My mind is very, very black right now. My doctor seems to think my problems are not important, my dad thinks it's all in my head or stress, and nobody seems to think it worthwhile to try to get diagnosed at this point. My parents have started saying, "Let's just help you deal with the pain," or "We'll go to a biofeedback center."
Well, ok, but before that --- I want a diagnosis, dammit!!!!!!! I feel SOOO helpless right now. My parents and the doctors have the power, and none of them seem committed to helping me get diagnosed, which I really need, because I HAVE to have something tangible to give to myself and to other people. They don't understand that.
This evening, after hearing from my doctor, has definitely been my darkest moment in a long time. After I got off the phone with my doctor, my family went for a walk and I was too sick to go with them. I really, really needed someone to talk to, but they left me. I sat on the floor of my room for a long time and just sobbed. Then I screamed, which hurt my throat like h*ll. Then I ripped up one of my childhood books, because I felt like I just had to destroy something, and the only way I could stop thinking about destroying myself was to destroy something outside of me. Then I sat for a long time in the middle of the torn, crumpled pages, crying. I'm crying again now.
I feel black, despairing, hopeless. I don't know what to do. I'm powerless. I don't even know what I'm powerless against. I need a name for what I'm going through and no one seems to want to give me a name. No one thinks this is important. I hate myself, I hate the world, I hate my parents, I hate my doctor.
Please, someone, tell me anything that will help me get out of this state of mind. I need to connect with someone who understands what I am going through right now.
Not having a diagnosis is one of the most disconcernting things about having this illness. Probably most of us have experienced your frustration, especially in the beginning years. The problem is there is no test to diagnose CFIDS. There's a reason why it is often called "The Mystery Illness".
I would do 2 things for your peace of mind - try to find a doctor savy about CFIDS. They do exist and can probably give you a good indication if this is what you have by doing tests to rule out other illnesses, such as Lupus, Lyme's, Hypothyroidism, etc. Next, I would do as much research as you can, not just on the Internet but there are many books you can read as well. It was through my own thorough research that I decided I actually had CFIDS, not Lupus, which wa s the original diagnosis, but that was 13 years ago when next to nothing was known about CFIDS and if they didn't know what the problem was they just threw you into some other category. It wasn't until years later that I found a doctor with experience dealing with CFIDS who concurred with my assessment.
I think one of the worst things about this illness is that you feel so sick (I thought I was dying in the beginning) yet no one knows much about how to define it, what to call it or what to do about it. I would become as knowledgable as you can so you can educate your family and others who may be dismissing you (there is also reading material available for famlies of those with CFIDS). This is a serious illness. If there is not an attempt by those near and dear to us to understand it, this stress can actually contribute a "flare up" of symptoms.
Thank you. Can I ask: I think it is very likely that CFIDS is what I have, but I feel like a fraud if I just diagnose myself. I think if I can believe that I really have an illness, that it's not just psychological, that I will be better able to cope and to get better. What are the advantages do you think of an official diagnosis?
I talked a long time to my parents this morning and they said that since the cause of CFIDS is unknown and treatment is basically just experimentation, that there is not much point in getting a diagnosis. Is this true?
Now my parents are trying to convince me it is all in my head and that my symptoms and fatigue are just the result of my subconscious desire not to leave them, which is BS because at the moment all I want is to get out of this house and this toxic environment as fast as possible. I feel so helpless and bombarded I am beginning to wonder if they are right, even though it doesn't make sense to me.
I'm sorry to hear about everything you're going through at the moment and understand the frustration at not having a diagnosis.
I strongly believe that you should ask to be referred to someone who can listen to you - ok, that perhaps means a counsellor, but it doesn't have to - just a third party who are one step removed from your parents. It also sounds as if your physical illness is now affecting your whole wellbeing and for that, it would definitely help to speak to an independent person.
When you know you're physically ill, it's frustrating having people suggest it's all in your head or you're causing it to happen because of other things going on in your life. I've been through this. However, one thing that's majorly important is to try to overcome some of that frustration in your situation. I don't think a diagnosis of CFIDS would improve your situation as there's not much anyone can do for this illness.
What I've found helps is to think, I know I'm not quite right and that there's something wrong. The doctors don't agree with me, but who cares? They're not me, they can't feel how it feels to feel exhausted all the time. I've stopped asking for a diagnosis. Do things you know you're capable of doing. They don't have to be big things to begin with, but do something that stretches you just a little every day. Do not go to bed at night hoping that you'll wake up feeling better. Accept that you'll probably feel the same - this helps get rid of early morning "urgh, still ill" depressive tendencies, which I found I was getting each day. Concentrate your efforts on doing things during the best part of your day. I try to do more in the early afternoon when I'm at my most awake.
I remember the fear and emotional struggles I went through back before and in the beginning of my diagnose. I knew there was something wrong with me, the fatigue, the brain fog, the pain. Each day I would go to work and with every passing hour my symptoms would worsen by the afternoon they consumed my very being. I would have nothing left. I would call my pcp doctor she would see me, run tests...this continued for months then after ruling everything out, she checked for tender points (I hit the roof)...I had thought it was my lymphnodes that were inflamed...she said, "You have Fibromyalgia." The diagnose came in April of 2004 tho, I have been sick the last 2 years.
My primary care doctor is young and had been in medical school during the 90's, and was able to diagnose me. But it only went so far with her knowledge of treatment. So I searched and found a specialist named Dr Kent Holtorf who treats FMS and CFS.
There are very knowledgable doctors across the world. There is testing available now that really gets to the bottom of the symptoms we have. An endocrinologist is a good place to start. There are tell-tale signs in our Complete Blood Count and Comphrensive Metabolical Count. Along with other tests that revealed a Compromised Immune System and active chronic viruses such as CMV, HHV6, Mycoplasma Pneumonia and yeast ovrgrowth.
Treatment consists on Natural hormones, Herbals, Supplements, and some prescription medicines, it's a 6 stage treatment protocol to get to the maintenance stage. I have written posts under Fibromyalgia and Environmental illnesses.
I have been under Dr Holtorf's care for almost a year. I have seen positive results, were my symptoms had been cleared...but, each time I went back to work I fell sick. So, he asked me to take a test for neurotoxins; which can be from mold, fungi, or other issues; it's called Sick Building Syndrome. I tested positive, since September of 2005 treatment was added to deal with the elimination of the toxins. I am amazed many of the symtoms have gone, others are subsiding with each day. I am feeling much better And since I have had previous days free from symptoms I am chosing not to go back into that workplace.
This is not to say that your underlining problem is the same, but to share with you there is hope and viable treatment for anyone sick with FMS or CFIDS also know as CFS. We are in the right place and the right time for help, so please do not give up. You may share this with your family, my heart goes out to you and to others who have not found medical help, yet.
The Fibromyalgia and Fatigue Centers are now across the United States. Dr Kent Holtorf, who is successfully living and working with CFIDS started these Centers after researching treatment for himself and then helping over 3500 people who have been sick. I thank him every day for giving me my life back.
This post is just like looking in the mirror! I was just talking today to my mom about how I'm on the verge of crazy from this no-diagnosis thing. I have been sick for 6 months with no relief & NO DIAGNOSIS! Lately they keep pushing me to take an anti-depressant to give me energy, but there's nothing wrong with my mood except for the fact that I'm so frustrated from feeling like crap all the time. Anyway, I know that wasn't helpful in any way, I just wanted to let you know you're not alone!!
Hi, Casey, that was helpful, as were all your replies. Thanks.
I am feeling a lot better now; been working through my issues. Kiya, I am already in therapy (I have social phobia), so you don't have to worry about me going overboard; I have a fair amount of control and my psychiatrist is great. She doesn't know what's wrong with me, she has no idea how much of it is physical and how much psychological, and she says so; she didn't tell me it was all in my head, which was really nice and reassuring.
I know I have to work on not being so emotionally dependent on other people and their opinions, and on staying strong in myself, even if others don't agree with me.
Thanks again -- it's good to know I'm not alone, it really is.