F.A.Q.

I get asked a lot of the same questions over and over about my health problems, which very few people really understand. Part of that is my own fault, because I try not to talk about it much. However, I've heard these a lot lately, so for anyone who might actually be interested, here’s a list of “Frequently Asked Questions” with my “usual” answer, and then a fuller, more realistic explanation.

Q: How’s your back pain?
A: About the same as always. Some good days, some not-so-good.

Explanation: The thing is, “back pain” is kind of misleading. When most people think of back pain, they’re thinking of lower back pain – such as compressed disks in the lower back causing pain. That is NOT my problem. I have thoracic neuralgia. It’s also been diagnosed as an uncommon form of Complex Regional Pain Syndrome.

Whatever you call it, the pain originates on the right side of my spine in the area near the bottom two ribs, and runs along those ribs to the front, ending at the sternum (breastbone). Those nerves went haywire and send pain signals for no discernable reason. This is turn causes a hypersensitivity of the skin on the right side of my back and chest of varying levels. Sometimes it feels akin to a sunburn when something touches my skin, sometimes it’s closer to a bad 2nd degree burn sort of feeling.


Q: “Is your chronic pain all better now?”
A. About the same as always.

Explanation: Please note the definition of chronic: “Of long duration, continuing.” or even “Relating to an illness or medical condition that is characterized by long duration or frequent recurrence.” If it’s chronic, it’s not going to get all better.


Q: Well, just what IS your problem then? What caused it?
A. Chronic pain and fibromyalgia, and the doctors don’t know.

Explanation: The chronic pain is caused by both the thoracic neuralgia and fibromyalgia at this point. The thoracic pain I described above, but will add that it also causes a sort of cascade effect sometimes, making muscles tighten up and spasm on my right side from my neck and jaw area down to my hip. The doctors did several tests but really don’t know what caused this problem.

However, the chronic thoracic pain is the most likely trigger for the fibromyalgia that followed. Fibromyalgia is defined as a “syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints without detectable inflammation… and also causes undue fatigue.”

For many years doctors wouldn’t concede it’s a real problem, but as more and more people have it, and more and more research has been done, unless they’re really out of touch, they have to admit it’s real, and “not all in your head.”


Q. Have you tried going to a pain doctor? (Medication, surgery, etc.)
A. Yes

Explanations:

On doctors - I went from regular doctors to neurologists to pain doctors, and it seems about everything in-between. Chiropractor, acupuncturist, gastroenterologist, neurosurgeon, cardiologist, physical therapist, even a Rolfing expert.

On Medicines: I’ve been on antidepressants, heart medications, pain meds, anti-seizure medications, and just about anything that has ever been tried to control chronic pain. Lyrica, Neurontin, Guaifenisen, Effexor, and the list goes on and on. I don't react well to most medications. The bottom line for me, just ME, on medications is this: NONE of them helped enough to make them worth the side effects.

On Surgery: I’ve had my gallbladder removed, a lumbar Laminectomy, nerve blocks, and tried a spinal nuerostimulator implant. No improvement with any of them, and some even left me worse than I started. It would take a lot to convince me to try anything else.

On etc.: I’ve also tried a TENS unit, lidocaine patches, direct injection of anesthetic type agents, massage of the surrounding areas (NOT where the thoracic neuralgia is!)… I can’t even remember it all.

The bottom line is this: If there’s something touted for chronic pain or fibromyalgia, I’ve probably tried it.

The one thing left for fibromyalgia, which I’m trying now, is a combination of therapies prescribed by The Fibromyalgia & Fatigue Center, addressing several problems that come with the fibromyalgia syndrome. I’m hoping this will help the pain caused by the fibromyalgia, so “all” that’s left to deal with is the original thoracic neuralgia.

And there you have it, answers to the most Frequently Asked Questions I hear about my health.