This is what I did to help me improve.
Basically I tried to build up fuel in my body by eating and getting the fuel moving by walking without burning all the fuel up by walking to much.
Note: I tried to improve by building up my fuel and not do the walking but this didn't work for me.
When I first got cfs I lost my appetite and wasn't eating very much. Looking back I believe this was something that made my cfs worse. My body wasn't getting enough of what it needed which made my cfs stronger and me weaker.
Later on I was always hungry. I would eat and 10 min. later I was hungry again. I figured this was my body telling me whatever it needs to heal it's not getting enough of it. So I started eating 4 times a day. Something around 7 a.m., 10 a.m., 1 p.m. and 5 p.m.. If I got hungry in between I would snack on something. Usally yogart, nuts or fruit (bananas really help). I tried power bars and power drinks. Power bars helped with my hunger craving but I never really got any energy from them.
Besides junk food I didn't try to eliminate any other food. I didn't want to eliminate something my body needed.
Once I started feeling better I didn't eat as much. After 2-3 days of doing this I would end up crashing. It was obvious I couldn't cut down on my eating or I would crash. I also started eating everytime I went down. I noticed that after about an hour I would come out of it. These 2 things verified to me that I needed to eat in order to get whatever my body needed to help me improve.
Eating like this was helping me but it still felt like my body needed more.
Besides all the vitamins I was taking, I was taking a whole food supplement called Bio-Strath. It seems to give me a little boost. One of the main ingredients is saccharomyces cerevisiae. I looked it up and it's a yeast. That led me to nutritional yeast. I read that 2 tablespoons of nutritional yeast provides 52 percent of the recommended daily amount of protien. I started taking 1 tablespoon in the morning with what I ate at 10 a.m. and 1 tablespoon with my dinner at night. This really seemed to help give my body that extra whatever it needed. I've tried more but my body gets hot and I don't feel right. I started taking nutritional yeast about 3-4 months ago.
I did put on 30 pounds by eating like this. I figured I didn't have much choice. If it worked I would improve and if it didn't work I would stop eating like this.
When I'm in a crash eating doesn't help. I just have to wait to come out of it.
Somethings I kept asking myself that didn't make any sense to me:
Why after I couldn't work anymore (I had a physical job) and I was resting that I got worse and ended up being bedriddin for 3 weeks?
Why after sleeping for 10-12 hours I would feel worse then I did before I went to sleep?
Why any progress I made before a crash, I would go back to step 1 after a crash?
I came to the conclusion that my cfs was taking over my body the more inactive I was. I needed to try and start walking.
When I first started walking it was hard. I would walk between a half block to a block. I made sure that I didn't walk to far away from the house in case I crashed so I could get home. Sometimes I would walk back and forth in a room in the house if I didn't think I could make it very far. There were times I would lay there for an hour or two trying to summon enough strength to walk. If I couldn't find the strength I would massage as much as my body I could just to try and get some blood flow.
Early on when I walked I would crash after a day or two. A crash would last me 5-7 days. After a crash I would brush myself off and pick myself up and try again. After a while my crashes were getting shorter. They went down to 3-5 days. Then down to 2-4 days. The time between crashes was getting longer and longer. Also, one of the things I noticed was my morning blahs weren't lasting as long. I was improving.
About 9 months ago I was mentally worn out from pushing myself. I decided to take a break from walking. After about a month of resting and not seeing any physical improvement I decided to start walking again. Once again I started crashing after just 2 days. A crash would last about 2-3 days. This went on for a month. This verified to me that I needed some activity or the cfs would take over more.
I try to walk 2-6 times a day for 20-30 min. Rest at least an hour in between. When I tried to walk longer then 40 min. I would end up crashing. More short walks works better for me then a few long walks.
When I'm in a crash I don't walk. My cfs gets worse if I try to do my walking.
It took some time and I seemed to improve in stages but between the eating and the walking I improved dramatically. I can't ran a marthon or exercise like a madman but I feel normal around 80-85% of the time now. I've been able to cut out what I eat in the afternoon with just a snack. When I get hungry now I don't go down and I don't have to eat right away. I'm able to walk without any problem and I hardly crash anymore. When I crash I'm even able to function through it if I have something to do.
It's important for me to get as much oxygen as I can. I noticed that if my nose gets plugged I will go down. It's like I'm in a crash. When it gets unplugged I almost instintly feel better. I use nasal strips at night to get as much oxygen as I can. This really helped me with my sleep. I read most people with cfs breathe with their chest. I'm one of them. I don't take in as much oxygen this way. I went on line to find the correct way to breathe.
Pills I take - multivitamin, magnesium, potasium, fish oil, b-complex,b6, b12, d3, d-ribose and bio-strath.
Things that make me worse, triggers my symptoms:
Alcohol - alcohol triggers a lot of my symptoms.
Speed - If I do things fast or quick.
Hot shower or bath - if water is to hot I feel horrible afterwards.
Salt - Food that has to much salt. Potato chips, french fries, etc. I had fries a couple of times from a place I was eating and both times I went down for 3 days.
I hope this helps someone. If you have any questions feel free to ask,
So the 2 main points are eating more and breathing better? In other words speeing up your metabolism. Have you tried thyroid medications?
I take thyroid medication. The eating and nutritional yeast seemed to help give my body whatever it was lacking even with all the vitamins I was taking. The walking or activity seemed to help distribute it throughout my body. I just had to learn how much walking I could do without burning up whatever my body was getting from the eating so I wouldn't crash. I always pushed myself, that's why I crashed so often. Over time my body was able to build up more of whatever it needed from the eating which enabled me to be more active. The breathing was something that affected my cfs. It wasn't a cure as much as something to help my cfs symptoms. The eating I observed that when I got hungry I would go down and thinking back remembering that I hardly was eating led me to the conclusion to try eating more. I noticed that with resting it was getting more and more difficult to physially do things. That led me to try walking. I do rest when I'm in a crash or I will get worse when I try to do a lot. I'm not a doctor. I'm just someone who suffers from cfs. There's not a lot out there to help people with cfs. This worked for me and I hope it helps someone else suffering from cfs.
I don't want to be pessimistic, but it'd be interesting to see how long you stay improved. The fact that you still do crash is possibly an indication you're helping your body deal with the chronic fatigue (which is a good thing) but not curing it. I'm not posting this to take away from your achievement, just to offer my experience. It seems CFS can be a very individual thing.... what works for one person could have no effect with another, or maybe make another worse.....
I'm 47, I've had chronic fatigue since I was in my early teens. I've tried lots of things. I'm convinced sometimes change in itself can make a short term difference, especially a big change because it "shocks" your body. I remember a radical diet change which initially made quite a difference years ago (although it wasn't the cure) but after a while I stuck to it less and less. A few years later, I tried it again and felt nothing.... it was almost like my body said "yeah, been there, done that".
The doctor I now see for my chronic fatigue (he prescribes me either dexamphetamine or modafinil to give me the energy I wouldn't otherwise have) once told me a story. He said he's been treating chronic fatigue patients for over 20 years. He told me there's two types of sufferers, those who are perfectly healthy one day and wake up exhausted the next, and those for which the chronic fatigue comes on very gradually, over months or years.
According to him, the first group can overcome it if they do the right thing (diet, exercise and rest etc), while the second group have got it for life. I am, depressingly, in the second group. Several times I've picked up considerably after trying various things, change in diet, exercise, even finally sorting out a back problem. The last one turned out to be the cause of my breathing and digestive problems and a bigger contributor to how tired I got after eating than the CFS itself. Which has often made me wonder if CFS is generally nothing more than being very tired, but having CFS stops your body from dealing with other causes of ill-health which wouldn't effect a "normal" person too much, or maybe not enough for them to even notice something's not quite right.
A few times I thought I'd found the cure, but it didn't last. Unfortunately by the time you've had chronic fatigue as long as I have you've got nothing left to keep pushing through it. At least I don't, not after 30 years. If it wasn't for the dex/modafinil I take now I think I'd just go to bed and stay there for the rest of my life.
My doctor's main theory on chronic fatigue (and sometimes I think he's nailed it, while other times I'm not so sure), is chronic fatigue sufferers have something wrong with their sleep, which doesn't give them the energy it should. After a while everything else starts to slow down (brain and memory as well as your body) and you become susceptible to getting sick etc, exactly as you would if you were a healthy person who deprived themselves of sleep on a regular basis. I do know I generally always wake up feeling exhausted. Ironically if I'm going to feel anywhere near normal (without taking dex or modafinil) it's probably going to be towards midnight, and who wants to go to bed when they feel okay, knowing they'll wake up feeling like crap? It's supposed to be the other way around.....
Anyway, as I said I'm not trying to take away from anything you've achieved, just offer some alternative input. I could prattle on about my CFS experiences for days.... the diets, the exercise regimes, the self medicating.... none of which are probably a bad thing.... except of course the self-medicating (drugs and alcohol) but for me I do know dexamphetamine or modafinil makes life bearable. In fact pretty much normal. I still experiment with different diets and I'm about to embark on a new exercise routine, but I'm no longer relying on them to cure me any more, which is in itself quite a relief. I'll admit though, even after all this time something (crazy) in my brain keeps telling me I'm going to get over CFS one day...... why I've no idea, but maybe some part of my brain knows something the rest of me doesn't.... I can only hope.