- Sex: F
- Data Quality: 0 stars
- Pain: Little
- Fatigue: Some
- Sleep: Some
- Stiffness: Most
- function: Most
- external_stress: Little
- Stickman: some
- Female, 29 years
- IN, United States
- Primary Condition
- First symptom
I'm a laid-back, easy-going gal with a love for the written word and a penchant for the quirky and offbeat. My creativity is my life. If I let a day go by without creating something, I can't help but feel it's been wasted. I'm fascinated by other cultures, languages, and time periods, and those who know me often say I was born in the wrong place at the wrong time. I'm far from shy, but I rarely start conversations. That being said, I'm always up for a good chat. About anything. So do feel free. I look very forward to meeting people in the same boat, so to speak. :)
My profile currently reads that I've had FM for 20 yrs, and yet don't have a definitive diagnosis, which looks a bit odd, so I'll take advantage of the space here to explain.
My medical issues started when I was just a baby. I was given an antibiotic to treat some normal childhood illness, had a rather severe allergic reaction to it, was given benadryl to treat the reaction, had a negative reaction to the benadryl, was given a different antibiotic, turned out to be allergic to it as well... And for the first few years of my life, this was a rather common cycle. Along with the drug allergies, others began to crop up, and when I was five I was sent for allergy testing. Turned out I was allergic to life. Pollen, molds, cats, dogs, stinging insects... Darn near everything they tested for. And plenty of things they didn't. The following year, we wound up having to toss our tree out in the yard on Christmas Eve when we finally figured out that it was the culprit behind my swelling and hives.
I had allergy shots for the next 11 years, had to take some sort of decongestant on a near-daily basis, carried an epi-pen, and learned to live with it. I got used to it, didn't think about it much, and certainly never thought that it might be part of another condition.
Until recently, when I started researching fibromyalgia. My mom started reading up on the subject when her rheumatologist told her she thought she might have it. And the more she read, the more she began to think that I might have it too.
I've spent the last seven trying to figure out just what was wrong with me. When I was a freshman in college, I started having trouble sleeping, which led to trouble getting up for classes, which led to trouble with my grades, which led to anxiety and depression. I started seeing a therapist and was prescribed an anti-depressant. Things improved for a while, until my free therapy time ran out and I had to quit taking the medication because--what a shock--I developed an allergy to it.
Of course, the symptoms of depression returned. The insomnia got worse, and other symptoms began to crop up. When I did get to sleep I would wake up stiff and achey. I had frequent headaches. I started getting rashes for no apparent reason that would show up, annoy me, go away, and then pop up again on a different part of my body. I had terrible fatigue, couldn't seem to get enough rest no matter how long I slept. I would get lightheaded and dizzy and off-balance. I felt like I was falling apart.
Over the next few years I saw a number of doctors for the various symptoms and received just as many different explanations. The aches and pains were contributed to my depression, along with the fatigue. I apparently had both insomnia and hypersomnia. The dizziness was due to orthostatic hypotension. And the explanations for the rashes ranged from stress to allergies to a skin disease so rare I couldn't possibly have it. I was given more antidepressants and sleeping pills, topical creams and prednizone for the itchy rash and xanex to combat the stress.
I transferred to a different school, changed majors, and cut back on my course load to make things easier on myself. The rashes finally went away, my depression improved, life got easier to cope with. But I was still just coping. As with the allergies, these other symptoms were slowly becoming a way of life. I scheduled my life to work around the insomnia. When I had early classes, I'd just stay up all night, come home a zombie at the end of the day, and sleep until my evening class the next day.
In the mean time, the issues apparently caused by my blood pressure got worse. And they developed a schedule. About once a month I would have a spell lasting anywhere from a few days to a week wherein the fatigue would be all but debilitating. It seemed an immense effort just to get up and walk to the bathroom, and when I did I would get so dizzy that I would walk into things, so weak that I was afraid I would just fall over. My entire body would ache, like I had the flu, and I would get headaches so bad that it hurt to blink. I monitored my blood pressure during these periods, and as it was always low, I assumed that was the cause.
Still, I knew this was not just the orthostatic hypotension I had been previously diagnosed with. I made several trips to various doctors during these spells, and every time they would tell me my blood pressure was great, look me over, and send me off with no explanation. No one seemed to think it was anything to be too concerned with. When I finally got someone to take me seriously, I was overjoyed. One doctor finally ran blood tests, did and EKG, and even sent me for a CT scan. The blood tests were fine, the EKG showed a minor arrhythmia that I'd probably always had, and the CT scan showed some severely congested sinuses. That was his explanation for the entire thing. It was just a really bad sinus infection. I got a round of antibiotics, and sure enough, things got better.
Until the next spell. Things steadily got worse. I started having heart palpitations and episodes of tachycardia on top of everything else. The spells started lasting longer--up to two and half weeks. And what had previously only affected my body began to wreak havoc with my mind as well. I would walk into a room and forget why I was there. I often forgot what day it was. I had trouble speaking, couldn't find the word I was looking for or would flip words around. I tried to write down the date and had to think really hard about what year it was. I was beginning to think it was time to see someone again, but what was the point? Why waste the time and money when they probably wouldn't do anything anyway?
It was just like when I was a child, and my ankles or knees or wrists would start hurting and Mom would take me to the ER just to be sure I hadn't sprained or fractured something somehow. Every time the x-rays would come back fine and they'd tell me it was just growing pains. I got so tired of sitting in waiting rooms and going through the x-rays and examinations only to be told to just go home and take some tylenol that eventually I just stopped telling anyone when I hurt. It was something else that I just learned to live with. Those random aches and pains never went away, but I got so used to them that I really didn't think much of it anymore.
Until Mom started her research. She showed me the list of fibromyalgia symptoms in the book she was reading, and for a long time I just sat and stared at it. That was my life. That list may as well have been an autobiography or a self-portrait. It was all there. Everything I was feeling now, every recurrent complain I'd had from brittle nails to bladder infections, the depression, the anxiety, the pain I had lived with for so long. Even the allergies that seemed to have started it all.
Even without an official diagnosis, I feel like I finally have an explanation. I finally feel like there's hope, like there's something I can do. I don't have to just learn to live with this. There are treatments. I'm not just lazy, I'm not crazy, and I'm not alone.
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