- CASE FILE
Please help! Been dealing with EXTREME exhaustion for 16 yrs. Joint, muscle pain. Been misdiagnosed multiple times by multiple specialists.
ABOUT THIS CASE FILE
When I was 23(2003), my nightmare began. I had always been very healthy. I went to bed one night after a long day of taking care of my babies, my husband and our home. I woke up the next morning and before my eyes even opened I knew something was very, very wrong. My eyeballs felt sunken back in my skull. My eyelids felt thick and heavy. My body felt completly weighed down. It took a hugh amount of effort just to get out of bed, which was completly oppisite of how I normally started my day. The entire day was excruciating. I was always a person that was constanting going but, that day I couldn't do much of anything. Picking up my children was almost more than I had the strengh or energy to do. This was SO not like me AT ALL! My husband use to say I was like the Army because I got more done before 9 a.m. than most people did all day all. That evening, when my husband got home, I went right to bed. This was also so very out of character for me. Normally, I was the last to bed and the first up in the morning. The next morning I woke up feeling like nothing had happen. No fatigue, I felt like myself again. Life went on for about a month with no episode, so I thought everything was over. Little did I know it had only began. About a month later it happen again. With no warrning, no red flags, no signs or symptoms, it happened again. It was like someone flipped a switch and I felt like I had been up for days all over again. There was no gradual decline in how I felt during the day or days before this would happen. No way for me to know if I was going to wake up the next morning feeling like myself or like I hadn't slept in days. I would go to bed at night feeling fine, but get up the next morning and there it would be again. At first these episodes would happen one day every couple of months. Then it went to one day every month. After that it was two days a month. They just continued to increase in frequency until about seven years(2009)into all this. Then it was just how I felt every day. During the first several years it was near impossible to make any kind of plans because I never knew how I was going to feel. I've seen specialist such as endocrinologists, rheumatologists, neurologists, gynecologists, gastroenterologists, cardiologists, psychologists, psychiatrists to mention a few. I've been to doctors in four or five different states, as far as eight hours away from home. I have had sleep studies done, a MRI of my brain to check my pituitary gland, a MRI of my heart due to the tachycardia, a heart-catheterization, many echocardiograms, several EKG's, multiple blood test to check my thyroid functions, vitamin D and B12 levels, iron levels, lyme disease, epstein-barr virus, addison's disease and crohn's disease just to name a few test. Everything always come back negative. Always. How many times I've prayed for a test to come back positive for something, anything. But they never do. When I first went to the doctor, I was told I was suffering with depression, which I was treated for with several different types of antidepressants over about a three year span, none of which helped at all. My symptoms would come and go as I slept as though I wasn't taking any medication. I told the doctor right away I didn't agree with the diagnosis of depression. I knew depression didn't come and go so freely as a person slept. After the diagnosis and failed treatments of depression, I was told I had postpartum depression, then manic depression, after that bipolar Type 2 disorder, which I was treated for by a specialist eight hours from my home for over two years with antidepressants, antipsychotics and anti seizure medications, when he finally decided I didn't in fact have bipolar disorder. I kept telling the doctors I wasn't exhausted because I had depression, I was depressed because I was so exhausted. After the bipolar diagnosis and failed treatment I was told by a rheumatologist I had Fibromyalgia. Was treated and again, nothing changed. My episodes would come and go even while I was on all these different medications. I had vitamin B12 injections at my doctors office I had at the time once a week for months with no improvement. I've taken every over the counter mutivitamin on the market, as well as, some directly form doctor's offices, with no improvement. I had a food allergy test done in 2011. I wasn't allowed to eat any soy, gluten, wheat, seafood, dairy, corn or strawberries for a month. After the month was over, I could reintroduce one food a week until each item had been returned to my diet. I couldn't tell any difference at all. In 2010 I had a saliva test and blood test done to check my hormone levels. The results showed my cortisol and progesterone levels were low. I began treatment for this with cortef and progesterone medications, with no improvements other than my menstrual cycle had finally been regulated. The conditions, diseases and syndromes I've mentioned don't even scratch the surface of everything doctors have mention to me or tested me for over the years. It's been fifteen years of tests, medications, procedures and doctors and I'm worse now than when all this started. I can't make plans with my family because I never know how I'm going to feel. I've lost so much time with my children and my husband. Time is something you'll never recover. I've lost so much with my own children that I'll never be able to recover. But, maybe someday I'll have grandchildren. I want to be there for them. I want to enjoy time with my husband. I can't do the things that use to bring me so much joy. My life is so boring. I was never one to watch tv. Never seem to have the time. I was always cleaning something, or playing with my kids or spending time with my husband. Now tv is my only pass time because it's all I have the energy to do, and some days I don't even have the energy to do that. There's a difference between living and being alive. I'm alive because I'm breathing in and out and my heart is beating, but I'm far from living. I'm turning 40 on my next birthday. Soon, doctors are going to be telling me it's just my age. I can hear them now, "Everyone slows down as they age." But that's not my isuse, I was 23 when all this started! How many times Ive been told "You're too young to feel this way" or "It's all in your head" or simply " Get over it." I didn't choose to become sick at 23 years old. Who would?! No one gets to coose to have an illness. However, if I could choose, at least I'd choose an illness someone could help me with. If you've taken the time to read my story, thank you. I hope and pray someone reads this that can help me. I know someone, somewhere knows what this is, or at least, is willing to try to help me figure all this out. That's why I keep going to doctor after doctor. I'll never find any help if I just sit home and say nothing.