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 11-20-2008, 11:32 AM #11
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Thanks for the update Rita. I hope Reed will feel better soon.
You have both been through so much.

Keep us posted...
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Old 11-20-2008, 11:40 AM #12
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Rita, i'm sorry to hear that Reed isn't feeling too well at the moment . I hope and pray that the sleep study comes back normal and that there is nothing else for you to worry about.

I also hope that Reed's peeing problem settles down soon - I am the total oposit (sp?), it seems now I have RSD, I am forever at the toilet!!

I am keeping you both in my thoughts and hope that things get better for you soon - please keep us updated when you can.

Love, Alison
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Old 11-20-2008, 06:33 PM #13
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Hi Rita and Reed,

RSD causes a lot of things to happen. It is an automic (spelling) disorder-which means
it affects the involuntary organs. The sympathetic nervous system affects high blood pressure- I had never had high blood pressure before either. Para Sympathetic Nervous system-low blood pressure. So we can have dramatic drops, also. I'm on two high blood pressure meds. Pain meds do cause constipation- I have a high fiber diet and take natural pills to help. I don't know about the bladder. But it comes under the automic organs, heart, lungs, I would ask your Dr. about that. But I thinkI'm going to have to go off the Lyrica, having lungs issues and I've read several on this forum are affected by Lyrica on this organ. Just to find a Dr. that understands all of this interconnection is a miracle. Take care and let us know how you are> I see my Dr. Monday. Loretta
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Old 11-27-2008, 09:49 PM #14
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Heart Hi Rita...

Thanks for the concern hun...I am doing okay...Just trying to hang in there. Happy Turkey Day! Hope Reed is doin OK...Give him my best.

I am sure the spasms are RSD related, but I am not a doctor. My whole body jerks so bad that I keep my husband awake...

A great script for that is Baclofen..Ask his PM for that...It's the best for RSD spasms. Hope this helps sweetie!

Heather
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Old 11-28-2008, 08:34 AM #15
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Hi Nopainever,

I also had that problem with urination but it just seemed to go away. At that time I was doing 5 day ketamine procedures with boosters and I think that had alot to do with it. Right now and for the past year I haven't had any problems and my last ketamine booster was January 08.
Thanks for the post. I never heard of anyone else having this problem.

Thanks again,

Gabbycakes


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Originally Posted by nopainever View Post
Thanks for the concern hun...I am doing okay...Just trying to hang in there. Happy Turkey Day! Hope Reed is doin OK...Give him my best.

I am sure the spasms are RSD related, but I am not a doctor. My whole body jerks so bad that I keep my husband awake...

A great script for that is Baclofen..Ask his PM for that...It's the best for RSD spasms. Hope this helps sweetie!

Heather
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Old 11-28-2008, 09:48 AM #16
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Thanks Heather and Loretta,
Reed is doing better. We asked his PM doc about baclofen and he didn't seem really receptive. As a matter of fact, he didn't seem like he wanted to talk about much of anything. I'm hoping that he was just having a bad day, and that he isn't going to turn Reed out now that he has had his SCS and there aren't any more procedures to be done. I'm sure I'm just being paranoid.
Hope everyone had a fantastic Thanksgiving, I know I ate way too much! Hugs to you all!!
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Old 11-28-2008, 10:27 AM #17
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Heart There is always more to be done...

Don't give up Rita...Hang in there! SCS is not the END for sure. Sounds like your PM is at the end. Maybe you need to find someone new. I know that is exhausting, but there are compasionate doctor's out there. I had to move back from Las Vegas to Orange County to get my RSD back on track. But it was worth it.

Good Luck. Keep us Posted!

Heather


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Thanks Heather and Loretta,
Reed is doing better. We asked his PM doc about baclofen and he didn't seem really receptive. As a matter of fact, he didn't seem like he wanted to talk about much of anything. I'm hoping that he was just having a bad day, and that he isn't going to turn Reed out now that he has had his SCS and there aren't any more procedures to be done. I'm sure I'm just being paranoid.
Hope everyone had a fantastic Thanksgiving, I know I ate way too much! Hugs to you all!!
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Old 11-28-2008, 10:29 AM #18
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Default Gabby..

Mine ended too and I don't remember why, but I think it was my body adjusting to the Fentanyl Patch....

Thanks for responding...


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Originally Posted by gabbycakes View Post
Hi Nopainever,

I also had that problem with urination but it just seemed to go away. At that time I was doing 5 day ketamine procedures with boosters and I think that had alot to do with it. Right now and for the past year I haven't had any problems and my last ketamine booster was January 08.
Thanks for the post. I never heard of anyone else having this problem.

Thanks again,

Gabbycakes
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Old 11-28-2008, 05:49 PM #19
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[Thanks Heather,

I remember mine was getting so bad I had to push on my stomach at one point and then slowing it also just went away. Very weird. Thanks for responding.

Gabbycakes.




QUOTE=nopainever;415875]Mine ended too and I don't remember why, but I think it was my body adjusting to the Fentanyl Patch....

Thanks for responding...[/QUOTE]
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Old 12-03-2008, 05:47 PM #20
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Default Same..

Hi there
I also have problems with urination but I think they are a direct result of RSD symptom edema.. when my lower body swells up I can't seem to go without alot of pushing and similar dificulty as you all described.. but after the swelling goes down the next day or after elevating lord help me if I sneeze cause it's like my muscle there is dysfunctional and allows far too much leakage post swelling for my liking.

I have missed you guys, moved to another city, I am expecting a grandbaby any day now.. other than that things are the same for me.

hugs all,
Sandra
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