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04/11/2012 10:08 AM

Hello!

lygardner
 
Posts: 4
New Member

I am new to this site and just wanted to introduce myself. My name is Lynn and I have been diagnosed with RSD in both of my feet and lower legs. I am hoping to make a connection with others who have RSD for support and advice. I also would like to add my support to others who are dealing with this condition. I was diagnosed about 3 years ago, but have had intense and burning pain in both of my feet and legs for going on 5 years. I, like many of you I'm sure, saw many doctors who told me I had tendonitis and placed me in PT. After getting fired by one doctor I was ready to give up hope when a friend of mine mentioned a sports medicine doctor she had seen and really liked. This doctor finally diagnosed me and we began trying many things for the pain and poor blood circulation and finally ended up with amitryptaline which for a while would help with the pain, but not control flare ups. I am meeting with my doctor tomorrow to discuss the possibilit of a peripheral nerve stimulator. I hope that I can add something to your group.
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04/11/2012 10:36 AM
mike1024
mike1024  
Posts: 924
VIP Member

Hello and Welcome to the group,you will meet alot a good people here that are very supportive.I also have RSD in both legs and feet I have a Spinal Cord Stimulator to help control the pain.I also have RSD in my right hand and arm,shoulders,and back.Please feel free to ask questions or if you just want to vent that is OK also.

Mike


04/11/2012 11:45 AM
lygardner
 
Posts: 4
New Member

Hello and thank you! I am glad to be part of the group and talk to people who are going through something similiar. How long have you had RSD? Do you feel that the spinal chord stimulator has helped at all? I have read that it has a 60-70% success rate in treating RSD pain. What other things do you do or take for pain relief? Right now I am only on the Amitriptyline.

04/11/2012 03:06 PM
mike1024
mike1024  
Posts: 924
VIP Member

Hello again I have RSD for 18 years.The Spinal Cord Stimulator has taken my pain levels from over 10 down to a 2.I do not take any meds just use the stimulator some people do have to take some meds but I was one of the lucky ones.

Mike


04/11/2012 06:26 PM
cindy61
cindy61  
Posts: 540
Member

Hi lygardner welcome to this site. I have had RSD for over 10 years and it has spread from my neck,shoulder and left arm to both shoulders, arms, back, both hips, most of my right leg and stomach. I have had the SCS put in twice but for me neither worked and actually made the RSD spread. I have gone through at least 15 nerve blocks and tried almost every medicine and have gone through PT. I am now on fentanyl patches, dilaudid and diazapam for the spasms.

There are alot of great people here and many stories. Sorry that you have to join a group that is about a disease with a lot of pain.

Cindy


04/12/2012 10:38 AM
RSDSissy
RSDSissy  
Posts: 29
Member

Hi Lynn Welcome to the group although I wish it was under different circumstances.

I too am somewhat new to the group and have had RSD for 3 years in left leg and foot, developed tremors and dystonia and fear it is starting to spread in my right leg. I have a wonderful doctor so they are out there and hopefully you will be able to find a good neurologist and pain management doctor. My PM has setup synthetic nerve blocks they work for about 2 days and sometimes a couple of weeks. My PM is trying to get approval for the SCS trail he feels it just may be what lowers my pain threshold down from 10+ to hopefully a 5, 6 or 7.

My Medications:

DIVALPROEX, GABAPENTIN, HYDROCODONE, TRAMADOL, OXYCODONE, SERTRALINE.

I have taken PT and Aqua Therapy but have reached my Plato and no longer able to do these.

I will say this I use to cry so much that I was making RSD worst but I just couldn't accept the fact that I would no longer be able to work, walk, and be independent and have all the fun I use to. I was told by others with RSD that it was OK to cry that you have to grieve your old life and the things you are no longer able to do in order to accept your new life and the way you can do some of those things except in a different way.

It is OK to allow your family and friends to support you and help you in any way they can. I feel it is important to educate yourself and family, friends so that they better understand what and how RSD is.

Best of luck to you and feel free to join my friends list, I feel we may have lots in common with this awful RSD.

Sissy


04/12/2012 11:32 AM
lygardner
 
Posts: 4
New Member

Hello and thank you! It is nice to be able to talk with people who understand what it is like to live with chrnoic pain. One of the toughest parts is the isolation and the depression - when I think back on who I was 5 years ago it makes me so sad to see where I am today.

I am hope that the trial goes well and that scs will help you with your pain. I have done a lot of research and found good things about it. If you would like, I would be happy to send you some links to the sights I have researched - just let me know!

I had a consultation with my doctor today and he is switching my meds from Amitriptyline to Nortriptyline and has added Tramadol for the pain. My left foot and leg are doing much better than the right and I am so glad he is giving me something else for the pain. He thinks that I "tweaked" the nerve somehow and that has lead to my breakout pain. I, like you, have found a great doctor. Today I found out some startling news - I have been religously icing my feet for 45 minutes after I exercise - and my dr. told me today that is BAD for people with nerve pain to use ice - I am pretty upset about this b/c I have been icing for years! I wish he would have told me that sooner. I am hopeful that eliminating the icing and switching meds will help me.

I had a great consultation with him today and left feeling more positive, he always remembers who I am and answers all of my questions and that is nice b/c all the other doctors I went to said I had tendonitis and told me to rest. Well when I finally went to Dr. Fields he said wait a minute, tendonitis lasts 3-4 months generally and you have had this for over 2 years - there is something more going on here and then when he saw my feet and legs turning purple he knew almost right away what was causing it. What else I like about him is that he also has nerve damage in his neck so he has been through a lot of this stuff and taken a lot of these medicines. He told me today there have been studies that show warmth is good for nerve pain and I am now wearing a compression cuff on my right leg and that is helping to relieve some of the pain.

I am hopeful to start up conversations with others b/c maybe I will pass on something that will help someone else and I am hoping that by communiating with you all I may learn some stuff about treatment and pain control.

I will let you know how the new meds work out - I am keeping my fingers, toes and eyes crossed!

Please keep me updated on how your trial goes.

Lynn


04/12/2012 11:37 AM
lygardner
 
Posts: 4
New Member

Sissy, how do I join your friends list?

04/12/2012 06:04 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi Lynn!

I'm a couple of days behind reading posts or would have said hi sooner. My RSD is also in both feet and lower legs and one inner thigh, but it's not bad there at all. I've had it since toe surgery in late 2006. It's wonderful that you have a good doctor! They can be very hard to find, especially if you live outside a city, and mine is only OK. In fact, I saw him yesterday and realized that for the last two years he doesn't ever even ask much about the pain or how I'm doing and doesn't talk about treatments. He just has his assistant count my pills, as I have to bring them all in each appt., and then he writes out new prescriptions. It's not good, so I'm really glad for you to have a good one.

It seems like about half the people who get spinal cord stimulators, we just say SCS's, really like them. For about half, they don't like them or have bad experiences. In my opinion, I would try it but I don't have one. I got to 3-4 days before I was to have my trial and the doctor had to cancel and postpone. The next time was suppose to be two weeks later and I backed out due to finances. I just couldn't afford it. But, my pain has been so severe lately I sure wish that I could. If you do get a trial, let us know. I'll be hoping for a really good response for you.

I'm on quite a bit more medication than you are. It's gone up over the years as the pain has not responded anymore to whatever I was on. It sort of concerns me, but it also helps, so I just keep going. It's very hard to go through all of these life changes, I know. When I got injured I was in really good shape and had lots of positive things happening in my life. That is upside down now. I can tell you that this group has helped alot. For both information and support they have been great and I'm so grateful that they are here. So, I hope you will find the same thing I have found here.

They do say that ice is bad! They say that it can cause RSD to spread. I did use ice constantly for about 2 years, also. It was the only thing that helped other than meds. I actually carried ice bags with me in the car and everything. But, I stopped doing that two years ago when I learned it was bad. It didn't seem to cause a spread in me at all, but then I had another foot surgery and that did cause a spread. I don't think I saw how you got RSD... did you say?

I'm glad you came to the group and wish you the best. This is a good group of people who have been through everything, so give the group a try for a while. Nice to meet you!

gail


04/14/2012 12:35 AM
cindy61
cindy61  
Posts: 540
Member

Lynn, just take the mouse and put it on her icon and double tap. That will bring up her info and there is an area where you can ask to be her friend and then you can have private chats.

Hope this helps, Cindy

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