Idiopathic Peripheral Neuropathy is a subject I’m fairly well-versed on, or at least I used to be. I have it, and it sucks! So, here’s a quick breakdown in layman terms, and some links to help you educate yourself.
What is Idiopathic Peripheral Neuropathy?
- Peripheral: In this case, beyond the brain and the spinal cord. (From WebMD)
- Neuropathy: Nerve disease
- Idiopathic: Unknown cause
From Pubmed, peripheral neuropathy is when the nerves in the body do not work properly. That is…putting it mildly.
Imagine your basic extension cord. It has the conductive stuff on the inside, and that stuff is surrounded by plastic/rubber to keep it safe. When that coating is stripped away, you start having problems, right? Okay, well, its kind of the same way with your nerves. The nerve fibers are the conductors, and they are surrounded by this stuff called a myelin sheath. WHen that myelin sheath gets stripped/breaks down/goes bad, the nerve fibers are exposed, and the trouble starts. Just an FYI: that is a very, very simplified explanation.
Now, idiopathic peripheral neuropathy means… You have peripheral neuropathy, but the doctors don’t have a clue what’s causing it. Since they don’t know what’s causing it, if they’ve done enough proper testing, then they can’t fix it. Its not always curable, but they can help you manage it better if they know what’s causing it. (For example: Peripheral Neuropathy can be caused by a Vitamin B12 deficiency. Injections of B12 can greatly help you if this is the case.) As I’ve stated, there are a lot of causes of Peripheral Neuropathy. I will not go into them, though I will give you some links at the end of this article so you can educate yourself more if you’d like.
Symptoms:
- Numbness
- Tingling
- Loss of sensation
(The above listed are the most common ones.)
- Stocking Syndrome – You don’t lose complete sensation, but it feels like you’re wearing thick gloves and socks even when you’re not.
- Pain – Dear Lord, the PAIN. It freaking sucks. You have the ‘boiling water’ pain – where it feels like you just stuck a random part of your body into bathwater that is way too hot. You have the ‘stabbing’ pain, where it feels like someone is repeatedly sticking you with a needle in the exact same place. You have the “raw nerves” pain. I call it the “raw nerves” pain because I feel like someone has sanded off layers of my skin on the bottom of my feet to expose the nerves, and when I stand up, it is unimaginable pain. You have the ‘toothache’ pain. Ever had a toothache? Now, imagine that pain in your calves, from ankle to knee. Pain that will NOT go away. The ‘waitress’ pain. You always associate waitresses with having foot pain from being on their feet so long, right? Some people with IPN get the ‘waitress’ pain after about 5 minutes on a hard floor (like the floor at Wal-Mart).
- Twitching – Random parts of your muscles start to spasm/twitch. Annoying as heck.
- Loss of Balance
There are more, but those are the basics.
Speaking from personal experience, PN is hard to diagnose. Easier if you have a disease frequently associated with PN, like diabetes. For me, it took almost two years for them to diagnose it. Every time I went to the doctor, I would hear “We think you have <insert scary disease name here>.” I heard the gamut, from Lupus to AIDS. Talk about one heck of an emotional roller-coaster. They did blood test after blood test. They did MRIs, CT-Scans, you name it. At one point I was taking 24 pills a day, and they were NOT helping. I had a serious case of medicine head, but that was about it.
Lets see, I was on (as much as I can remember): Elavil, Neurontin, Darvacet, Depakote (briefly), Trazadone, Tramadol, some muscle relaxer I can’t remember the name of, and… other pills I can’t think of. It was ridiculous.
Finally, they did an EMG. EMG is Electromyogram test. Ie: They shock you, repeatedly, on different parts of your body, and measure how long it takes your nerves to react to the pain. In other words: It flippin’ hurts. However, it did accomplish something. It got me diagnosed. After just a few minutes, the doctor stopped, and said “You have neuropathy.” Then began the testing to see why I had neuropathy.
Then, one day, my doctor sat me down and said “We know that you have peripheral neuropathy, but we don’t know why.” So, they prescribed more pills. After about six months of me being drugged to the gills, some of my friends staged an intervention. They told me that I wasn’t myself, that I hadn’t acted like myself in a while, and they were worried about me. I realized they were right, and I (perhaps stupidly) stopped taking all my pills the very next day.
Luckily I didn’t suffer many side-effects of stopping all the pills like I did. Then, I began to push myself. I would walk 1/4 of a mile when I felt like crying after 200 feet. When it got to the point I could comfortably walk 1/4 of a mile, I started walking 1/2 of a mile. Within a couple years, I had went from believing (per the doctors) that I was going to end up in a wheelchair, to being able to walk 2-3 miles at a time. It wasn’t pleasant, but I could do it.
Peripheral neuropathy sucks, but even if it cannot be treated, it can be overcome if you are lucky. I was one of the lucky ones.
I still have it. It still bites. I still have days where I’m in a ridiculous amount of pain for no apparent reason. I weave through the halls like a drunken woman. I’m so used to rounding a corner and banging into it that it doesn’t even phase me anymore. The first thing I say to people when they see me stumbling down the halls is “I”m not drunk. I have peripheral neuropathy.” Now, on my bad days, I take a handful of ibuprofen or aspirin. Whatever I have on hand. It doesn’t take the pain away, but it takes the edge off.
If you think you might have peripheral neuropathy, you really need to bug your doctor. Cut to the chase. Ask for an EMG.
Be strong. It can get better.
Here are some links where you can educate yourself on peripheral neuropathy. Click on the links. They’ll take you specifically to the pages you need.
notonlyamommy 