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crps pain how to deal with it
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doncr1956 posted:
a mva left me a parapalegit, but worse than that, i now have complex regional pain syndrome and i cant get treated for it. here in louisiana being on medicaid is almost like having no insurance at all. some say that it is because our state mishandled millions of medicade money and now they refuse federal help for medicaid, doctors wind up not getting paid, so now doctors won't accept medicaid. what are we suppose to do? i have horrible pain from my belly button down. I even have gost pain where it feels like i have pain in my legs and feet. what are the drugs used to treat this? i have tried patches and 32mgs. of exalgo, lortabs and percot. nothing helps. i dont know if the pills dont work, or that they arent strong enough, or if it is just my body. HELP.
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shellyc1960 responded:
dear doncr1956, m a 52 yr old female with tons of med issues but to look at me thank god i still after homecoming 30 something yrs ago stil have held it together but this pain i have stainks and what i want to ask is complex regional pain? my brother at 36-46 death 11/11/2008 he was a parapalegic from being a firefighter at a 5 alarm blaze and a weapon in the house got so hot it shot out and hit my brother in his sinal column, if he didnt have kids he would have deboweled himself hesaid due to no pain there. his whole body cause we believed he was always in MASSIVE amounts of pain was short circuted so thats why i ask what crp is?maybe he had it..anyways he would get 60 mg of methadone every 4 hrs 1800 a month plus like 700 15mg oxys and h never was out of pain but i have fibro nueralgia neuropathy all nerve pain diagnosis's and i take metthadone and 30 mg oxys 6 day and i must say my body believe it or not still hurts and i guess ill never b pain free but im learning what i can and cant do anymore and some is probally age as my head says im 18,lol but my body says 70..shelly
 
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JennSeattle responded:
Hey neighbor...I'm from LA too but I live in WA state now. I feel you. I am trying to get state community health. Right now I have what's equivalent to going to LSUMC - but way better - hang in there. I know tricyclic anitdepressants were somewhat helpful for me - but I couldn't stand the side effects.

Currently I am on NOTHING. I'd get on my knees to beg God to relieve my pain but I physically can't kneel - lol

Hang in there.
Do or do not - there is no try. YODA
 
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TDXSP08 replied to shellyc1960's response:
Shelly

My Deepest Sympathy on the Loss of Your Brother, before Medically retirement due to my heath i was a Paramedic/Firefighter in the "big apple" i drive a wheelchair now like your brother but once a Firefighter always a Firefighter it is a "calling" no does it for money or glory it's something that is either in you or is not. It is truly a Brotherhood and when traveling if you ever need anything you stop at any firehouse and your brass pass will get you just about anything you need even in foreign countries and of course you should always carry a supply of your company patch to trade. The owner of the building should have let the Department know there was guns and ammo in there, your Brothers suffering could have been avoided had the owner been honest and i hope someone sued him into the stone age for that. Best wishes for You in your struggle for the right care.

Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
 
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doncr1956 replied to shellyc1960's response:
Hi shellyc

I appreicate you taking an intrest in my comment. c.r.p.s. is very nasty. Not only does it cause you phyfisical pain, but it will mess with your mind as well. I will describe how it affected me
At first, it was just a little irritating feeling in my groin. You know,, just a little stirring. As time went by, it got to where i was having spasms in my groin. nothing real bad, just irritating. Then, it got to where it hurt. I thought that i was hurting because of the foley cather that i had in. You know, I was trying to explain it all away, I had talked to my doctor about it, and he said that it was just my nerves trying to reconnect. It got to where it felt like I had been kicked in the family jewels. Not so bad at times considering, but when the spasms hit, oh lord. It stayed like that for a while, then it started affecting the top part oof my legs. And now it affects me all the way down. It feels like i have been set afire, while I am being stuck with needles. It gets so intense at time. Usually when i first wake up. And it will last for hours on end. Sometimes all day long. But the burning and needles are always there. Not to mention when the spasms hit. And it always gets worse. If you don't catch crps in time, You loose your opportunity to arrest the progression of it. There is no cure. And they say that the pain is worse than it is for cancer patients. The best way of knowing what i am talking about, is for you to google crps. it will take you to another link. Click on that one and you will be able to read it for yourself. I wish that i had the drugs that you are on. Here in louisiana, they care little for your pain. Where are you from? I haven't been able to get into a pain clinic here yet because of only being on Medicaid. Noone will accept it here I have been told that my state gov. misused millions of dollars of the federal money and are having to pay it back, and now my state gov. won't accept any more mone from the feds. WHO suffers? We do. I don't blame the doctors. If they aren't going to get paid, why would they want to take us?
I keep wondering if other states are having this problem.
 
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doncr1956 replied to JennSeattle's response:
good to hear from you Jenn. What made you move all the way to WA state?? Yeah, I have been to LSU too. I got no help there either. What condition are you plagued with?? What were the side effects of tricyclic? How will you benifit from state community health there. It has got to be better than La.s answer to health care. I have begged God for help too. Even death when it gets real bad I have never felt anything like this crps. Let me hear from you.
 
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David Maine, MD responded:
Thank you for your post. Hopefully these sources can be helpful to you.

http://www.webmd.com/pain-management/guide/crps

http://www.rsdhope.org/index.html


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