Chronic Fatigue

therealsantrix

Has anyone else recovered from CFS? I have struggled with weight since 2005 when I slipped back into CFS after a stressful period in my life. Before this I was walking 7 to 10 miles a day with ease. I'm only now feeling able to walk 4 miles regularly without feeling washed out. I never get a buzz from exercise and if I push things I always just feel whacked and have to rest for a few hours. It's frustrating. Does anyone else feel this way?

lemon629

I have had problems like this in the past and it still re-surfaces from time to time. (I have been told I have fibromyalgia-- started with fatigue and insomnia and eventually also developed pain in knees, ankles, and elbows.) It's best to take it slowly so that you don't trigger a flare. You can push yourself a little, but just a little. Increases in activity need to be very gradual. Be gentle with yourself. Have you tried yoga? That helped me. How is your diet?

therealsantrix

Well, I started my diet at the start of the year - previously I probably consumed 2500 to 3000 calories a day on average, and walked a couple of miles, but was otherwise largely sedentary... I have been lucky in that I never suffered with joint pains - just chronic lethargy and lack of interest.

Now I'm walking about double that, sometimes more and consuming around 1700 calories, no more...

Today I learnt my lesson... I had only eaten an egg with dry toast at about 8am... I had done a couple of miles on my treadmill and the weather improved so I took the dog out to the forest - after about half a mile I nearly passed out... I still feel light headed but otherwise fine - no nausea or anything... pulse is about 70. I'm not having a heart attack! But I think I'm probably not consuming enough in the morning...

I tend to stockpile my calories up so I can binge in the evening - there - I've said it... I need to move more of my calories to the morning meal...

WickyDunn

Not me personally, but my cousin has had CFS since he was about 11 (he got glandular fever and that's how his CFS started), he's 16yrs old in June and has gone from very poorly with a very restricted school and personal life to a full time college student with not one day off sick etc. Nothing really to do with losing weight or getting fitter but he is defiantly on the road to being CFS free and back to "normal"! He's even studying to retake a lot of his classes to retake his GCSE's. I'm so proud of him!

therealsantrix

I think recovery is possible for some - I'm glad your cous is doing well.

gentlygently

Lemon's advice is good - even if it can be frustrating to do!

jenniball91

Holy cow! You can walk 4 miles? I've had CFS for 2-ish years and on very good day I can maybe walk a mile. But that's like a once-in-6-months kind of deal. On most days I can only walk about a block or so, if I rest most of the day. I think one of the most important things is keeping each day very consistent. Don't push yourself. Listen to your body. How familiar are you with the top CFS doctors and their current methods? I've been doing Dr. Teitelbaum's regimen (D-Ribose, Acetyl L-carnitine and Co-Enzyme Q-10) for the past year and it's helped a little. Last October I finally got off the wait list for Dr. Montoya at Stanford and have started taking Valcyte & Sulfasalazine (they look at your antibody titers - CFS seems to be a series of viruses that have responded to a change in your immune system. I have CMV and HHV6, but I know that EBV and other viruses can also be culprits). Make sure you're going to a doctor that really specializes in CFS. There are only a few in the US (one in Salt Lake City, one in Michigan, Dr. Montoya at Stanford, etc.) but everybody that I've talked to that has recovered without relapse saw one of these doctors... or had CFS for 20+ years before it suddenly went away.

WednesdayJanuary07th2015

I have had CFS for 20 years this month, after becoming ill via a severe flu; that nearly killed me & unfortunately have never recovered, I even ceased going through puberty; for 2 years. However I do have periods of remission, my longest lasted 8 months; just once when I was 21 years old. I have also been completely housebound, for 2 years twice; from the ages of 18 through 20 & 22 though 24. Then until I was 32, I'd go into remission, for about 2 months; a year. Since I'll go into remission, a week and/or a couple of weeks; a few times a year. I am basically bedridden/housebound, 2/3rd's to 75%; a year but 25% to 1/3rd of a year; I am able to function relatively normally. However because I never am aware, when and/or how long, I'm going to be well; I am unhireable because I'm unreliable.

WednesdayJanuary07th2015

jenniball91 wrote: »

Holy cow! You can walk 4 miles? I've had CFS for 2-ish years and on very good day I can maybe walk a mile. But that's like a once-in-6-months kind of deal. On most days I can only walk about a block or so, if I rest most of the day. I think one of the most important things is keeping each day very consistent. Don't push yourself. Listen to your body. How familiar are you with the top CFS doctors and their current methods? I've been doing Dr. Teitelbaum's regimen (D-Ribose, Acetyl L-carnitine and Co-Enzyme Q-10) for the past year and it's helped a little. Last October I finally got off the wait list for Dr. Montoya at Stanford and have started taking Valcyte & Sulfasalazine (they look at your antibody titers - CFS seems to be a series of viruses that have responded to a change in your immune system. I have CMV and HHV6, but I know that EBV and other viruses can also be culprits). Make sure you're going to a doctor that really specializes in CFS. There are only a few in the US (one in Salt Lake City, one in Michigan, Dr. Montoya at Stanford, etc.) but everybody that I've talked to that has recovered without relapse saw one of these doctors... or had CFS for 20+ years before it suddenly went away.

It'd be so great, after 20 years; for mine to go away. When I went through my 8 month remission period, I believed that I was cured; so I started looking for work/6 months into my remission. I thank God, that I wasn't able to find a job because just 2 months later, I became housebound; for a 2nd time/for another 2 years. I absolutely hate the false hope, that that remission; had caused me. Therefore I've decided, that I won't seek to work again; unless a remission lasts/at least a year.

Lofteren

Physiologically, the only way a person can actually become fatigued faster than usual is if they have a neuromuscular junction disorder or they are deconditioned. This means that cfs is usually the result of psychological factors (I am not saying it doesn't happen, just explaining the mechanism) the most common psychological factor is obviously depression. So if you focus on treating your cfs in a manner that will also treat depression then you may see some success. Good luck to you.

WednesdayJanuary07th2015

Lofteren wrote: »

Physiologically, the only way a person can actually become fatigued faster than usual is if they have a neuromuscular junction disorder or they are deconditioned. This means that cfs is usually the result of psychological factors (I am not saying it doesn't happen, just explaining the mechanism) the most common psychological factor is obviously depression. So if you focus on treating your cfs in a manner that will also treat depression then you may see some success. Good luck to you.

There're 2 causes that I am aware of, it's either depression and/or infection. Timing and/or the desire to do/don't, what one had once had an interest in; determines the cause of it.