• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Very sad news from Denmark:

Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
leela, thank you! I have many similar stories, unfortunately. When I was first sick with CFS, I had no idea what was wrong with me. I had a diagnosis, but I was told nothing could be done. I was a freshman in college and had to quit school. I couldn't function. I was a very active girl and went into being unable to get out of bed to then not sleeping. Because I was told that I would probably not get well...yup, back in 1989 I was told that, I started telling myself I could will it away with help, so I started seeing a shrink. No doctor knew what to do; they all told me I was nuts and asked me if I was on drugs or if I had been molested by my deceased father. Was there abuse? You are hiding something....and this from regular docs. The ones who were supposed to help me.

After several tries of trying to get me on an antidepressant so that I could sleep (I wasn't getting one wink of sleep due to high cortisol levels through blood testing and a screwed up thyroid that the endocrinologist blamed on depression). I started having reactions to almost all antidepressants and at 18 years old, I came undone. Everyone knows how awful not sleeping is and being up all night from it. And then to be 18 and to be told..."Well, welcome to your new life, you may never get better. Just preparing you." after you were expecting a whole life ahead of you of happiness, a career, a husband.

No doctor knew what to do back in 1989 and so I was thought of as being nuts, even with the diagnosis of CFS or back then, CEBV. So, I started feeling that I was nuts because I had never been sick like this ever. It was so sudden and nothing was making it better. I was getting worse.

So, the shrink I was seeing admitted me into a psych ward, yet again. Why? I wasn't suicidal, but my weight dropped and I looked emaciated and so I seemed to them, to be severely depressed. I actually wanted to go in because I thought that it would cure me because I was being told by the shrink that it would and that's all I wanted. I wanted to get back to college, back to tennis, back to the love of my life.

They put me on a children's floor of a mental ward so that I wasn't in with severely disturbed people. The doctor was at least kind in that regard. They finally got me on a medicine so that I could sleep. So grateful for that. But, they started brainwashing me and telling me that I wasn't really physically sick. EBV wasn't a legitimate illness or virus. And, again....being 18, I started to become brainwashed. I was in there for 2 weeks, but when I came home, I was a different person. I was convinced that I was doing this to myself, because I had been told that and I was young and vulnerable. I was young and scared. I had no idea what an adrenal gland was, or a thyroid.

I blamed myself. I was told that my father's death was what was causing me to be sick. So, I fell for it because I wanted to get better and I would do anything. I tried to grieve his death, but I couldn't because that wasn't what it was.
After about 7 months of being super sick, I really started questioning their theory. I would sleep a ton and never feel good or rested and I wasn't grieving my father's death because I had already grieved. I would have fevers, swollen glands, I had no period, my thyroid was still a mess and I would have severe muscle twitching that would keep me awake all night. I had fever blisters that were constant. Physically, I was a mess. I was sick and I finally knew, this is an illness. I am not mental.

Anyway, you get the gist. I've been through a lot with this thing as we all have. It was an awful experience. Interesting, because I am older now and have so much on paper about my illness, including all of the other ailments and conditions I have. No one ever says, "She's not sick." They take me seriously now....however, they don't take CFS seriously. So, no matter what...that is forever the biggest issue. I have to say, I have Fibro, I have IC...that is taken seriously. The last allergist I went to said to me, "CFS is hard to get a diagnosis for. You have to go to Harvard for that diagnosis." I thought..what? Really, I never heard Harvard as being the place to go to get a diagnosis. They don't know anything.

Question is; will CFS or ME ever be taken seriously? Denmark is proving that we have a long way to go. Probably not even in my lifetime.
 
C

COACH

Messages
50
Misfit Toy said:
By no means is this the same thing, but years ago, I had GERD and an ulcer. At the time, there was only one doc in my area who treated CFS. He had no hospital privileges. So, I went to a gastro doctor. He put me on Prilosec. I barfed it up. I barfed everything up. Food, meds, you name it. I had to sleep upright in a chair. In other words, I didn't sleep. I went to a doctor who admitted me into a hospital. After a week he discharged me. I was better, but the problem came back on with a vengence. the IV Zantac didn't do the trick. My CFS doc with no hospital privileges could do nothing. Hence, I will never go to another doctor who doesn't have pull with a hospital. PTSD.

When I went back to see the doctor, he thought I was nuts. I had CFS and to him that was the same thing as being nuts. Also, a week of being in the hospital should have cured my stomach. I was 20 years old. Anyway, he said, "the only way I will help you is if you go into a psych ward." I went to other gastro doctors and because they would all talk to "HIM" they thought that I was crazy, too. So, begrudgingly, I went into a psych ward. I was too sick, vomiting and absolutely scared out of my mind. I couldn't go on vomiting and not being able to eat. So, in I went.

After a few days of being in there and pills being given and thrown up, a nurse called my mom at 3 am and told her, "you need to get your daughter out of here. She is sick. She is physically sick. She is sitting in the tub vomiting because she is so sick and exhausted, she can't lean over the toilet anymore. She doesn't need to be in here. She is fine mentally"

In that time of being in there, I watched a guy telling himself not to kill someone, another guy defecated in his bed and the girl I shared a room with heard people talk to her. It was a really great experience.

Even just writing this makes me cry.

My mom came in the next day like a warrior and got me and told the doc, "I am taking her out of here." His response, "you can't." She did and she told him, "I will sue you like you have never been sued before."

To cover his ass, he admitted me into the medical floor of the hospital. I had tests done and I had a bleeding ulcer. My esophagus was bright red. I ended up being in the hospital for 4.5 weeks. 4 weeks on the medical ward.

I wasn't forced to go in the psych ward. I could leave. But, I was needing help and I couldn't get it because of my CFS diagnosis.

I feel so sorry for this girl in Denmark. IT's really backwards. Absolutely. They HAVE NO RIGHT to do this. It's insane.[/q


I am so sorry you had such a horrible experience. When the nausea/vomiting is that severe you are pretty much willing to try anything if it will make it stop. I have been admitted twice because of it. The doctor you saw should be sued! I understand though that time and energy that goes into a lawsuit is very difficult. It is so sad and angering that some doctors just turn to a psychiatric diagnosis because they do not understand an illness.
Click to expand...
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I always say with this illness, "this is the worst I have ever been, or this is the most pain I have ever had," but I can tell you, as you may know COACH, I felt like I was being tortured with the pain in my esophagus and stomach and not being able to lay down without bile coming up. I don't know how I did it. I was so sick. I was being tortured and feeling nuts due to pain, vomiting and lack of sleep. My mother was beside herself and we had no idea what to do. Then going into a mental hospital. I was so desperate. I wanted to die. To be surrounded by such unstable people who had nothing going on like I had. They would try and make me eat and I would throw up right there after eating. It was the most agonizing time. This illness is so demeaning. It occured due to being on KM. Ever hear of it? A liquid substance for CFS or people with illnesses that some woman was selling at a support group meeting. It tasted like flowers and burned a hole through my stomach.

I am sharing, but it was one of the most upsetting and embarrassing, in a sense, times of my life. At the time, my boyfriend could not understand why I was in a psych ward. I had no choice. It was that or God knows what. Death.

So, about the woman in Denmark. I want to go there and get her and bring her here. There is no common sense. And what's interesting to me about the great old US of A....you can't go into a mental hospital anymore, at least not for too long. The insurance company won't pay for it. However, they will pay for you to go to rehab for a month. Does that make sense? So, if you are suicidal, you are allowed to go in for a day or 2, but then you are released unless you are willing to pay out of pocket. And in Denmark, they will make you go in and stay in. NUTS. And to be held against your will, who ever heard of such a thing? You would think she committed a crime. It's absurd. Went to FB site that someone put a link too, but it's all in Dutch.
 
C

COACH

Messages
50
. It occured due to being on KM. Ever hear of it? A liquid substance for CFS or people with illnesses that some woman was selling at a support group meeting. It tasted like flowers and burned a hole through my stomach.



I have not heard of KM but it definitely sounds like something to stay away from. You should have never been put into the position where your options were go home and die or go into a mental hospital. I am glad the nurse and your mother took action.
 
C

COACH

Messages
50
Please check out all the new information on Justice for Karina Hansen's facebook page and website. There is a new petition specifically to get her a second opinion. There is also a thunderclap to sign up for. On Feb12 Karina will have been held at Hammel for one year! She needs all of us to help her and her family get her the correct treatment. Here are some links to get you started. Thank you!
1. change.org link http://chn.ge/1itYO0i
2. thunderclap link: http://thndr.it/1nUTVRm
 
You must log in or register to reply here.