Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-13-2006, 11:36 PM #1
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Just Updating

Last edited by buckwheat; 12-22-2006 at 04:49 PM.
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Old 12-15-2006, 11:56 PM #2
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Hi And Welcome...i Am In The Same Boat As You And It Sure Is Shaking So Much These Days That I Do Want It To Sink....but.. Everyone Here Is Right..hang In There....i Have Been There For 13 Yrs Now Anad Each Day Is A Struggle But...i Refuse To Leet This Disease Win..so I Vent Here, Cry Inside Alot And Try To Make It Thru Each Day.. Good Luck And Keep On Venting..it Does Help..you Are Not Alone..... Peaceful Hugs....moonstar (linda)
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Old 12-16-2006, 03:02 PM #3
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I'm losing my grip....
I don't know what to do...
Thoughts aren't good...
I know what I want to do....

I'm sorry....but I had to say these things...
thought maybe getting them out might help...
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Old 12-16-2006, 05:25 PM #4
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((((((Abbie)))))),



'Thoughts' are just 'thoughts'. What's important is what we DO. If you're anything like me, you've got thoughts running around in your head like gerbils on an exercise wheel

Just let 'em run around as much as they want. Every once in awhile throw them down on a piece of paper or in a blank book.

And then DO what you NEED TO DO to get your balance back. To get your life back.

Most of have been affected by "gerbil-brain" at some time in our lives. We're all here to support you and listen to you as much as you want and as long as you want.

Hang on tight. And let people CARE FOR YOU. BIG HUGS.

Barb
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Old 12-16-2006, 08:56 PM #5
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You are still in our thoughts.

Have you made any calls to the hot lines { just to talk with them?}
or even to other doctors- to demand better pain control and help for depression?

are you eating OK ? and maybe taking some multi vitamins & B complex for stress?
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Old 12-16-2006, 09:15 PM #6
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Jo,
I spent most of the afternoon, eve, and night yesterday with my doctor... chiro/acupuncture to try to drop the pain levels... they came down and then went right back up...so he kept at it as much as he felt was safe.

we are still looking for a pain medicine that will work but won't cause an allergic reaction.... so far no luck.

antidepressants... still taking cymbalta but doc is looking for one we haven't tried yet... cymbalta is about the 5th one we've tried.

eating...not really...i force myself but get sick shortly after.

vitamins... i take 3000mg vitamin c, 200mg - B1, 200mg - B6, 1200mg - NAC.
can't take a multi -- sounds crazy but i get severe sore throat when i take one for more than a couple days.

as far as other docs... i've been to about 15-20 and they all send me back to the ones i am with...tell me the docs i have are the best for treating me.

I haven't made any calls... i don't have phone access.... and driving to one really isn't a good idea...
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Old 01-04-2007, 01:40 AM #7
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Not to beat a dead horse...


I just wanted to let everyone know that things have gotten so very dark that I don't believe I can hang on much longer...

I love you all...
I'm sorry.

Abbie
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Old 01-04-2007, 02:16 AM #8
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sweetheart...i am here.

you hang in there. i know you can. pm me. we can go into chat.
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Old 01-04-2007, 02:33 AM #9
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Default Hi Abby,

My thought is to go to the ER anyway and beg them to see you. When I read what you said about the hospital, I instantly thought of Ky. and Texas. What you said reminds me of them.

We moved back to Ky. for 2 years and when I found that no Dr. or hospital would see me due to not having money or insurance we came back to Co. Here they have what is called Indegent Care Programs where you pay by what your income. In my case it was 10. to the ER. When we were in Texas when my daughter got married I went to a Hospital in Dallas and they told me they would not see me because I had no money nor a Dr. at the time. I do know exactly what you are saying.

I would go and let them bill you and then go back and sat up payments of 10. a month. If you do that they won't turn you in to a credit bureau and in your case with the shape you are in, I honestly wouldn't care if they turned me in to the credit bureau. Deal with all of that when the time comes.

I have quit going to the ER here because they are a joke anyway. I went 2 times. The first time they didn't know what to do for me because we just have a lousy hospital, the second time I had a Dr. that chalked my pain up to depression. I had TOS and chest pains at the time. I won't tell you what her nickname is in this area.

Honestly if they held a contest for the worst Drs. in the USA and the worst hospitals this area here would win. When I had my surgery last month, one of my nurses said they had gotten a new administration to straighten the hospital up. I still won't go to the ER and my PCP tells me to call him if I need help. He doesn't even trust it.

I know exactly how you feel. I have been there and for me I was blessed and found someone who would take care of me for 5 years for free because I had no insurance.

I don't know where you live but do you have any other hospitals even in a 65 mile radius that you could go to. We have 5 in that range. Also maybe walk in to your Drs. office instead of calling and tell them exactly what shape you are in and that you need help.

I also cannot take meds. I do believe I tried every pain med, depression med, muscle relaxer, heart med, cholestral med out there and I couldn't take any. The more of the med I'd get in my system the worse the side effects became. They never let up on me like the do others. I finally found Methadone. The side effects are minimal and it's getting to be the most popular med for pain. I also swear by lidocaine patches. I couldn't do the fentnal patch, after 6 hours I was throwing my guts up on that one.

Also see if your Dr. will send you to a good Anesteologist for blocks. My thought on RSD is not have one Dr. to rely on. It just is too hard of a syndrome to deal with and if you have a PM, PCP, and a Anesteolgist all 3 in line trying to help you, if one is out of town then you can call the other. Make sure they are working together also so they won't think you are Dr. hopping just for meds.

This forum has helped me a lot. I have met so many good people on here and they are very helpful. Like Vicc, I have seen my share of fights on here or should I say have been included in them, I tend to bring out the worst in people at times. LOL Lisa didn't mean anything she just maybe worded things differently. You should also try to realize that we are all in pain here and it sometimes makes our brains not work right and things come our wrong that we say.

I do hope that you start feeling better soon and don't give up the ship.

Ada
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Old 01-04-2007, 02:56 PM #10
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Abbie, even though I shouldn't speak, I'm going to anyway...as long as you know I'm a LOVING person and if I sound ucky, it's just the typed words and not the sound coming out of my mouth, k????

Hon, where is the girlfriend who was with you before? Can you call her up and have her come over again? And...I believe someone here on the board has given you their phone number. Please...if you don't feel YOU can call that person, have your friend call her. Please hon. There are some things you can do.

In your heart and mind, tell yourself that you must give yourself every chance at life, at happiness, before you do anything rash. And there are people on the board here who have some awesome ideas about things you can do. I do agree with Ada, about the ER. I think you should have your friend drive you to every one she can find (or if it hurts you too much to be in the car, maybe she can call them, and feel them out first, about insurance, or what they can do to help someone without insurance who is feeling as down as you are, and who needs help so badly).

I'm going to stop talking before I say something wrong. I really care about you sweetie. I was hoping you'd post again soon so we'd know youre still around. Just please don't go off without checking in here and there, k? We'll worry way too much.
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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