The 3 times my ME/CFS almost completely vanished...

[beaverfury]

I've had three perfect days in four years, two involving sleep deprivation, like others above.

Since taking Abx for lyme for the last 5 months I have had 3 periods of good health each lasting about a week. Almost back to pre illness levels. I had a week where my body actually unwound and my muscles could relax for the first time in these years.
This is what I desire more than anything. I could handle the periods of pain and exhaustion better if I had perfectly good periods in between where my body relaxed and recuperated.
Having a relaxed body seems essential to really enjoying anything. Listening to music, being with friends, sex, or just having a cup of tea, sitting in a chair and going...Aahh!

 

[taniaaust1]

I remember when I first started waking up not feeling at all tired, it sure was a miracle to me. I went throu periods of that (nowdays I woke up generally feeling not tired at all but still cant do things due to the severe post exertional flares). When I first started to wake up not tried at all at times, I put iit down to something different going on during the night re brain waves maybe????

I did have one day since I've had this illness full time, in which I suddenly was "feeling healthy", it made me aware that I'd actually forgotten till then, what it had been like to feel healthy as I'd been sick for so long, forgotten what a healthy person feels like, like as if something in my body had switched on or off something (the shift happened very suddenly) but then later on I was back to normal again. So I do think that our bodies may be producing something or too little of something (or have something in our body which is doing that), which is making us sick,.

Things like this make those deconditioning ideas out there very stupid.

 

[knackers323]

Yes I think these spontaneous remission episodes show that a cure is possible and that it is something in the way our body is reacting, doing or not doing that makes us feel unwell. Autoimmune?

 

[Antares in NYC]

Yes I think these spontaneous remission episodes show that a cure is possible and that it is something in the way our body is reacting, doing or not doing that makes us feel unwell. Autoimmune?

I couldn't agree more. Those few fleeting days when my CFS symptoms went away gave me hopes that this is reversible. It made me believe that this can go away. I was amazed that my cognitive issues and extreme fatigue were basically gone, and my memory and attention span were back.

I think the autoimmune theory is getting traction, but something tells me there's a trigger (virus, pathogen, mold, etc) that knocks the immune system out of whack.

 

[knackers323]

Yep, and what is it thats happening at these times when people feel better for short periods or even long remissions? Does this happen with other autoimmune diseases? If it does then that is a good clue. If not then maybe it doesn't look so good.

 

[justy]

I always feel it is dangerous to believe oneself 'cured' during a remmission, As i said above i had a remmission for about 7 years. I really thought i had seen the back of this hell forever - but it is back and much worse than before. I don't think i can ever 'get rid of it' but i do believe i can get back to a remmission state again, where i dont feel ill but just have reduced stamina and more frequent illnessess than others. That would be great!

As to the sleep issue i have to disagree - any sleep deprivation - even one night sets me back for weeks. I feel best if i regularly sleep 9-10hrs a night and preferably between 11pm and 9am. Last Friday i stayed awake too late and didnt get to sleep till 3am (i get horribly wired if im not asleep by 12 and then i will be awake and feeling like s*** for hours) I was then awake at 9am, giving me only 6 hours sleep and i have been really wiped out ever since. I spent the whole next day in sunglasses and felt like i had been on a 3 day bender in Las Vegas. All the pain with none of the pleasure!

Justy.

 

[ukxmrv]

i often joke about being put in an induced coma but sometimes i wonder if being knocked out for a week and letting our little brains rest would make a big difference??
book in for a week every few months maybe?? i think early in the illness if one can rest alot it makes a big difference??

A Cardilogist at Charing X hospital in London did this, Heaps. I met some of his patients and they were all worse off after the treatment.

There were deaths at earlier attempt on Psych patients in Australia and another London Hospital from "sleep" therapy. Nixon, in addition to his other ideas was admitting ME patients to a private ward and then knocking them out with drugs for a week.

This link mentions some of his other "work". He did try to talk me into the sleep therapy when I saw him at Charing X Hospital

http://www.duncancampbell.org/content/preying-hope

The Australian deaths are mentioned here

http://en.wikipedia.org/wiki/Deep_sleep_therapy

and one of the earlier UK ones

http://www.dailymail.co.uk/femail/a...p-months-Londons-Royal-Waterloo-Hospital.html

 

[heapsreal]

A Cardilogist at Charing X hospital in London did this, Heaps. I met some of his patients and they were all worse off after the treatment.

There were deaths at earlier attempt on Psych patients in Australia and another London Hospital from "sleep" therapy. Nixon, in addition to his other ideas was admitting ME patients to a private ward and then knocking them out with drugs for a week.

This link mentions some of his other "work". He did try to talk me into the sleep therapy when I saw him at Charing X Hospital

http://www.duncancampbell.org/content/preying-hope

The Australian deaths are mentioned here

http://en.wikipedia.org/wiki/Deep_sleep_therapy

and one of the earlier UK ones

http://www.dailymail.co.uk/femail/a...p-months-Londons-Royal-Waterloo-Hospital.html

wow interesting.
those stories dont sound like they were very regulated with psychobabblers using massive doses of sedative higher then what is regularly used. Doesnt sound like a specialist anaesthesist was used either but i could be wrong.

My thoughts are like what they do with people who have had head injuries or severe burns patients etc where they are sedated for days or weeks and this is generally safe as they are regularly monitored and given IV nutrients etc. I have read that they now used an eeg type machine that reads brain waves so they can judge the right level of sedation the patient needs instead of going by body weight and an educated guess. this was done on my wife this year when she went in for surgery and they hooked her brain up so they could see the level of sedation she was at and this greatly reduces risks associated with anaesthesia??

I also think its interesting how they have also used ketamine infusions to treat depression where the person gets these infusion once a week or maybe once a month. I just wonder if these types of treatments can help the brain to repair itself through adequate resting and maybe some type of resetting of the brain.

These things interest me when i have read about them. I think the body has a way of repairing itself if it can get adequate rest. Its all hypothetical but i thing as sleep seems to be a big issue for many of us cfsers i just wonder how much we could improve if we could get adequate sleep.

 

[knackers323]

I can sometimes feel almost normal at night and then wake up the next morning like I've been drugged.This is the complete opposite to how it should be. What is it about sleep that is making us feel worse? All I can think of is that it gives our adrenals a chance to rest, and then in the morning it takes them so long to get going again. This illness just makes no sense.

 

[Sushi]

I can sometimes feel almost normal at night and then wake up the next morning like I've been drugged.This is the complete opposite to how it should be. What is it about sleep that is making us feel worse? All I can think of is that it gives our adrenals a chance to rest, and then in the morning it takes them so long to get going again. This illness just makes no sense.

It is common in this patient group to feel better at night and worse in the morning. Many theories as to why, but this is true for many of us. I will suddenly get the urge to do some cleaning about 10pm--that is almost kinky!

Sushi

 

[Nielk]

It is common in this patient group to feel better at night and worse in the morning. Many theories as to why, but this is true for many of us. I will suddenly get the urge to do some cleaning about 10pm--that is almost kinky!

Sushi

If you ever get this urge, Sushi and your house is already clean, can you come do mine?

 

[Sushi]

If you ever get this urge, Sushi and your house is already clean, can you come do mine?

The urge doesn't get extreme enough to ever have a totally clean house! Still lots of corners. I just am totally surprised that I have picked up a broom or mop without even thinking of it!

Sushi

 

[rosie26]

Yes I don't know what happens at night as well. I especially remember the first 6 weeks after my
collapse with ME. I was in so much shock, I had never been so frighteningly ill in all my life. I knew deep down that this illness was different from anything I had ever experienced and I also had a gut feeling that I was in for a very long haul.

But I would have moments in the late evening where I remember saying to Mum, "I think I am coming right" only to have my hopes completely dashed. This happened so many times. The fluctuations are hard, but I came to appreciate those small "breathers" as I call them.

 

[SOC]

I can sometimes feel almost normal at night and then wake up the next morning like I've been drugged.This is the complete opposite to how it should be. What is it about sleep that is making us feel worse?

That is, I'm told, a common phenomenon in patients with low blood volume. Quite a few PWME have low blood volume. The problem is that our bodies are taking too much water out of our blood. During the day we tend to compensate to a degree by drinking more, but overnight we get dehydrated and feel crappy in the morning. One way to check for this is to avoid drinking the night before then take your BP first thing in the morning before you walk around. If your pulse pressure (systolic minus diastolic) is low, you might have low blood volume. A PP of about 40 is normal. If it's as low as 25, that's pretty bad.

A cardiologist can treat low blood volume. Some of our ME/CFS specialists do, too. Before I saw a cardiologist, though, I read up on OI in ME/CFS and took plenty of data to back up my symptoms so the cardiologist wouldn't dismiss me without following up.

 

[SOC]

Now that my ME/CFS is much better managed that it was years ago, I don't have the unpredictable ups and downs. Most of the time I feel fine. I can't begin to do everything a healthy person does. I still get PEM if I overdo (and it doesn't take a lot), so I'm certainly not cured. I just don't feel like crap all the time. I can do more than I could a few years ago. I can predict what I can and can't do so I don't worry about making commitments and not being able to follow through. Very careful management (that includes meds, not just behaviors) can make a big difference. It is in no way a cure.

 

[Tally]

1. Fall 2009, Italy/Spain: During a trip to southern Europe (Italy and Spain), I experienced another moment of sudden improvement: I was rested, slept soundly and the brain fog lifted to the point that I had a working short-term memory! The remarkable thing about this event is that it lasted almost 2 full weeks. This sudden improvement happened about 3 days into the trip, and lasted for the duration of the trip. The itinerary included both large cities (Madrid, Rome) and the countryside, different environments, different types of weather.
   
   Not only did my short-term memory improve, but my long term memory was back. I was recalling events from years past, and was doing it clearly, and at a rapid speed. I was absolutely thrilled. It gave me hopes that my memories were not lost; they were all in there, but my ME/CFS prevented me from accessing them.
   
   I felt extremely active and even creative. Truly joyous albeit fleeting moment, since all the ME/CFS symptoms came back within two days of arriving home. Imagine my disappointment after experiencing two weeks outside of the CFS nightmare... only to have everything come back again, with a vengeance.
   
   Note: I have traveled to many countries and regions, and never experienced anything quite like this. What's even more puzzling is that I went to southern Europe again last year, but did not benefit from such improvement. I once felt a bit of similar improvement in Albuquerque, NM, but not nearly as dramatic. Color me puzzled!
   
   
2. Summer 2011, New York: In the awful summer of 2011 I underwent a major surgical procedure, unrelated to ME/CFS. I was hospitalized for more than two weeks, recovering from the trauma of the operation, with heavy monitoring 24/7, IV serum, and major painkillers. A horrible, painful mess.
   
   Well, get this: half way through my hospital stay, the brain fog lifted almost completely, despite the heavy painkillers. For a few days I was able to read well, watched movies in my smartphone from beginning to end, following the narrative without the need to rewind every 10 minutes. Short and long term memory seemed to function much better. And even though I was not sleeping well due to the pain, my mind was clear of brain fog. I was shocked and surprised that this was happening under these circumstances.
   
   Soon after I was released from the hospital, the awful symptoms of ME/CFS came back.

I also felt a lot better while traveling. I chalked it up to adrenaline or something like that. After I came back home I crashed terribly for 6 months.


I had brain surgery, spent 26 hours under anesthesia, and couldn't get out of bed for a month. And after that I was very much improved for a few months afterwards. I thought the brain surgery cured my problem. I was on top of the world. I went to the gym and worked out!!!

Then one day, without any explanation, I woke up with sore throat, fever, brain fog, fatigue,....

 

[Little Bluestem]

It's as though something undesirable is happening in the late sleep cycle, but I don't know what.

I dream a lot in the late sleep cycle and the dreams are seldom pleasant. I sometimes feel better if I stay awake and listen to the radio in the late sleep cycle. Better is not the same as good, since I am still not getting enough restful sleep.

It has come up before on this board that in the past people did not always sleep in one big stretch. They would sleep for a while, get up and do non-exertional things, then go back to sleep. I wonder if that would work for pwME whose lifestyle would allow it.

 

[justy]

Little Bluestem - yes, i have thought of this in the past as a mum of 4 - babies sleep in a more primitive pattern. Hunter gatherers of today still sleep like that, they may doze with the baby in a hammock for a few hours, feeding and waking and sleeping. Someone may get up every now and then and tend to the fire etc. Then in the day there will be other periods of activity interspersed with rest and sleep periods.

When i worked as an antentatal teacher and breastfeeding counsellor i would tell this to mums as a lot of the babies 'sleep problems' would be expectational. I.E modern parents expect babaies and children to sleep for 8-12 hours a night and for them too as well.

We can learn a lot from babies who are still intutuive and primitive beings.
Research into breastfeeding patterns shows that those living in the most natural communities (hunter gatherers etc in Papau New Guinea and the Amazon) hold their babies all day (in a sling) and that when held like this they feed on average for a few minutes approx every 10 - 15 minutes) Whilst in so called developed world we think its unreasonable if a baby wants nrusing every couple of hours.

But society is not set up for this way of living. Sorry to go off at a tangent.

Justy.

 

[Seven7]

i often joke about being put in an induced coma but sometimes i wonder if being knocked out for a week and letting our little brains rest would make a big difference??
book in for a week every few months maybe?? i think early in the illness if one can rest alot it makes a big difference??

I forgot where I read it but this was tried and patients did not get better.

 

[Seven7]

I have had 3 total remissions on the From fatigue to fantastic powder (3 months in it), All 3 times I crashed because I was doing so well I went to the gym and started to fast. I have never been able to do heavy aerobic in my life.

2) I get total remissions when I have a cold, I can even run with no payback if I want to.
3) The second day of my periods I get remission, cannot run but everything else normal. Do not have activity limitations.

I never tried the powder again because I just couldn't tolerate it in the stomach, I mix it on kefir now, and I have been on it for a few weeks again, I am in my way to remission I think. WILL NOT JOIN THE GYM THIS TIME.