- CASE FILE
Dismissed my doctors, I have been suffering since age six and have never been told why I swell and have constant pain & inflammation.
ABOUT THIS CASE FILE
I preface this by saying I have always been a happy, driven person with a positive outlook on life. I love being a mom. I love giving back to the community around me. I have never done any type of illegal or prescription narcotics, and I don't drink alcohol. In fact, my body becomes so inflamed after a glass of champagne or wine, I usually end up at the urgent care forced to take shots of anti-inflammatories. Doctors have not been able to tell me why I have been experiencing debilitating symptoms for most of my life. In fact, through all of what you will read below, I met nothing but doctors who were the most uncaring individuals you could ever hope to meet. It's been heartbreaking. I was dismissed as "crazy," told that I "must be drinking to much," and a Mayo Clinic doctor in Jacksonville, FL told me I as "just getting old and fat" and referred me to a psychologist before he even took the first test. Even the Mayo clinic found nothing after week of tests following the worst bout of my symptoms. I have had dyslexia, learning to read and write was very hard, and this is worse during on of my episodes of inflammation (I now believe this to be caused by inflammation of my brain because I have fluid that leaks out of my ears onto my pillow at night). At six-years-old I began to have pain and swelling in my feet. By the age of 12 the swelling and nerve pain in my hands forced me to quit playing piano. At age 16 I contracted the Mono virus and it took me three years to recover. My tonsils turned black and lymph-nodes never seemed to heal. I ran a constant low grade fever and suffered extreme fatigue off and on. Also, my monthly periods became unbearable. I had extreme cramps and bloating from my rib cage to my feet each month. I wasn't able to enjoy much of anything in life during my cycle because the pain from swelling would be so severe. I had my first child at age 21. I felt okay, pretty good actually, through pregnancy, but when my son was born I went through postpartum depression with psychosis for about 6 weeks. After that my brain felt normal, less inflamed, but my body was so fatigued I could hardly stand more than a few minutes at the time. I fainted on more than one occasion for seemingly no reason. This went on for about 6 months. When my son was two-years-old I began falling. I would lose all strength in my legs when getting in or out of my car, or if I picked up my child. I struggled greatly with memory loss, brain fog, and had a hard time working as a waitress during this time because I was so weak in my arms and legs. My lower back always felt like jello, very weak. Sometimes my lungs didn't want to fill with air, it seemed. At the age of 24 I developed a headache that lasted 2.5 years. At age 25 my lungs became inflamed and I coughed every single breathe for six months straight, but my doctors couldn't find anything wrong with my lungs. I had one doctor accuse me of being "dramatic" after I struggled to breathe while walking from my car into his doctor's office. He was one of many doctors who were so dismissive and cruel. At age 26, after being in CONSTANT head and body pain for two years, struggling to handle my desk job and college classes, I was sitting at my desk one day when I felt a "SNAP!" in my head. From that moment forward I was unable to breathe deeply or move my arms and legs easily. I was paralyzed for hours. I feared a mini-stroke. Again, doctors could find nothing wrong. My fatigue and brain fog became unbearable. A few days after the SNAP I had more mobility, but I was in constant, debilitating pain from head-to-toe. I was taking 8-10 Excedrin tablets a day just to get through work and school. Eventually, I was forced to drop out of college for that semester. At age 27, a year after the SNAP, I began suffering with inflammation and low-grade fevers that seemingly had no cause, my monthly menstruation became much worse, and I had my first "attack." I was driving my car, happy to be having a dinner party that night with my best friend, when it felt like The Hulk punched me in the chest. I immediately went blind and deft and paralyzed on the left side of my head, face and body. Paramedics recorded an extremely high blood pressure and heart rate, but doctors at the ER dismissed it as an anxiety attack (even though I wasn't anxious about anything at that time). After that, it felt as though I had a grapefruit trapped in my chest and throat 24/7 without any relief. This grapefruit would sometimes feel as if it were the size of a lemon, but then it would grow as if it were as big as a cantaloupe. When this would happen I would get dizzy and black out. This went on for months. I couldn't swallow or breathe easily, but I began taking Cymbalta and it didn't make my symptoms go away, but it helped me cope better with my symptoms. About six months later, my migraine left during my second trimester of my second pregnancy, but returned four months after my daughter was born. During my pregnancy I had severe fatigue that made me unable to stand for any length of time. I also had a brief bout of mild postpartum depression after her birth, but no psychosis, fainting or dizzy spells like I had following my first child's delivery. Once my daughter was born, and a couple weeks later after the baby blues had passed, I felt GOOD, better than ever, for about 3.-4 months. I had energy and no headaches. However, like I said, the headaches returned and haven't let up since (Sept 2008-Aug 2019). Once the headaches returned in 2008, I can only describe what I went through as "hell." I couldn't handle loud noises because my ears felt so sensitive. My brain was in a constant fog and it felt like my brain was frying bacon. I felt and heard a constant "sizzle." I had chronic inflammation in my back, shoulders, neck and spine. I felt too tired to carry out the simple day-to-day stay-at-home mom tasks. Just doing a load of laundry was a MAJOR feat! I suffered for three years with this and then my body simply crashed. It was as if my body couldn't take one more step forward. I woke up on the floor one day not knowing how I got there and ran a 104 degree temperature for almost a week. After that week, I still had the headaches, but they were not as severe so I was able to get a new job as a staff writer at our local newspaper and manage with several doses of Excedrin. Four months into the job I woke up on Christmas day 2011 with what I thought was the flu. However, it never went away and became increasingly worse as weeks passed by. The sizzling, crackling feeling in my head became worse than it had ever been, I couldn't write a sentence, much less complete my work duties. By May of 2012 I had to quit my job because I couldn't complete my assignments. Not long after that I developed blisters covering my eyeballs, all around my eyes, and sores that never seemed to heal on my arms, legs and buttocks. I developed blisters on my labia, even though I tested negative for all STD's. One older dermatologist told me he'd "NEVER seen anything like it." I developed a horrific allergy to protein and about half the normal foods I had eaten my whole life. At one point, I spent about three months unable to remember how to spell words, and reading a single sentence made me feel as though I had to take a 3 -4 hour nap. I lost about half of my hair, was covered in bruises and red rashes that would come and go. I had to get constant shots of anti-inflammatories and antibiotics, but they only half worked at alleviating my symptoms. I had pain that shot down both thighs and through my hips that was unbearable and constant for more than 3 years. I was unable to work during all of this, obviously. I didn't shop for my own groceries or wash a load of clothes for an entire year between 2012 - 2013. I was almost completely bed ridden. I lost 100% of my hearing in my right ear and half my hearing in my left ear for a full year. That was terrifying! Perhaps the worst symptom between Christmas 2011 and March 2018 was relentless, horrendous back pain. It was so bad at times it felt like I was having to go outside of my body just to cope. (This pain did lessen greatly after having my gallbladder removed in March of 2018, but the pain isn't completely gone). Finally, in 2014, my dad got me an appointment at the Mayo Clinic in Jacksonville, FL. because I wasn't getting any better, but only worse with each passing day. I had to have a nurse friend drive me and take care of me that whole week while I stayed in a hotel and went back and forth to the clinic for tests. On day one with the doctor there, the doctor told me "I don't think anything is wrong with you. I just think you are getting old and fat. I will run these tests, but we will not find anything. I think you need to see the psychiatrist." So, the money we spent at Mayo was a waste before I even began. That doctor did not advocate for me. After a week, I cried all the way home because I left with no answers. Finally, in September of 2015, I was getting worse and I was convinced I was close to death, and I found a holistic doctor in Atlanta who worked in conjunction with a medical team. They could find nothing wrong with me either, except that I was in adrenal fatigue, had chronic fatigue, confirmed my migraines, confirmed my body pain, and confirmed that my skin wasn't healing. The only thing that showed up on blood work was that I had extremely low levels of lymphocytes and I was very depleted of vitamins and minerals due to intestinal inflammation most likely. This doctor told me she suspected I could have something like an undetectable strain of Lyme Disease, but without it showing up on blood work, it was only a guess. I wanted them to do more testing and research, but by this time my family had run out of cash to help me. So, the doctor gave me a long list of vitamins and supplements to begin building my immune system back up with. After three months of vitamins and supplements and a mostly liquid diet void of protein, I began to get my strength back. I still had constant head and body pain, but my energy levels were up and I started to get my brain back. As of today, I've been able to return to work because my brain works again finally. However, I visit the urgent care about every other month due to unexplained inflammation, swelling, abdominal pain, fevers and migraines. I have missed a lot of days of work due to my symptoms. Still, no doctor can tell me why. I recently went on a vacation with my family and walking around was very hard because of the extreme swelling of my legs and feet. The swelling in my arms and hands made me miserable. My face swells also during my episodes. My mobility was so much slower than that of my family. Today I'm 40 years old and full of life and hope and goals, and I've learned to manage my symptoms, but am ready to know why I swell and suffer inflammation as I do. My grandmother and mother has chronic pain and inflammation, and my grandmother's symptoms are very similar to my own. There is some evidence of neurological issues with both of us, even though MRI's are clear, all blood work is clear. About two years ago I began having fluid run out of both ears onto my pillow. This has happened weekly for two years. I've pretty much had a sore throat since I was 16 years old, as well. Please, if you can help me, my daughter feels good, but is starting to have her hands swell as mine did at her age. I don't want her to go through what I went through on any level. Please, help!!!