Reflex Sympathetic Dystrophy (RSD)

[Lily]

Hello Christy,I'm so glad to hear from you.I really missed you but i know you have been busy.Hate to hear about your leg and foot.That's were my rds is and it's a nightmare trying to walk.I Wanted to ask you to go to rsd support.com for info. myself and others in which you will see if you go to this link .all you have to do is join and post 5 things on the forum then you can pm.You would not believe how great this site is .We can't wait to see your name on the site.Please ck it out.Dennyfan and others love it they have all the info you need and even games and pm.Hope you check it out.We will still chat on this forum also but please just ck on it.Love ya,Lorie

[Dianne]

For those of you are thinking about having the SCS trial and have heard that it is a painful procedure and I want to tell you ahead of time so that you are prepared that it is very painful since you have to be awake for it to tell the doctor whether or not they are getting to locations of where you have pain. I was told just before I went in that it would be the most painful thing that I will ever have done, that is the reason for the visit with the Psychologist to see if you are able to handle the pain. But even though it was very painful it was well worth it. I had my trial on March 20th and had it removed on the 28th and I really miss having it and getting instant pain relief, it was great not having to wait for the pain meds to take effect. The stimulation takes a little bit to get used to but once you have it you tend to forget the extra pain you had to go through to get there. I really miss having it and can't wait to get the permanent one implanted.

I would really recommend at least getting the SCS stimulator trial and giving it a shot, it is so much better than dealing with the pain and the side effects of the pain meds. Also, just so you know depending on the amount of pain your dealing with the SCS stimulator may only give you a 50 to 60% decrease in pain and you may still need some pain meds but hopefully not as much as before the stimulator.

Do ask you doctor a lot of questions about the trial so that you are prepared for what will happen. I'm not telling you this to scare you I just want you to be prepared ahead of time instead of like me I didn't know how bad it might be until just before they wheeled me in and that left no time to change my mind which I don't think I would have since my choices are limited at this point.

I wish the best for all of you and hope you have great success with your SCS trial.

[dennyfan]

Dianne, I have heard from my Aunt & Others how bad the trial is. I will only be woken up to tell them if its working and in the right place but I am scared. I heard it still can be painful for the week you have it too. I get mine out in on a monday and out on a friday.So luckily I will not have to go as long as you. I so appreciate hearing what it will "Really" be like from someone who has been there. I dont want to go in like you did and be suprised or blindsided by a lack of information. So thank you for taking the time to talk to me.
Denny

[dennyfan]

Christy, I hope you can make the trip that would be fantastic for you & your family. My son & I took a trip just the two of us a year ago (his last spring break in high school). We had taken trips togeether almost every year since he was little even if they were just a couple days. I wanted that time with him before he left for college. It was one of the best things I could have done even though I was in so much pain from driving. We ended up having to get a rental car so he couldnt help me drive. I feel lucky sometimes that my RSD is in my arm and not my feet or legs so that I can still walk. I am sorry that it looks to be spreading & that you cant get your injection. Lorie, you & I are all looking at SCS trials. I hope that we can offer information & comfort to eachother through it if thats what we decide to do.
Love Denny

[dennyfan]

Gojogo, I am sorry your wife battles I/C it sounds very painful. I hope too that my bladder dysfunction is a simple fix. Though I worry that any surgery could cause the RSD to spread. Think happy thoughts would you? Thanks Gojogo. Your a good friend.
Denny

[Lily]

GoJoGo, Please tell your wife i hope they will come up with something to cure I/C or at less calm it down to were her pain is controled very soon.As i told you, I worked for a urologist before i had to stop working and i seen pts with I/C and i know what kind of pain they go through.To tell you the truth i don't think i could handle the consant pain she is going through and having to deal with rsd to.That would be a nightmare.I reallly care about you both and i hate she's having so much trouble.I have grown a close friendship with you both and there's not many people in this world that care about everyone like you guys do.I will be glad when you get to pm on the other site.I think you and your wife will enjoy all the caring and supportive people there.I couln't believe there were so many people from around the US and the UK willing to support others with rsd with open arms.Don't get me wrong this place is nice to come to for support also, but i love to share stories and learn how others are dealing with rsd and what kind of treatments they have had and i think you like to research things like i do.Have a good eveing.Hope to hear from you soon.Lorie

[okiebutterfly]

Hi everyone! I have a few questions for everyone that reads this. My first one is IF I decide to go with the SCS, is there a hospital stay? Also, my RSD is in my legs, where would the stimulator be placed? Is it in your neck or lower back ? The reason I ask is my blocks are always in my lower back (L3, L4)
Also, I have been diagnosed with IC (interstatial Cystitus) they are thinking that it is part of my RSD now. My Urologist said they can go hand in hand in some people. And I totally feel for GOJO"s wife. Its a horrible pain with bladder spasms. I told my new PCP that I am pretty jacked up from the belly button down! lol Painful truth though....
I am still feeling cruddy today. Had an incident last night that is leaving me puzzled. I stood up to go to bed and my legs buckled and I hit the floor. I didnt hurt myself, just a lil bruise on my knee. But when I finally hobbled into bed, my legs felt like they were going to shatter again, not the normal flames, but a weird feeling like one small move and they were going to break in a million pieces. Today, I have been hobbling around with out the boot as part of my physical therapy and that feeling is comming back. My feet are on fire but my legs in general feel very heavy and tired. Something is going on with me... Its not good and it is kinda scaring me... Any thoughts on that anyone?

Pain Free Hugs,

Christy

[Lily]

Christy,sorry your feeling so bad.hope you will get the procedures you need to help control you pain better,I know you are suffering with I/C as i told GoJoGo,When i worked with a urologist people with I/C have so much pain with the bladder spasm and everything else.I Don't think i could deal with it and rsd to.I fely so bad for the pts when ther bladder spasms start They would screem it was so painful.I hope you saw the website i posted rsd support.com.It has all the info you need and they are so many supportive people there, that may be going through simular problems and everyone will help you if you need them.There's alot from here that have joined you will see if you go to the link and you can also pm anyone.Denny is there and alot of others from here .Just ck it out and see what you think it's alwsome.I will look for you name if you join and the other here can also.We still post here also but just ck it out i think you will like it.How long is the hospital stay with the stimulator surgery.I go tomorrow for a consult on it and i need to know how long of stay is involved.Hope to her back from you soon. And i will look for you on the link.Love ya Lorie

[dennyfan]

Lorie, for my stimulator surgery there is no hospital stay. Its a same day surgery. Hope that helps.
Love Denny

[G0J0G0]

Hi Christy,
Bummer on the I/C for this is almost as bad as RSD pain from what I understand. Ask your doc about the proper diet and learn what triggers flare-ups and or spasms, controling your diet will go along way in managing your bladder pain, even though the food is rather bland. In your opinion is the bladder pain as intense as RSD, I have heard the two are similar but different. Similar in that they are both a type of nerve pain.
And to the SCS, the leads should be in the same general area as the blocks are administered, and the stimulator will be placed about belt level on the hip or in the groin area. Your doc should help you with placement. They told me where ever is the most comfortable for me is where it would be placed. The procedure is done on an outpatient basis, just be prepared to spend a couple of days relaxing and recuperating they told me I would be very sore. Is the trial of the stimulator itself, the trial unit is actually strapped on I believe. I don't have a clue what might have happened to cause your fall, sometimes you legs can go to sleep but you usually have some numbness or tingling b/4 hand. What has your doc had to say, I would definitely let him know for this could be back trouble or a host of things. Here is hoping tonite is much more restful, God Bless, g0j0g0