arrow94 Comments
  1. SanDiego#1
    Feb 26 - 1:04 pm

    I find the only thIng I can do to help myself out of a crash -is to pull away from everything. Computers, Phone,
    Visitor etc. I also try to trace back what was going on when it started. NEW TREATMENTS -I HAVE TO START SLOWLY AS THIS CAN ALMOST ALWAYS START MY DECLINE. IF IT IS A NEW MED. I HAVE TO TAKE 1/4 the rec DOSE. OR STOP IT COMPLETELY AND THEN TRY AGAIN WEEKS LATER.
    I HAVE TO PULL AWAY FROM ALL STRESS-EVEN I DON’T THINK IT IS CAUSING THE CRASH. MINE USUALLY STARTS WITH DIARRHEA, WEAKNESS, DIZZINESS AND MALAISE. I AS ALL OF US HAVE A PROBLEM WHEN I FEEL GOOD- DOING TOO MUCH.. THIS SOUNDS CRAZY-BUT I WILL NOT ARGUE WITH MY DR. ABOUT STAYING ON A TREATMENT IF I THINK IT IS BOTHERING ME. I STOP IT IMMEDIATELY-EVEN IF HE SAYS CONTINUE. STARTED ON DESMOPRESSIN YESTERDAY AT REC DOSE. DID NOT SLEEP AT ALL FOR 18 HOURS. AM BEING TREATED FOR DIABETES INSIPIDUS. NOT GOING TO CONTINUE UNTIL I GET ANSWER BACK FROM THEM.OF COURSE AT THE MOMENT -I CAN’T EVEN VERBALIZE MY THOUGHTS TO THEM.

    SAN DIEGO

    • Cort Johnson
      Feb 26 - 6:15 pm

      Good luck with the diabetes insipidus…interesting that your crash starts in your gut. Honestly I wonder if that’s going to be good for you in the long run….Have you ever tried Xafaxin?

  2. Margaret Wessels
    Feb 26 - 2:59 pm

    Crashes occur for me, as with others, when there is too much, this applies to everything. Attempting to get over this involves fine attention to diet, (low GL). I don ‘t feel like eating most of the time so juice greens, a little beetroot and apple and small amounts of protein and veges and lots of rest. What am I missing?

    • Cort Johnson
      Feb 26 - 7:45 pm

      I find that I want to eat but that big meals really drag me down…so eating little meals is, come to think of it, a good thing.

      My sensitivities tend to flare up as well – so being in a clean environment helps a bit….

  3. Cort Johnson
    Feb 26 - 3:09 pm

    Apologies for the website going down…sigh…

    Here are some replies from Facebook

    ‘remaining immobile, sleep and patience. and being extremely lazy !!’

    ‘haven’t found anything that works as well as nothing!’

    ‘Nothing works for this last crash. I’ve been bedridden but for a few forced outings for 14months and Im still getting worse. If I didn’t have to pee and eat my one meal a day I would sleep right round the clock and still feel desperately sleep deprived every time I woke up. Being awake is a complete nightmare that I can at the moment only escape by this notebook until my hands go too dead to hold it. I don’t see that I can ever recover from this one.’

    ‘You need 4th stage sleep, a continuous block of it when your body temperature has fallen and you are slightly hypoglycemic. When all these ducks are in a row, you should have your daily cortisol event and wake up. People only have one, if you miss it you will have low cortisol and feel wretched. If this isn’t happening, you may need a different doctor.’

    ‘spend as many hours as possible completely still, like playing dead, possibly outdoors in nature, focusing on the body, making friends with (well, being mindful of) the symptoms, doing breathing meditation in the lying down position, watching trees and clouds to stop the thinking. Tons of magnesium and potassium. Eat mostly brown rice with umeboshi plum.’

    • Sasha
      Feb 27 - 7:09 am

      What’s a daily cortisol event?

      If I wake very early – 5am, say – I don’t feel ill but I do feel too tired to get up. If I wake at a more civilised time – 7am, say – I feel ill (fluey, achey) as well as tired.

      Is this something to do with this ‘cortisol event’?

  4. Cort Johnson
    Feb 26 - 3:09 pm

    For me its mostly rest but blood volume enhancement and salt loading can help…It depends on how much I’ve overexerted myself.

    • Dan Neuffer
      Feb 26 - 6:56 pm

      That’s what I found helpful also – the salt helped with the aweful orthostatic intolerance!

  5. Mary Jane
    Feb 26 - 3:46 pm

    dont talk..shut off phone..sleep, and rest.

  6. Lars
    Feb 26 - 4:07 pm

    rest, rest, rest…tried ignoring it as the LP coaches preached me, made me so sick I could not get to the bathroom…
    ——
    Cort, I have tried sending you an email through the website yesterday. If you have time, could you please check if you got it and let me know your thoughts. If you are not interested, I would appreciate if you could put me in direct contact with Bob Miller, because I have some input that maybe could be of interest to him before the FDA meeting…

    • Cort Johnson
      Feb 26 - 4:28 pm

      Sorry Lars – not sure what’s going on…sent you an email directly..

  7. Patricia Hess
    Feb 26 - 4:27 pm

    Taking oxygen 10L through non rebreather mask for half hour shortens the collapse. Modified Myer’s cocktail infusion wiith glutathione push 2x per month improves overall system along with daily oxygen.

  8. geoffrey brown
    Feb 26 - 4:44 pm

    sleep and rest for how ever long it takes
    most off us no our limits if things are under your control dont exceed them –easy to say harder to do

  9. Jill
    Feb 26 - 4:46 pm

    I lie flat with a pillow under my knees and try to slow down my thoughts and sleep. I need it to be a quiet environment with no bright light and I need to be warm. I try to place a heat pad on my knees and shoulders or the part of me that aches the most! I usually cannot lie on my side because my shoulders and hips are too sore. I try to drink as much fluid as possible. A crash can last for days or weeks….it used to be months, so things are improving :-)

    • Cort Johnson
      Feb 26 - 6:12 pm

      Congratulations on getting better and I hope you continue to improve. I have to ask – do you know what you’ve done that’s helped you to improve?

      • Jill
        Feb 27 - 5:25 am

        I think a reduction in my stress levels has been the main factor that has helped me improve. I was forced to give up my job as a teacher four years ago because I crashed badly. I can relate to the months of careful baby steps that Suella refers to, as that is what it has been like for me since then. I’ve had CFS for twenty four years and have crashed badly and then slowly recovered enough to struggle on, many times over the years.
        It has been very helpful and interesting to read the other posts! I too loathe the racing heart, the low body temperature and the wired feeling.
        Many years ago a doctor told me to listen to my body…..it was good advice and I try to do that, though unfortunately with this illness, I just don’t always understand what am hearing!!

        • FCP
          Feb 27 - 12:24 pm

          Yes, reducing stress levels is what allowed me to fully recover from CFS as well. Also make sure you don’t do too little – that just makes it worse for some reason. Basically I recovered from CFS due to my own “cack-handed” versions of CBT and GET – which I figured out before I even knew anything about CBT or GET.

          I think it’s important to make big decisions like giving up a stressful job early in the illness. If you try to “push through”, it can make it very difficult (if not impossible) to ever recover.

          • Jill
            Feb 27 - 3:09 pm

            Yes I agree that it is very important not to do too little. I have, mainly because I really was too ill to do very much and as a result I have become deconditioned which is a problem in itself. I am slowly trying to walk a little and do some very gentle exercises to try to improve my strength and fitness. As others have said, it is a case of doing a little but not over doing it!

  10. Thomas van Gerven
    Feb 26 - 4:49 pm

    my simplest way to limit the crashes is to take an extra half Nortryptilene that night,or if pre warned of a long day,ill start it the night b4

    and ill STRESS now, im taking LOW DOSE Nortrypt ,ONLY to help regulate seretonum,since a major part of CFS is lack of good sleep(ie little or no Rem3 Rem 4 sleep to regulate next days seretonum usage..which means starting next day without the seretonum to help with energy etc)

    I take 25 mg round 530 pm each day …5 or so hours before sleep and boost it to 40 odd mg when over worked

    ive found this will increase recovery time back to just the normal Lousy (:P ) by next day or so ,compared to a week in the dark in fetal postion

    the other advantage with this low dose Nortypt,is its also reduced the Lactic acid burn ,which is source of most of the Pain,which means I could lower my pain meds ,since I found too long on higher doses of panadol etc for pain,screws the kidneys/liver,which stops filtering of chemical smells like even simple cleaning products,which led to MAJORITY of my dizzy/woozy issues for first 3 4 years of the illness
    ie im usually taking just 2 Panadol a day now
    and have hardly any issues with the chemical sensitivities unless overly tired/stressed

    • Cort Johnson
      Feb 26 - 6:10 pm

      oooohhh…reduced lactic acid burn…boy, that’s right up my alley…is nortyptyline…’antidepressant’(kind of hate that term since they do so many other things), sleep med?

      Thanks for the tip…

      • Thomas van Gerven
        Feb 26 - 7:19 pm

        hi cort

        yes Nortryptilene (sp) is one of those seretonum regulating anti depressants

        as I stressed thou

        im using it for seretonum regulation ONLY not for depression

        read early on in my CFS,that most patients rarely hit rem 3 rem 4 deep slepp with all the issues like insomnia /restless leg etc

        which means body doesn’t produce the needed Seretonum for next days exercise
        (someone can correct my rough paraphrasing here …been a few years since I read it all…but body uses seretonum to utilize oxygen etc in the blood during exercise etc so…with lack of rem 3 4 state no seretonum created ,thus we wake already tired/depleted b4 we even start next days exercise

        along with this to help regulate sleep back to a more normal one ,10 mins in morning looking towards (not at ) the sun ,tells body to stop making seretonum and start making meletonum

        how I know it works for me

        first year or so I was bed ridden with the illness and also id noticed I NEVER dreamed

        within months of starting this regimin ,I was back walking dog a mile everyday ,and id started dreaming again ,which I took as reaching deep sleep states agin

        ALSO why this may not work for some

        Im one of the lucky ones that didn’t get WRONGLY DIAGNOSED Chronic Depression,and over fed on LARGE doses of antis ,usually at WRONG time of day ,which over time screwed up whole system and hid real issue

        for seretonum regulation to work it has to be taken at dinner time say,or 5 hours b4 bed

        IT ISNT a cure

        but it sure got me back a lot (say 60 70 perc of normal) and sure reduces the pain,since majority of our pain is Lactic acid buildup which doesn’t go away… lol all those aches under arms and across chest that feel like heart attacks

        and as above

        if I can reduce the pain ,without needing as much panadol etc….then liver kidney functions also retun to close to normal(mine were way out at start b4 starting the nortypt cos I was on so much more panadol)
        and thus I reduced most of the whoozy/dizzy feelings everytime I went near the cleaning aisle say in supermarkets(used to have to hold the trolley incase I collapsed it got so bad) and it took ages to realize it was just chemical sensitivity and not heartattacks etc,which I figured out when I over chlorinated the paddling pool….and heart rate sat on 120 for 3 hrs while getting all the whoozy etc feelings

        my experiences anyways :P

        • Cort Johnson
          Feb 26 - 7:47 pm

          Really interesting Thomas – thanks

  11. Kathryn Stephens
    Feb 26 - 4:55 pm

    The only thing that works for me is sleep. It doesn’t take much of it; 4-5 hours will do it and I will feel
    refreshed so that I can at least sit up and be online here.

    I know when I have to do this because my temp drops, I feel very chilled and my eyes will begin to
    close.

    It is vital I have good food. Almost no matter what, I make sure there is high quality protein and
    brown rice on hand to eat.

    That’s it…food and sleep.

    • Cort Johnson
      Feb 26 - 6:09 pm

      Any particular ways to get to sleep? Can you just fall asleep OK?

      Protein and fresh green vegies help me at times. I can’t sleep sometimes without a bit of protein.

      • SanDiego#1
        Feb 28 - 10:30 am

        Would like to know more about the Nortryptilene. I have DD and Diabetes Insipidus. Would this cause a problem. I am just starting Desmopressin -not sure yet as had a reaction the first day I took it. Cort you suggested Xafaxin as a sub for Desmopressin. Have you any info on Desmopressin. I have stopped for now.

        Also sent you E-mail with no reply on this a few days ago.

        Info on this subject is great.

        San Diego

  12. ixchelkali
    Feb 26 - 6:00 pm

    I call it A.R.T.: Aggressive Rest Therapy. Rest, rest, rest, and more rest. Quiet, not talking, not listening to the radio, not reading, just rest. Keeping my mind and spirit calm and peaceful. Making sure to keep well hydrated, with high salt intake. Paying attention to my body and not pushing to get up just because I’m bored; giving my body as long as it needs to recover. It’s the only thing I’ve found that works for me.

    • Cort Johnson
      Feb 26 - 6:07 pm

      A.R.T – love the acronym…Thanks

  13. Dan Neuffer
    Feb 26 - 7:03 pm

    Once those crashes started, I found them difficult to slow. But I found that adding salt for a short period helped and of course rest.

    I also found cutting out all carbs and sugar in the evenings and eating a complex protein to be helpful, but only cottoned on to this towards the end of my illness.

    My favorite strategy, although not very medical was putting on my Star Trek DVD’s and pretending there was no crash. :) ,

    But of course that wasn’t tolerable when things were really bad which is when I holed myself up in bed.

    I did use some medication if the pain became unbearable, and to reduce the inflammation, but that didn’t always help.

    • Thomas van Gerven
      Feb 26 - 7:41 pm

      aint it so nice to see all the remastered Star trek epis coming out now :)

    • Cort Johnson
      Feb 26 - 7:49 pm

      Ha…I grew up on the old Star Trek episodes. My brother was just checking them out. He said they were great :)

      • Thomas van Gerven
        Feb 26 - 7:53 pm

        I really hatted the next gen series PC really damaged the brand ,but with new bluray remasters im enjoying them finally ,guess I just got numb to PC in the end :P

        and sorry for hijacking thread :P

    • Cort Johnson
      Feb 26 - 7:52 pm

      Here’s a comment from Mary on Facebook

      “As far as handling a crash, I can only ride it out, try to do at least some gentle motion, use mindfulness techniques, moist heat, and it really seems that olive oil-rich foods help some; I’m having hummus right now. Also eggs. And music and petting the cat (purr therapy).”

  14. SanDiego#1
    Feb 26 - 7:55 pm

    I think I just erased my Post. Anyway. What is Xafaxin? I know the Desmopressin caused my crash. I was doing well. Got report back I had Diabetes Insipidus. I know today I am feeling dehydrated. Within 2-3 hours after taking 1/2 the rec dosage- I was wired. Did not sleep for 18 hrs. CFIDS Dr. says it is a sleep problem. I don’t thinkso -as I have been sleeping until I took Desmopressin. I know it can be dangerous to take.Drin king Salt water/Glucoe tablet and Coconut water. CFIDS wants a phone conference.. A lot of symptoms now with the DI.

    Thanks for your or anyone else input. JUST SHOOT ME IF I DON’T SLEEP!!!!!!!

    San Diego

    • Cort Johnson
      Feb 26 - 8:10 pm

      Xafaxin is the great antibiotic that’s been real helpful in IBS and in some people with CFS. I know somebody who ended six years of gut misery with one 2 week treatment of Xafaxin….I’m preparing a page on the drug now….The only catch is that its expensive but in some people it really works.

      • Lordyj
        Feb 26 - 9:50 pm

        This sounds interesting, thanks so much for all your research, Cort.
        Cheers,
        Lordy

    • SanDiego#1
      Feb 28 - 10:34 am

      Cort- Sorry I wrote my post before I saw your answer. I will ask my Dr. about Xafaxin.
      Desmopressin is for DI. The Diarrhea comes out of nowhere, but definitely sets off a chain of events.

      San Diego

  15. Sipora
    Feb 26 - 8:03 pm

    SLEEP! Taking a shower, getting dressed, getting your mind off of feeling like crap….and Time.

    • Cort Johnson
      Feb 26 - 8:12 pm

      Sometimes I try to kind of inculcate little bits of good feelings by moving my body slightly. It sounds weird but I focus on that and it can help. I would never try to feel really good – that’s a setup for disappointment but going for feeling just a bit better can work to calm things down.

  16. Kathryn Williams
    Feb 26 - 8:12 pm

    I didn’t know about the issues with sleeping, although my own sleep cycles are all over the place. Until recently, I could always tell that my dreams were dreams, maybe that was a side-effect of poor REM sleep. Athough I’ve had some very “real” dreams lately, so maybe my condition is improving?

    I tend to be in the middle of a crash before I know it is happening, so I can’t say how if starts. I tend to wind down, rather than collapse. My recovery plan is just to rest in bed, ride out the muscle spasms, and stay as mentally distracted as possible to take my mind off the physical pain. Pain killers help a little, but not always. Staying calm is the most important thing for me, as it is very easy for me to get stressed over the things I can’t keep up with. Peppermint tea helps there, a bit.

    I can have several good days in a row, then crash out for weeks. My computer and tablet live by my bed, so that I can do a little as often as possible. I have recently started singing lessons, and the breathing exercises are helping to reduce to coughing fits that hit when the ME gets into my diaphragm and rib muscles. Swimming is good, too, although it is very easy to overdo it. While in the water I feel so comfortable that I lose track of how hard my muscles are working. Then, when I get out – oof!

    The thing that has helped me most is getting my friends on-side. They watch me, and remind me to take it easy. They also phone when I’m stuck in bed, catching me up on the latest gossip and giving me something to think about besides how rotten I feel. If I’m not up to phone calls, they will text or e-mail with encouraging messages, news, or just to say hi. Sometimes I can help them, even if it’s just by being there when they need to talk.

    These comments are great – you guys know your stuff! You’ve given me plenty to think about (and google) during this low patch. Thanks!

  17. Theresa Schroeder
    Feb 26 - 8:38 pm

    Agree with those who say rest, rest, rest. Even if I can’t sleep, if I just lie still, usually with heating pads on my legs and in a warm bed, it helps. Even in summer, when I crash i feel cold. My BP used to be very low but is now normal (perhaps my old age?). But when younger, the salt helped and lots of liquids.
    I’d like to know how some of the folks here still their thoughts, though. I would love to lie outdoors but can’t. so my mind races terribly. I do meditate but it’s not as easy as it used to be. When not completely out of it, also find email to friends and reading a help to keep my mind of the pain, etc. If I couldn’t read, I’d go totally bananas. When I’m really wiped out, I can’t do anything…just lie in a stupor. However, the good part is the crashes don’t seem to last as long.
    Melatonin also has helped with sleep. LDN didn’t, unfortunately, but i may give it another try. My main advice to anyone “new” with this is not to try to push on. Give up and rest!

    • Cort Johnson
      Feb 26 - 10:33 pm

      A couple of things with the thoughts…One thing that works for me sometimes is naming the type of thought or identifying the emotion associated with them. Another is for me to repeat to myself that I am at cause in matter and who I am is calmness – that can produce calmness.

  18. Guido den Broeder
    Feb 26 - 9:14 pm

    Because no treatment whatsoever is available, the fastest way is to shut down completely. It will take either 2-3 days or several months to return to previous levels.

    • Carol
      Feb 27 - 4:17 pm

      I so agree. xo

  19. Lordyj
    Feb 26 - 9:46 pm

    Thanks for raising the question, Cort.
    I’m sure it’s been covered above but my solution is a multi-faceted, :

    1. commit to resting, enjoy the down time, be a slob and watch videos on your ipad in the bath (that’s me in the bath and ipad on a chair!?) Bat any stresses away and settle into being a homebody.
    2. get up when I wake up, get the body vertical even if it’s just sitting up in a chair with really good back support. This will help my sleep later. (Even get some sunlight for just 20mins if I can sit outside – this communicates important info to our brains to support our biological sleep rhythms.)
    3. drag myself for a massage once I’m well enough to get myself there. Gets rid of the toxins that haven’t circulated out of my spine.
    4. back to strong sleep hygiene, no late nights and consistent wind downs

    5. for 2 days after feeling well be sure to be gradual and gentle with any activity.

    All the best everyone,
    Lordyj

  20. karen hart
    Feb 26 - 10:04 pm

    Using oxygen really HELPS a lot. Taking a bath with two cups of epsom salts helps .I wish someone could help get rid of that ‘buzzing,wired’ feeling I hate so much.
    My heart rate is ridiculous, hitting 160 several times a day and rarely going under 120 unless I lay down.
    This is a great line of inquiry.

    • Thomas van Gerven
      Feb 26 - 10:09 pm

      another old one was to add some hydrogen peroxide to bath water

      that lets skin absorb some oxygen in(so the theory went )

      one to research on thou don’t want ya getting burnt from too strong a dose

  21. Molly
    Feb 26 - 10:34 pm

    Thomas, were you referring to “seretonin”? I did not know about the drop of temp during stages 3 & 4? Does sleeping in a bed set at a normal body temp interfer with that natural drop of body temp and release of the chemical seretonin?

    • Thomas van Gerven
      Feb 26 - 10:44 pm

      ?? unsure where drop in body temp comes into it

      it takes the body to reach deep sleep rem 3 and 4 states to state the whole seretonum regulation

      Insomnia/Restless leg syndrome and other issues all add up to sleeping at night but not the full sleep cycle…ie we go into rem 1 2 states but don’t go into the deep rem 3 4

      seretonum/serotonin sorry about any spelling mistakes lol

      I do know there was some work done on lower body temps ,associated with CFS etc

      I think its all to do with the whole “triangle” of Pituatary/thyroid and the one im forgetting due to brain fog lol ..anyways theyre all outa whack as part of illness …hence so many issues with hyper hypo thyroid etc etc

      • SanDiego#1
        Feb 28 - 2:36 pm

        I used Serotonin 3-6 mg for at least 7 years along with 3 5HTP for sleep. Had to stop as my Heart began racing uncontrolled. CFID Dr. said was from both of these. Nothing helped me sleep and feel as good as the two of these together. I have DD and don’t know whether this contributed or not to it. One acts as a sleep inducer and the other an Antidepressant.
        I have tried to start back on either one-but Heart rac ing starts badly.

        San Diego

  22. Kathy
    Feb 26 - 11:48 pm

    This is great – thanks, Cort! I’ve had CFS for many years, and I have learned the signs of an impending crash. It starts for me with brain fog. I get really stupid and confused. If I stop and rest at brain fog I can limit the crash to a day or two. I guess it’s early detection that helps me the most, because once I’ve crashed, it’s rest, rest, rest – boring! Recently I had a crash of about 6 weeks because, well, I was on vacation! Maybe the crash lasted so long because I kept prematurely assuming it was over and I was just lazy. I really like Lordyj ‘s tip of taking it easy for a couple of days post-crash. Maybe that will help the next time I overdo it, which is inevitable!.

    I usually sleep well now, but in the early days I often dreamed that I was tired, very tired. To quiet my mind I watch something lame, like cooking shows. I try to focus on the ‘action’. It puts me to sleep.

    • Cort Johnson
      Feb 26 - 11:55 pm

      Recognizing early signs of an impending crash is a great way to limit crashes. I think for me it would be a kind of tightening of muscles and shortening of breathe when I go walking.

      Jeez, what crash producers vacations are…Nothing provokes a crash more quickly than a vacation for me. Its mainly all the walking and the desire to push through the pain because I went on vacation to do things..not sit around. Yes, what superb crash producers vacations are :)….

  23. Suella
    Feb 27 - 12:23 am

    I’m not sure I would describe what happens to me as a crash. Mine is more like a relapse and I will lose many months of careful babystep improvement. I have moderate ME/CFS.

    I seem to go into an adrenaline fired mode which means that I can no longer feel what my body is telling me, so am apt to push through and continue doing just what I shouldn’t. I’m guessing this may some sort of brain disconnect, but not like my normal brain fog.

    My symptoms seem to be a sore throat and lymph glands which I only have when too tired on a very odd occasion, and then fatigue.

    To recover I need to simply be patient and very careful for some weeks and often months before I can recognize that I am back to the level I was pre-relapse. I treble my flat rests and pre-emptive rest hour, as well as reduce the amount and frequency of higher activity events in my days and weeks. Of course the definition of higher activity changes radically as well.

    Recently something seems to have changed in my metabolism, and I’m able to do a bit more as well as losing a bit of weight. All I can think of is the introduction of a home-made soya yogurt which will have introduced a pro-biotic into my gut. It seems to have taken some months for this to kick in, so not an immediate improment.

    Vacations? I can always do a little more then, and credit it to the reduction of stress in my normal life style. I can’t always identify what the home-town stress is, so can’t necessarily reduce it. Frustrating.

  24. Marco
    Feb 27 - 2:27 am

    The best way for me to recover from a crash is to avoid them in the first place.

    Easier said than done?

    What seems to work for me, if I’m expecting to be doing anything strenuous or expecting high temperatures (both of which regularly trigger a crash for me) is to pre-dose with n-acetylcysteine (NAC).

    Why this might work for me is discussed in my ‘Glutamate’ blog.

    I should add that I’m probably more physically capable than most so ‘your mileage may vary’.

  25. Joyce
    Feb 27 - 3:12 am

    There is first the question of what consitutes a crash.
    I crash every day. Have to admit. If, as I begin to tire,
    I respond by getting into bed, and sleeping from 1 – 4 hrs,
    then it is over with for a few hrs or until the evening down time..

    I have trouble noticing the early signs, or perhaps ignoring the early signs.
    I want to do more, common with all of us.
    I am trying to do the following to prevent the mini-crashes:
    After up for 30 to 60 min – lie down, perhaps for 20min or longer.
    I find that when I am up, doing something – seated or walking about -
    I am under-aware of how I am doing. when I then lie down, and cease activity, I realise
    I am more tired than I thought. So I then try to rest until I feel a bit better.
    That means many short rests a day. I sometimes have life that interferes with that.

    And then there are the bigger crashes -I am just emerging from one now.
    This one was caused by stress (car accident, rear ended with whiplash and concussion)
    I am 2 months into it. I have increased anxiety, insomnia, feel weak at times,
    headache and neck pain from the whiplash. And my O.H. is worse – BP standing of
    70-80/50-60 – And always symptomatic when standing, walking – which then makes me
    worse in general, wears me out.

    What has helped for this bigger crash: pacing, spending as much time in bed as I feel that I need.
    I have some days when I have slept for 8 hrs during the day and another 10 at night.
    I get as much sleep as I can. I do not feel that I oversleep.
    I use a My Zeo head band to monitor my sleep – it tells me how much sleep and time in each stage.
    This is very helpful. It helps me plan my day. If I get 4.5 hrs of sleep at night I know to plan extra
    time napping – perhaps 2 naps a day and another 3 hrs of sleep.

    the other major help with the low BP on standing is getting IV fluids. Right now it is 1 – 2 Liters three times a week. Initally I felt that going to the infusion center, spending hrs there did not result in any net gain from the fluids. Now it is paying off – I am in my third week of IV Saline. I stay more hydrated for a couple days (at first it was only until the next morning) and can be more upright and more active. I continue to find it wearing to go in for the fluids. It would be SO much easier to do at home. I can start my own IV, but do not have a way to get the saline and equipment to do it at home, or a doctor who supports it. It takes a total of 5 hrs (4 at the place for me to get 1 L of NS) – I get it at a rate of 1 1/2 hrs per Liter. I believe that is more effective than if I got the Liter faster.

    At my worst I am, pretty much, in bed all day. I always eat, snack, I never skip meals. Food
    definitely helps me feel better. I try to keep to good nutrition but eat either way.

    When I begin to come out of the crash I try to do some muscle strengthening exercizes – floor.
    and walk 1-2 blocks, or what ever I can handle. Exercize of both kinds helps me get more deep sleep.

    I have trouble with patience.– for all those hrs when I am not sleeping and not well enough to do
    much of anything. All those hrs when too tired to watch TV, use the computer or use the phone.
    I find I can not be engaged, and cant handle visual stimulation. So, I listen to books on tap or podcasts
    on my computer, or classical music. and I engage in a bit of self talk- let go, be in present moment.
    appreciate that I am alive, I will have some experience that is better in the future, etc. and appreciate anything
    I can – having shelter, looking at the sky, etc.

    My greatest danger time is the first couple days when I feel better after a few weeks or more in a crash. It is so hard to hold back. But I think it is critical to try restrain oneself and do less than the max possible.

    Good conversation.
    Sorry I went on so long!

    Joyce

  26. Kelly
    Feb 27 - 4:45 am

    I am very fortunate in that my last big crash was June 2012. It was the one that started my sickness absence from work. I had my diagnosis in May 2012 and seemed to go downhill very quickly. It’s hard to remember what I did, but there was plenty of resting in a horizontal position, just having a sit down was not helpful.
    I alternated rest with research on the internet and came up with an action plan.

    I started to take quite a few supplements; again, I consider myself very fortunate because my children are grown and I had the option of spending this money on myself. I paced half an hour of low level activity with one hour of rest, whether I felt like I needed to rest or not. I learned to do nothing! Very difficult when I have spent my life juggling three or four activities throughout the day, every day!!

    By September 2012, when I first visited the CFS/ME Specialist Clinic, they told me that there was very little information that they could give me to help as I had found most of it out for myself! That was a nice surprise as I had carefully filtered the wealth of information on the internet and gone with what I felt best suited me. The Clinic asked me to log my daily activities in fifteen minute segments, categorised as rest, sleep, low demand, medium demand and high demand. I know lots of people would hate this kind of thing but it suited my brain very well. To reduce something to numbers and then monitor it is what I do!!! I took the sheet that I was given to colour in with different coloured pens according to category and created a spreadsheet that coloured it in for me. I assigned every 15 minutes of sleep 2 points, rest was 1 point, low demand was -1 point, medium demand was -2 points and high demand was -3 points. I have a fitbit which, amongst other things, I use to record how long I have slept. I then add up the points ‘earned’ from that sleep and I make sure that as the day goes on, I do not hit a negative number.

    I know that this has been easier for me to do than it might be for others to replicate because I have had no other responsibilities for my money or my time. Also I am a very stubborn person – once I have made up my mind to do something, I will achieve it. (Definitely an irritant of the circumstances that got me ill in the first place but now a positive influence in me getting better.)

    However, the big test is yet to come! I am back to work on Monday, beginning a phased return to work, with approximately one eighth of my previous responsibilities. I’m really looking forward to it!

    • Cort Johnson
      Feb 27 - 9:00 am

      Good luck Kelly! Glad you could turn your stubbornness in the right direction :)

    • Kathy
      Feb 27 - 1:41 pm

      Kelly,
      Your point system is fascinating. It’s so mathematical! Do you know if everybody uses the same numbers? Do you rack up points for sleeping at night, too? I’m so curious because I cannot seem to find my ‘energy envelope’, except that anything ‘hard’ always hurts me!

      Kathy

      • Kelly
        Mar 02 - 5:02 am

        Hi Kathy
        I haven’t met anyone else (at least in real life) with CFS/ME other than my eldest son! So there hasn’t been much of an opportunity to discuss methods or strategies let alone to find someone else who uses an activity log the way that I do.
        I use the points racked up during the sleep at night to determine how active I am that day. I top up the points with rest periods but I rarely sleep during the day.
        I chose the values as a starting point with the view to tweaking them if needed, but they seem to work so I haven’t changed them.
        What has changed though is how I categorise the energy expended during activities. Walking to the shop used to be a 2 (medium demand) for every fifteen minues because that’s how it felt. Now walking to the shop is a 1 (low demand) because I am stronger and it feels ‘normal’ when I do it.
        I would be willing to email you a copy of my activity log if we can figure out how to get in touch without broadcasting my personal email address to the whole world xx

        • Kathy
          Mar 05 - 2:04 pm

          Thanks, Kelly! I think I can come up with some kind of log. I found your method interesting because it’s something I haven’t heard. You answere my question about sleep.

          I’m sorry your son has it, too.

          Cort might be able to help us share e-mail, but it might be against the rules of the blog.

          Thanks again.

          Kathy

  27. Rosie
    Feb 27 - 3:04 pm

    Nothing is working. I’m 19 years into this ‘latest’ crash and it’s just getting worse…

    I don’t think anything will work now short of real immune modulation.

  28. Carol
    Feb 27 - 4:19 pm

    Would love to have more info from people who say oxygen helps. Does your primary care doc prescribe oxygen and if so, for what condition exactly? And how is the oxygen supplied please? Many thanks.

    • Josie
      Mar 01 - 7:36 am

      Same here. I ask this too because when I was in hospital over another matter, I was given oxygen for a time and I felt the best I’d ever felt the following day!!! But I can’t see a dr actually prescribing oxygen so how can you access it?? Thanks.

      Josie

      • Jill
        Mar 01 - 4:09 pm

        After reading here about the benefits of oxygen I decided to do a bit more research! It turns out that there is an oxygen therapy centre about 40 minutes drive from my home in Northern Ireland. It was set up initially for the treatment of M.S. patients and is run by a charity. They have treated many patients with M.E/ CFS who have reportedly benefited greatly. It is called Hyperbaric Oxygen Therapy http://www.oxygentherapycentre.co.uk I have been in touch with them and have decided to give it a go!
        I have also made an appointment with my Dr. to request Saline IV , that should be an interesting conversation! Nothing ventured, nothing gained!
        Thanks everyone for their input here and thank you Cort!

        • Pat K
          Mar 01 - 8:37 pm

          When I initially began with oxygen, the physician suggested 4 hours a day at a specified flow rate from standard oxygen concentrator rented for several weeks. It felt as if someone was lifting a cloud off of my brain, brain fog lifting.

          I did get a SPECT scan of my brain and parts of my brain are hypoxic from a chemical exposure at work. Diagnosed with toxic, hypoxic encephalopathy. Also deal with pulmonary, sinus and immune dysfunction from the injury. I developed serious bone infections unresponsive to antibiotics and several surgeries. I subsequently went through in hospital high pressure “hyperbaric oxygen” treatments. Initially the exhaustion was profound, but infections gradually began to respond, and the infections were halted. Brain felt immensely better. The hyperbaric specialist explained that sometimes after chemical exposure, there are idling neurons in the brain, and with repeat hyperbaric (every day), the body forms new capillaries that cause these neurons to fire. I have read other articles on hyperbaric oxygen that describe a sevenfold increase in body stem cells. May be that helps with healing as well.

          After a few months, bone and muscle aching fatgue requiring bed rest returned. This time, the portable mild pressure hyperbaric oxygen units came out, and my physician had 2 units. Started with 40 treatments. There is a week of fatigue as your body is dealing with it, but then the brain improves immensly, and muscle aches are relieved. Then I was able to get relief with 20. Now it takes several every few months. I now have a unit at home.

          It was also found that I desaturate during sleep and I am on CPAP machine with low flow oxygen at night. I also need oxygen to fly and if I am at elevations above 4,000 ft. I use a light weight portable oxygen concentrator for these times. They are battery powered, can be powered from your car, etc. Some are pulse flow, others also have continuous flow option, which is helpful if you also have to use CPAP machine which requires continuous flow.

          There are some physicians who are working with cerebral palsy patients, autistic patients, post stroke patients, etc. who are trying mild low pressure hyperbaric oxygen. I know one physician treating autistic children who has rented the units to parents for a month to see if the patient benefits. The units are expensive, and you do need to be trained in safety in its operation, and need another individual with you while you are in the chamber. I am 15 minutes getting to pressure, an hour at pressure, and 15 minutes to depresurize. An oxygen concentrator.supplies oxygen during the treatment interval.

          Writing all this because oxygen is delivered in different ways, pressure, etc. and has to be tailored to the specific need being addressed. Finding a good knowledgable physician is important.

          • Jill
            Mar 02 - 5:24 am

            Thanks for your input which was very helpful. I hope your health is continuing to improve.
            I fully take on board that it is very important to find a good, knowledgable physician. Unfortunately I am still looking! :-)
            Joking aside, it is also essential to look at the risks involved versus the reported benefits of this therapy. Obviously it is extremely important also to check that the treatment centre adhere to strict guidelines and safety procedures. I am aware that the lack of randomised controlled trials make it difficult to assess the efficacy of Hyperbalic oxygen in many Illnesses.Taking all this into consideration including the expense, the effort of travelling to the centre and the likely risk of the ‘crash’ I will most probably experience afterwards, I still think it is worth trying it. I may change my opinion when I get there! Jill

      • Harriet Zimmerman
        Jun 30 - 7:08 pm

        Oxygen can indeed be prescribed for at home use. Years ago Dr. Cheney prescribed it for his patients and a tank was delivered to my home as I needed it.

        Never felt any better using it, but have had grand results from IV saline. Ah, CFS.

        Harriet

  29. Melanie
    Feb 27 - 7:03 pm

    A liter or two of IV fluids helps me a lot – except I can’t get a doctor to prescribe it :-(

    I do increase my fluids and salt intake but it’s just not the same as IV fluids. However, if I have any type of procedure or opportunity to get an IV, I insist on the full liter. Makes a huge difference.

    So, I echo Dan Neuffer – except for me it’s LOST instead of Star Trek :-) And a lot of patience to wait it out. And some nice soft Hawaiian music (Keali’i Reichel).

  30. diane lindeman
    Feb 27 - 7:33 pm

    I totally agree with whomever said ART(aggressive rest therapy). Diane

  31. Tania Selth
    Feb 27 - 7:42 pm

    “I use a My Zeo head band to monitor my sleep – it tells me how much sleep and time in each stage.
    This is very helpful. It helps me plan my day. If I get 4.5 hrs of sleep at night I know to plan extra
    time napping – perhaps 2 naps a day and another 3 hrs of sleep. ”

    To the poster who I took that quote from.. thanks I didnt know one could even get such a thing and can see how that could be very helpful
    …………………

    Crash.. My crashes can happen in many different ways. I also get POTS crashes and non POTS crashes (which are more like ME crash with post exertional PENE. I’ll focus on non POTS crashes here (thou too many POTS crashes Ive found can lead to crashes of the other kind). I dont get to crash with the other ME stuff often as usually the POTS gets to me first, rendering me completely unable to stand and hence prevents me from overdoing things enough to flare up the ME in other non potsy kind of ways.

    But anyway a typical ME crash for me often has a warning sign of itchiness/irritation in my throat which will later on develop soreness (while still in the warning stage). I also can start getting feverish (not just feeling like Im feverish but some times a thermometer shows it too) . I start feeling malaised with that yucky all over feel with also feeling sick. With the feeling feverish and feeling unwell.. irritability usually sets in for me at that point and I’ll start getting snappy at people. Feeling weak and exhaustion sets in for me at this point also an ear ache can happen at this point. At this point the crash is still avertable if I stop and rest, rest REST but at this point I may need 1-3 weeks rest.

    If Im unable to rest for some reason (usually its something to do with gov departments which stop me from being able to) the crash then takes full hold. At this point I can then also go into a cough with an irritated feeling chest (my immune system has run right down). This cough may last weeks, Ive only just got over the cough from a crash.. 4+ weeks of mild chronic cough. Doctor ended up giving me an inhaler for it. Once crashed, my insomina completely shifts and moves from insomina into the opposite hypersomnia. At this point Im in “unknown land” and its completely unpredictable for me how long this crash (rather then just “crashing”) state may continue for (Im currently in a crash like this which may of completely changed my “base line” :( . It may be a couple of weeks to recover from the crash or it may be years. i hate it as the unknown nature of this at this point.

    As far as how to treat “crashing” or a crash. Ive found NOTHING except rest helps. This will mean also NO STRESS. Minimum people in my home etc and ART (aggressive rest therapy). They are the only things which enable me to start to pick up my base line level again and take time if Ive crashed.

  32. Carlos
    Feb 27 - 8:10 pm

    I am currently suffering a crash indeed, I have to say that the last year has been quite good for my health, but unfortunately it has not been the case in the last month, the reason: EBV I just suffered a reactivation of my mononucleosis, and the IgM of EBV came positive in the blood work.

    What will I do with this crash? Well, because is viral, I will take Labolife 2LEBV which was the homeopathy remedy that worked for me in the past for lowering the titer of EBV.
    Besides labolife I wil take Reishi Hdt, Cordyceps Hdy, and Cola de Pavo Hdt which helps increasing NK cells and fight viral and bacterial infections. Plus I will take rest most of the time.

    Cheers

    C.

  33. Mary Anne
    Feb 27 - 9:36 pm

    I’ve learned so much from reading all your posts and want to thank everyone for sharing their stories, it’s been really helpful and gives me hope for possibilities. I am 12-1/2 years into ME and still not certain what is the difference between a relapse and a crash? or are they the same. I had to retire early (50) as I pushed myself for two years past the point of being able to function at work, after a severe bout of bronchitis.

    Last summer and autumn, I was able to get up early each morning and go with my husband for a short drive along the waterfront, then a cup of tea at a cafe. I started to feel so happy, thinking I was cured because I could out every day and mingle with people (something I hadn’t done in years). So I began to ignore the bed rest and push through the fatigue, the light-headedness, the vertigo, until finally I started to get the symptoms of air hunger, very scary feeling that is.

    Two months ago, I woke with a high fever, sore throat and that wired feeling and could barely get to the bathroom, walking upstairs was a nightmare. It felt just like the first months of ME all over again. I am back to bed rest with heating pads to keep me warm, lots of salt intake, trying to eat well when I can. For entertainment I read on my e-reader (large print as I also suffer from vertigo). It’s very disheartening, but I probably only have myself to blame, as I didn’t listen to my body and take the necessary rest when I should have. I am ever hopeful to pull out of this relapse/crash and be able to join the outside world again soon, even for a short while.

    So, I’m not a good example of how to manage your ME but hopefully I can learn from others here. I am going to print off some of your suggestions and try to take them to heart. Thanks again so much for all that you do, Cort, and to your readers for sharing their stories. It’s given me hope.

  34. Pat K
    Feb 28 - 12:26 am

    My severe chronic fatigue onset was from toxic chemical exposure at work. My brain SPECT scan shows hypoxic areas in my brain. My NK cell activity is low. I take Amantadine 100 mg every morning to help with energy to get going. MS patients also use this. I sleep with CPAP and oxygen. Morning headaches stopped with this. I take B12 injection once a month. When I am in a severe muscle burning crash, I use a mild hyperbaric oxygen chamber prescribed by my physician. My husband was trained to help me use it and keep watch when I am in it for an hour at pressure. It takes several treatments before you feel relief of the severe muscle pain and foggy brain. It dies not cure it. I do get a few months of relief and then have to repeat. You know the pain and loss of sleep from chronic fatigue are disabling, so to get relief of pain without pain meds is a blessing. I did have to learn to modify activity levels. Once the muscle pain starts, it is already too late to stop what you are doing. I now use a mobility scooter that fits in the trunk so I can be with family. I bought it out of pocket. It helped a lot. I can now go shopping with family. I went back with family to all the places where they previously had to park me on a bench because I was too tired, and used my scooter to enjoy time with them. I was able to do 6 miles in my scooter. That would have been imposible without it. Finding ways to cope, and get back your life has been a struggle. A physical therapist and friend was encouraging me to get the scooter and I am so glad I did.

  35. Alice
    Feb 28 - 8:24 am

    I agree with rest, rest and more rest – Aggressive Rest Therapy – lying down and doing as little as possible for as long as it takes to regain some sense of balance/equilibrium. Take extra meds (I take Sinequan) if you need them at night. No stressing and no pushing yourself. You have to give your body time to heal.

  36. Sunshine
    Feb 28 - 11:57 am

    Cause of crash: exertion beyond my capacity, either mental, or physical (straining brain for a long time, or raising heart rate past my max)

    Crash: short term memory wiped out, difficult to lift limbs, diarrhea, soreness all over body, swollen lymph nodes, heart rate elevated 10-15 beats above normal resting, nausea, extreme sensitivity to light and sound (can’t control fine muscles to focus light out or sensory input to focus thoughts), increased anxiety/fear (can’t control stress hormones, can’t take care of self so body thinks it’s in constant danger over small things), poor coordination and frequent dropping of things, falling, near-fainting, and injuries, terrible sleep quality, pain increase

    Duration of crash without intervention: 3 wks – 2 months

    Methods of recovery [feel significantly better after each of these tips]:
    1. electrolyte drinks (coconut water is best), 4-5/day
    2. high sodium first thing in day, 4-5,000mg/day
    3. keep Heart Rate monitor on, do nothing above my max even if it is really inconvenient, since HR goes way up with simply walking – accomplish most things laying down or by crawling on floor, no lifting or raising arms above head
    4. spend 1-2 days on solid bed rest, no sounds, no lights, darkened room, extra cushion to help muscles relax and not have to support me at all, no talking, eyes must be closed (focusing eyes drains me the fastest), only move for basics – no/drastically minimized contact with others since that immediately results in guilt and an instinct to care for their needs rather than my own
    5. take in high antioxidant/nutrient foods in whatever way possible to bipass nausea – take megavitamin, vibrant color “superfoods” only, make sure to get all supplements in like magnesium D-Ribose and Ubiquinol/Co-Q10, cut back on immune modulators or other harsh meds if can’t keep them down, be sure to get enough carbs and protein
    6. practice stress management, either some meditation on health coming to each part of body (breathe in health, breathe out disease) if can manage to focus, or if not simply focus on deep breathing at least 5 min. 3x/day
    7. extra meds to help sleep beyond usual sleeping medications, anti-anxiety Rxs or herbal supplement or anything else that calms the system helps the best, to shut out extra sensory information and agitation that keeps sleep quality very poor so not waking up every 10 minutes all night

    Duration of crash using above method: 1-2 days

    Seriously, it works, but you have to be strict about it, and sometimes guilt or frustration get in the way and I “cheat” a little, resulting in extra days of illness for me for each need I neglect in the beginning.

    • Sunshine
      Feb 28 - 12:01 pm

      Forgot one more:
      8. if lactic acid build up causes pain/Fibro symptoms/swelling, gentle yoga/stretching in bed until loosened up and then pain releases – lactic acid moves on finally and body feels a million times better. Be patient, stretching may take 30min-1hr to move from severe pain to wonderful, go slow, stop when you need a rest and get back to it later. I do it with eyes closed and resting arms etc. on pillows so not exerting muscles basically at all, may take some practice to learn how to do this, but worth it.

  37. poetinsf
    Feb 28 - 2:24 pm

    I decided over the years that PEM works much like traffic congestion. The traffic congestion is hard to control once it happens, so it is best avoided. So they install meters on the freeway onramp to pace the traffic, the same way we pace our activities to avoid PEM.

    For Internet congestion, there is something called exponential back-off and slow start. It requires you cut back the injection of traffic repeatedly by half till the congestion stabilizes, and then slowly increase the injection by small amount. Applied to PEM, it means cutting back your activities drastically till it doesn’t get any worse, and then slowly increase the activity.

    If you can afford, it’s probably best to stop all activities till you recover. But PEM takes a finite amount time to resolve no matter what you do (or not do) to recover from it, and I get deconditioned if I don’t do anything for several days. And then it’ll take another several days for me to get back to where I was once I recover from PEM. So, instead of completely resting, I stay active enough at the level that doesn’t make PEM worse.

  38. sunforall
    Mar 01 - 4:19 am

    The brief version:
    - Therapies that impact mitochondria. These include a combination of oral supplements and intramuscular injections, with the following highlighted:
    AMP, NADH and B Complex as an IM injection (done as a self-injection).
    Glutathione as a separate IM injection.
    Creatine, D-Ribose, Acetyl-l-carnitine and COQ10 as oral supplements.
    - Oxygen. One of the therapies that seems to target and bring genuine help to many of my PEM and even every day ME symptoms.
    - The above is where I start with PEM. I’ll also consider immune modulating supplements as well as other approaches, depending on the level of results I get with the above therapies and what symptoms seem the most pressing.

  39. Curiosity
    Mar 01 - 3:11 pm

    I’ve tried a lot of things (supplements, etc.), but the only thing I’ve found that has actually helped noticeably (aside from lots and lots of complete bed rest) is drinking TONS of water when I start to feel those first inklings that I’ve overdone it (sweating, feeling run down, exhaustion, etc.). It seems like if I catch it early enough, I can minimize the crash a little from what it would otherwise be. I naturally get crazy thirsty at that time anyway, so I guess my body knows what it’s doing.

  40. Jeffrey Jones
    Mar 03 - 4:06 pm

    Regarding the physical path to recovery (the easiest one any of us can address first):

    Definitely smaller meals, and more of them, much easier for a body low in energy to process. “Meal” isn’t even the word… More like “grazing”… As long as what you’re grazing on includes fresh raw, organic fruits + veggies, nuts, seeds, gluten-free snacks (I like “Glutino” Pretzel twists), and greens. I like Greek yogurt, but limit other dairy (increases mucus production).

    When I can’t shop (to keep fresh things in the fridge), I keep frozen veggies, berries, etc. in freezer… Stay away from canned foods (BPA). When it comes to convenient, pre-packaged foods, I also keep on hand good supply of low-glycemic, nutritional, natural meal bars, snack bars, and smoothee mixes. Very important to get NUTRITIOUS, REAL foods without any artificial colors, flavors, sweeteners, chemicals, or preservatives.

    Drink plenty of hydrating fluids. NOT sugary or diet drinks… NOT Powerade or Energy drinks… NOT bottled, canned, or frozen concentrate juices… and STAY AWAY from Caffeine as much as possible. I drink only filtered water at home. To me, Bottled water is a miracle of modern society that should be used primarily for hurricane relief. I do make teas or mix natural hydration powder for electrolytes.

    Needless to say… I don’t use any tobacco products… Quickest way to poison yourself.

    Finally, I incorporate nutritional supplements into my day along with whatever foods I’m eating. Not unlike prescription drug usage, finding the right combination of vitamins, minerals, amino acids, and herbal supplements is a trial and error process. All human bodies need the same basic nutrients, but in what amounts, and which combinations, will be different for most of us. Find an advocate or a nutritional advisor. Research online if you’re up to it. Basically, not feeding the body, or consuming empty calories is going to Hinder, not Help, recovery.

    • Cort Johnson
      Mar 03 - 4:09 pm

      Agree on the smaller meals…that’s very important…what a hit to the system a large meal gives..

  41. Nancy
    Mar 03 - 5:42 pm

    This is my first time on your website. I feel so much less alone! I have had ME for decades…had to stop teaching when I was only 52. I know no one else who has this awful disease. Thanks for being there!

    • Cort Johnson
      Mar 03 - 6:10 pm

      Isolation is the norm in our locales, I think, but we’re abundant on the internet :)

  42. Bernice Pasquier
    Mar 05 - 3:49 am

    Really the only thing to do for me is go to bed and stay there, above all if I have dizzinesss problems. After a week I am usually better. If I dont ‘do this I am up for a minimum 3 weeks inability to live a ‘normal ‘ reduced life. i.e. not walk 100m, not read other than comics, no noise or light etc.
    NB 3-4 years later I had diverticular problems and since having a laparoscopic sigmoidectomy I have been well except for fatigue much more intense than any contemporary friends. Have to limit and budget any outings.

  43. Bernice Pasquier
    Mar 05 - 3:57 am

    I would like to add.
    My ME was pretty clearly post an unidentified viral infection brought home from the Far East and Australia by my son. He, after a week of anorexie and dizziness came home and ran a temperature of 42.7° for 2 days. Then recovered over another 3 days and left home.
    I then began to have flu-like symptoms plus all the others that he had had except temperature, was very weak and unable to walk 10m. I recovered and then repeated the series three times and was never really well again.
    At the time it seemed clear to me that he had successfully (but dangerously) fought the bug, whereas I hadn’t. This severe state with double vision, vertigo and a lot of bed lasted 3 years.

  44. Enid
    Mar 07 - 2:32 pm

    Gee whiskers Cort I wish I were able to pinpoint having followed and applied the various supplements/regimes from those who know (eg. Rich) – no simple answer and no simple full recovery until the underlying pathologies are fully known and understood.

  45. Enid
    Mar 07 - 2:41 pm

    You picked up immune problems – KDM knows it so – Mella/Fluge confirmed. So why/what clobbered in the first place.

  46. Cath
    Mar 23 - 3:24 am

    rest and rest is what I do. like everyone else. loads of water.

    as to sleep tho – i am diff to others.. i sleep excessively. sleep study says i dont go to REM phase. but i am lights out and someone is home…

  47. Barbara
    May 01 - 7:37 pm

    Has anyone else tried Yoga Nidra?

    Involves lying flat listening to a guided meditation cd ‘moving your awareness around your body’. Sounds duff but *works*.

    Far more effective than resting lying flat with eyes closed feeling like I might die and worried that I won’t.

    Find that it re-regulates my sleep pattern – which always gets knocked out of sync.

  48. Eugene
    Sep 09 - 3:39 am

    I find resting, taking lechithin granules, doing as little as possible but watching TV and playing games/surfing the net on my laptop helps because it takes my mind off things. Obviously the games have to be simple/slow paced because of the brain fog I’ve got! If you think it’s only temporary that can help too.

  49. Gavin
    Oct 05 - 4:50 am

    Going through a bad crash right now. I’ve collapsed twice – second time was taken to hospital and couldn’t wee for 14 hours – I think muscle exhaustion. God its so aggravating going through a crash again and deteriorating despite doing what I can.
    I really want a good scream, kicking, crazy tantrum but I don’t have the energy so thought I’d pop in and complain. :) I’m not sure if I’m gonna make it out of this crash.

  50. Arn
    Dec 26 - 4:02 am

    Used to have awful crashes up to 20 hours a day sleep, lost a large amount of weight, just awful symptoms. The remaining 4 hours I may have well stayed asleep. Only thing that worked for me … and this will sound insane, but I was treated for Lyme disease. I’m now recovering from a foot injury because of a 30km hike, a mountain climb, and exerting too much at the gym – took only 6 weeks from bedridden to mountain summit.

    Lyme. Had never heard of it until I met the right doctor. Saved my life, my marriage, my house and assets, and so many other symptoms have disappeared or being eradicted. Sorry to offend anyone, I’m not making light of CFS (my original diagnosis for 9 years) – just giving you my story. Take care all.

    • Cort Johnson
      Dec 26 - 9:41 am

      Thanks Arn and congratulations….What treatment did you get?

  51. Linda
    May 16 - 7:42 am

    yup, do nothing…..and stop reading all these chronic fatigue blogs! (kidding, sort of)

    • Cort Johnson
      May 16 - 8:31 am

      :)

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