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More of me

05 Apr

You can read my profile page here. That’s a short and shorty about me. But I wanted to introduce myself a little more.

I’m in my early 40s, and I’ve been married to my husband since 1999. We have been together since 1992. I spent the beginning of my career as a computer network administrator, then when I first got sick in 2000, I started my career as an author.

In late 2000, I began feeling sick and run down. My job was pretty high stress at the time, so I originally thought that I was “burned out” from working in a high-stress, fast-paced job. I suffered from walking pneumonia during this period of time, which kind of started out my illnesses. I became unable to work, so I took short-term leave from my job to try to recover. Unfortunately, my health continued to go downhill and my employer could not hold my job open.

I began making the rounds to every specialty doctor you can think of, trying to figure out what was wrong with me. I suffered from extreme fatigue, body pain, stomach pains, muscle pain, headaches, jaw aches, and of course, anxiety over all of it. At the time, fibromyalgia was barely coming to light, and many doctors didn’t believe it even existed. We weren’t sure if it was what I had, but the symptoms seemed to match. After going everywhere else, including a neurologist (who sometimes diagnoses fibromyalgia), I found a local neurologist who specialized in Fibromyalgia and chronic fatigue syndrome. He didn’t take insurance, but by this time I was desperate to find out what was wrong with me.

The neurologist told me I did not have fibro or chronic fatigue syndrome, but instead could be categorized under the heading of “myofascial pain syndrome”, now called chronic myofascial pain. It has some similarities to fibro, but is inherently different. Fibro has tender points and generally the pain is all over the body. Myofacial pain syndrome has trigger points, and it tends to be more localized to certain areas. The neurologist coudn’t be sure, but it’s possible I had a virus that weakened my immune system, and then my body wasn’t absorbing b12 or iron, so those stores were impossibly low in my body. Without those two essential vitamins and nutrients, my muscles could not repair themselves, and so I got weaker and weaker, and the myofascial pain got worse and worse. The treatment was iron and b12 supplementation, plus physical therapy to help rehabilitate my muscles. I was on that treatment schedule for over 9 months. Since then I’ve been on and off both supplementation and PT in order to keep up with my myofascial pain syndrome issues.

The neuro also found that I had TMJ, and sent me to a dentist who specialized in TMJ. She was able to help me a lot with the headaches and jaw pain by fitting me with a mouth guard to sleep in. I chewed the hell out of that first mouth guard, but after that was never able to get one that fit the same, unfortunately.

In 2003, I got sick again. I began to get dizzy spells and my anxiety peaked again. I couldn’t get out of bed without feeling like I was falling over. Even in bed, I was dizzy and unbalanced. There were times I worried I would fall out of bed when I was laying down! We began the rounds to doctors yet again, trying to discover what was wrong with me this time. Most of them had no answers, just like the first time around. After a lot of my own research and a final visit to a specialized neurologist whose work with vertigo was fairly renowned, they diagnosed me with migraine associated vertigo. Most people who have migraines get visual auras where they see spots or light, or have some other visual disturbance. Many people who get migraines have pain in their heads somewhere. For me, my “aura” was vertigo and imbalance, and I had no pain (silent migraine). The only treatment was medication, and since I was not interested in that, they gave me some balance exercises and told me that it was possible my brain would compensate for my new “normal”…the imbalance I was living with. And truthfully, that has happened to a point. Over the 10 years I’ve lived with this issue, we’ve come to realize that some of my “migraines” are triggered by food and some are triggered by seasons (potentially, seasonal allergies). More recently I’ve been dealing with bouts of positional vertigo, but they have so far been minor and I can manage them.

In 2010, I began dealing with a new issue, where I was having extreme facial flushing to the point that I needed ice packs and my ears would turn bright purple. I also felt agitated and highly anxious…jittery. It took quite some time to realize that it was only happening after eating, so I began to suspect a food allergy. At the time I was eating a lot of couscous, which is a pasta product made from semolina wheat, and I began to narrow down the “reaction” to wheat. I decided to go gluten free, which was the easiest way to avoid wheat at the time. Now I know it’s a wheat allergy and what I was feeling was as close to a histamine reaction as you can get. If I go out and accidentally have wheat in my food, I know it within 10 minutes. It’s so strange, but after searching the internet again, I’ve found other people who have similar reactions to wheat and/or gluten.

More recently I’ve found that I am carbohydrate sensitive, so I try to keep an eye on how many carbs are in my meals, without really “restricting” myself. It’s so much fun trying to figure out what I can and can’t eat! I am lucky, though, that my food-related issues are not severe and do not result in emergency situations. However, the thought that it might progress to that is a source of “food” for my anxiety.

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