- CASE FILE
Two years of mainly living in bed! Exhaustion, fatigue, pain in joints/bones, heat intolerant and painful swelling.
ABOUT THIS CASE FILE
My issues started after the Houston area was hit by Hurricane Harvey in late August/ early September of 2017. We lived in a rural area of Texas about an hour outside of Houston, TX. Our house had unknowingly taken on water and grew mold. My conditions started with me continually falling ill with colds, breathing issues and similar issues that would become more intense every time I came down with the illness. I would often be sick twice in a month. My body was not recovering and I started sfaying exhausted. By the time I started to seek help, I had been sick 13 times in the course of 7 months.
The biggest few examples I can recall were:
-Mid October 2017, I fell ill with Strep Throat and started the course of antibiotics to treat the problem. I was not really "feeling better" after the zpac so the doctor prescribed a 10 day dose of antibiotics to attempt to eliminate the infection. Just before Halloween, my father had a heart attack and admitted to the hospital. It was a very traumatic experience with him coding several times in front of me and put me under a great deal of stress. I ended up remaining sick the entire two month stay that my father was in the hospital. My mother "banned" me from the ER for fear that I would give him Strep even though I insisted I was negative for strep.
-End of January 2017, my father's funeral. Unfortunately, we lost my father at the end of January. I had already been out ill that week from work and had been diagnosed with bronchitis due to the chest pain, congestion and coughing. By the time of the funeral, I had been ill feeling for several weeks and taken two rounds of steroid treatments. Nothing was working and I had to bury my father while feeling miserable internally and externally.
-March 2017, I still was feeling run down from my previous bought of bronchitis and we had plans to go out of town for a wedding. I ended up taking additional time off work to try to rest and recover at home before we left for out of town. I started being unable to control my coughing at all, breathing was very difficult and I was miserable at the point. After another doctors appointment, I was diagnosed with pneumonia. That three day weekend was mainly spent with me resting in bed with the exception of the few hours I went outside for the wedding festivities. We ended up leaving the reception after an hour so I could go back to bed.
Finally in July of 2017, I had enough and started seeking answers. I started with a pulmonologist since I was having respiratory issues. He diagnosed me with Asthma which I have never had an issue or diagnosis before. He prescribed me a nebulizer with albuterol sulfate and sent me home to rest. After three doses of the breathing treatments my entire body swelled and turned deep maroon in color. My heart was racing, I was in a cold sweat and light headed. I thought I was having a heart attack. My husband was not home at the time so I had to call him and tell him he should start to head home from his hour away baseball related event as I was pretty sure it was serious. I was hit with a wave of mental fog, exhaustion and pain. My head felt like it was caving inward from the pressure and my arms felt like my veins were collapsing. The symptoms caused me to not be able to sleep due to fear of dying in my sleep and pain. I was afraid to go to the doctor and waited almost a week to contact my doctor. After arriving at his office he performed several tests for stroke and things of that nature which were clear. He sent me to get bloodwork and schedule an appointment for two weeks out. I was floored by the reaction as I was still maroon in color and very weak.
I was able to obtain my lab results from the bloodwork and saw that things were abnormal. I was not getting better and my head pain was to the point I thought it was going to be the end. My husband loaded me up in our truck and we drove 30 minutes to the closest ER so I could be evaluated. We brought our test results from a few days earlier so they had something to compare to. They treated me for pain and advised I needed to seek a rheumatologist immediately.
The following several month timeline between the nebulizer, ER and after is a blur to me as I cannot recall everything that occurred. I was bed ridden at that point, unable to move without intense pain throughout my limbs, chest and head. I attempted to work from home to maintain somewhat of a routine. During that time I considered suicide and kept giving myself one more week. "If the pain does not stop in a week, I cannot live like this." Those thoughts still return a year later and I do my best to push them away but it is getting worse daily. I learned i was intolerant to heat and had to be in the air conditioner with a fan pointed at me at all times otherwise my skin would burn and I'd become very weak again. This is still the case and I own a bed pad that cools the bed 12 degrees in order to maintain a cooler environment.
My first of three Rheumatologists was a man. He was very distracted during my entire appointment, kept asking the same questions and didn't seem bothered with my state. At that point it was difficult for me to drive and relied on my husband or family to drive me to my doctors. The rheumatologist said I have Lupus and performed bloodwork. He did not want to prescribe any medications, including pain medicines until my blood results were in. My markers for Lupus came back on the "good side" as he put it. He prescribed me a prednisone pack and told me to take a single aleeve for my headache. At that point light was burning my eyes due to the intesnity of the headache. I decided to try the Prednisone pack and aleeve as instructed but was still unable to get out of bed most days. I followed up with him one more time and he did prescribe naproxen for my headaches. While it didn't alleviate them, it at least allowed me to open my eyes and watch television while in bed. Finally in December 2017, I had enough of his vague attempt to treat me and sought more answers.
My second rheumatologist was recommended to me via internet reviews. Unfortunately, she was on maternity leave so I saw her back up doctor at her office. This doctor seemed to genuinely care. At this point, I had to return to work in order to maintain my medical insurance. I was working limited hours but it was 35 miles away one way. The new doctor diagnosed me with reynauds phenomenon because my hands were visibly purple, white and red. I was able to show her the Lacey red rash that would run across my skin at random and she said that was common with people with my issues. She diagnosed me with Lupus and an unknown autoimmune condition. The treatment was duloxetine, plaquenil, tramadol and amoplodmine. She started blood tests to try to find which one it was. I was negative for rheumatoid arthritis, schlederma and several other common autoimmune conditions. Unfortunately, her temporary position was over and she went back to working full time at her regular office 35+ minutes away. I attempted to see her one additional time but the additional 70 minutes of driving myself was too much on top of my hour plus one way trip to and from work. So I sought assistance with the third rheumatologist, the doctor with the great reviews.
Thankfully, she had all of my labs and history but unfortunately when she walked into the room, she didn't even bother to listen to my history and told me my pain was from fibromyalgia, lupus and unspecified connective tissue disease. She recommended I seek pain management and see her again in 6 months. I was floored and didn't know what to do. I felt brushed off again and became extremely depressed again.
My pain management team has found a bulge in my L5 and spondylosis in my hip joint. They have treated me with epidural pain injections which did little to alleviate the hip pain and started me on tizanidine and tylenol #3 with codeine. They also increased my duloxetine time the max recommended dose in order to help the skin burning pain. It has decreased the pain for the most part and I am able to wake up, work an 8 hour day and go home.
Due to the mold in our home in the country, my husband and I decided to purchase a newer home in November of 2018. I have not been able to unpack my belongings. I cannot cook meals without being exhausted. Even making a sandwich for my husband is a huge effort. My pain is constant and causes me to get little sleep. The headaches have subsided but the "feeling" inside my head is still there. It is almost like a twitch inside my brain. My arms, hips, ankles, feet, hands, chest and ribs all constantly hurt even on my medications. I have become intolerant to temperature. If I cover my skin, I become very hot and have to have cool air blowing on me otherwise I get very weak and tired. If I leave my skin uncovered, my body aches and becomes very cold. There is not an in between. I have not been able to lift over 5lbs in over 2 years now. My body is so weak and feels like it is shutting down.
In July of 2018 I will be attending the Mayo clinic in effort for answers but even now I am concerned they won't be able to help and I am doomed to stay on pain medications that do not help and stay in bed forever. I cannot continue to live this way. It has killed my spirit and makes me feel like a burden to everyone who has to help me all the time.