Reflex Sympathetic Dystrophy (RSD)

[lostmary]

Again, no need to apologize. We have all been there, or at least are going thru it. I've had rsd for about 5 years, and it was only dx a couple of years ago. It started in my left foot, went to the right foot, moved up the right leg and now is in my lower back/butt. I've had an scs implanted about 8 mo ago. It has been wonderful. I don't think I could live without it. I am having the battery moved next week, as it has moved a little. My dr. thinks that the rsd has spread to my butt and lower back, and I really have to agree with him.

It is hard to explain to others how bad it hurts. My hubby tries to understand, but it's nothing that he can relate to. I've tried not to let it dominate my life, (but it does). I have horses and they live on the property with us. At least with the scs I can still be around them. For me, it is quality of life. I really hope your pm is kind and understanding. He will try several combinations for meds to see what works. If the first tries don't work, he will try other things. If you trust him, do as he says. My pm sent me to Georgetown University Hospital in Washing D.C. to see the head of the pain management dept. I love my dr there, and I trust him to do what is best for me. I hope you can have the same relationship with yours.

When you need to vent, cry, rant/rave, we are here for you.

Hugs

[leanne1013]

Thank you thank you thank you. This is the scariest thing I have been through and I think the one part that is scariest is the unknown. what can they do to make me ok I know I will never be 100% but to be able to walk normal again. Thank God I have people around me who love to joke as much as I do and know that laughter is the best medicine. I try to do that when I can. But crying is what I do most of the time and being very confused. the pain just moves and it seems to be going to my wrist. I Know wonderful. It started in my left leg moved to the ankle and the back of my leg is now having muscle spasms and cramps. Now my right leg is starting in the front the way the other started. I call it the invisible pain. My husband is starting to get it once I showed him McGills pain index thanks GOJOGO. And he is starting to get it. Thank god for this forum to vent and help other people when I can. I guess I am the newbie now. Thanks to all. Always be blessed Lostmary

[G0J0G0]

[quote="lostmary"]Again, no need to apologize. It is hard to explain to others how bad it hurts. My hubby tries to understand, but it's nothing that he can relate to. I've tried not to let it dominate my life, (but it does)... I love my dr there, and I trust him to do what is best for me. I hope you can have the same relationship with yours.

When you need to vent, cry, rant/rave, we are here for you.

Hugs[/quote]

Hi Lostmary,
To help your hubby understand, you might look up and download the McGill Pain Index and locate "causalgia", a former name for RSD, and show this to him. It shows that RSD pain is second only to amputation without anesthisa in intensity and levels of discomfort. The majority of persons that read the index are convinced and are much more compassionate and understanding. Also you mentioned that you have a great doc and are very pleased with hiw treatment, one word of advice, hang on to him and don't let go for this is an exception and not the rule. Have a great day and be blessed, gojogo

[G0J0G0]

You can also hit the "site map" tab in the black bar under the logo and scroll down to "resources" and hit the "tool bar" button and this will start the down load process. From it's pretty simple. Be blessed, g0j0g0

[leanne1013]

Thank you for having patience with my old age kicking in, Or meds which ever is first. I will download it tonight and we will catchup. I am going to try to get an appointment with the neurologist today it seems it is moving up my leg. I feel so confused today and I think I should have stayed home from work then I think what would I be doing home. Maybe I would be more comfortable. Are you still working? how is it for you? Because as we all know the people at work understand the least. Or maybe just my work. I will definitely download it tonight and look forward to speaking with you.
Always blessed

[G0J0G0]

Hi there,
You can't be that OLD,lol. I had my share of difficulty figuring it out. Sometimes RSD takes some of the relative mental sharpness from you and even this is hard to live with, you learn to adapt. As you do I have a lot of pain to live with. but with physical therapy and the meds, my pain is managed fairly well.
I have been on disability since dx, the company I work for wouldn't allow me to return to wk. b/c of the amount of meds and my doc agreed that my case was severe enough that I needed not to work. Fortunately I had the presence of mind to call SS and get the info on what to do in filing for disability for I got benefits in two months. It takes some getting used to realizing that "I am disabled", the unfair stigma attached is a bit difficult to manage at times also. It is much like a juggling act in a side show at the carnival, you toss everything up in the air and deal with what is in hand at the time. it gets better with time and you learn to handle things in a fashion that makes life a little less difficult.
Let me know if I can be of any assistance and I will be praying for you. Have a great day and be blessed, gojogo

[leanne1013]

[quote="G0J0G0"]Hi there,
You can't be that OLD,lol. I had my share of difficulty figuring it out. Sometimes RSD takes some of the relative mental sharpness from you and even this is hard to live with, you learn to adapt. As you do I have a lot of pain to live with. but with physical therapy and the meds, my pain is managed fairly well.
I have been on disability since dx, the company I work for wouldn't allow me to return to wk. b/c of the amount of meds and my doc agreed that my case was severe enough that I needed not to work. Fortunately I had the presence of mind to call SS and get the info on what to do in filing for disability for I got benefits in two months. It takes some getting used to realizing that "I am disabled", the unfair stigma attached is a bit difficult to manage at times also. It is much like a juggling act in a side show at the carnival, you toss everything up in the air and deal with what is in hand at the time. it gets better with time and you learn to handle things in a fashion that makes life a little less difficult.
Let me know if I can be of any assistance and I will be praying for you. Have a great day and be blessed, gojogo[/quote]

Your right about the mental sharpness. I am not old at all. but I feel my body is. I have nevewr felt so alone. All I have been doing all day is cry, not any for the pain but for myself and frustration. I left my pain meds at home today. Still getting used to have them on me at all times. What a sucky thing to get used to. For someoneI just met you have been to most supportive person. I couldnt thank you enough I know I dont need to say Thank you But please take this on it is much appreciated.

[leanne1013]

[quote="G0J0G0"]Hi there,
You can't be that OLD,lol. I had my share of difficulty figuring it out. Sometimes RSD takes some of the relative mental sharpness from you and even this is hard to live with, you learn to adapt. As you do I have a lot of pain to live with. but with physical therapy and the meds, my pain is managed fairly well.
I have been on disability since dx, the company I work for wouldn't allow me to return to wk. b/c of the amount of meds and my doc agreed that my case was severe enough that I needed not to work. Fortunately I had the presence of mind to call SS and get the info on what to do in filing for disability for I got benefits in two months. It takes some getting used to realizing that "I am disabled", the unfair stigma attached is a bit difficult to manage at times also. It is much like a juggling act in a side show at the carnival, you toss everything up in the air and deal with what is in hand at the time. it gets better with time and you learn to handle things in a fashion that makes life a little less difficult.
Let me know if I can be of any assistance and I will be praying for you. Have a great day and be blessed, gojogo[/quote]

Your right about the mental sharpness. I am not old at all. but I feel my body is. I have nevewr felt so alone. All I have been doing all day is cry, not any for the pain but for myself and frustration. I left my pain meds at home today. Still getting used to have them on me at all times. What a sucky thing to get used to. For someoneI just met you have been to most supportive person. I couldnt thank you enough I know I dont need to say Thank you But please take this on it is much appreciated.

[G0J0G0]

Hi Leanne,
You are not alone, even though it certainly feels like it. There are multitudes of people that are living the same nightmare and are fighting the same struggles day in and day out. Have you had any luck in downloading the tool bar for you home computer, I know it is a bit of a hassle but you will be able to chat like you IM from msn's home page... Just here on the Neurology Channel's private site. Have you tried to get online at a support site like the one I had mentioned earlier? I know it is helpful to talk to someone when the weight of the world is pressing down on your shoulders and no one seems to understand. I pray that you are able to look this monster in the face and over come these uncertainties. I know it is hard but do-able and if I can be of assistance you can reach me here or through rsdandyou... same name. On this site all of the moderators have RSD and know 1st hand what you are looking at and the fight at hand. How is your husband doing with the diagnosis?
Look me up if I can answer any questions for you are your husband and remember you do not have to face this alone be blessed, gojogo

[leanne1013]

I downloaded the toolbar at work and I can access it from home. So I am now able to chat. I spoke to my neurologist today and let him know it is going on to my arms and my other leg, etc. He told me to up the pain meds and to see him after I speak to the pain management clinic. He told me that rarely it spreads but when it does it could mean I could have an infection and I could be having a spinal tap. Today was the first day I will be working part time leaving everyday at 1:00. My husband has been wonderful and I completely broke down last night to him and he told me it was OK to be vulnerable and let him help I haveme whenever I need. I know I have a long road ahead of me but as long as I have the support behind me I think I will be ok.
Let me know when you will be on the chat and I will sign in.