Fibromyalgia has been called “the lonely disease,” but I tend to think of it more as “the private disease.” Fibromyalgia patients and their families endure agonizing periods of turmoil, both physical and emotional. For me, the physical and emotional aspects are so intimately connected, that I find it difficult to separate them. The personal nature of fibromyalgia has made me somewhat hesitant to share my story, but after reading so many heartfelt stories from others, I felt compelled to share my experience with this baffling conditon, too.

When my wife first became ill, we certainly were not thinking about fibromyalgia (that came much later). It all started with a simple rash, that soon spread to cover a significant portion of my wife’s torso. It looked, and was, exquisitely painful, and I knew she was really hurting when she put up no resistance to my suggestion that we go to the hospital.

It was the weekend, so we wound up at the emergency room with the rash getting angrier all the time. I had begun to suspect that she had shingles, but the ER doctor was reluctant to make that diagnosis. Being bilateral and lacking vesicles, the rash was not typical for shingles. So, she was admitted to the hospital, where, thankfully, she was given a Demerol drip to quell the pain, and soon after that anti-viral medication.

Over the next four days she was seen by an internist, a dermatologist, a neurologist, a gynecologist, and an immunologist, but they reached no consensus regarding her diagnosis. The only thing they knew for sure was that the rash was dissipating and my wife was feeling better, so she was sent home with a prescription for Valtrex and a warning that the rash might come back.

The rash didn’t come back, but the pain did. Sometimes she described it like an electrical shock, other times as a deep, aching pain. Since postherpetic neuropathy is not uncommon in severe cases of shingles, we assumed this was what it was and hoped it would diminish over time.

It didn’t.

Instead she cycled through periods of extreme discomfort followed by relatively tolerable periods. Typically, her symptoms became worse during the evening, and eventually they became so severe that she began waking up in the middle of the night. Over time, we began to notice other symptoms, too, but these did not fit so nicely with a diagnosis of postherpetic neuropathy. Her joints started to ache, she had frequent headaches, and she became more forgetful. She was extremely fatigued, also, but at this point we assumed it was because the pain was keeping her awake at night.

All of this caused some major changes in our lives. She was usually too tired, or in too much pain, to do much of anything after work, so not only did I learn how to do the dishes, but how to cook and do the laundry, too. We were forced to make other changes, too. We started sleeping in separate bedrooms, so at least I could get a full night’s sleep, and I learned to move carefully around her, because even the gentlest touch could cause her extreme discomfort. At times, her sense of smell or hearing would be uncomfortably sensitive, so we stopped using any scented cosmetics, and I learned to tread softly around her. The pain, meanwhile, caused her to be irritable, shortened her patience and entirely frustrated us both.

While we were sorting through these life changes, my wife’s doctors had decided that in addition to having postherpetic neuropathy, she was now peri-menopausal. This second diagnosis was intended to explain her new symptoms -the headaches, forgetfulness, irritability, etc.

This seemed a little too convenient for us, and we began trying to find some answers on our own. Of course, it wasn’t long before we stumbled across fibromyalgia. As a pharmacist, I am equipped with basic knowledge of a range of diseases, but my understanding of fibromyalgia was superficial, at best, so I began educating myself.

I did this primarily by scouring medical journals and networking with local physicians who I knew were treating fibromyalgia. During this time, I was introduced to the clinical studies using malic acid and magnesium to treat fibromyalgia and started to focus on nutritional supplementation as a way to improve my wife’s condition.

We knew we weren’t likely to find the malic acid/magnesium combination on our supermarket shelf, so we searched the internet until we found a suitable product. We were encouraged that after only a couple of weeks, my wife had more energy and her joints ached less, but I still wasn’t sure we had found the best supplement for her.

The proportions of malic acid and magnesium were not the same as they were in the clinical trials, and these supplements had several herbs added to the formulation. Some of the herbs I knew to be ineffective, at best, and given how sensitized my wife’s body had become, I was disinclined to expose her to them. So, I started compounding my own malic acid/magnesium formula based on the clinical trials I had read, and left out exotic sounding, but useless, herbs.

By this time, my wife had joined a fibromyalgia support group and soon I was compounding for a few of her new friends, too. When some of the local physicians became interested in what I was doing, I added their patients to my list of customers, too.

Somewhat unintentionally, I had a thriving new business, and in 2005 made the decision to start PRN Nutraceuticals. While things have changed a little since then, I still focus my efforts on producing supplements based on sound science, with quality ingredients, and none of the excessive “ingredient stuffing” that is so typical of most products.

Of course, my wife and I still struggle with fibromyalgia daily. We accept that our lives will never be like they were pre-fibro, but we have learned how to manage our lives -even in the presence of such a disruptive force.