- CASE FILE
Many diagnoses waste-basket diagnoses given, no treatment has helped to date. I've only gotten worse, if anything. Just want to be me again.
ABOUT THIS CASE FILE
Mysteriously got very sick in 2002 when I have never been sick prior to this. Threw up 25 times, and never recovered from the fatigue, body aches, and what feels like a total system shut down much of the time. Intense pain attacks and spasms come on randomly, but constantly at a 6 or 7 on the pain scale as my regular. I can't sit for long periods of time without tears (even driving more than 10min), which is troubling because I'm a Psychologist, and sitting is my job. I experience bone-crushing fatigue that makes getting from my bed to the couch difficult. I now take stimulants because I was falling asleep while driving to work. Sometimes I have increased sensory sensitivities - on pain days, it feels like my ears are muted and I can't hear; no one can even lightly touch my back near the spine or my hips, where my torso meets my legs. Even light touch sends pain signals screaming through me. My legs and arms become purple and blotchy when I'm in pain - they don't swell, but feel swollen and are highly discolored. I've attached pictures of this, but it can get even worse than this shows. same discoloration on my arms. My knees turn almost purple. That's how my husband knows I'm in pain, since I don't like sharing that with people. I usually get the response 'but you don't look sick'. Or I feel like people think I'm faking, since I put so much effort into trying to be as normal as possible. Constantly feeling like I want to stretch my muscles but I can't do it enough to satisfy the restlessness. My legs are constantly jumping around, and my hands shake sometimes. Bruise easily - just poking me will lead to a bruise. I have many, many small bruises all over my body on any given day. I experience extreme heat INTOLERANCE - when I'm too hot, I feel like I'm having a tantrum like a 3yo. I can't think, I can't process anything except how hot I am, and I frantically search for air conditioning. Now my hair is falling out at an alarming rate, and my period comes like every two weeks and very heavy. I used to think that my reproductive system was my only system that worked well, and my period was almost non-existent before having an IUD inserted after my daughter was born. This did not happen with the IUD I had after my son was born. I feel like I experience more things, but I rarely talk about this because I know no one around me understands what I go through. I spend a significant amount of energy trying to not "look sick". I realize I should put this energy into something productive; however, people just don't understand. I've said at times that I wished I had cancer, because at least then I'd know what I'm up against - what I'm treating. I don't have that benefit. I've been given many diagnoses - Lyme disease, Epstein Barr Virus, Fibromyalgia, Dysautonomia, Chronic Fatigue Syndrome, etc. but no treatment has even slightly improved my symptoms; I've only gotten worse. From 2002-2010, I was functioning relatively well despite the pain and fatigue. I controlled it with medication and went about my day. I had pain days where it would be worse, but the next day was back to a 3 or 4. Then, after my Residency which was highly stressful, I quickly became worse to what I am now. Now, it's every day, all day and all night. Without my medications, I can't get downstairs without needing a break sitting on the couch. I could sleep all day, but never feel rested. Then at night I can't sleep through the night because I'm so hot and/or am in pain. It feels like the achiness you get when you have the flu - where you'd rather cut your legs off than endure the pain, but all the time without relief. Motivation to do anything at all requires a significant amount of effort. And leads to the "I'm a horrible mom" thoughts, and thinking my kids deserve so much more than I'm able to give them most days. And that leads me to feel frustrated, discouraged, and hopeless. Outside of the self-criticism surrounding my symptoms and how it negatively impacts every facet of my life, I'm not depressed. All I want is to be a normal human being, a mother to my young kids, a wife to my husband, and a good friend to my friends. I don't even see my friends anymore because I'm too tired after work to do anything. I'm trying Bee Venom Therapy now - where I sting myself with 10 live bees, three times per week in the hopes of relief. I'm about a year into a three year protocol. Right now, I just take medication to cover up the symptoms so I can work and be functional; however, with the current opioid crisis, doctors are trying to cut my medications down. To top everything off, I metabolize medications like four times the rate of everyone else. I can't take the birth control pill because I will get my period much sooner than the sugar pill week, and need two or more rounds of antibiotics for them to be effective. I had to take a drug test for life insurance, and my pain medication didn't show up in my system, when I had just taken one like an hour before, and had been taking them daily for the previous seven years. That leads to a constant cost/benefit analysis "should I take it now" "if I do, how long will that get me" "if I go over today, what day can I be nonfunctional". It's exhausting. I wish I didn't have to think about medication at all - I don't want to take these medications, but if I don't I'm a useless bump on a log. I can't do anything at all. At this point, 17 years after I first got sick, I feel like doctors just dismiss me now because I have the buzz-word diagnoses where doctors think I'm either faking, have a low pain tolerance, or am drug-seeking. I'm actually anxious when I meet new doctors, because I know what I sound like and what it looks like. I've been treated very poorly by doctors, insurance companies, pharmacists, etc. In actuality, I have a very high pain tolerance - my mom said that if I said something hurt when I was little, she had to act quickly because that meant I was in an immense amount of pain. All of my blood work always comes back as normal - except my EBV number - it was something like a 4, when the appropriate range is something like 0-0.6. That was in 2015. One test was positive for Lyme, but ones before that were negative. I think my doctor is frustrated with me, because nothing he's recommended has led to any sort of change for the better. I don't understand why nothing works for me. I don't know what to do. When I saw this show, I had to jump at the chance because I'm desperate for answers. I'm desperate for something, anything to work. I've tried just about every treatment - traditional and non-traditional - recommended to me, ever. Nothing works. I need help, not just for me, but for my children. I spend my life helping others as a Psychologist, but now I need help too. I'm hoping someone out there has the thing I need to turn my whole life around.