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 01-03-2009, 10:50 AM #11
liz0688 liz0688 is offline
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Originally Posted by MominPainRSD View Post
Yeah.......HOLY COW.......SOMETHING they put in my IV (apparently AFTER they put the "chilling out" meds in) caused my hand to BURN like a MF (I believe I woke up and used that term as it went in). THAT was honestly the worst part of it. It woke me up out of my nice mellow state and felt like they had just injected hot burning acid into my hand. Anyone else had that??? Hubby said I looked like I had a severe sunburn when I woke up......ALL over my entire chest and tummy. The Benadryl worked and I didn't have to take more.

So......the morning after my block.....I am doing ok. The swelling has subsided, I won't know until I hop in the shower as to whether the color changes are still there (I'm assuming they are.....ankle turned BLUE last night). The allodynia seems a bit better.....it's mostly on my toes now (MAN, I wish those pesky ants would quit gnawing away at them). I can, at least, touch my foot and it just feels numb, not like glass is being rubbed into it (although that symptom has been coming and going over the past week anyway). I have a hair appointment this morning......will have to do a lot of sitting. THAT should be the test.....letting my foot dangle. If it swells (like it usually does when I'm upright), I will assume there has not been a lot of improvement. We shall see....

I tried to switch my mood to "optimistic". I thought there was one that said that. Apparently not. I chose "fine" since I was "buzzed" last night (one glass of lovely Cabernet) and "hungover" is not applicable. They SHOULD have an "optimistic" mood. We deserve at least to feel that, right???

You're all correct......at this point, I should be looking for ANY improvement for ANY of the symptoms....not expecting a sudden "cure". I should know well enough to just lower my standards and then I'm not as disappointed when good things don't happen!!

I have a friend who always quoted two things (I used to think of her as "cynical".....by golly, there's a button for that one here!!......I've found a lot of truth in these statements in the past decade). One is:

"The best way to avoid death is to avoid life".
The other (with my personal twist on it):
"Trust no one".

I chuckle as I write these. I try not to take things too seriously. While there may be truth in both statements, it is not a great way to live, and I have found myself more and more alone in life adhering to them. I choose to be "fine" today since optimism is not available at the moment!!
I'm off to get my hair done now so I can look PRETTY lying in the bed for the rest of the day!!

Best wishes to all for a pain-managed day!!!
I had the epidural block a year ago, the five day one, and I had the same reaction as you!! I had exsteme burning as if he was injecting acid.

The block was supose to go into my RIGHT foot, ok, I could feel the medication going into my back and down into my right leg but it felt just like acid, and did it burn.!! I had to have two vicodans right away and then a shot of morphine and it didnt even touch the pain I was feeling. By the time I left that day, my entire left leg was numb! This was suppose to be a five day ephy two! By the time I got home that night, my left leg, my whole waist area, my right arm and the right side of my face where numb! The next morning I went back to the doctor because he wanted to try more of the injection being it was to be a five day ordeal. As soon as he started the medicine again my right leg started burning, he imediatley stopped and said he had never seen this kind of reaction. My left leg took a year or more to get the feeling back in it and now I have rsd there too which my doctor will not acknowledge to this day. Now I have rsd on the entire right side of my body and still in my left foot, the doctor says its impossible that he didnt do it, and rsd dosent spread, lol

sorry so long guys, feel better ok,
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Old 01-03-2009, 01:32 PM #12
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Originally Posted by liz0688 View Post
I had the epidural block a year ago, the five day one, and I had the same reaction as you!! I had exsteme burning as if he was injecting acid.

The block was supose to go into my RIGHT foot, ok, I could feel the medication going into my back and down into my right leg but it felt just like acid, and did it burn.!! I had to have two vicodans right away and then a shot of morphine and it didnt even touch the pain I was feeling. By the time I left that day, my entire left leg was numb! This was suppose to be a five day ephy two! By the time I got home that night, my left leg, my whole waist area, my right arm and the right side of my face where numb! The next morning I went back to the doctor because he wanted to try more of the injection being it was to be a five day ordeal. As soon as he started the medicine again my right leg started burning, he imediatley stopped and said he had never seen this kind of reaction. My left leg took a year or more to get the feeling back in it and now I have rsd there too which my doctor will not acknowledge to this day. Now I have rsd on the entire right side of my body and still in my left foot, the doctor says its impossible that he didnt do it, and rsd dosent spread, lol

sorry so long guys, feel better ok,
Was it an epidural injection they did on you or a lumbar sympathetic nerve block??? Apparently, they are two different things and they inject different meds. I had an epidural injection for severe back pain about 7 years ago. They made me worse, so I quit after the 2nd one (they're supposed to be given in sets of three). I've never heard of them doing epidural injections so close together as they did yours. What kind of doc was giving them???

They actually had me pretty well out of it for my sympathetic block yesterday. I don't remember a thing. I "woke up" and didn't know where I was. I have no recollection of getting off the table into the wheelchair. I just remember itching like CRAZY all over.

I still choose to be "optimistic" today. I don't think I'm worse than I was.....I may be a bit better. I survived my hair appointment on Advil alone. Toes feel like ice, ankle throbbing some......could be the shoe and sock I was wearing. Tonight will be the true test......symptoms ALWAYS worse at night.

I am so sorry for your experience. It scares me to death to have another one done because I know that any one of them could end up like that. Of course, I have to weigh my current abilities (which are few) against the risks. I MUST do whatever I can to hopefully allow myself to stand or be upright for longer than 10 minutes. I have to walk very slowly anyway so it's like "dog minutes" as it is (I used to scurry everywhere I went.....now it takes 5 times as long to do the simplest things).

How are you now??? You mentioned your RSD spread. Have you switched docs (I hope so)??? How long have you had it??? I wish you the best of luck and progress.
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Old 01-03-2009, 04:31 PM #13
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I am SO sorry to hear that you are in so much pain and hope and pray that you will find something that will help you soon!! Please don't give up hope just yet, there are still many drugs and treatments out there that can help you and reduce your pain and other symptoms!!

I have only had one nerve block and I didn't respond very well to it at all. I developed some pretty serious complications which ment I was left in a wheelchair for 13 months. It took ages for my doctor to try and awknowladge the problem but eventually he said that the nerve block DID cause that problem and in my case, I should never have any more nerve blocks. After I had my nerve block, my mum found an article on the internet that stated that you should NEVER inject directly into an RSD limb unless you absolutely have to!!!! I just wondered whether your doctor injected into your RSD limb?? If he did, I would definitely speak to him about it - my doctor told me he was one of the best doctors in our area for treating RSD but he had never read that article, it was only when we showed it him that he finally believed us and he later said that he would never do that again to any of his other patients.

I am keeping you in my thoughts and prayers and hope that you get some much needed answers and relief soon!!
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Old 01-03-2009, 05:13 PM #14
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Originally Posted by GalenaFaolan View Post
The one and only block I had was horrific. It put me in 10+ pain for 2 months afterward! Holy cow I was so miserable! I couldn't sit,stand,lay down, nothing!! I said I must have looked like a fish out of water doing all that flopping around. LOL I've known many others who were put into more pain because of the block than before they had it done. It just sucks and really disappointing when it doesn't work.

I'm sorry you didn't have better luck with it though. It does sound like an allergic reaction to one of the meds in the block too. I guess wait and see what your doc says about it as to whether it'd be worth it to try again or not. The best way to make sure a block is done correctly and place where it should be is having it done under Fluoroscopy, which is a big word for live xray. It shows the doc exactly where the needle is so as to put it in the nerve bundle.

Gymjunkie is correct on the views changing about the blocks. It doesn't seem to matter how "early" you get them done. They're not a very good diagnostic tool which is what many doctors used to go by. There are many factors involved as to why blocks fail. One is a individuals reaction to the block itself. The biggest reason is whether the rsd is SMP or SIP. Sympathetically Maintained Pain seems to respond better to pt and blocks. Sympathetically Independent Pain is much more difficult because it doesn't seem to respond to blocks at all or very little and pt also seems to set the pain off easier.

Here's a link that explains SMP and SIP. Just scroll down a little bit, it's title is in bold print. http://www.rsdconsultants.com/crps_abstract.htm

Another one that is good: http://www.nationalpainfoundation.or...TO_Surgery.asp

This one is really good: http://www.physsportsmed.com/issues/...ekhail.htm#box

Hope these help understand it all a bit better. Education is our best friend trying to understand all the components of rsd and the how and why of the things we feel and go through.

I fully believe this is why I had the reaction I had to the block. As always though, it really is an individuals body that determines everything from blocks to meds and how they react or don't react to it.

Hugs,

Karen
Hey......that's right......I DID forget about the different reaction between the two "pains" (SIP OR SMP). Thanks for sending these links. I'll read up on them. I don't think I'm any worse for wear today. I can't say that the injection "helped"......maybe a little bit???? I AM able to move my ankle around a bit more. The problem is that doing so causes the swelling to increase almost immediately, which DECREASES my mobility. Most of my symptoms seem to be related to the darn swelling. If they could simply keep THAT down, I'd be ok. The problem is that everything makes it swell.....walking, moving it, standing, shoes, socks......the only time it's "ok" is when I'm not using it at all.....which is contraindicated in general. I shall continue with the Epsom salt soaks......at least they warm up my feet. My incision has STILL not healed from the surgery a month ago (December 3). The fluctuating swelling is constantly putting stress on the cut (and it's several inches long). It has a huge scab on it that will not come off and is peeling all around it down my ankle. My feet used to be so cute!!! I have Frankenfoot now!!
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Old 01-03-2009, 07:32 PM #15
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I'm sure you have tried this... so just a reminder...

try moving your foot around slowly while it is soaking in the warm epson salt water.

Most of my PT was in a warm water swim spa... it helped me maintain a good deal of mobility.
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Old 01-03-2009, 10:12 PM #16
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Dang......stupid rsd impedes healing because of the lack of proper circulation in the limb. I wish I could, wave a wand or something to get that darn swelling down for awhile for you so the inscision could heal and let you walk and "be normal" for a bit. Seems like you just can't win at the moment, but the game ain't over yet! Keep on going and I'll cheer you on.

Hugs,

Karen

Oh, you're welcome for the links.
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Old 01-04-2009, 01:18 AM #17
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Hi MominpainRSD,

Hi, it's me, Loretta, I'm so sorry your block wasn't effective. I wish you got get HBOT. The 100% oxygen at over twice the pressure promotes healing. I would like that would help your incision heal because it promotes circulation. I really don't know too much about it, but that's what my Dr. explained my last appointment. I'll Private Message you tomorrow with the phone number we talked about. Again, I'm so sorry. I just don't want you to have any spreading of this like some of us have had to deal with.
I'm also thinking of your job situation too and know how much stress that puts on both you and your husband. Please let us know if he gets a job, I'm always thinking about that. I'll PM you tomorrow. Hope you can rest well tonight. Your friend, Loretta
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Old 01-04-2009, 01:22 AM #18
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Originally Posted by GalenaFaolan View Post
Dang......stupid rsd impedes healing because of the lack of proper circulation in the limb. I wish I could, wave a wand or something to get that darn swelling down for awhile for you so the inscision could heal and let you walk and "be normal" for a bit. Seems like you just can't win at the moment, but the game ain't over yet! Keep on going and I'll cheer you on.

Hugs,

Karen

Oh, you're welcome for the links.
Thanks so much!! I wish I knew how to post some pictures on this forum for you all to see my swollen foot and incision. If anyone could walk me through it (no pun intended.....sorry I'm really tired!), I'll show you lots of pictures.....I've kept a photo diary of the whole mess from presurgery (Dec. 2) to post sympathetic block (Jan. 2). It actually looks ok today (relatively speaking). It got deep red and hot a few hours ago, but is back to "normal" now. I've been on the phone with friend all night. I am exhausted. Will see you all in the morning!!!

Restful sleep to all!!
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Old 01-04-2009, 03:34 AM #19
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Thanks so much!! I wish I knew how to post some pictures on this forum for you all to see my swollen foot and incision. If anyone could walk me through it (no pun intended.....sorry I'm really tired!), I'll show you lots of pictures.....I've kept a photo diary of the whole mess from presurgery (Dec. 2) to post sympathetic block (Jan. 2). It actually looks ok today (relatively speaking). It got deep red and hot a few hours ago, but is back to "normal" now. I've been on the phone with friend all night. I am exhausted. Will see you all in the morning!!!

Restful sleep to all!!
Here's your walkthrough! It's really easy.

When you reply to someone or start a brand spankin shiny new post you type inside this awesome little box with [b]all[/] those buttons at the top. **

There's a icon in the bottom row....a little square box that is yellow and looks like it has a couple of mountains in it, right underneath the little arrow arcing to the left. See it there?

Ok, now click it and you get a thingy that says to put the URL of your image. What goes there is the IMG code from where your pic is at, like photobucket. It's the only one I can think of where you can upload your pics online for things like this.

Then click ok and WA-LA!!!

Hope I did a good job explaining, if not...reach out and smack me and then tell me what you don't understand. LOLOLOLOL

***The first sentence in these instructions is not meant to be taken in a mean way....like you're an idiot and don't know how to reply or something. It's meant in a funny ha ha way. I know the typed words are sometimes taken the wrong way so thought I'd clarify.

Hugs,

Karen
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Old 01-04-2009, 11:52 AM #20
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Originally Posted by GalenaFaolan View Post
Here's your walkthrough! It's really easy.

When you reply to someone or start a brand spankin shiny new post you type inside this awesome little box with [b]all[/] those buttons at the top. **

There's a icon in the bottom row....a little square box that is yellow and looks like it has a couple of mountains in it, right underneath the little arrow arcing to the left. See it there?

Ok, now click it and you get a thingy that says to put the URL of your image. What goes there is the IMG code from where your pic is at, like photobucket. It's the only one I can think of where you can upload your pics online for things like this.

Then click ok and WA-LA!!!

Hope I did a good job explaining, if not...reach out and smack me and then tell me what you don't understand. LOLOLOLOL

***The first sentence in these instructions is not meant to be taken in a mean way....like you're an idiot and don't know how to reply or something. It's meant in a funny ha ha way. I know the typed words are sometimes taken the wrong way so thought I'd clarify.

Hugs,

Karen
You're so cute!!! I guess we should all add a disclaimer at the bottom of each post saying:

"Information included not intended to discourage, frustrate, demean, or offend the reader in any way. These views do not reflect all those with RSD or their affiliations. Please contact your physician with any questions or concerns that may ensue after reading the enclosed information as THEY think they know everything about the disease of question as opposed to the ones who actually suffer from it. Must be 18 years or older to read or reply or else have a parent's consent."

You did not offend me in the slightest (I LOVE a person with a sense of humor!!! I feel like people don't "get" mine half the time)!! In fact, I actually appreciate your "upload pictures for dummies" approach......I just wish it had included how to get it off my stinking computer ONTO the little yellow button with the mountains in it!!! Hubby (I call him my "I.T. guy") will be home in a while and perhaps be able to help me get them posted. For the time being, I've put it as my "profile picture". This was a few hours after my injection......turned red as a lobster (I am not usually that color) and was quite swollen on top (which doesn't show up well in this photo). I posted this one because you can kind of see my incision as well. It is peeling all around it and looks nasty. I have a GREAT contrast picture of both my feet/calf's that show the color difference. I'll post that one later.

Sooooooo......for your viewing pleasure.......check out my profile picture!!! Thanks for trying, BTW......I am the poster child for "directionally dysfunctional". Really......I am a smart woman but I can get lost trying to pull out of a parking lot (or heck.....even trying to find my CAR in the parking lot!!!). I need a GPS implanted in my spine!!!
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