Reflex Sympathetic Dystrophy (RSD)

[Dianne]

Christy,

For my SCS Trial I did have to stay in the hospital one night. My pain is in my feet and the leads were placed in the lower back because that is where I felt the stimulation the best. Since they were placed so low I did have a problem with one of them moving just a little bit after a couple of days but they still worked.

Talk to your doctor and make sure he is really clear with you about everything and read everything you can on the different websites.

I was glad that I had to spend the night because it made me have to keep the ice pack on my back the whole 24 hours which I probably would not have done at home but with the hospital bed slightly elevated it made it a little easier to lay on the ice pack, but I was out by 8:00 the next morning.

Good luck, I hope you have as much success as I did.

Dianne

[okiebutterfly]

Hi everyone! I am the "Queen Of Overdoing It!". Havent been able to post for a few days due to taking a carload of teenagers to OK City on Thursday to the "Taste Of Cahos" tour. We left at noon and didnt get home till 3 am on Friday. My legs were down the entire time.... Then went to Bingo with my mother in law to help her keep an eye on "Granny" (my hubbys grandmother) Legs down again... Then today I went to my step sons base ball tournament. Lasted one game and hubby took me home. He could tell by the look on my face that I was to the point of wanting to go to the ER. So I popped a pain pill and came home. I have had my legs up for the last few hours and they still hurt by the pain is tollerable.
I have had plenty of time to realize that I can no longer be the soccor mom that I was. I cant keep up with the kids activities. It kills me to be in the spot. When we got to the game, some of the other soccor moms didnt even acknowledge my presence. That was a slap in the face. These were women that I hung out with all last summer. They want nothing to do with me now... Their loss.... At least that is what I am trying to convince myself.
My whole body has felt swollen for about a week now. I dont know what is up with me. I am having muscle spasms alot and not only are my feet hot and red, so are my hands... And I noticed that for the past few days, when I use a washcloth on my face, the skin on my forehead hurts... Maybe I am going crazy.... I would love to see my specialist soon. I have no way to get there this week.. So I will just try to hang in there and go with the flow.
As for the IC vs. RSD pain... IC mirrors RSD. I do try to control mine through diet. I only drink clear fluids, no tomatoes, onions, mustard... Things that are acidic are a HUGE no no. Tomatoes are my down fall... I used to eat them all the time. But now... No spagetti, salsa, things like that... But when my bladder flares, I guzzle LOTS of cold water.. it helps..
OH! I did register on the other sight for support. Look for ladybug.. =)
Anyways, hope everyone is having a low flare weekend... I should be back on the computer on Monday!

Pain Free Hugs,

Christy

[Lily]

Hi Christy,I hope you are trying to take it easy today.I know it's hard having all those teenagers to take care of.They are at the age they have to stay busy.Don't worry about the soccer moms.They are no better than you are and most of the one's that act snobby or trying to out do are just wanting attention.Christy be careful.you said you were having trouble with your hands,I went back to the Dr. and i now have full body rsd.I'm really scared right now of what's going to happen after the doc said i when eventually be bedbound but i 'm going to live one day at a time.I will not give in and let it take me down.It's something i'm going to give to good lord above because i can't do it on my on it will drive me to the end if i don't.Please try to take care of your self and if you are having problems with your hands make them listen to you.They told me they would wacth it and now look.Don't let the Dr. put you off.I'm so glad your husband is helping you with this now.You have to have someone.I hope you feel better soon.Hope to here from you again soon.We all care about you.Love ya,Lorie

[dennyfan]

Christy, I should not be saying this to you because there are times that I am no better but you have to set limits. I want you to take care of yourself. I hope thats what you are doing today. I am glad your husband took you home so you could rest and get your legs up. I am sorry those stupid snotty women were like that with you but I agree with everything Lorie said. We cant have people like that in our lives. We have enough to bring us down without that. I am dennyfan on the site. If you can pm me. I love talking with you. I hope you can get your docs to look at your hands soon. Its important. Talk to you soon.
hugs,
Denny

[okiebutterfly]

Hi Denny and Lori, and EVERYONE.... I have been taking it easy... Sunday, I stayed in my nightgown till 3 then got dressed. Hubby went to the store and bought a bunch of pizza pockets for the kids. Today, i got stuck babysitting for an hour then grocery shopping. But I have spent the rest of this evening with my feet up.
I did call my specialist to see if they could squeeze me in on Friday. I have an appt with him at 1 (thank God!!!) I have started a list of concerns. (Thanks to the short term memory loss, Ihave to write every thing down, lol) My youngest son has an appt with his Orthopedic specialist at 10 in tulsa on Friday so I was really crossing my fingers that they could get me in... I am looking forward to seeing him sooooo much... I am very concerned about the swelling and my hands.
Wanted to ask you Lori about the full body RSD. What were your symptoms? Am I looking like that is what is going on? When I was diganosed it was just in my left foot. Now, I am purple in my entire leg when its down. My "Good foot" turns purple when its down and I am having BAD muscle spasms in it. Had one on Saturday in my big toe and it was kinda cool looking back on it now.. My big toe jerked straight to the side, like it was broke. Cool thing to see. Just didnt want it to happen to me!
I told my husband that we really need to come to a compromise with the house work. I cant keep doing everything, cooking and cleaning.. I get exhausted and flare up quickly everyday cause of it. So Sunday he made the kids deep clean the house. But laundry will always fall on me, I can deal with that..
He has been asking alot of questions about the stimulator. Worried about the restrictions after its implanted, side effects, will I still be on all these meds? I guess he needs to make a list for my appt too! lol
Anyways, I am feeling ok right now. Looking forward to bed! We are supposed to be getting bad storms again tonight, so I am going to shower early and enjoy the sound of the rain... AAHHHHHH

Anyhoo, just wanted to say hi. I wish I could meet you both in person! What a hug that would be!

PAin Free Hugs,

Christy

[G0J0G0]

Hey Christy,
Great to hear from you, and no you aint the soccer mom you used to be, in my estimation I would say better than before. You see I live with a great example of what you have described and you are right your friends don't know what they have lost. My wife has had IC for more than 10 years and we have lived with the same reactions you described. It is amazing how heartless people are to someone else's pain. My sis-n-law only recently started to realize how much suffering her sister (my wife) lives with.
I asked you to try to rate the two pains because my wife continuously pushes her pain aside to care for me when I am convinced she is in as much pain as I am, she is also a bit hard-headed lol. I will look for you on RSDsupport, Lorie is listed there as lily. You might drop her a line she got some difficult news from her doc at the last visit. Here is praying that your flare-ups are exstinguished before start up, g0j0g0

[Lily]

Christy,I hope you have rested some today.I'm glad you have let everyone help you with your work at home.They are old enough and as much as you do for them they need to help you out.You ask about the rsd going full body,I help and pray you get to your dr and tell him your problems.I'll tell you the truth.I haven't accepted this problem to well but i will not let it get me down.You ask how did it start well,i guess all the falls i had made it spread like wild fire.but if you think it is spreading tell your doctor.It can spread in different ways and affect different places.One thing is the discoloration and the severe burning, deep down bone pain is a sign.I hope you can get the stimulator everyone sid it's the best thing they have ever done.I talked to a lady that had been in a wheelchair for two yrs and now she can walk again since she got the stimulator,so i hope you look into it.I'm at a stand still right now put i plan to get it as soon as i can.Hope you feel better soon and stay in touch.Love ya,Lorie

[dennyfan]

Christy, I am sorry it took me so long to respond. It hasnt been a good week. I am glad you finally stopped for a rest. I hope you are feeling better. I have been thinking of you. Have you heard anymore about a SCS. I am having my trial on the 21st. I am scared but I will do it. I am kind of scared it wont work but I am hoping like crazy it does because it could give me so much of my life back. I will kepp you updated on it. I hope you are getting the help you need. I miss all the help my son used to give me because my husband doesnt help much. He has alot on his plate already and comes home exhausted from work. He has a sleeping disorder that can never get better and there is no help for it. He doesnt ever go into REM sleep. I am not sure how he functions sometimes. Its a messed up house here. I am thinking of you.
love you bunches,
Denny

[okiebutterfly]

Hi everyone! My hands are bright red and swollen right now, so I know that I need to make this quick. I thankfully have an appt with my specialist tomarow at 1. I have written a list of complaints and concerns. Its a long one this time. As I am sitting here, my entire body feels swollen. Everything hurts. Its meds time. I have been trying to take it easy but we have had torential rains here in OK and my den has flooded. The den is where I live. Has a half bath and no stairs! I used the shop vac last night to try to soak up the water and my youngest bio son came to my aid and said get in your chair and get your feet up! lol he waited on me hand and foot last night. I kept telling him thank you and that I really appreciated his help. I fell asleep in the reclyner last night. Woke up to water all around me and hubby upstairs on the computer. Was not to pleased about that.
Anyways, I am hanging in there. Taking it one hour at a time it seems.
Oh, pain levels with RSD and IC... I would rate a really bad flare of IC as a 6 or 7. And trying to use the bathroom when your flaring with IC as an 8. Its horrible. Made me cry several times. But I have noticed with the new meds and diet change, it stays at 3 to a 5....

Pain free hugs,

Christy

[G0J0G0]

Good evening,
I am sorry to hear that the flare^ is in full force, for I can relate. We went to the coast last w/end and I have been in the bed since. I did venture out to Sam's this afternoon after P/T, and am paying the price... It is amazing this pain can be so intense and knowing this here I will pray that you realize relief and soon. Enjoy your son's helping while you can, for in not too long they will be all grown up and won't be around to offer the helping hand, mine is 20 and is living on the other side of town. Thank you for taking the time and making the effort to let us know how things are going for you and yours, g0j0g0.