[roxyhart66]

Hi newbie here.I am 43 and have had crps since 2006, What started as a twisted ankle has no spread to both legs both arms and back where my scs is implanted. If I knew then what I know now I would not have gotten the scs. I would have it removed but the crps is already there. I am afraid I wont have any relief if I get it removed. I have been n so much pain I haven't been out of bed much. If I try to get up and do things as soon as im done the pain is worse. My left hand is so bad im having another nerve block done on Thur. My left hand is what supports my body using a cane for support and balance. I know im rambling. I have no motivation to get out of bed. Hubby is here and does everything for me, thank god. Im trying and trying to get connected with other people. Thanks for listening. Julie

[dreambeliever128]

Sorry to hear that you are having it so rough.

My husband had to do for me when he was living. He did my grocery shopping and cooked for us and took me everywhere. I do understand what you are going through.

I hope the block helps you. They do seem to help a lot of people.

It takes awhile to get better from RSD. I hope that starts happening soon for you.

Ada

[roxyhart66]

I have had the blocks before, I think it slowed the initial progression, so im trying again. I am a little nervous about the block anyway. Thank you for your support and kind words. Julie/ roxyhart66

[ali12]

Hello Julie and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm SO sorry to hear that you are in so much pain - I really hope you get some pain-relief and answers real soon!! I certainly understand what it is like not feeling like getting out of bed - I feel like that a lot and have to try and force myself to do something, even though it is really hard.

I also suffer from RSD. I have it in my left leg and right arm and possibly my left arm also. I get it when I was 12 years old after an ankle sprain and I am now 14.

I really hope that the nerve block on Thursday helps you. I have only had one nerve block and I developed complications from it as my Pain Management Doctor injected directly into my RSD leg which you should never do unless you absolutely have to. My Doctor didn't know that at the time and it was only after the complications started that my mum found an article on the internet stating that you should never inject directly into an RSD limb and by that time it was too late.

Do you have Physical Therapy?? It is extremely important that you keep moving as much as possible, even though it is realy painful. PT can help lots of people with RSD but it is really important that you see a PT that specialises in RSD and other pain conditions - these are usually attatched to a Pain Management Team.

Epsom Salt Baths can really help lots of people and ease some of the pain and discomfort also so that might be something to look into if you haven't tried them already. They didn't work for me but I have heard from others on this forum that really recommend them.

If you need anything, please don't hesitate to ask - I am more than happy to help you in anyway I possibly can!!! Please don't ever be afraid to ask any questions you may have - we will all try and help you if we can!

Take care of yourself and Welcome to NT again!!

Alison

[roxyhart66]

Hi Allison thank you so much. It is nice to hear such encouraging words from such a young person. You seem wise beyond your years. I guess thats what pain can do. I am not doing pt at this time. Walking is the most that I really do, Working on a little more everyday. Thank you so much. Julie

[lostmary]

Julie,
You sound a lot like me. Mine also spread thinks to the scs. THe second one only made it worse. I'm now thinking of having the pain pump. If the scs isn't working for you, and you're not happy with it, you can always have it taken out. In many ways, even tho it caused the rsd to spread, I really feel so much better and freer without it. I don't know if that make any sense. I've heard that the pain pump allows you to be so much more active then the scs. I just don't know about another surgery. I've got horses, dogs, cats, so they are the reasons that I get out of bed. If it weren't for them I wouldn't have to, so I know how you feel. Just remember, we are here for you.

mary

[MominPainRSD]

Originally Posted by roxyhart66

I have had the blocks before, I think it slowed the initial progression, so im trying again. I am a little nervous about the block anyway. Thank you for your support and kind words. Julie/ roxyhart66

Hi Julie,
I am so sorry to hear how much you have struggled with your RSD progression. I encourage you to go to your block rested and relaxed. I think they help a lot to slow the progression (in retrospect). I had about 7 lumbar sympathetic nerve blocks in the course of about 6 weeks and after I quit having them, my RSD has spread to the bottoms of both feet up both legs and to my hands (in 3 months since my RSD began). I am hoping for another series of injections soon, since I am not willing to have the SCS due to so many bad things I've heard regarding outcomes of those who have had theirs.

It is important that you try to be as relaxed as possible. Make sure they numb you for your IV (have them us a pediatric IV) and sedate you for the procedure to avoid as much pain as possible (anything that might hyperstimulate your already stimulated sympathetic nervous system).

I am so sorry that you are going through this, but am glad you have found this forum. We all consider ourselves family here and each have our own story to tell and our own perspective with this insideous disease. Best wishes to you. Please let us know how your block goes on Thursday!!!

[angelrsd]

hi all
julie iam so sorry that your pain is so bad gentle hugs to you hun you guys were talkin about the pump i have had it for 5 yrs now and it has helped me alot dont get me wrong it is a big surgery but it has helped me out tons. i have fentanyl in it not morphine ask any questions you want i will answer them if you like

carrie

[DianaA]

Hi Julie and welcome to the forum. I had three series of SGB, 10 in each series. Now, that has been a while since I was first diagnosed in 1989. But I clearly remember getting relief from them. I hope you too find some relief. Now, my treatment is HBOT. Welcome, and I hope you have great results and get some much needed relief. Keep us posted. Di