Extremity pain unexplainable by docs, symptom of fibromyalgia?

The pain is totally unbearable. Especially at night! Three doctors, several tests, more Gabapentin. That is the end of the road.

I have had this unexplainable pain that starts in my great toe joint, then shoots terrible pains all the way through the rest of my foot. It seems to be the most painful and noticeable in the nighttime hours. Maybe because I am trying to rest, or possibly just because my nerves hate me.

Then as the feet begin to subside, the pain decides to move up my calves, causing muscle cramps, also known as Charley horses, that run up and down the calf muscle back into my feet.

Occasionally, I will have the pain in my joints of my hands. That is usually when the temperatures are colder, like I am a human barometer.I know most of us experience the strange phenomenon of predicting weather with our bodies.
The cramps get stronger, the pain and aches are not helped by anything until the weather moves through.It may even send us into a flare up.

At first the doctors assumed it was diabetic neuropathy. I have been a type 2 diabetic for around 17 years now.
They didn’t run any tests, just threw that diagnosis out there. They said to lower my blood sugars and take 300mg of Gabapentin 3 times a day. That was it, sent me home.

The pain was increasing rapidly. I was in tears trying anything to get the pain to subside long enough that I could maybe drift off to sleep.
I would move my feet around, kick them off of the bed, try to walk on them with no relief. I soaked them in hot water, then tried cold. I rubbed vicks vaporub on them, nothing. Tried biofreeze. Nothing. I couldn’t even wear socks or closed toe shoes.
The pain was and still occasionally is one of the most annoying and debilitating feelings I have. My pain doctor still insisted that all I have been dealing with was diabetic neuropathy.

Finally, my pain doctor sent me for some nerve testing. He set me up for an Electromyogram (EMG) and Nerve conductive studies. I must say, not the most pleasant test, but effective in ruling out certain issues.
The test consisted of probes being placed over and in the different muscles of my back, legs and feet.
Then, electrical pulses were ran to the muscles testing my nerve conductivity.

It feels like a sting from a bee, over and over at varying intensities. You must lay still while this is happening.
Once the test had concluded, I felt like my body was on fire. I must conclude that this may not be the best test for a fibromyalgia patient, since our nerves are on edge all the time anyhow. The test was necessary in diagnosing my issues, so I am, however, glad I had it done.

It was found that I in fact did not have diabetic neuropathy. This stumped my pain doctor. He didn’t have a plan on how to effectively treat me, while not having the issue he so deeply believed I had. He sent me to a neurologist. The neurologist poked and proded on my feet, legs and hands. Old fashioned, he just used a pin. After a thorough exam, he determined fairly easily that my diagnosis was Polyneuropathy.

Polyneuropathy :

A general degeneration of the peripheral nerves that spreads towards the center of the body. Sensations, strength or both may be impaired especially in the feet or hands, before the arms, legs or trunk. I then find out, after such a long time dealing with this excruciating pain, that this is a common diagnosis in people with fibromyalgia. In fact, it has been found that half of the people who suffer from fibromyalgia also have polyneuropathy.

Our nerve fibers are on overdrive all the time, causing us intense pain unlike people without fibromyalgia. Some believe that there is a “glitch” in a fibromyalgia sufferer’s brain that makes it percieve pain at a different level. We feel aches, stabs, burning and shooting pain for unnecessary reasons. The pain receptors send false information to the brain, after months of this happening, fibromyalgia is diagnosed.

No one can understand the pain and suffering a fibro sufferer has, unless they suffer fibro also. This must be why finding an understanding and empathic physician is such a chore. Polyneuropathy is damage to our central nerves, mostly resulting in pain in our extremities.

Since both polyneuropathy and fibromyalgia stem from the nervous system, it is very difficult to decide whuch syndrome is causing our pain. Either way, the treatment is much the same. Gabapentin or Neurontin, affects chemicals in the nerves that help to releive pain. It is also used to treat shingles pain and seizures.

They are trying to find the link, even hypothesizing that the root of fibromyalgia is polyneuropathy because the symptoms are so similar.

My neurologist prescribed me Gabapentin, 2400mg daily, along with a strong dose of vitamin B. The doctors were all in the correct area of  treatment, but the neurologist had experience with fibro and polyneuropathy.
He, himself is a sufferer of fibromyalgia and polyneuropathy.
His prescription dose is effective, compared to only 900mg of Gabapentin daily.

So far, it seems to be helping some. Actually, a lot. I continue to use my foot spa occasionally when the pain is simply unbearable. The heated water, along with Epson salts and the vibration and bubbles must confuse my nerves even further into thinking they are just fine.I compare the foot spa to my TENS unit.
Those days are getting farther in between, as the Gabapentin and vitamin B complex builds in my body.

We are the ones who know when there is something off or wrong. Do not allow one physician to belittle your symptoms. Keep pushing to get the tests and treatments you deserve. It pays off when you finally get matched with the proper physician whom understands our pain and issues. When you get the treatment right, nothing compares.

-TBerry

For support and discussions join the group “Living with Fibromyalgia and Chronic illness”