Hello, my name is Crystal and I'm a 23 year old suffering from RSD. It began two years ago when I fell and broke my ankle. A few months following the break I had 3 surgeries and we thought that things would start to get better from there, but as it turned out that was only the beginning. After months of sleepless nights due to intense pain I was referred to a physiatrist in the same clinic as my orthos. As soon as I slid my cam-boot off and he saw my purple foot with it's scaley, shiny skin and felt the sweat coming off of it he instantly knew I had RSD. We immediately began what he called "the cocktail";
-Cymbalta 60mg 2x/day
-Lyrica 100mg 3x/day
-Percocet 10-325 every 4 hours
Along with all the medicine I started a series of lower lumbar sympathetic nerve blocks. I started off with 4 of them, and they calmed down some of the symptoms but there was still unresolved issues. Shortly after the blocks I under went another surgery after being diagnosed with tarsal tunnel syndrome. The nerves in the tarsal tunnel were decompressed and wrapped with a synthetic tissue, but unfortunately this caused my RSD to flare back up with a vengence. I than went through 3 more nerve blocks to try and tame it but it was too far gone at that point. We continued my meds and started looking for other methods to get the pain under control, contrast baths at PT, water walking in PT, deep tissue massages but nothing was working. I had a few more surgeries done before we looked into a Spinal Cord Stimulator more seriously.
And that's where I'm at now. I had the SCS implated 4 days ago, and now I'm trying to figure out is a normal life in the cards for me? I could go by what the doctors tell me but they haven't had the implant for suffered from chronic pain every day of their life. What sort of things have helped others get back to normal? I have adjusted my diet, take my meds, ice to bring down any swelling. I used to run 8 miles daily, and I'd love to run again..I'd also love to have kids one day but thinking about everything I've gone through is all that possible again?
Sorry for the long post, but I figured I'd share my story and I'd love to hear from others!
I am so new to CRPS/RSD and we are not even really sure that it is what I have. I have not nearly gone through what you have, but whatever is going on with me has totally changed my life as well.
One thing I notice though, even being very new to this is that you say you are using ice? and contrast baths? From EVERYTHING I have read and researched and my physical therapist who is very familiar with RSD has told me, people with this condition should NEVER EVER use ice. Ice impedes blood flow to the area and can actually make it worse. Heat is a much better option as heat actually helps the blood to flow. Part of RSD is reduced blood flow already. I know you are asking how to live a more normal life, but if you could possibly be doing something that could make it worse then stopping could possibly help the situation.
Like I said, I am new to this. You do not have to take my advice, just research for yourself and be sure.
Definetly no ice no hot and cold water contrast therapy. I was pit on that 3 times a day for 7 weeks. Result white spots and lumps in practically every blood vessel and severely impeded blood flow.
No more operations unless to save your life they can and do cause spreads. Even the slightest trauma can cause a spread, my first was caused by the use of a sensitivity pin 4ins outside what was thoguht to be the affected area. It spread from just below the wrist right upto the elbow.
ICE???? no way jose... one of the first things we learn as RSD patients is no icee it is a bad thing... from personal experience in regards to normal life.. well
whats normal... Im still searching.. unfortunately we need to change our understanding of normal to fit our present life of pain.. each day has its own issues some are really bad some are little better. we need to go with the flow and treat each minute individually as RSD can alter reality by the minute..We are all on the hunt for normal..(as it pertains to life before RSD) right now normal is doing what we can when we can and accepting this as our new normal.. and when it gets too rough come here to complain release some steam or find a friendly ear.. I send you my very best and soft hugs... god speed