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numbcy 05-10-2012 01:16 PM

Giving Up?
Hi All,

Haven't posted in a while; been too weak to be able to do so. Am still completely bedridden and am so weak I can barely type, concentrate, have not been able to brush teeth in months; teeth are now rotting out; pain in gums, unable to wash self, too weak, smell terrible;

I am literally rotting away in my own home, too sick to be able to take care of self. I tired and tried and tried and tried and tried and tried and tried. I am literally way too weak to barely make it down my hallway to the bathroom, much less make it to a doctor's appointment or be proactive anymore. I want to be proactive; I still want to get better; to find a cure to this illness; to find an answer ... and many "well-intentioned" family members keep giving their "advice", but I honestly don't think they know what they're talking about ... if it were that easy to get well from, I would've done it a long time ago ... I didn't choose to be rotting away in my own home; they judge me and think I'm making the wrong decisions; that I could "get up" and "do things" ... they don't know ... they are quick to judge, but reluctant to help ... they (my family) are literally allowing me to die a slow, torturous death, because they do not (and refuse to, and probably never will) understand this illness.

It all started many years ago, when my immune system started to break down, because of emotional stress from being raped when I was 13 years old; I believe this started the process of the physical breakdown in my body (though I also had much family turmoil and "discipline" and abuse, psychologically and physically, when I was younger than 13, but the rape seemed to be the big turning point in the breakdown of my body). I developed allergies to all sorts of things I was never allergic to before ... then I developed excruciating intestinal/digestive pains (after becoming an alcoholic at 16 years old), continued with severe emotional and psychological distress ... at 22 years old, I developed this excruciating, disabling neurological symptoms whenever I ate food (or any kind of digestion); it caused my head to feel as if it were on a very bad drug trip; pressure and swimming and like thick molasses, electric shocks in my body, in another world; a hellish "state of mind"; severe, unbearable neurological symptoms, that no doctor could explain; only when I ate solid food/tried to "digest" anything ...

ended up eventually going onto liquid diet, which caused even more of a breakdown in my body, because I now have not been getting adequate nutrition for years, and am now weaker than I have ever been, with barely the "stamina" to be able to stay alive; I struggle to survive every day ... only the bare necessities of "staying alive"; I am too weak to speak, to live, to brush my teeth, to walk, to wash, to barely write ... I am so weak ... I have been on liquid diet now (consisting of vegetable juice and a meal replacement protein powder) for almost 11 months ... I have tried eating solid food again, to try and gain the strength my body needs to live, but every time I try to eat, the neurological symptoms become so strong, that I am literally disabled and unable to move or speak or see, on top of already being so weak I can barely move ... I don't know how to do this on my own ...

FYI: I stopped eating because OF the neurological symptoms that food was/is causing ... the symptoms are not from "changes in body due to lack of food" ... I have heard that theory before, however the neurological symptoms started far before I stopped eating ... I stopped eating because OF the neurological symptoms; they are not a symptom of not eating ... so ... now, here I am ... to weak to move ... teeth rotting out of mouth, no strength, starving to death, too weak to move, struggling to barely stay alive, not sure of what to do, "well-intentioned" "advice" coming from judgmental family members, have tried so much, want to keep trying, but unsure of what to do, and don't have the strength to try anything new ... so ... what do I do??? :(

EagleRiverDee 05-10-2012 01:58 PM

Re: Giving Up?
IMO- you need to call an ambulance and be admitted to a hospital. Regardless of the cause, if you are so weak you can barely type and have difficulty caring for yourself and have no family support then you need to be in a hospital. This doesn't sound like typical chronic fatigue and does sound like it's got at least some psychological component that dates back to your rape. I don't have any advice to offer you on your condition but am absolutely positive you should be in the hospital based on your statements about your current condition. You need to have your physical health treated, and then also possibly seek psychiatric treatment as well, so you can figure out what's physical and what is psychological. But focus on the physical for now and call an ambulance or have one of your relatives take to the hospital.

numbcy 05-10-2012 03:32 PM

Re: Giving Up?
Thanks for the concern and reply, however I have already been to hospital several times; they look at me like I'm stupid or like I have psychological problems, though I've already been through extensive psychological counseling and resolved all/most of my past issues. But, the havoc it wreaked on my body is still present. Personally, I believe it has to do with my intestinal permeability/blood brain barrier permeability (I've been "diagnosed" with both) ... I think that food is leaking through my gut wall into my blood stream and then making it up to my brain (through the blood) and then passing through the blood brain barrier (where there is permeability) and I have food particles in my brain. That's my theory to the bizarre/disabling neurological symptoms that happen when I eat food... sound crazy? lol ... :( ...

EagleRiverDee 05-10-2012 05:23 PM

Re: Giving Up?
I understand that you've sought care before. My concern is that if you aren't eating, and you are unable to take care of yourself, then regardless of what is causing this you still need medical treatment. You state you are so weak you can barely type. You state your teeth are rotting out. You state you haven't eaten solid food in months. Your condition sounds very serious to me. I don't know what's wrong, and don't pretend to, but you clearly are not safe staying at home alone in that condition. You should be in the hospital. Whether the doctors know what's wrong with you or not, the results of your long illness sound as though they've left you in a very weakened state and that can be quite dangerous. You need to go the hospital for admission so that you can be treated for your decline in health. They can figure out why you declined after they get your strength up.

If you disagree, I would have to ask- if you had a friend in your current condition- what would you tell them to do?

mare50 09-12-2012 11:58 PM

Re: Giving Up?
I would probably call an ambulance to get to the emergency room and see what they do. Let them do any tests they want and maybe it can help lead to something that can be done. Nobody should judge you. Hopefully tests in the E.R. can tell something and give some answers. That sounds like your only recourse if nobody is helping you. That's what I would definitely do. Don't worry about the money either, just think about it being a lifeline at this point. All the best.

Wirthnet 01-04-2013 07:50 PM

Re: Giving Up?
My husband has all of the same issues you do. Nothing yet been diagnosed proper for him. A different diagnosis pretty much every time he has seen the doctors. Where are you at with things now what is your latest diagnosis and any improvements you have had?

mare50 01-07-2013 02:11 PM

Re: Giving Up?
Problem is the doctors cannot run tests specifically for Chronic Fatigue Syndrome. The tests they do can only rule out other immune diseases like Multiple Schlerosis, Lupus, etc. They will only treat what symptoms we are feeling. The most frustrating thing is that the blood tests, MRIs, CTScans all come back normal, even in the emergency room where I landed a couple of times. Next month when I go to my PCP doc I will ask if I can see an Infectious Disease doctor that deals with anti-viral issues, since I believe this is a virus of some kind anyway. Otherwise I just wait it out. Sometimes weeks, months. Been over 4 months now since the last bout. Just go to another baby step of improvement. What is your husband going through?

chattytalk 09-29-2013 12:20 AM

Re: Giving Up?
OHHe MY DEAR I have the same thing and have been searching for 35 years to find someone like me they all think I am crazy words don't even tell how my symptoms are the same and I have been everywhere even mayo clinic and they said nothing ive been to so many doctors its scary and feel at 56 its over there will be no answers I can barely get up after I eat and sometimes I sleep for days and if it gets a tad bit better when I eat it will get worse I can even drink water and the explosion happens in my stomach and then I feel drugged I cant drive when im like this ,

I don't have it every day but I have other weird neurological symptoms I have never ever found anybody so similar than you and I will never let them convince me it is anxiety but they are doing other tests now I can bring up some tests to you that I have had ..I sure hope to hear from you..thank u for your time!!!

kit13 11-30-2013 08:02 PM

Re: Giving Up?
My heart goes out to all those suffering with CFS.
People often seem surprised that CFS can be such a debilitating illness,but it can be.Sadly, 25% of CFS sufferers have it severely,and it can affect even children.
CFS sufferers in the 25% group,are often confined to their bed,with extreme exhaustion,headaches,dizziness,muscle cramps,sore throats and can't stand light and noise.Also they may have blurred vision and can even have difficulty swallowing.It can be extremely debilitating.
Often people think that CFS sufferers are 'just tired',but it is far more than this as they feel physically ill.
As a sufferer myself,and diagnosed when I was 16yrs I have experienced many symptoms.When I was told I had CFS,I didn't even know what it was.To be honest,I didn't understand the illness at all,when there was no definitive test.
I was extremely fit before the onset of the illness,apart from asthma,but nothing that impacted on my life greatly.The CFS started after pneumonia,and I struggled on before finally collapsing.
I then spent over 18 months bedbound,and couldn't even get to the bathroom without a wheelchair.Eventually though,I managed to get up everyday and was at least able to get out in a wheelchair.
The illness has altered my life drastically over 20 years,and this is something that I've had to come to terms with,like so many other people out there with illnesses.
The main reason for this 'post' is to highlight how CFS can affect people and to change misconceptions about the illness.
If you know someone with CFS just sparing the time and offering them your support can make all the difference.
Sending all CFS sufferers best wishes.

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