My General Practitioner

At my appointment, my doctor who was a general practitioner, did the usual cursory exam – eyes, ears, nose, throat, heart, lungs, and basic blood work (CBC). He declared me perfectly healthy. No signs of infection, clear chest, eyes, ears, and throat all normal. He said it was probably due to the stress I had been under and suggested I rest. (Um, sure. I’ll just stop working and everything will be fine.) Taking off work was not an option.

Time passed and I was still as bad off as I had been on that day. I went back to the same doctor and insisted that there was something wrong. Stress alone was not an acceptable reason for the degree of pain I was feeling. Without a doubt, it was contributing, but that was not the whole picture.

This time the doctor said he thought it might be Fibromyalgia since the pain was so severe over such a long period of time. I had a number of other symptoms like chronic fatigue and insomnia. He questioned me about depression, but I wasn’t depressed. I was just exhausted.

My doctor asked me if I had ever had a traumatic injury. I had once fallen into a door facing in kindergarten and had to have 5 stitches in my forehead. He said that it is believed that traumatic injuries cause Fibromyalgia, and that I showed evidence of Fibromyalgia causes and symptoms.

Between the chronic pain and the insomnia, which was worsened by the now much more intensified pain, I had no energy. I could barely drag myself out of bed in the morning and I had a business to run. I did not have time for this. Could it be that I had fibromyalgia? Without a doubt, my symptoms are symptoms of Fibromyalgia syndrome.

My Rheumatologist

I was referred to a rheumatologist. Nice guy. Coincidentally, we had attended high school and college together. He was very concerned with helping me, and he ran all of the common tests for rheumatologic disorders like lupus, Lyme disease, arthritis, vasculitis, scleroderma, etc. Again, everything was normal. Sigh. How could everything be so “normal” on tests, but I was in so much pain?

The doctor believed I was in pain even though the tests all came back negative, and “confirmed” the Fibromyalgia diagnosis by process of elimination of other known causes of similar symptoms – lupus, arthritis, etc. He said that I had all the Fibromyalgia signs and symptoms. He prescribed a drug for epilepsy known as Lyrica. I took it out of desperation.

After adjusting to the weird side effects of Lyrica, which included some mild dizziness and not realizing what speed I was driving (everyone just seemed to be driving so slowly), I seemed to get quite a lot of relief from the agony I was enduring. I was so happy to be out of most of the pain. Although I still didn’t know the truth about Fibromyalgia, I was at least able to function.

Then, the swelling began.

Lyrica appears to work by calming nerves that are associated with pain and seizures, but it also has the nasty side effect of causing swelling. Another trip back to the doctor and he prescribed Lasix, a diuretic, to help with the swelling. So, I was in less pain, but at what cost? I was now chasing one medication with another (which is what led to my mother’s death), and no one could tell me why I was in so much pain in the first place.

I decided to switch doctors.

The Fibromyalgia Specialist

I’m from the South where there are not a lot of specialty doctors. Not that there aren’t good doctors, but if you want someone who specializes in something a bit out of the ordinary, you are SOL.

Fortunately, at the time there was all of one doctor who specialized in Fibromyalgia. I began seeing him, hoping for answers and to find out the truth about fibromyalgia. He was also a wonderful doctor who cared about my pain and wanted to help. He also said I showed the exact symptoms of Fibromyalgia in women. Fibromyalgia is far more prevalent among women that men.

He switched me over to several different medications over the course of about a year, including Cymbalta and Savella. I refused to try Paxil because a doctor had put me on it years back and I had such severe shock sensations even when tapering off of it slowly, that I flatly refused it. The Cymbalta and Savella caused a lot of weight gain and severe nausea, respectively.

Eventually, the Fibro specialist put me back on Lyrica, which was less effective for some reason, so he added Nucynta, a pain killer, and Flexeril, a muscle relaxer, to my regimen. Again, I was thankful for a doctor who didn’t think it was all in my head, but instead of trying to figure out what was actually wrong, I was given more medication. Now I was taking four to control my severe Fibromyalgia symptoms.

The Fibromyalgia specialist retired soon after I began seeing him and I tried to find another doctor, but couldn’t. No one else treated Fibro as a specialty.

The Search for Other Specialists

By this time I had been doing a lot of reading and thought that perhaps my condition was neurological, but when I tried to get an appointment with neurologists, I was told that they don’t treat Fibromyalgia patients and that I should see a rheumatologist. That is where I started and there were no answers, so I kept looking. I desperately wanted to know the truth about fibromyalgia. Why was I suffering for no apparent reason?

Literally at every specialty doctor I tried to call, as soon as I told them the reason I wanted to be seen was to find out what was causing my Fibromyalgia, I was told that so-and-so doesn’t see Fibro patients. I later learned this is largely because Fibro patients are seen as pill-seekers.

The great irony is that the reason I was calling the specialists in the first place was to get OFF of the pills. I even told them that when I called, but they didn’t care. No one seemed to care and I felt totally helpless to help myself. It was a very lonely place to be – in pain for no reason with no one who would help me and an ever-increasing pile of medications to put in my body. I was slowly becoming my mother – chasing one pill after another – until I died.

I started lying when I called to make appointments with doctors. It was the only way I could get seen. I felt bad about it, but it was the only way I could get in the door. I got the tests I wanted run, but still everything came back normal.

My New General Practitioner

At last resort, I switched to a new GP hoping that he might give me another idea of where to look for answers. He was also a good doctor and was very nice, but he thought it best for me to go to a pain clinic since the dosage of pain medication I was taking was so high. He just wasn’t comfortable prescribing that much medication – and I can’t blame him because it was a lot.

The Pain Clinic

The pain clinic was an experience. Most of the time I met with a Physician’s Assistant, who was pleasant, but on my first visit I met with the doctor. He was also a good doctor and I did get some pointers about correcting my posture, which was also adding to my pain. There is a weird aura around pain clinics – you are pretty much assumed to be an addict when you come in the door. Be ready to pee in a cup – often. I get that, but it’s still pretty insulting when you are looking for an answer rather than a script.

I had pretty much given up hope. My incessant research of everything to be found in the medical literature to complete hearsay on the Internet never got me anywhere. I had seen so many doctors and had so many tests run, all of which came back as normal, that I was starting to believe that maybe the original diagnosis of it being a stress-related illness was correct. I didn’t want to believe it, but the evidence was showing nothing wrong. I was still no closer to finding out the truth about fibromyalgia.

Supplements

One day it occurred to me that I might have a deficiency instead of a disease or illness. So, I started researching supplements – vitamins, minerals, and herbs. I spent a lot of money on them and had a huge basket in which I kept them all. I had to get a large pill organizer to help cut down on the time it took to get them all out each time.

I did have some success with supplements. I found that magnesium citrate really helped with the pain. Of course, it initially gave me the runs, but my body adjusted. B vitamins and D3 also seemed to provide some relief. It was helping, but it was clear that whatever was causing the pain was still there.

5-HTP also provided help with sleep. Since I have chronic insomnia and sleep-deprivation makes pain worse, this was a tremendous help. The other supplement that I found worthwhile was Ubiquinol, which helped with fatigue.

I felt fortunate that I found things that helped, but I still hadn’t found the cause of my pain.