CFS is not necessarily a life sentence. The problem with CFS forums is that most people do not stay on the forum once they recover so you are going to get a very skewed perspective on recovery albeit lots of great advice, care and support.

Personally I think it is more helpful to recovery to have hope. Here is a book about people who have got better http://www.alexbarton.co.uk/cfsrecovery-stories.htm

It seems some people recover, to different levels of fitness and some don't. The percentage that recover from 25% ME/CFS (bedbound or housebound ie severe) I heard was 2%. I recovered from being completely paralysed with it. If there is any possibility, my advice would be don't give up the possibility of getting your health back. At the same time, a certain level of acceptance of your condition in the present is important so that you don't overstress or push yourself.

My experience was that my condition only got worse when I pushed myself or when I took loads of stuff my body couldn't handle. Otherwise there was generally a slow process of improvement going on. Other people may have a different experience.

MAXPB, I think it is probably so hard to predict for each individual person. I've gone through peaks and valleys throughout the years, and although I can't work anymore, and spend the majority of my time at home, I still have a meaningful,interesting life in a new way. I do have certain areas with measurable decline, but I have other areas of improvement - spiritual growth, personal peace, focus on what truly matters. I don't think CFS can be reduced to a "life sentence" or a "worse existence", it's just a different existence that the norm.

*than* the norm

I have never heard or read anywhere that it is degenerative. It waxes and wanes, depending on a lot of issues, esp. stress. I have heard of people recovering fully, so it's not necessarily a life sentence. Perhaps with more research will come more understanding and greater success rates with a full recovery.

Everyone is really different. I have been diagnosed with CFS for 15 years. I did have 2 years of what I called a remission, but then it returned. I have good days and bad days. However, I have multiple other health issues too. Focus on what you can do each day and not on what you can't. My CFS specialist had told me when I was diagnosed that I may go into remission within the first 5 years. After that the chances are very slim. However, I was well past that point when I did have a remission stage.

I'm going to agree with what's been said here. If someone tells me that had CFS/ME and they are completely recovered, 100%...back to work, back to jogging and biking, having another baby, well, then they didn't have CFS/ME!

I do! I have had it for seven years. Out of those seven years, I have had one time of "remission"...meaning, the illness simply wasn't present. Don't know where it went, but I had three full months of my "new normal" health! I was out almost every day. Tried to pace. Had Nov, Dec. and Jan of 2011 OFF from CFS/ME. It returned in full force at the end of January. I did not collapse when it returned! It was just a regular two week crash, and I pulled out of it as I usually do.

I found that this experience gave me hope! If it happened once, it can happen again. At no time during this "remission" did I consider, for one minute, that CFS/ME was gone. It's always going to come and go....it will change it's behavior.....it will get worse at times, and other times symptoms will totally disappear. Very frustrating!

So, I wouldn't say Yes! It's gonna get worse. I haven't found that to be true at all. It changes constantly. Bank on that....but it does subside at times and gives us a break at times.

You have to redefine your life. You will find that if you don't expect the "old you" to come back....you will have passed the hardest part of the testing of this illness. Just accept it. Don't push. Pace. Rest. Go with the crash......don't fight to get back into movement too soon. Your body will tell you what to do. If you don't do it. Your body will shut down on you and put you to bed.

Think positively, ok? Do the best with what you have, because if you have CFS/ME now, you always will have it! There is no cure. Outside of my faith that God could free me from this illness, I think I might feel hopeless more often. Medicine has done very little to help me. I chose life!!! We're all here to support each other...Thank God!

DarlaC, I find your post really really offensive. I DID have ME. I was paralysed, unable to move even my fingers...I was in agony, I nearly had to be on a drip. I couldn't even sit up. I stopped sleeping for weeks. I was spoon fed liquidized food. I was noise senisitve, light sensitive, at times could not speak for months. I was diagnosed by the top specialists in the country. How dare you say I did not have it. Yes I am not back to running or having babies yet, but I will be. I have complications physically from being paralysed and my body is healing, but I no longer have ME, that is certain. I am leaving tihs forum today, I've had enough. I had hoped that my recovery could have inspired others and given them hope but clearly not.

Boing!

I'm sorry if I offended you. I was responding to the poster with my own personal experience, as you did!

I am so glad that you had good recovery and hope you continue to do well. At no time do I ever intentionally say something offensive on this board.

I am sorry! Nothing I said was directed at anyone elses response.

Everyone is different...in my experience it has been a little over 5 years since my diagnosis and being treated and I am feeling worse as tine goes on plus since my immune system is so poor my Epstein Barr virus has become active again since June 2011. So I now also have chronic mononucleosis on top of this. There is a good book on amazon.com called Chronic Fatigue Syndrome: a treatment guide. It was free ebook for a while so I downloaded and started reading and it says the people who do recover or at least get somewhat better usually do in the first 5 years and once it is past 5 years recovery percentages are less. But everyone is different so you never know... just be good to your body and hope that will help.. vitamins supplements and eating healthy is a start..

Thanks everyone

I'm so convinced I have CFS, preempting the doctors and trying to wrap my head around the concept of this current life being possibly permanent.

I truly appreciate the positive thoughts and energy and hearing from folks like Boing who have been to hell and back and live to tell the tale. Hope you don't leave us Boing.

Glad I've found you guys.

I became ill suddenly in 1998. I was able to continue to work for 7 yrs but had to change professions because I could no longer travel or do the fast paced juggling that was my other career.

I had to stop working in 2005, I just couldn't hold a job with lack of sleep and brain fog, and the pain. I have never seen any kind of remission. My symptoms have been consistent since day one.

I have a lot of up and down. Like during the day I have varying amounts of fatigue. The very best and worst days both have some up and down.

I also have the kind of up and down that is crash, and not crash. Also little tiny crashes (lay down for a few minutes) and huge crashes (greatly reduced energy for months).

This winter confirms that I have ups and downs based on season. In this temperate climate warm weather good, cold weather bad. At least I hope so. I'm counting on spring bringing relief from this crash that has lasted since October.

I have some things that have become worse over time (muscle weakness, weight gain, etc.) and some that have become better (brain fog, social stuff, etc.) I think the bad stuff has to do with length of time with the illness, but the good stuff has to do with learning what works and what doesn't. So over time I feel I can expect it to be in some ways worse and some better.

Here is to hoping that we all learn more stuff that helps.

Although ME/CFS has been likened to MS by many specialists it has not thus far been designated as Neuro Degenerative (like MS, Alzheimer's, Huntingtons and Parkinsons) even though the British diagnostic criteria for ME reqires a Spect scan and an MRI of the brain.
In about 60% of the cases there is damage to the inner cortex of the brain. In about 95% of the cases thee is damage to the Brain Stem and the Pineal Gland. Always godtoget checked out for Heart damage, Bone degridation and muscle degridation. Most people 75 % of sufferers recover to varying degrees from 5% recovery to 100% recovers over 4 to 20 years. For some M/CFS is a life sentance dependant on what the virus damaged and how badly it damaged it. I have had 20 % body function for the last 8 years. I know women who have soldiered on with 15% body function for 25 years. They are my heroes.

My CF was related to a saline filled breast implant following surgery for breast cancer. I had the implant removed and fell much better!!!isabelle1954

Usually I don't comment much, but this is one time i need too, i feel everybody also vents differently about this disease and fibro, because most of us don't want to admit we have it, or it is a life sentence. Well, most of us have to come to an understanding with our bodies so we won't overkill ourselves trying to do things we know is going to put us under. I have dealt with this for 20 years, and still do it sometimes, but I am coming to the realization that it is not going to go away,and I am never going to get back the "girl" or the life I once had, and with age, it does get harder "letting go" of things. I live alone with NO help, so I have to depend on my feelings to get me through. Mine is tempermental with the weather also, but I have found that certain stressors will make me worse too, so i have to avoid certain circumstances, and certain people with negativity. Depression comes with it as well as finding things that help you personally, and without it, and your own understanding, some get offended, but we have to go on no matter what.