I can't picture spending the rest of my life like this

[Aerose91]

Here is the link to Dr. Lam's website about the adrenals and it has a phenomenal amount of information about the adrenals and it's hormones and how they affect other organs and how other organs affect adrenals. Almost all of his information makes since and I have only on one occasion seen his information contradicted and it was a minor subject.

It is a lot of reading, but take your time so you can make since out of it all.

http://www.drlam.com/articles/adrenal_fatigue.asp

Good luck!!

August-

Thanks for sending me that link. I actually worked with DR Lam for about a year and have his book also. He's actually the reason I took phosphaditylserine which had me the ME! Guess I'm a rare case tho because it doesn't happen for most people with just 1 pill like that.
I haven't stopped at any point with adrenal fatigue recovery, especially seeing as though it's almost identical to ME recovery

 

[Aerose91]

Hi, I hope my story I'll share some of it with you, will give you some hope.

To your questions, Yes some with very severe ME do recover and yes some even get their brains functioning back again too.

I got ME at the age of 26/27 years old... after about 12 months of a slowly worsening state, suddenly I crashed so bad, I ended up COMPLETELY bedridden. I was among the sickest you'd come across in our ME world, bedbound for 9mths, much of that time not able to stand or walk to the toilet. I have over 90 different symptoms with my ME.. from comatose for days without waking...Im very lucky to be alive!!.. to seizure incidences, shaking to the point I couldnt eat with a fork, weakness to the point I couldnt hold my head up a lot of the time.

I couldnt handle light so had to be in dark room, lost my ability to be able to speak more then a 18mth old as my brain lost its ability to formulate sentences eg was talking in only in 1-3 words and ended up having to use my own version of sign language to express when I needed something, in intense pain (bone, muscle, joint.. even the sheets on my bed hurt me) and noise.. well that would send me shaking and spasming and into like seizure activity. I couldnt even listen to the radio softly as the beats of the music would overwhelm my brain and be torture to me.

You'd never guess where I was years after that... I actually fully recovered to the point where I was able to do marathons again.. I did one of the biggest marathons in the world after during my recovery without bringing the ME back, I even gave myself hypothermia during that marathon and even that didnt trigger off ME again. (The recover happened very very slowly over many years).

Im only sick today as if we are lucky enough to recover, we seem to be still susceptable to this illness and hence can get it all over again under some situations... never forgot that if you recover. In my case after a few years of complete wellness I caught a virus.. just a common everyday one and went to work with it. I saw no reason to slow down with it and hence went to work sick.. that was a very bad mistake. My body was susceptable during that time obviously and I then ended up with ME again. Had I have known I would always be susceptable under common ME triggering events (things which first trigger ME off in people) I would of rested that day. My crash wasnt a big one and unfortunately then while it was still mild and I belive even at that point I could of recovered again easily from that point (if I could of taken just a few months off work) but I was forced into havin to do too much and then crashed down to basically where I are today.

All this being said, my illness thou quite bad (I have to be pushed in a wheelchair to go shopping) is NOWHERE near as bad as the first time I had it and Im very grateful for that. When I got this illness back, also my severe FM and skin sensitivity never came back in with it either so Im free of those things today.

You havent had the illness a long time and may still recover. My brain was so so bad (both short and long term memory was affected with my ME) and it did recover during the remission and also since Ive crashed again. My brain was so bad that I forgot how to use simple objects eg go out to make toast but not know how to. I even one time got stuck in a room as I forgot that walls had things you open (a door) to leave a room from and hence I was looking everywhere.. including the roof, trying to work out how to get out of a room. Someone else that day had to show me how to get out of the room as I couldnt work it out.

Another time my brother-in-law (I know him well I was bridesmaid at his wedding) came to my door but my brain couldnt work out who at all he was, I knew I knew him from somewhere, but that was it. "Who are you?" (thank god my brain works far better nowdays!!!)

Try to stay postive, try not to compare yourself with other cases as each of us are different and who knows how it will be for you. There will probably come a time when you will either learn to pace better or the ME will stabilise a little and from there you may be able to work at improving more. You may seek 95% recovery now but in time you will probably adjust could could well be quite happy with less recovery then that. (even people in wheelchairs sometimes can feel like they are leading happy or decent lives).

Be open to all the possibilities you may encounter with this illness but dont think of yourself as being "stuck" in any of them. Its really quite a journey.

This is crazy. What a story you have.

It seems to be a trend with most of the people I have seen- that they go into a remission at some point lasting sometimes several years, and then slide back down into disease.

Do you think that if someone is very careful when in remission than they can successfully hold off ME from coming back? It's so sad to hear you guys had a second grasp on life and then went back into this hell.

For me? To be honest my brain is so bad I can't even feel anything is wrong. I literally have to wake up and convince myself every day that I'm sick and read my journals to remember what the problem is. My brother can home to visit yesterday- whom I'm very close to and see regularly- but just ann tea person in the house made me slip into near full psychosis because it was too much for my brain to handle; keep a grasp on reality and interact with this new person at the same time. All day every day my moods are all over the board and I try to keep some memory that reality does exist and this word I'm in isn't real. Reading my journals of where I came from is the only thing that keeps me going at this point because it reminds me that reality does exist even tho my brain can't feel it.

 

[ahmo]

Hi Aerose91. i can't comment on how to feel better about your life. I struggle with that myself, and I'm 64. So my issue becomes not, "I've missed out on a life", but, "Why bother, now that it's nearly over?" I talk to myself every day to overcome that voice. And, I've found that when I'm depleted of some micronutrient, the voice of despair and negativity is very loud. Or, conversely, at several distinct points, when I added a supplement, the voice, the river of negativity, dried up.

I entered this conversation to add something different. I only this week encountered an article stating "What we call adrenal exhaustion is actually HPA malfunction: hypothalamus-pituitary-adrenal axis. (http://www.definitivemind.com/forums/showthread.php?t=560) I've looked at my ME/CFS through the lens of HPA for most of the 10 years I've been struggling. Almost 2 years ago I started hypothalamus glandular to help with my overactive autonomic system. It helped a lot. (Going gluten and dairy free, with the GAPS diet, further downgraded my high anxiety symptoms within 3 days.) I added adrenal glandular, because the other supps I was using for this, and low dose cortisol, were making things worse, with edema and pushing other mineral deficiencies. And finally, I added pituitary glandular when it became clear I could no longer tolerate the low dose Klonopin I'd been using. All 3 of these glandulars have been excellent for me. Finally my sleeping improved. Most recently, 6 months ago, I fully implemented Freddd's Protocol for B12 and methylfolate. I'm finally something approaching healed.There's much that I'm not able to do, but I feel better inside myself that I have most of my life. Some of this has to do with correcting the underlying mineral imbalance of pyroluria. My sleep is better than it's been all my life. Which, of course, means every day is better just because of not being sleep-deprived. Anyway, rambling here, you might want to try glandulars and certainly the B12 protocol. I now agree with Freddd's speculation that ME/CFS might be at it's core a B12 deficiency syndrome. Certainly there are other interacting factors, but correcting this has normalized my life. Best to you, ahmo

 

[Valentijn]

I have that thought a lot. I try to stay positive and be that ideal 'Glowing disabled person'.

Not me ... I was never a "glowing person" when I was healthy, so I don't expect my personality to abruptly change now that I'm ill. Maybe it is what society wants from disabled people, but in addition to being disabled, we're also sick. And for me, pretending to be cheerful just wouldn't be worth the effort, sick or not

I still have the same (warped) sense of humor, and I make sure I don't get caught up in focusing on any negative aspects of my life. But I'm also careful not to deny those aspects of my life, so that I can acknowledge them and move on to something more interesting and productive.

 

[SOC]

Not me ... I was never a "glowing person" when I was healthy, so I don't expect my personality to abruptly change now that I'm ill. Maybe it is what society wants from disabled people, but in addition to being disabled, we're also sick. And for me, pretending to be cheerful just wouldn't be worth the effort, sick or not

I still have the same (warped) sense of humor, and I make sure I don't get caught up in focusing on any negative aspects of my life. But I'm also careful not to deny those aspects of my life, so that I can acknowledge them and move on to something more interesting and productive.

Couldn't agree with you more. I don't pretend to be well when I'm not. I don't try to hide my illness from the world. I am not ashamed of being ill. At the same time, I don't give up and hide in a corner. I am not in denial about the seriousness of my condition. I don't waste a lot of time moaning about what I can't do, but I don't pretend I can even begin to do everything I want to.

I am never going to be "that ideal 'glowing disabled person'". For me, the idea is laughable. The only "glowing disabled people I can think of might be the paralympic athletes who train at my local university. However, they're injured but healthy and in good physical condition. Even so, life is often inconvenient enough for them that they're not always glowing emotionally. I think the glowing disabled person might be a myth alongside the myth of the happy slaves.

 

[caledonia]

One thing my shrink told me that was helpful, was when you hear all those scary statistics of only a few people recovering, is to think that you are going to be one of those who do recover. Why not you?

What I try to do is manage the disease and not define myself by it. So I'm not really a sick person, I'm still a designer, musician or whatever, just at a different level than most people.

All that being said, it does make me feel better when I have little improvements, and when I feel like I'm working towards recovery. Like Ahmo who posted above, I'm having improvements with methylation treatment. I can only tolerate tiny amounts, so I'm having tiny improvements, but they're things that have never improved before in 13 years of trying, like adrenals, thyroid, and sleep, so that's huge and very promising.

Now I see everything through the lens of methylation, and it makes so much sense, like nothing else has before. If you haven't heard about this, check out the links in my signature, starting with the Methylation Made Easy videos.

ps. based on methylation theory, thyroid and adrenal problems are HPA axis signalling problems, due to low glutathione in the hypothalmus and pituitary. You increase glutathione by doing methylation, the adrenals and thyroid get their signals and voila, they start working again.

It seems to be working as predicted in my case. My adrenals were literally a flat line for many years. My naturopath said they were among the four worst they had ever seen. Based on the amount of supplementation I've been able to reduce for them, they're about 75% recovered. Same deal with my thyroid - about 50% recovered.

 

[SickOfSickness]

It strikes me that Phoenixrising has accumulated 8000+ members, but only has 1000 active members.(?)
Where have the other 7000 gone? Have they improved enough to move on? had enough of the internet? deceased?

Some fall into poverty and can't get online much. Some prefer to use other health websites (sometimes not M.E. sites). Some need a break from reading or writing about their health. Some still browse but don't log in. Some are too ill to use a forum. Some have too many life problems happening, which takes all their energy. Some are busy enjoying life.

 

[SickOfSickness]

It is depressing if you think that long term. Better to focus on seeing some improvement in the next few months. After that, a new goal for improvement.

I've known people without M.E. who felt the same way. They just got caught in a depressing cycle of thinking why is their life that way, and thinking it would go on and not change. When most people can look at their situation and sympathize but they can see the person could change, or their life will change.

 

[Valentijn]

It is depressing if you think that long term. Better to focus on seeing some improvement in the next few months. After that, a new goal for improvement.

I've known people without M.E. who felt the same way. They just got caught in a depressing cycle of thinking why is their life that way, and thinking it would go on and not change. When most people can look at their situation and sympathize but they can see the person could change, or their life will change.

I'd also say it's important to make accommodations in your life, instead of thinking "well maybe I should wait and see if it's really going to still be necessary." Things looked bleakest prior to getting my mobility scooter, but once I had that there was much more normalcy in my life, and I could get out and do stuff. More importantly, I could visualize myself having a life. If a scooter isn't feasible, even a pushable wheelchair and someone to push you around for "walks" can make a huge difference.

It was actually a really fucked up psychologist who told me that doctors could not help me, and that nothing in my life would change from how it was at the time, unless I could convince myself to not be ill anymore. Naturally, that wasn't very helpful and actually made me feel very suicidal briefly. But it did piss me off enough to make some of the changes which she was so opposed to.

So now I have a scooter, a tall chair I can sit on in the kitchen if I'm spending much time there, a shower chair, a pulse oximeter, and a TV upstairs I can watch while I wait to recover from a bath or shower. I've also been pretty persistant in looking for treatment of my symptoms, and have found some things to be very helpful. I couldn't think myself into being well, but I could find ways to make life a lot less unpleasant.

 

[Aileen]

I am so dissociated I can't even feel time or existence anymore. I feel nothing. Reality is merely a concept to me now because of how far away it is. The emptiness in my brain is gut wrenching and there are multiple levels of complexity in this world that my brain simply can't perceive. The world appears as if I have been poisoned- like in a movie when they show someone in first person who has been poisoned. It's so bad I had a SPECT scan done and the doctor even said I was the worst he's ever seen, that my 29 year old brain is worse than a 90 year olds and I'm showing signs of dementia.

However I know the odds of that happening are slim to none. Some days I have the realization of how far down I've actually gone and realize "oh my God, my brain is baaaaaad. Really, really bad. How am I supposed to recover from this"?
------------
...To be honest my brain is so bad I can't even feel anything is wrong. I literally have to wake up and convince myself every day that I'm sick and read my journals to remember what the problem is. My brother can home to visit yesterday- whom I'm very close to and see regularly- but just ann tea person in the house made me slip into near full psychosis because it was too much for my brain to handle; keep a grasp on reality and interact with this new person at the same time. All day every day my moods are all over the board and I try to keep some memory that reality does exist and this word I'm in isn't real. Reading my journals of where I came from is the only thing that keeps me going at this point because it reminds me that reality does exist even tho my brain can't feel it...
--------------
I even was a competitive boxer.

Above are parts of several posts you wrote. These jumped out at me because of the SPECT scan proof of extensive brain damage, the cognitive (brain) symptoms and the fact you were a competitive boxer.

It is becoming more and more clear that some sports can cause brain damage. Lately we have heard a lot in the news about hockey and football (North American NOT soccer). In addition to concussions they are finding a connection to depression and other cognitive symptoms.

Boxing was, I think, one of the first sports where brain damage was being reported. You might want to do some research on brain injury in boxing. That may be what you have. And the hopelessness you feel may also be a symptom. Perhaps you can find a doctor with experience in this field to help you and to find out if ME/CFS is actually the correct diagnosis.

I second what everyone else has been saying. Don't give up and don't listen when people tell you recovery is unlikely or not possible. So many people with all sorts of illnesses have heard that line from doctors (and others) and then gone on to prove them wrong!

 

[Aerose91]

I did box for a while but not to the point of risking any severe injuries and I haven't boxed for several years now. All of these things came on immediately several months ago and I have every symptom of ME so I wouldn't think they would he related. Had I been a professional and had these things slowly onset I would say that may be likely- but as bad as my SPECT is it's still inline with ME type damage

 

[xchocoholic]

I had similar brain problems when I first got me/cfs and after 16 years these went away via the elimination diet. My spect was normal but I had lesions on my brain.
The lesions vanished along with most of my neuro problems.

My biggest mistake was listening to my well meaning traditional doctors who told me that I would be that way for the rest of my life. I was 34 and my DD was only 2.

I dawned you were diagnosed with adrenal fatigue, me too but didn't see any mention of dietary or toxin elimination.
Gluten, dairy, corn, soy, chemicals including coffee and chocolate are common symptom triggers. This process hasn't cured me but it beats the hell I was in. The gluten summit in Nov May help you.

I've been sick for 24 years this January and
understand how difficult being chronically ill is but I chose to find something positive about my life when things look bleak.
Getting out for any reason typically boosts my spirits. I had a therapist once tell me to praise my smallest accomplishments.

 

[Aerose91]

Im glad to hear you have regained a lot of your brain back anyway.

Per diet and elimination and stuff- I've been on that protocol for at least a few years now. I did it before I ever even got sick because I was a personal trainer and fitness fanatic and just generally stayed healthy. I avoid all dairy, soy, gluten, corn, and all other histamine foods. Don't drink, smoke, etc. I add himilayan salt to my water and make my own bone broth to drink. I really can't clean up my lifestyle or diet any more than it is, yet my brain has taken such a severe hit it's ridiculous.

Part of the problem I'm having is that basically all of the things you need to do to heal from ME I was doing for years before even getting it so there's no drastic changes to make.

 

[xchocoholic]

Bummer. At the risk of being a pest are you avoiding gf grains ? Paleo or Wahls diets are good options. I'm finding that juicing veggies and fruits work best for me.

So how about glutamates ? Dogtorj has some great info on this. These don't effect my brain but he seems convinced some people have neuro reactions to these.

How about brain foods ? Healthy fats, superfoods, etc ?

Or treating for heavy metals ?

 

[Aerose91]

Bummer. At the risk of being a pest are you avoiding gf grains ? Paleo or Wahls diets are good options. I'm finding that juicing veggies and fruits work best for me.

So how about glutamates ? Dogtorj has some great info on this. These don't effect my brain but he seems convinced some people have neuro reactions to these.

How about brain foods ? Healthy fats, superfoods, etc ?

Or treating for heavy metals ?

All of them

And please your not being a pest at all I greatly appreciate the help and your suggestions are great- ones that most people would probably overlook. I've just been so healthy for so many years it really bothers me not only that I got ME but that it's so bad and progressing. I hope all this stuff levels it off at some point

 

[Sushi]

@Aerose91

What protocol are you using for heavy metals? It has been shown that some approaches actually move more metals to the brain, so "how you do it" really matters here.

Best wishes,
Sushi

 

[Aerose91]

@Aerose91

What protocol are you using for heavy metals? It has been shown that some approaches actually move more metals to the brain, so "how you do it" really matters here.

Best wishes,
Sushi

Ive been doing nutritional balancing for about a year. Not sure if you guys are familiar with it but they do a hair sample test for minerals and heavy metals and then you use mineral supplements to move out the metals. It's a slow process but was working nicely until the ME hit. Now nothing seems to work but Im continuing with it

 

[Sushi]

Ive been doing nutritional balancing for about a year. Not sure if you guys are familiar with it but they do a hair sample test for minerals and heavy metals and then you use mineral supplements to move out the metals. It's a slow process but was working nicely until the ME hit. Now nothing seems to work but Im continuing with it

More details?

Sushi

 

[Aerose91]

Here's the lab that does it. You can read all about what metals and minerals their checking for and how they interact under the "minerals" tab. It's kind of a natural way to replace heavy metals with the correct minerals that your body needs.

http://www.arltma.com

 

[xchocoholic]

Sounds like you're on the right track. Your symptoms sounded like the opiod reaction that some autistic children have to gluten and dairy.

I had a similar problem but it went away after a year or so on the elimination diet. I remember first noticing this improvement when at the mall. : ) I actually felt like I was a part of the human race again and not looking at everyone through a glass wall. Hope that makes sense.

Have you been tested for nutritional deficiencies ? We have a local lab who will run these without a drs order.

Or have you looked at what Dr Wahls or Dr Perlmutter have to say about your spect scan results ?

One more idea .... I've heard that oxalates can cause a variety of symptoms for some.
The yahoo trying low oxalate board is the most up to date info I know of but it's been a couple of years since I was on there. My oxalate reaction happens within 20 minutes and takes at least an hour to stop. It might be worth avoiding high ox foods for a few days. They recommend longer but your diet is so clean you might see a difference right away.

oops. almost forgot. I saw that your taking prozac and was wondering if that could be causing symptoms. I'm just coming off or lowering most meds and supplements that effect my brain because it's just too sensitive to these.

Hope you figure this out. tc ... x