I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). This site is for me, and others with this condition or chronic fatigue syndrome, fibromyalgia, and any other condition that involves chronic pain.

Saturday, June 4, 2011

Getting Started

I decided to start this blog because I found there really wasn't a good outlet for me to express my frustration, to gripe about the bad days and to celebrate the good ones. I had subscribed to another blog a while back that I thought would be that place - and while I admire the woman who wrote it for all her various accomplishments - her blog turned out to be one of those where she only posted when she was getting paid to shill for some company selling a product or service to those of us in the chronic pain community. And that's okay - I just wish she had been up front about it.

In any case - here I am. CIDP - for those of you who've never heard of it - and most people, including most doctors, haven't - is an autoimmune disorder. It's fairly rare - only about 100,000 people in the US are diagnosed with it. (That's a whole other discussion!) My immune system is basically destroying the myelin sheath that protects the nerves. The removal of the myelin sheath first causes unbelievable pain - and then over time, the nerves die. Nerve pain is one of the most difficult to manage with pain medications - and I am also allergic or sensitive to many of those meds too.

CIDP is progressive, and treatments only work about 60% of the time - if you can get them and if you aren't allergic (I am to one of them) and if you have really really good insurance!

I have my good days and I have my bad days - and then there are the really bad days. Since I live alone for now - most people never see those days - and I try really hard not to whine about it so my family and friends probably don't realize the full extent of what I go through. I decided to do this blog because I wanted a place to vent - and to provide a place for others like me to do the same. Welcome to my world.

We can whine here, we can discuss treatments, and we can celebrate when those good days happen - or at least the less bad days.

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