I have been doing well for quite a while, but over the last 3 days, I have had a flare of my RSD and my leg is humming. I have my SCS turned up so high that my leg is actually twitching, but how can you stand that for any period of time? I broke down and had my pain MD paged last night and he was out of town and recommended for a one time increase in my Lyrica, extra Percocet, and I took extra Baclofen, but was still up all night. He said that I can get oral Dilaudid on Monday. Both of us agreed that it would be stupid to go to the ER as it was a Saturday night and that fact that they have no idea what to do with me (no clue about CRPS). They would just knock me out and send me home (at least he is realistic, which I love about him.)
I'm just done. I know that we all get to this point, but I'm done with this crap. I'm exhausted and can only sleep for small stretches at a time. My eyes feel like fire, yet, I can't sleep. He can't get me in for a block until Tuesday, so this is my life until then.
Sorry, just needed a pity party. I know that many of you are so much worse off than I am, but you know how it gets when you're exhausted and hurting.

I'm sorry to hear about the flare up. I know what you mean they suck! You mentioned Dilaudid have you ever been on it before? I think it should do well to help you with your pain since its alot stronger then anything your currently on. Smart thinking to stay away from the ER, the ER is nothing but an add on of stress making things worse and a bunch of unless people that know nothing about RSD and cause you more hurt then help. I know all to well about being up all the time. My body has adjusted to the living dead status I've been in, I would recommend trying to get put on Xanax that will help you with your sleep issue. Hope you start to feel better and remember to hang in there. Your the boss remember to keep telling yourself that and that you won't quit! Were here anytime to rant to thats what this group is about being there to help one another!

I too have SCS and take dilaudid. It does take edge off but not always in a bad flare. Try warm Epsom salt soak right before bedtime. May calm you down enough to sleep for a bit. Also I use a ton of Arnice salve. You can buy it online cheep at Walgreens.com. It has a natural anastetic and also calms me down, Check it out. I have lots of RSDers using it.Hope this helps-Fondly-Carol

What dosage of dilaudid are you on?

I hope you are at rest and sleeping as i type this....

It's an all-to-familiar battle, yet it's good you got on here to 'rant'.....
I only WISH people in the medical field would somehow come across these posts and actually give a cr@p!
I mean REALLY. What's it gonna take for the health industry to recognize this for what it is and make allowances for us to get the PROPER pain management!!
I've seen too many people at the end of their rope and almost ready to give up their lives just to be set free from this agony and it REALLY peeves me because i KNOW there is adequate pain management options....but, thanks to the DEA, Dr's are running scared and are afraid to prescribe the REAL meds that can possibly make a difference.......but noooooooo! We're in the war on drugs by golly and it has gone TOO FAR! The drugseeker/addicts are gonna find their 'fix' no matter WHAT enforcement is in place and meanwhile lives are being lost due to suicide. I've seen it happen with my own 2 eyes.
So, THANKS aLOT DEA they think they are 'saving lives' but that's a load of @#$%^!! LIVES ARE BEING LOST because people like us can't take it anymore!!!!! It just gets to be TOO MUCH having to feel like a lowlife scumbag grovelling around to get our little hand-written script once a month and STILL getting the looks from certain people as tho WE are the drugseekers causing all the problems!

ok enuf of the Andy Rooney rant.......

My heart goes out to you.
I see you have an SCS. How long have you had it? It'd be great if you popped over to the SCS/Pain Pump forum and shared a bit on how much it is helping you.....people are coming here every day asking about these units.
Here's the link to get you there :
http://neurotalk.psychcentral.com/forum118.html

We've started a thread on how much percentage of pain does your implant cover, and it'd be so great if you'd chime in.....

Caring
Rae

llrn,

This is gonna happen whenever someone has rsd.
Be thankful, and at peace.
You did have several days of feeling decent, yes?
So, turn down the SCS, (If you're twitchiing, it's gotta be doing more harm than good).
Curl up and get as comfy as you can, and sometimes we must 'Resign Ourselves, to the RSD'.
I don't like to say it, but it's true.
After 27 years of this, I know it cannot be helped.

When you're 'in' the situation, medical science moves too slowly.
But, you can learn how to 'deal' with your body.
Myself, I hate appointments, and prepare for them two days ahead, (at least ).
But, if you've gotta crash, that's what you gotta do, and getting ****** off, and reactionary, only makes it worse....

I hope for you that you can relax and take your time, that's what RSD, really needs.
It demands us to slow down, or stop.

Prayers for you!

pete
asb

2 mg up to 4x day Rarely need 4 doses unless bad flare. Normally get by on 2 a day

Also agree that you need to turn down SCS. It can agravate flares if too hi. Sometimes I turn mine off for a few hours in a flare. It is rare as I run mine 24/7/ Also when was the last time you were reprogrammed? Might need to do that too. Pain patterns change,and I have had to be reprogrammed many times. Hope you are doing better-Fondly-Carol

PS also HIGHLY agree with previous post re :drugs and Dr. UGH to those who have no idea what we deal with every day of our lives!!!!

I too am experiancing a flare, must be the time of year or the weather
gentlez

interesting to better work might I suggest for worse times taking 4mg 2x daily.