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 05-18-2008, 08:11 PM #1
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Default Update on me..

Hi all! Well, my blood work showed up really good. I have no arthritis, I am happy about that. So, my doctor said everthing I have been going through is all RSD related. I have been having a lot of pain, so he upped my fentanyl patch from 75MCG to 100 Mcg. This is the highest there is on this patch! I haven't got the prescription filled for that yet, as my pharmacy that deals with my Insurance does not have them in until this Tuesday. He also put me on 2 doeses of clonidine, instead of the one pill I take at bedtime, I take one in the morning too. I also am on another prescription, called amitriptylin 10 Mg. It is an antidpressant and it's also used for pain?? I never heard of this?? Hmmmm.. He also said I will get a good night's sleep, as this will make me tired. Well, I took it and it takes around 4 hours to make me tired. I am weird!! LOL
Anyway, he is now talking about the spinal cord stimulator, just like my old Dr. did!! I am scared to have this done and I know I shouldn't be, being this pain is pure hell! I am sick of telling everyone who asks what is RSD?? I just say now, look it up online. My one sister asked me if it was genetic? I know that I asked this question before about getting the SCS, but will it take all of my pain away? I want to get off my percocett for break through pain and be weened off this fentanyl. He already took me off one dose of the Gabapentin. Instead of taking 600 MG three times a day, I take this twice a day. My friend told me one day, when I was feeling sorry for myself, to buy a notebook and for everytime I was feeling sorry for myself, write down five thing's that I am thankful for. Man, you all should see that book now! lot's of thing's that I am VERY thankful for. So, this helps me.
The Dr. also told me that, when my blood was drawn, that there was no lupus, no gout. Everthing looked really well, he said. I asked him how come my blood pressure has been up, as of late? I said could it be from this pain that I am having? He said yes. So, this is where I am at right now. Well, going to go and feel sorry for myself, hide under the covers, then write some thing's that I am thankful for. I know that I am thankful for all of you. Yes, I'll write that in my notebook, after I am done with my pity party. Well, going to go back to my cave, LOL~Love, Desi(Diane)
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Old 05-19-2008, 07:19 AM #2
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Awww, I'm so sorry you are having these problems. the good news is that you don't have RA or something else. I've missed you being around.

As you know, I have the scs. I am off almost all my meds for pain. I'm off the perc, and have been for a couple of months. I am on MS Contin, but that is because the battery site is painful. I think it is going to be moved a little so it isn't too close to where I sit. The scs doesn't stop all pain, but for me it is about 90 percent. It is really great, and I don't regret having it.

I hope you are feeling better and come out from the covers

Love

Mary
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Desi (05-21-2008)
Old 05-19-2008, 07:43 PM #3
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Good to hear from you Desi- I was writing the 5 things too but I seemed to have stopped- guess I have to start up again!-
Im still hoping for a miracle as this thing seems to invade my whole body!! Now its my eye too!

Deb

I have heard mixed reviews about the SCS- DO a lot of research first.
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Desi (05-21-2008)
Old 05-19-2008, 09:03 PM #4
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Dear Desi,
I have been hoping that you are ok. Glad your blood results were good.
As always I am sending my best wishes to you and hope that you keep as well as possible.

Love Tayla
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Old 05-21-2008, 02:25 AM #5
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Hi Desi,
I've been thinking about you and wondering how your tests went. Glad to hear that they didn't find anything else wrong but sorry to hear that it's the RSD that is creating more problems. I took amitriptyline when I first got RSD. It didn't help me sleep. After many months I quit taking it & didn't notice any difference. I hope it helps you.
Yeah, I'm having a pity party, too. This pain has been really hell for the past two and 1/2 weeks. I've been wearing lidoderm patches. Can't sit, can't stand for long so just laying around watching TV. I am so sick of it.
Well, I'm go to go try & get some more sleep. I can't sit at this computer any longer - the pain is getting worse.
I hope you feel better tomorrow.
Linmarie
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Desi (05-21-2008)
Old 05-21-2008, 07:24 PM #6
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[COLOR="Blue"]Hi Mary, Deb, Tayla and LinMarie!!
Thanks for replying back to me ladies. "YOUR ALL THE BEST"! Mary, how can they put a SCS in me if I am having pain now on the left side?"I mean, will it help all over? I am confused?? I mean if I do get it put in, will it do it's job of taking pain away on both sides? I am so happy that your pleased with yours and am glad that it will be moved a little bit so it does not hurt your backside. I am feeling better on and off today, peeked out from under the covers,enough to come on here and write in my book and of course give my 8 yr. old daughter tons of kisses and hugs. Thank you Mary. It's good to know I have been missed.
Deb, Hi sweetie! I am so sorry to hear that you too, have been under the weather. Now, it's in you eye?? OMG You poor thing! And here I am being like a baby!! Hey, we are allowed, huh?? LOL take care of you, Deb!! Prayers for you will be said.
Hi Tayla, I too am glad that my blood results were good, Thank you, Tayla for "The Best wishes"! I too, send mine to you too, my dear friend.
Hey there LinMarie!! Good as always hearing from you! So, your having a pity party too?? Good! we shall have ours together!! HA! HA! HA! To be serious now, I do know what you mean about laying around, watching t.v. being sick of it... blah, blah blah. Hey, what's one to do when their having a major flare?? Hibernate, I tell you!! Seems like your in a lot of pain LinMarie! Please take care sweetie. My prayers are with you, as well as everyone else. Much love to you all!~Love, Desi :0)
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Old 05-21-2008, 10:39 PM #7
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Good luck.

Staying upbeat seems to help a lot.
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Old 05-21-2008, 10:57 PM #8
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Hi IMahotep! Thanks for the "Good luck"! Being upbeat while in a flare is, "SO NOT ME"!! I wanna hide and cry and eat potato chips in bed!! LOL ;0)
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