take care of yourself honey and I am here for you if you need a friend.

PS
I wouldnt advise anyone in this state to take Provigil or Adderal because they are stimulants and stimulate the Central Nervous System. Granted they give you energy and help you be more productive...they are not advised for severe cases. They work against the concept of resting and restoring your body and put it into a false state of energy controlled by medication.

Your body needs rest and not stimulation now. I do beleive that they are good and effective for someone who is in a better state and isnt at the bedrest state. They then give that person more energy and allow them to function better. But in a severe state you need to rest progressively and you cant do that taking a medication to give you energy in order to heal and restore your body. Instead you need the opposite rest and less activity now. I hope that this makes sense.