Newly diagnosed with RSD
 

Hello All! My name is Amy. My diagnosis of RSD was confirmed approximately 2 weeks ago by the physiologist that I was referred to from podiatry. We (the doctor's and I) believe it was brought on from a navicular fracture that happened September 21, 2010, and my bone is still broken on top of having RSD. This is a very scary diagnosis for me as I am only 27 and have 2 young children. I am feeling very overwhelmed and frustrated. It's already been five months that I have been in a space boot and hard casted and back to a space boot again. It's been a 24/7 battle to function because of the debilitating pain I am constantly in. Questions to the new RSD people... is anyone else having a hard time coping with the daily struggles of finding a way to function? And a question to the RSD vet's... is there ever a time that you have accepted this diagnosis and been able to complete daily tasks more easily? I have already been warned by two different doctor's and a physical therapist that I am going to have a long road ahead of me. I am happy that I found an online community that will be able to relate to me and vice versa. Thank you for any input!

Dear Hurtsbad,
 

Welcome to our family hurts bad.... I am sorry for your DX with RSD and Your pain. I as well as many here, our family are RSD sufferers too. Many of us have had this relentless monkey on our backs for years. We have grown to accept what we can not change but never stop learning and staying hopeful for help and maybe a cure. RSD is so incredibly painful and yes, it can spread. In the early stages, as yours, possibility of better pain coping tools are more achievable and even remission. Please, find a Dr. , paIn specialist or neurologist knowledgable in RSD and move forward, quickly with blocks, medicine, Pt, Most importantly, stay positive as possible. Turn to us for help and lean on us. Please, do not use ice only heat. Our lives with RSD are now different, we no longer are capable of doing things as we were able before our illness took hold but remember what you feel in your heart does not change, stay with us for support.

Take care,

kathy:grouphug:

Hi hurtsbad,

I am sorry to hear about your pain. RSD is not a fun thing at any age, but having two young children would make things harder.

I was in an auto accident in 2007, and fractured three toes (it was called a Lis Franc Fracture because of the bones involved and the tendons), chipped my ankle and knocked my knee cap out of whack (torn meniscus too).

I wore that horrible "boot" for many, many months. I swear I thought if they didn't do something soon to get me out of it, that I would throw my back out or make me walk funny. Ha, I didn't have to worry about the boot long though - the RSD took care of my walk.

I don't want to scare you, but you are facing a tough time. Do research! Ask questions, especially if they mention any surgeries! Surgeries make RSD worse! It started in my leg and foot after the accident and surgeries. Then I had a spinal cord stimulator implanted to "help" my foot in late 2010 - now it's in my back, arms, neck, shoulders and fingers. The stim is hard to keep the sensations in the right place and I am having really bad problems with chest wall stims.

I turn 42 in October, and I want to throw the towel in. You are young and strong and found this site early! Read everything you can on RSD - ask questions if you don't understand things. Definitely stay away from the ice (I lived with my ice machine - the one that was recently recalled - for many many months after my multiple knee and foot surgeries). Be careful with the heat too - right now, I am having trouble with my finger tips and hot/cold things.

Big internet bear hugs to you, you have support and can find the answers here! #1 thing - don't be some doctor's guinea pig - ask questions and avoid the knife and ice:).

Thank you for the warm welcome! I am so glad that I was able to find a place where I can "chat" with people who are experiencing what I am.
I am sorry to hear that you have been battling RSD for so long. I have been warned a handful of times that I have a very long road ahead with many ups and downs, unfortunately most likely more downs than ups but I still feel very unprepared for what lies ahead.

Given the welcome I've already recieved I think I might have some great people with experience to lean on. Thank you for the pointers too!
The physiologist who confirmed my RSD also handles the pain management. He's already offered to assist me in any third opinions I might want and also encouraged my own research... so my notepad is quickly filling up with questions for my next appointment!
Thank you again for the welcome!

Kathy,
Thank you for the welcome! The doctor that confirmed the RSD (physiologist) is also handling my pain management. I hope that it isn't a very long time before we can get this pain under some control. So far I am taking Vicoden and Lyrica for 2 weeks and have had barely any relief. I went for my PT eval this morning and will be starting therapy this week. It seems like so far I am on track. Whether or not any of this is going to work might be another story. I did see that you mention to use heat not ice, my doctor also recommended that for PT as well. I am very skeptical of this because the warm water when I shower feels like boiling water on my leg where it just feels warm on the rest of my body. I also told the physical therapist my concerns of this because I am scared I won't be able to tolerate it. I have used ice before, of course with no relief, but it was like my leg didn't recognize that it was cold. The doctor did warn me that it can "jump" or spread. I am wondering if you might know, does it take another injury to another part of the body for this to happen or will it "jump" just because it feels like it? Thank you again for welcoming me to the family... Finding this community seems to be the first positive thing that has happened to me in a very long time.

Amy

Welcome to the family!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. Check into the following forum there are many fello member to assist you.

http://neurotalk.psychcentral.com/forum21.html

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug: