Who are the 10% that get better

[nikefourstar]

What do you think you had if it wasn't cfs? Did you have Pem and non restorative sleep?

 

[moblet]

A recently diagnosed sufferer I once knew had read a book documenting the stories of 30 or 50 sufferers who had recovered, hoping to find a common thread that she could use for her own recovery. She said the only thing the stories had in common was that the sufferers never gave up searching until they recovered.

Could you give a quick sentence on how [cranial osteopathy and craniosacral therapy] are distinct?

The most fundamental difference is the knowledge and skill of the practitioner. Cranial osteopathy is practiced by someone who has spent years at university learning to become an osteopath - in the US most have done medical degrees and then specialised in manual medicine - and then done further practice and training after gaining some practical experience in the profession. They've basically done a degree in anatomy and physiology and been trained under close supervision in manual medicine, then gained some years of experience in recognising their limitations with complex patients, then obtained training in how to address those patients.

Craniosacral therapy is practiced by self-described "therapists" who've done a weekend course in how to indiscriminately manipulate someone's craniosacral mechanism. I read its history a while back - from memory it was developed by an osteopath, John Upledger, who was presumably looking for some way to obtain financial leverage from his skills. I would liken going to a CST practitioner as being like hiring a tradesperson whose toolbox contained only a hammer and who only knew one way to swing it.

 

[Ambrosia_angel]

What do you think you had if it wasn't cfs? Did you have Pem and non restorative sleep?

Yes I did have those symptoms but my main symptom was muscle weakness. I'm not sure what it could be. At the moment I'm just questioning everything because I've relapsed(?) with very different symptoms that I've never heard of with ME. But again this might just be another immune condition altogether. A lot of people with autoimmune conditions have more than one.

 

[nikefourstar]

Yes I did have those symptoms but my main symptom was muscle weakness. I'm not sure what it could be. At the moment I'm just questioning everything because I've relapsed(?) with very different symptoms that I've never heard of with ME. But again this might just be another immune condition altogether. A lot of people with autoimmune conditions have more than one.

How long were those symptoms there for and how did it come about

 

[nikefourstar]

Hi @nikefourstar. I can understand your frustration but please don't give up hope. We have all been to dark places, but where there's life there's hope. Corny I know, but a lot of what your are feeling (hopelessness) is more than likely a symptom of your dysfunctional metabolism. Please have a look at methylation on this site and ask your doctor for some blood work. He has to do this in any case to get you a diagnosis. It might be that the hopelessness you are feeling can be improved. At my worst in 2014 I was unable to walk the 100 yards to the post box to post my sick certificate to work and was housebound. At the time I was wondering how I would ever get back to work or play with my son again etc etc. I'm now walking 20 minutes a day and can hold down a full time job ( with a few adaptation). I still have PEM episodes but they are every 3-4 weeks as oppose to every day. If you have CFS there are ways to improve things (sleep management, pacing, heart rate monitoring, diet and supplements). Best wishes to you.

Did you have non restorative sleep? How did things get better?

 

[justy]

+++++++++++

I am unfortunately a member of this club too! But the odd thing is in all my years of remission I could always still feel this beast lurking inside me. It's hard to put into words, but I just knew I was still ill / infected, whatever. So, when the recurrence came I was not shocked. Yes, I was greatly upset and madder than hell, but not shocked!

During my long remission I was still having constant niggling health issues and stamina problems. I could exercise, bit would feel like I was going to die afterwards, although no PEM. I tried getting a part time job while bringing up kids and my stress levels made me feel ill, and even though I exercised I couldn't get the fit body I wanted. Now I would give anything to go back to that level...

 

[justy]

Same here. Just this inexplicable sense that I was not quite like other people, that I needed to be more careful or something. When it came back it was devastating but not at all surprising.

Bingo!

 

[nikefourstar]

Bingo!

I would really like to know your story, how did you first get sick, were you diagnosed with cfs, did you have Pem and non restorative sleep?

 

[justy]

I would really like to know your story, how did you first get sick, were you diagnosed with cfs, did you have Pem and non restorative sleep?

I have an M.E diagnosis, yes, non restorative sleep and PEM, I've been ill over 20 years, with a long remission in the middle. the past 8 years I've been severely ill. I cant say much more because im too ill and trying to rest to go on a trip abroad for medical treatment. Have you read the Canadian guidelines and the International criteria? (CCC and ICC)

 

[nikefourstar]

Yes I have. I was just wondering how you went into remission

 

[Chocolove]

I've seen a couple doctors gotten blood work and stool sample tests so I'm like almost positive I don't have cancer or anything like that. But if I am declining this fast then I'll probably be unable to speak within a few months like some of the severe ill

You might be surprised to hear this but there is every possibility that you could completely recover within a couple of months. No joke. There is very real hope. Do not rush to assume you have CFS/ME. It is way too soon for that to be likely.

@nikefourstar It is quite easy to become deficient in vital nutrients - vitamins and minerals, which can cause weakness, deterioration and even death. Doctors aren't trained in nutrition and so don't address this although they are generally more aware of the need to provide deficient nutrients once in the hospital and on IV. The IV bypasses the gastrointestinal systems control mechanisms to avoid overdoses which is not a good thing and some folks have discovered that.

I would strongly recommend that look into obtaining a really good OTC multi-vitamin/mineral combo. Sometimes disease, stress or genetic anomalies put into deficient state which is dangerous to deadly. When deficient one commonly becomes anxious because it is our body telling us that we need something now...or else! Forget about getting anti-depressant drugs - they just cause more problems and don't fix the issue.

For mood issues amino acid therapy is helpful, cheap and one can discover with 10 minutes whether it will be effective by breaking open a capsule in your mouth. Check out the book, "The Mood Cure," on Amazon.com. However it is critical to check into B vitamin supplementation as well.

There are some nutrients that are very commonly deficient in the USA that are absolutely critical to life and energy. Among those are magnesium and B vitamins. An estimated 70-80% of Americans are deficient in magnesium which is critical to 300 enzymatic reactions in the body. Without magnesium, you often will not be able to absorb some vitamins like Thiamine (B1), and this knowledge is at the forefront of some of the current research into CFS/ME and mitochondrial diseases. Consumption does not equal absorption. There are a couple of forms of magnesium that are much more absorbable. When you overdo it, the bowels loosen and so you just cut back a bit.

Do you remember having mononucleosis? Our symptoms are similar, extreme fatigue, inability to do much of anything, for a long time. But we recovered. If you haven't had mono yet, have that checked out with the doctor as well.

You have a long life ahead of you and many people recover well from disease. Many people are totally unaware of nutrient deficiencies and how common they are in the Standard American Diet (SAD). I myself thought I was totally protected from vitamin/mineral deficiency until I discovered that some manufacturers include largely unabsorbable forms of nutrients because of cheaper cost. Further, they include carotene instead of real vitamin A (to avoid overdose of this fat soluble vitamin.) Carotene converts to vitamin A very poorly.

You might try a meal of beef liver smothered in onions, with a side of steamed broccoli, a half baked potato, some fresh berries and some (water soaked nuts.) You might be very surprised to discover within an hour or two that you are starting to feel better, like a desperate man in the desert getting water for the first time in days. Liver is prized by carnivores and ancient human cultures because it is a treasure hoard of valuable nutrients not often found. It may not taste good, but some like it. I don't like it but I eat it at least once a week for the amazing renewal I feel.

Another thing I found remarkably helpful when I faced the sudden death of my dearest, was the extracts of Albizia and bleeding heart flower, along with the amino acid gaba, all of which are available on Amazon. These stabilized me in the face of overwhelming, life threatening shock, grief, horror, confusion, and loss of will to live. Note, these may not be the particular things that you need, but there are other options.

The most important thing you can do as the doctors attempt to search for disease, may be to determine your own nutrient deficiencies and address them. This may actually save your life, and your quality of life. There are more nutrient deficiencies that are common in the USA...

We're glad you reached out to join us in our health quest. We have folks here that are carrying many burdens, poisoned by heavy metals, disease, malnutrition, severe over-work, abusive relationships...
Quitting a stressful job can be the best thing to happen to you. All these burdens are extremely taxing to the adrenals, and they require a significant period of time to recover.

A single nutrient deficiency can make you weak even to the point of paralysis and death. That is actually cause for great hope, in that supplying the missing nutrient(s) may restore you.

 

[LINE]

Good post Chocolove - nutrient deficiency is one of the big keys in recovery. Magnesium is critical and oftentimes overlooked. The proper form of magnesium is key as well, I and others have gotten good results with magnesium glycinate and magnesium lysinate.

Vitamin co-factors, proteins, healthy fats and other minerals are critical as you mentioned. Antioxidants are necessary as well.

 

[Chocolove]

@nikefourstar You may find this conversation thread very helpful....just click on the link to see:
http://forums.phoenixrising.me/inde...ent-story-focus-on-thiamine-deficiency.24059/

Note that magnesium deficiency is the U.S.A. is currently estimated at 70-80% of the population.

Magnesium is required in order to be able to use thiamine.

The account relates to almost a 24 year span of chronic fatigue that was relieved by thiamine. Too bad this was not addressed early on. That 24 year span could have been quite lively instead.

 

[gdbennett]

@nikefourstar are you on LDN? That has helped me not be bed bound and work PT.

My sis and I both have this terrible illness. She was housebound and essentially bed bound for several years and has improved some. Please don't give up. There are some options out there. You might not be your old self again, but you can likely make some gradual improvements over time.

We spent a great deal of money to see a specialist from Brussels in the US. I can give you a sample list below of what he tests for. US doctors can treat you for these things with antibiotics. Pardon any typos. For ex,

Giardiasis
Cytomegalovirus
HHV-6
H pylori
C. difficile
Chlamydia pneumonia (not an std)
Lyme and related co infections. Don't go off a standard doctors test. Get a good one like igenix.
camplobacter

I'm sure you likely are, but the candida diet helped me with energy tremendously. I can not emphasize this enough. Cut out the alcohol and all sugar. We will get you thru this. We love you, know your pain and struggle and want to be here to encourage you.

Remember, YOU are extremely precious in God's eyes and your family needs you. There are quite a few fb pages for those of us and our families who need support. I have tons of resources. Feel free to reach out and let us know what you need.

Praying for you...

 

[nikefourstar]

@nikefourstar are you on LDN? That has helped me not be bed bound and work PT.

My sis and I both have this terrible illness. She was housebound and essentially bed bound for several years and has improved some. Please don't give up. There are some options out there. You might not be your old self again, but you can likely make some gradual improvements over time.

We spent a great deal of money to see a specialist from Brussels in the US. I can give you a sample list below of what he tests for. US doctors can treat you for these things with antibiotics. Pardon any typos. For ex,

Giardiasis
Cytomegalovirus
HHV-6
H pylori
C. difficile
Chlamydia pneumonia (not an std)
Lyme and related co infections. Don't go off a standard doctors test. Get a good one like igenix.
camplobacter

I'm sure you likely are, but the candida diet helped me with energy tremendously. I can not emphasize this enough. Cut out the alcohol and all sugar. We will get you thru this. We love you, know your pain and struggle and want to be here to encourage you.

Remember, YOU are extremely precious in God's eyes and your family needs you. There are quite a few fb pages for those of us and our families who need support. I have tons of resources. Feel free to reach out and let us know what you need.

Praying for you...

Thank you, I pretty much stopped believing in god after getting this and seeing what it has done to others as well. I'm really just scared that I am worse off than a lot of other people. They way mine came on was so sudden that I feel like I will either be 100% or 0% like I currently am. But thank you for your kind words.

 

[Learner1]

Thank you, I pretty much stopped believing in god after getting this and seeing what it has done to others as well. I'm really just scared that I am worse off than a lot of other people. They way mine came on was so sudden that I feel like I will either be 100% or 0% like I currently am. But thank you for your kind words.

@nikefourstar I know I'm late to this conversation but have been following your posts. I have 23 and 26 year old children who've had very serious health challenges, and know how hard it is to be dealing with something like this when you have your life in front of you. It's not fair and it's scary...

I beat stage 3 cancer only to come out the other end of treatment with CFS. I had several of the triggers, a "perfect storm." I feel like all I am is a patient any more...and am hoping I can get well before I get too much older...

As others have pointed out, this is a wonderful time to have ME/CFS. The research published over the last 2 years has made great strides in unlocking the mysteries of this frustrating syndrome.

It's known that it's a multisystem disease, triggered by a variety of factors. Patients who recover will likely do so by using a variety of tools, adjusting and trading off over time, slowly getting the out of whack organ systems working better together.

I've been fortunate to have wonderful care from naturopathic doctors who are up on the latest research and have been working for several years trying various modalities.

We all didn't think I was sick as I was, but when all the normal things for patients with my history didn't work and I became more and more debilitated, things got serious and we dug into the deep weeds.

We've developed a very comprehensive program, which is slowly pulling me out of this, consisting of:

1) comprehensive vitamin, mineral, and amino acid support, in oral, intramuscular injection, and IV form.

It is customized to my genetics, current symptoms and labs. (I have several genes that have SNPs that cause me to have different needs than most people, causing susceptibility to nutrient deficiencies and disease.)

2) immune system support and a program for attacking chronic viral and bacterial infections, using IV artesunate and vitamin C, botanicals, antibiotics, ozone, HBOT, and UV light.

3) mitochondrial support to repair my mitochondria and help them make more energy

4) lipid replenishment to support sphingolipids and phospholipids which make up mitochondrial and cell membranes

5) an organic, whole food, ketogenic diet, with as much organic/wild animal protein and as many vegetables as I can

6) comprehensive hormone support - adrenals, thyroid, sex hormones, especially pregnenolone and DHEA

7) comprehensive detoxification, out of mitochondria and through Phase I-III detox.


Results so far over the past 8 months are:

- sleep reduced from 16 to 9 hours per day, 7 at night, 2hrs of naps

- brain fog and cognitive function improved from 30% to 75%

- not crashing as hard

- muscles don't feel like lead as quickly or ase often, PEM improved 50%, exercise ability improved by 30%


I have no idea if and when I'll recover. This is time consuming and expensive. But I'm making progress and what I'm doing is in line with the variety of treatments I've been reading about from other wonderful patients on Phoenix Rising for years.

Facing cancer, I had to face death. In a way, it was a gift, as that was a very scary diagnosis, but it gave me the strength to face this battle. This is more frustrating in many ways... there hasn't been enough research and big money isn't behind it.

Tenacity, knowledge and resourcefulness is the only possible path to wellness here. It won't be easy. There will be trial and error. It will be difficult.

You are going great so far. You're reaching out and learning. Keep doing so. Find a functional medicine doctor who can help you. Look at your immune system, look at a few other bugs you haven't tested, look for damage they've done, and fix it. Put together a comprehensive program to help you, with the help of your family.

Most of all, keep a positive attitude and hope.

 

[PennyIA]

I heard stories of people saying they recovered or had relapses and its often described in terms of like '75% back to normal', I don't quite get what they mean by that though since you either have PEM or you don't,

I've been here and back to bedridden and back here again. I definitely have relapsing/remitting patterns to my illness. I've been completely bedridden twice. Right now, I've been in remission for about a two years, though I can feel things are worsening right now.

When I think of being at 75% of normal, I still get PEM, but I can do so much more before triggering PEM than I can when I'm worse.

So, for example, when I'm not bedridden, but instead houseridden, Even 30 minutes of house work broken down into three separate 10 minute 'exertions, could create PEM. When I'm able to work (I am right now), I can work a full day and spend almost an entire hour on housework without triggering PEM. But if I were to try to spend two or three hours on my feet or trying to be social, or traveling, etc, then PEM still fires.

I'm measuring my 'level' based on how much of my life I can actually participate in instead of lie on the bed/couch trying to recover.

I've been at 75% to 85% for two years. But have dropped to around 60% in the last month.

 

[ash0787]

I've been here and back to bedridden and back here again. I definitely have relapsing/remitting patterns to my illness. I've been completely bedridden twice. Right now, I've been in remission for about a two years, though I can feel things are worsening right now.

When I think of being at 75% of normal, I still get PEM, but I can do so much more before triggering PEM than I can when I'm worse.

So, for example, when I'm not bedridden, but instead houseridden, Even 30 minutes of house work broken down into three separate 10 minute 'exertions, could create PEM. When I'm able to work (I am right now), I can work a full day and spend almost an entire hour on housework without triggering PEM. But if I were to try to spend two or three hours on my feet or trying to be social, or traveling, etc, then PEM still fires.

I'm measuring my 'level' based on how much of my life I can actually participate in instead of lie on the bed/couch trying to recover.

I've been at 75% to 85% for two years. But have dropped to around 60% in the last month.

ok thats interesting, I think I was like that about 1 year ago but then something changed and I became unstable and it would seem to be impossible to return to that level.

What I was sort of getting at though is it seems like you consider 100% to be like standing up all day, talking to people, lifting objects, driving etc, but for a normal person that would actually be a slightly tiring day, maybe even restful if say they drove around in the car for a few hours, went into a few shops then went back home and played video games for the rest of the day. 100% of what a healthy person is capable of is actually way higher then that,
so I wonder if PwME have adjusted heir expectations to an extent and even though they say 90% recovered for example, they are still limiting the activities that they undertake to ones which don't show as much of a difference because the requirements on the body are a lot lower.

 

[PennyIA]

My personal expectation of 100% would be the ability to work a full 8 to 10 hour day, spend an hour getting groceries, spend an hour working out in a gym, being able to be social. Then making supper and being tired that night. Sleeping a full night and waking up feeling well rested the following day without major repercussions. Being able to clean more than one room and clean, clean it, not just pick up, but move furniture to vacuum under, etc. It's definitely something I would have been capable of doing before I became ill and while I think it would still be tiring for the normal person, I think that it's reasonable to expect to be tired after a full, active day.

Now? At around 60%: I have to lay down during my lunch hour, try to pace myself avoid the gym, get help to get groceries, and try to keep a room picked up, being able to have a truly clean house is just a daydream.

When I'm bedridden, I'm lucky to be able to get someone to cook nutritious meals for me, and settle for delivery because even going to fetch a ready cooked meal is more than I can manage.

 

[Sherpa]

So I have done a lot of research on cfs for a couple months now and it seems like the leading doctors say there is up to a 10% chance for someone with this to recover. Who are these people??

I recovered from a severe case of Adrenal Fatigue Syndrome and CFS.

I was mostly couchbound... my house was a always mess. I could not do yard work or go in the sun for more than ~15 mins. I was too unreliable to make friends and extremely isolated... for years.

I researched, consulted with experts and self-experimented non-stop from 2011 to 2016 to get to where I had no further symptoms or complaints. It was the hardest and most grueling thing I have ever done in my life and I think of it as a miracle against the odds.

I've healed to the point where as long as I keep a very clean diet, take a few supplements, and go to bed by 10pm I can live a basically normal life... work, gym, date, friends, throw a party, help friends move, etc.

But no more late night partying, alcohol or competitive sports. I am still pretty selective about out of town travel, unless it has good food and sleep dynamics. I avoid whirlwind adventures that involve non-stop activity for 18 hours a day. I can survive busy days without crashing, I just don't like it.

The best part about recovering is being able to care, do stuff and be there for other people once again - to be generous. It was miserable to be stuck in survival mode, every single thought going towards how to conserve my energy and look out for myself.