I have had chronic fatigue syndrome for over thirty years, actually probably all my life as I look back, but severe for thirty. It just got progressively worse. Worse than that was repeatedly going to doctors and being told there's nothing wrong with me. I go to bed feeling horrible and know I'm gonna wake up with it in AM....always! My mother has what I have, she had to retire after getting her degree in her forties!
As the years went by it just got progressively worse. So far it has destroyed my lifelong dreams! With no end in sight. When your dad takes you to Aruba and u can't get out of bed, when you're inline in a store and you have to sit on the floor waiting to pay, and i got up and went to work everyday holding myself up, till finally one day I couldn't stand at work, so like Ronetta, my friend came to get me and carried me to the emergency room. Unlike her my bloodwork said I'm fine. That was February 1995 and I'm still batting it. My symptoms are classic: horrendous exhaustion, extreme shortness of breath, always cold, I have the heat on in summer, etc, etc. So two years ago I joined a weight loss clinic and they did blood work and called me in a room to say your thyroid is slightly low and cholesterol high. I was thrilled....I finally had an answer. I go to a specialist, endocrinologist, he is hesitant to give me any thyroid pills, says I'm borderline which is almost normal, and I said I don't care how close to normal u think I am, I feel like I'm dying, so he tests me for hashimotos and sure enough I have the antibodies, so he puts me on low level thyroxin. Well,it does absolutely nothing ZERO for me. So I studied more and learned that thyroid and iron problems can go together, and I remembered being refused to donate blood because I'm anemic at the Red Cross. So why is it that the Red Cross can determine my low iron and MDs cannot? Even as recently as a month ago I went in and requested everything to check iron, I was crying, saying thirty years of my dreams down the drain due to this. My favorite saying is "all I wanna do is lie down" you learn not to talk about it, you don't look sick, because Drs can't find anything. People think you're a hypochondriac, so u act happy all the time, this is including people in my own family who don't get it. So sure enough the Drs office calls me back. I said let me guess, my CBC is normal? Yup. I said did u test like I asked with tear stained eyes ALL things related to iron, including transferrin and ferritin? Nope. And I did this in order to talk to a hemotologist, but you can't see hemotologist UNTIL blood tests show a problem. Mine didn't, but I've read a lot about ferritin and how it is missed and a lot of people go undiagnosed for years, like me. My heart feels tight, like it's being pulled on because it has to make up for the shortness of breath! Plus I have the heart palpitations! So i have an appt this month to request once again ferritin, I think I need iron transfusions but I'll probably never get them and I'm convinced I have maybe not anemia, but low iron, but I terrified of blood work saying I'm in normal range and being dismissed.
Recently I gave up all sugar and gluten and it helped, then I ate iron rich foods, felt better, actually, took vitamins too but I gag on them, so I dread them. Took a week off if the iron foods and I'm extremely sick again,that tells me it's iron related. And I stopped the thyroid pill and seeing the old geezer dr who is old school, narrow minded. I would like to be on natural thyroid instead. I've had better luck with a naturopath any day, but they don't take insurance. I'm on disability and I'm a landlord, I spend most of my time in bed wearing out expensive sheets I can't even walk my dog. The medical community has failed me! All I want is my dreams! I'm afraid to get my ferritin tested, I'm certain they will say I'm normal, but I don't understand how I can feel at death's door and have it not show up somewhere. I'm convinced this is more than thyroid!! Help...has anyone had this scenario? I am an outgoing person, my family too. Sick and tied of feeling sick and tired. The naturopath thinks it's adrenals, maybe but I'm convinced maybe I don't absorb iron well or something! Help!