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 01-23-2014, 12:12 AM #31
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Side tracking a bit more.. sorry Nanc.

but seriously why can't they do a commercial for CRPS oh yeah because they can't fathom this type of pain! grrr.
It's all about advertising dollars and selling their drugs. If they really do come out with a drug specifically for CRPS perhaps this is where I pitch a commercial for them.


Oh Nanc, I am so sorry that you are dealing with so much. I saw the pics and omg OOOOUUUUCCCHHHH! I wish I had something to offer you. A silly cyber hug is all I have I sure hope you find something that helps and that you feel better quick!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 01-23-2014, 01:30 AM #32
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It's all about advertising dollars and selling their drugs. If they really do come out with a drug specifically for CRPS perhaps this is where I pitch a commercial for them.


Oh Nanc, I am so sorry that you are dealing with so much. I saw the pics and omg OOOOUUUUCCCHHHH! I wish I had something to offer you. A silly cyber hug is all I have I sure hope you find something that helps and that you feel better quick!
Thanks Vrae, I will take the cyber hug

I hope you are doing better
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Old 01-24-2014, 06:32 PM #33
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Hi guys! Just wanted to let you know that my incision sites are drying up...finally!! I am still fighting the itching and irritation, but they are getting better. Yesterday I ran out of the soap I was using and tried a different one (same kind, different scent). Yeah, that was a bright idea! You will never believe this, but I am allergic to it I know, such a shocker. I was taking my benadryl and itching so bad. This morning when I woke, I had a rash everywhere. Seriously??? More rashes and itching....yay! Called my dr and now I am taking some meds for this. I am so over this crap!!!

My left hand is hurting in places it never has before and my interstitial cystitis is flaring. The fun never ends...

Thanks for listening to my vent...
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Old 01-24-2014, 06:37 PM #34
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Hi guys! Just wanted to let you know that my incision sites are drying up...finally!! I am still fighting the itching and irritation, but they are getting better. Yesterday I ran out of the soap I was using and tried a different one (same kind, different scent). Yeah, that was a bright idea! You will never believe this, but I am allergic to it I know, such a shocker. I was taking my benadryl and itching so bad. This morning when I woke, I had a rash everywhere. Seriously??? More rashes and itching....yay! Called my dr and now I am taking some meds for this. I am so over this crap!!!

My left hand is hurting in places it never has before and my interstitial cystitis is flaring. The fun never ends...

Thanks for listening to my vent...
Oh Gosh Nanc, I am sorry!!!

Have you ever tried Dr. Bronner's soaps? They are the only ones I can use without sensitivity issues.

Glad the incisions are drying up and closing. Things are looking up a bit
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Old 01-24-2014, 06:44 PM #35
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Oh Gosh Nanc, I am sorry!!!

Have you ever tried Dr. Bronner's soaps? They are the only ones I can use without sensitivity issues.

Glad the incisions are drying up and closing. Things are looking up a bit
Hey Tessa! I used Dr Bronner's soaps for a long time. I used the bar soap, couldn't tolerate the liquid. I stopped using it because it causes this white film to build up in the shower drain and clogs it up...really wierd!

Yes, things are beginning to look up as far as the surgical part goes Did I tell you that my urogyno thinks I am having RSD spread...umm, down there? Been having major burning and shooting pains along the outside...not happy about that!
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Old 01-24-2014, 08:06 PM #36
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Hey Tessa! I used Dr Bronner's soaps for a long time. I used the bar soap, couldn't tolerate the liquid. I stopped using it because it causes this white film to build up in the shower drain and clogs it up...really wierd!

Yes, things are beginning to look up as far as the surgical part goes Did I tell you that my urogyno thinks I am having RSD spread...umm, down there? Been having major burning and shooting pains along the outside...not happy about that!
lol.. The white film is the reaction to chlorine and other chemicals added to the water supply. It is annoying but cleans up easily with CLR which we spray weekly in the shower basin.

Gosh, I am sorry that they think it is spreading to that area. I can totally sympathize with you on that and will be here if you have any specific questions.. my nerve damage and subsequent CRPS II originated with the Femoral and Illioinguinal nerves so I am intimately (no pun intended) familiar with this particular area being affected by this monster. TMI.. but just tinkling is excruciating painful - my heart goes out to you!!!

Another thought on the itching.. how about vinegar? I have applied using a spray bottle when my rash itched so badly.
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Old 01-24-2014, 08:16 PM #37
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lol.. The white film is the reaction to chlorine and other chemicals added to the water supply. It is annoying but cleans up easily with CLR which we spray weekly in the shower basin.

Gosh, I am sorry that they think it is spreading to that area. I can totally sympathize with you on that and will be here if you have any specific questions.. my nerve damage and subsequent CRPS II originated with the Femoral and Illioinguinal nerves so I am intimately (no pun intended) familiar with this particular area being affected by this monster. TMI.. but just tinkling is excruciating painful - my heart goes out to you!!!

Another thought on the itching.. how about vinegar? I have applied using a spray bottle when my rash itched so badly.
Funny thing is that that white film only happens when I use Dr. Bronner's soap, doesn't appear any other time.

I think with all this other stuff going on, it is causing my IC to flare. With that, it hurts to tinkle too and when the IC flares, frequency and urgency does too. Then the possible RSD on the outside...well, it is just a treat! Glad I can talk to you about it, but sorry you have that pain!

You know, my sister said something about trying vinegar the other night and I totally forgot about it. Thank you for the reminder. I think I will try it now!!
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Old 01-24-2014, 08:40 PM #38
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Hi guys! Just wanted to let you know that my incision sites are drying up...finally!! I am still fighting the itching and irritation, but they are getting better. Yesterday I ran out of the soap I was using and tried a different one (same kind, different scent). Yeah, that was a bright idea! You will never believe this, but I am allergic to it I know, such a shocker. I was taking my benadryl and itching so bad. This morning when I woke, I had a rash everywhere. Seriously??? More rashes and itching....yay! Called my dr and now I am taking some meds for this. I am so over this crap!!!

My left hand is hurting in places it never has before and my interstitial cystitis is flaring. The fun never ends...

Thanks for listening to my vent...

NO one can blame you for venting. You have been thru so much and any more added issues seem unrelenting.

Prayin the worst is almost over. Thanks so much for sharing.


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Old 01-24-2014, 08:58 PM #39
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Funny thing is that that white film only happens when I use Dr. Bronner's soap, doesn't appear any other time.

I think with all this other stuff going on, it is causing my IC to flare. With that, it hurts to tinkle too and when the IC flares, frequency and urgency does too. Then the possible RSD on the outside...well, it is just a treat! Glad I can talk to you about it, but sorry you have that pain!

You know, my sister said something about trying vinegar the other night and I totally forgot about it. Thank you for the reminder. I think I will try it now!!
I hope the vinegar works!! Just keep trying things something has got to work.. I think and hope anyways.

lol.. one bonus is no more worrying about the bikini line in that area as the hair fell out within days of waking from surgery..hahahhahha sorry TMI but it is quite funny really. That is why I depend on the lidoderm patches and the SCS if I didn't have both then just the sensitivity to touch alone (never mind all the other symtoms in that area) would crumple me. Really tough on intimacy... that's a whole other topic ugh.. seriously it sucks. All of it does but honestly this one adds a whole new level to misery.

hang in Nanc, you are such a strong person!!
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Old 01-24-2014, 09:53 PM #40
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I hope the vinegar works!! Just keep trying things something has got to work.. I think and hope anyways.

lol.. one bonus is no more worrying about the bikini line in that area as the hair fell out within days of waking from surgery..hahahhahha sorry TMI but it is quite funny really. That is why I depend on the lidoderm patches and the SCS if I didn't have both then just the sensitivity to touch alone (never mind all the other symtoms in that area) would crumple me. Really tough on intimacy... that's a whole other topic ugh.. seriously it sucks. All of it does but honestly this one adds a whole new level to misery.

hang in Nanc, you are such a strong person!!
Gotta try stuff to find out if it will work. Since everything bothers me, I only put the vinegar on a few spots. My sis told me to try apple cider vinegar...it stinks!

Well, if we are gonna have this wretched disease we deserve a bonus here and there...like hair falling out in certain areas But, the hair on my face is growing more and more...nice huh? Thank God my husband is sooooo understanding, intimacy...yeah, that is a whole separate topic there. And it does suck!

Thanks again for the positive reinforcement and tips
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