In Pain - and How!

Been a while since I was on here. Things have been going along. I've been coping with a treatment every two weeks instead of once per month. Seems like I just get over one of them and it's time for the other one.

It's winter, and I'm depressed (SAD) so haven't been as good at managing my blood sugars either.

But today. Whew!

Started off this afternoon with what felt like a wierd charley horse in my right leg. But I couldn't work it out by stretching and massage. And it kept being there. And then I started getting the familiar old "ice picks" in my right foot too. As the day wore on, the pain got more severe - and the "stabs" got more severe.

I had visions of those DVT (deep vein thromboses). I sit a lot - sewing, editing ebooks, and other things I do to make money. My sister has had those in both her legs and she is far more active than I so I was very worried about this. It seemed like standing and walking made it slightly better. Or was that just my imagination? All I know is it just kept getting worse.

I took some ibuprofen. Yeah, I know, sounds like not much. But IB is an anti-inflammatory and that is my underlying condition. And it does help. But I also did a big boo-boo. I ran myself short of my other helper - topiramate. So I have been on a half-dose for the last three days - and today I didn't even get that. I had not been all that sure just how much it was working, well, now I guess I really know!

The ice picks are getting worse, and more often. I finally went to bed, after taking 4 mg of dilaudid. Managed to get an hour of sleep before they woke me up again. Took some more dilaudid and really relaxed and experienced the pain to see what was happening.

Turns out it seems to be the equivalent nerve in my leg/foot to the median nerve in the hand/wrist. So it's not a DVT! That's both good news and good news. I think!

The good news is no blood clots! The other good news (I think) is that this nerve has been 'dead' for a long time and my feet have had no sensation in them for years. Except for the ice picks. I am now feeling some sort of sensation in the three outer toes. Not much but something. Makes my foot feel like I am walking with a big lump of something under that side of my foot.

So....is there hope? I don't know yet. Only time will tell.

In the meantime, as I sit here yelping from the spasms of pain in this nerve, and doped up on dilaudid - I hope it is good news and that I am not going through all this for nothing.

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.