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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: RSD help
Apr 6, 2011
Hello,

I am sorry that those words were spoken to you. In my 10 year Journey, i have learned that if one doc says it..you have it..no joking!.....I cant tell you what to do, but I can tell what i would have done if i could do it all over again.....

10 years ago, I would have begged for a SYMPATHECTIC Block even if it was the wrong dx. research says to get those blocks..pronto! like within the first 3 months of onset....but they waited so long to dx me that it was too late for the block to work, but we tried well over 50 some type of block and I need another one..for a simple 4 hours of blissful numbness but mind you, you cant walk real well....and if you get them in your head..forget it..it is like your a head is a balloon. It is no worse than an epidural when you have a baby...kind of..You need to find a Pain Doc - a real one.. They are anethioligists with some massive knowledge. My Dr. is the Bomb! Do me a favor? post another thread asking for a good RSD Dr. in your area....there are good people on here that will help you find one. I would go outside this Dr. that dx'd you. get a second opinion...but please find the time to make it happen before it gets too far....I hope I am wrong....THE WORDS RSD ARE NOT LOOSLY USED (I think dr's are scared of labeling souls that)..its not like saying yeah! you have a sinus infection when you dont...This disease is serious and as the years roll on more and more treatments are becoming available...I am kind of at the end of the treatment rope...I am headed for Ketamine infusion in Germany with Dr. Swartz....I havebeen on the waiting list for almost 5 years and they say it takes about 8-10 years for you to move up that list...so if my two spinal cord stimulators fail. I still have some kind of hope...if not back on opiates i go...dont get me wrong it may for a ot of people but at some point during the 4 years of use.....opiates and i became old buddies and I just couldnt hurt my family anymore, so i quit...just quit..heavy stuff we have to go thru....start reading peoples posts and we all run around like rats running scared from the subway.....

Hey! hang in there...its scary but you will find comfort here and if you find that you do not have RSD then you should be posting on chronic pain board..they may be able to direct you in the right direction...either way, you will see the same doc as i do...so stay here and Welcome and just try to stay active within reason...what you are seeing and feeling is normal in the beginning, but if you baby your hurts RSD will eat it alive....just a lil at a time and please be careful with pt..i did it and sad to say it made it worse....pt's dont know how to deal with rsd..all the good rsd docs are in the military..so i hear! here is my suggestion while you wait for your next move...rest when you need and get moving within your limits....no joking! yoga yoga! it teaches you to breath thru pain and when you really get good you can breath and work through right in front of people...my daughter says "Knock it off! I know you are doing yoga..there should be a law against yoga and driving" Ha! Ha! she is funny!

I hope I was not too honest with you and didnt scare you but I see this time and time again when people doubt the dx and say naaaa! not me..the internet is lieing...how many RSD symptoms do you have? 3 or 10 or all (theres like 50 of them)? and oh yeah! not all the symptoms are on there....the skin conditions we deal with is crazzzzzzzzy...how crazy is this? Only half of me sweats! i have not had a period in years but i am lactating...huh?!?! my baby is 12 whaaa? Whatttt?!?!? oh and the visual disturbances the blindness double vision and on and on and on!

Just remember that no matter where this takes you..you need to stay strong and positive...May the sun be bright, wind at your back and rainbows at your feet during your journey.

K
Re: RSD help
Apr 7, 2011
Can they do a nerve block just in my foot. Looked it up on the internet and saw face, back, neck, etc. but not just a foot. Your not scaring me,it's the whole situation that does. PT said yesterday that I didn't have it. My color was good. The reason she said it was last friday my foot had a greenish tint to it. My symptoms are a constant burning, pulsing electric like feelin in the outside half of my left foot. Worse near the heal(where the went on to do the ostotmy) and little toe, and gradually tingle(?) a little less has you move to the inside of foot. I am 9 weeks off surgery, my foot is still 3 times swelled. If I don't elevate it it turns a blotchy purple red. My foot feels cold at times but actually is warm or warm when I have it uncovered and is really cold. And PleaAAse don't touch it. It's like you zap it with electricity. Firm grips are more tolerable, but a brush or light touch is torture. I do sweat, usually around my head and neck, but I am almost 46, that could be THE TURN : ) . I just don't know. PT says yes, then says no. I haven't seen my surgeon yet, do that next week. Hopefully find out more than. Curious bout nerve block though. Even if it isn't RSD, I'd love to loose the feeling. Thanks for your informatiion. Everyone has been helpful.
Re: RSD help
Apr 7, 2011
My podiatrist and the PM think I might have RSD. I have several symptoms but even the color change isn't constant. They are concerned enough that they are doing the sympathetic nerve block next week with 2 more scheduled the following 2 weeks. I understand you apprehension. I have burning, color change (not as noticeable but there), pain, sensitive to touch..esp wind blowing/ceiling fan, and I can't rest my feet on my bed or anywhere (the heel). I know there are others, I just can't think clearly right now. LOL. The sympathetic block is done in the back for the lower extremities. There is a local block they can do (have had it done) but it basically just numbs the foot for a short while. It is not pleasant..at least it was BAD for me. My foot was numb for about 5 hrs after then the pain/burning came back. (this was done by my old podiatrist)

good luck. =)
Re: RSD help
Apr 8, 2011
FYI - You can't go to Germany for the ketamine coma - it has been closed down for quite some time. But Mexico remains open and I have heard that the doc there does a terrific job.

Good luck, Sandy


[QUOTE=RSDfree1day;4724892]Hello,

I am sorry that those words were spoken to you. In my 10 year Journey, i have learned that if one doc says it..you have it..no joking!.....I cant tell you what to do, but I can tell what i would have done if i could do it all over again.....

10 years ago, I would have begged for a SYMPATHECTIC Block even if it was the wrong dx. research says to get those blocks..pronto! like within the first 3 months of onset....but they waited so long to dx me that it was too late for the block to work, but we tried well over 50 some type of block and I need another one..for a simple 4 hours of blissful numbness but mind you, you cant walk real well....and if you get them in your head..forget it..it is like your a head is a balloon. It is no worse than an epidural when you have a baby...kind of..You need to find a Pain Doc - a real one.. They are anethioligists with some massive knowledge. My Dr. is the Bomb! Do me a favor? post another thread asking for a good RSD Dr. in your area....there are good people on here that will help you find one. I would go outside this Dr. that dx'd you. get a second opinion...but please find the time to make it happen before it gets too far....I hope I am wrong....THE WORDS RSD ARE NOT LOOSLY USED (I think dr's are scared of labeling souls that)..its not like saying yeah! you have a sinus infection when you dont...This disease is serious and as the years roll on more and more treatments are becoming available...I am kind of at the end of the treatment rope...I am headed for Ketamine infusion in Germany with Dr. Swartz....I havebeen on the waiting list for almost 5 years and they say it takes about 8-10 years for you to move up that list...so if my two spinal cord stimulators fail. I still have some kind of hope...if not back on opiates i go...dont get me wrong it may for a ot of people but at some point during the 4 years of use.....opiates and i became old buddies and I just couldnt hurt my family anymore, so i quit...just quit..heavy stuff we have to go thru....start reading peoples posts and we all run around like rats running scared from the subway.....

Hey! hang in there...its scary but you will find comfort here and if you find that you do not have RSD then you should be posting on chronic pain board..they may be able to direct you in the right direction...either way, you will see the same doc as i do...so stay here and Welcome and just try to stay active within reason...what you are seeing and feeling is normal in the beginning, but if you baby your hurts RSD will eat it alive....just a lil at a time and please be careful with pt..i did it and sad to say it made it worse....pt's dont know how to deal with rsd..all the good rsd docs are in the military..so i hear! here is my suggestion while you wait for your next move...rest when you need and get moving within your limits....no joking! yoga yoga! it teaches you to breath thru pain and when you really get good you can breath and work through right in front of people...my daughter says "Knock it off! I know you are doing yoga..there should be a law against yoga and driving" Ha! Ha! she is funny!

I hope I was not too honest with you and didnt scare you but I see this time and time again when people doubt the dx and say naaaa! not me..the internet is lieing...how many RSD symptoms do you have? 3 or 10 or all (theres like 50 of them)? and oh yeah! not all the symptoms are on there....the skin conditions we deal with is crazzzzzzzzy...how crazy is this? Only half of me sweats! i have not had a period in years but i am lactating...huh?!?! my baby is 12 whaaa? Whatttt?!?!? oh and the visual disturbances the blindness double vision and on and on and on!

Just remember that no matter where this takes you..you need to stay strong and positive...May the sun be bright, wind at your back and rainbows at your feet during your journey.

K[/QUOTE]
Re: RSD help
Apr 10, 2011
In general, how fast does this stuff spreads. Have a funny feeling in my right thumb today. Could be all the computer time, took a benadryl and seems to have haelped. Maybe I'm just scaring myself now. Information is a blessing and a curse. PT said something about skin getting scaly. When they took off my first cast, 2 weeks after surgury, My skin was dry and scale like under it. Has I washed it it came off, with the last off it peeling of the bottom of my heel. Thought it was way dry then( I had a cast on my right foot once for 6 weeks before they changed it, and don't remember it looking that weird. I'm confused. I have the burning, light touch torture feeling 24hrs. a day, my foot will turn purple if not proped, but I don't think i have other symptoms, or really what to look for
Re: RSD help
Apr 12, 2011
[QUOTE=knave;4725492]Can they do a nerve block just in my foot. Looked it up on the internet and saw face, back, neck, etc. but not just a foot. [COLOR="Purple"]hey lets learn together k? I am getting blocks there on friday or at least for that..and trigge rpoints in muscles..owwww![/COLOR]Your not scaring me,it's the whole situation that does. PT said yesterday that I didn't have it. My color was good. The reason she said it was last friday my foot had a greenish tint to it. My symptoms are a constant burning, pulsing electric like feelin in the outside half of my left foot. Worse near the heal(where the went on to do the ostotmy) and little toe, and gradually tingle(?) a little less has you move to the inside of foot. I am 9 weeks off surgery, my foot is still 3 times swelled. If I don't elevate it it turns a blotchy purple red.[COLOR="purple"]Thats what I call RSD Tattooing job..its like Henna..its temporary....[/COLOR] My foot feels cold at times but actually is warm or warm when I have it uncovered and is really cold. And PleaAAse don't touch it. It's like you zap it with electricity. Firm grips are more tolerable, but a brush or light touch is torture. I do sweat, usually around my head and neck,[COLOR="purple"]Welcome to my pain...i would have described it just as you although it does that in my hands arms, lower legs and feet... [/COLOR] but I am almost 46, that could be THE TURN : ) [COLOR="purple"]Girl i had the turn at 32...but hey I am lucky..I lactate...I feel like Gaylord Fockers Milked Cat...LOL[/COLOR] . I just don't know. PT says yes, then says no. I haven't seen my surgeon yet, do that next week. Hopefully find out more than. Curious bout nerve block though. Even if it isn't RSD, I'd love to loose the feeling. Thanks for your informatiion. Everyone has been helpful.[/QUOTE][COLOR="purple"] I only listen to my PM...everyone I just take what I want and leave the rest....its like learning how to garden...do what works for your soil and climate..I am staring PT soon and other inner healing stuff..i have to beleive in it..ya know...one last grab for my brass ring...Hang in there....yeah! cut me open again please....i had two kids natural no epidurals to be cut up later and have 100 Epidurals! FAIL!

Peace,
Kim[/COLOR]
Re: RSD help
Apr 17, 2011
I don't know much. every day I research more, learn more, and read more posts. I was surprised when my insurance rep. called me, and told me that they had set up an appt. with a nuerologists, and that they were trying to find out what tests he wanted done before I went that he needed. They had also researched the nearest RSD specialist near me(in Denver). I know the horror stories out there, but thankfully, mine has been behind me 110%. Dr. gave me Lyraca and took me off the vicodin. It knocks me for aloop, but I've only taken 4 doses. At least I'm sleeping better, instead of lying there feeling my foot pulse and burn/freeze. Still have the feeling of numbness in my calf(like my foot it is on the outside), hopefully that goes away. I guess they are questioning RSD because the symptoms I have isn't as serious as they expect. I have numbness, super hypersensitivity(outside left foot), swelling, and discoloation if my foot isn't propped up. I guess they want to see scaly skin, or shiny thin skin and total discoloration as well. I don't know. At least my PT is taking it seriously, and working to head it off.
Re: RSD help
Apr 17, 2011
Knave
You don't have to have all of the symptoms to have RSD. The symptoms you have don't have to be 24/7 for you to have it.
Even long term suffers get it wrong. was told that because my pain wasn't chronic 24/7 I didn't have RSD, how I wish they had been right but my specialist says I do have it.
Re: RSD help
Apr 17, 2011
[QUOTE=AZ gurlie;4725575]My podiatrist and the PM think I might have RSD. I have several symptoms but even the color change isn't constant. They are concerned enough that they are doing the sympathetic nerve block next week with 2 more scheduled the following 2 weeks. I understand you apprehension. I have burning, color change (not as noticeable but there), pain, sensitive to touch..esp wind blowing/ceiling fan, and I can't rest my feet on my bed or anywhere (the heel). I know there are others, I just can't think clearly right now. LOL. The sympathetic block is done in the back for the lower extremities. There is a local block they can do (have had it done) but it basically just numbs the foot for a short while. It is not pleasant..at least it was BAD for me. My foot was numb for about 5 hrs after then the pain/burning came back. (this was done by my old podiatrist)

good luck. =)[/QUOTE]

You don't want to get an injection in your foot or sight of rsd without a sympathetic block done first. My PM dr. told me that AFTER my OS gave me a cortisone shot in my ankle and my rsd got stirred up again. So I would avoid that. Like Az gurlie said, the sympathetic block for you foot would be in your lumbar area of your back. I have rsd in my foot too and that's where they've been each time. I'll never get another shot in my foot, at least without a sympathetic block first.
Re: RSD help
Apr 17, 2011
Sadly, the few symptoms I have are 24/7. The swelling won't go down, massages, compression socks, naproxin, nothing. And the electric/ burning sensation and hypersensitivity 24/7. Been having alot of headaches lately. Don't know if that is RSD or stress. At least my PT, Dr., and insurance rep. are taking it seriously. I'm sure non of them want it to be RSD,but, NEWS FLASH: neither do I. I'd love something simple, like a damaged nerve that can be fixed easily, but I guess in my heart I don't buy it. I've known since 2 weeks after surgery, something wasn't right. Guess I'll just have to ride this merry-go-round and see where it stops. Either way, I'm not going down without a fight. Talking to you all gives me hope and courage. And I'm lucky to have people willing to share their experience and ideas. They have really helped over the last few weeks. And I thank Kevscar for the help and keeping me grounded. Thank you all.
Re: RSD help
Apr 27, 2011
talked to my PT today. She says she has quite a few patients on nueroten, non have reported any major side effects. Mostly tiredness, the groggy/drunken type feeling. Non have reported withdrawel symptoms, but the ones she has have only been on it an average of 4 months. She recommended I give it a try for a few weeks, she didn't think I would run a risk of withdrawl in that time. I'm still kind-of torn. I'm not big on medication. Has anyone heard of any safe alternative medicines out there. I couldn't find out much on the net. Would be interested in hearing. I don't think mine is getting better. Been doing aggressive PT now since first week in March(2 months off surgery date). The tingling on the outside of my foot has spread to the inside of the foot now. Both the inside and outside of my foot is now hypersensitive, but the outside is now painful to the touch instead of just that electrict like feel. Still crossing my fingers that it will get better, but beginning to think that isn't a happening thing. Will see a nuerologist on 22nd of June. If he agrees with my PT and surgeon then I'll see a RSD Dr. in Denver.Wishing all here the best. I remain open to ideas and suggestions, on any thought. :wave:





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