In comparison to the many people I have met through our organization, RSD/CRPS Doesn’t Own Me, I feel very much like a baby when it comes to how long I have had RSD/CPRS. It is just barely my 2nd year anniversary and I sometimes wake and wonder how I made it thus far.
We make it little by little, day by day, moment by moment. We sometimes can’t grasp how we get through but we should know that it is worth it.
So many of us who have RSD/CRPS know how hard the struggle is. So as a testament to each and every one of you I wanted to compile this article.
Why do we fight?
“Why do we fight?” you may ask, and to that I answer, because although we strive to live our lives amidst the down pour of our pain, we are still amazing and beautiful human beings. We go through every day and we may have a bad or good pain day but we are still here. That is a real sign of courage and strength. We are put here to help each other through, and this is what I hope to accomplish through this article.
Leiana Jones from the UK writes:
“I have seen so many posts on my Facebook updates but really haven’t had a chance to get in touch until now, as stories go I think I am pretty rare in the world of RSD. I had five years of battling RSD, getting it diagnosed and finding a treatment that worked.
I tried everything from TENS to drug therapy, pain management courses, Gwenethadine Blocks (which worked for two days longer each time I had one), Bylateral Lumbar Sympathectomy ( winning treatment) just to name a few.
My story is somewhat remarkable as regardless of all of the research my family and I had done on treatment’s the reason I am still alive now came from my dinner lady at primary school. We all live in a small village and most people were aware of my deterioration. This wonderful lady mentioned me to her next door neighbors daughter who was visiting from Scotland; and who just happened to work for a pioneering pain management unit for children and within days I was an inpatient for three weeks for trial treatments. It wasn’t without its trials and tribulations but I was walking for the first time in four years and pain free!!!!
The diagnosis was the toughest most traumatizing part of the whole process, being accused of being a school refuser, attention seeker, abused by my parents, CRAZY! Dreadful!! Living on a small island is also not great as there are very limited resources. I have over the last three years become less involved with RSD awareness as I have focused on my education and career but am very interested in becoming more involved in the work you guys seem to be doing.”
As RSD Angels we are consistently bombarded by nay-sayers or negativity from a lot of different sources. We are told that we should give up just because Doctors don’t have the wherewithal to help our pain be diminished.
I was always told that too much education on one subject can end up hurting you in the long run. I am here to say that this isn’t the case with RSD/CRPS. Education and Awareness is the key to knowing what to do and in some cases not to do when diagnosed with RSD/CRPS. It is very hard to wrap your head fully around something as life changing as this disease is but the more we try sometimes the easier it is to come to grips with it. I cannot tell you how many times my pain management doctor or his GP have told me something incorrect about RSD/CRPS. They don’t live with this pain like we do, sometimes it will be the only thing we can focus on, and we are usually the first to notice if something is wrong.
This doesn’t give us license to be upset and go off the handle whenever someone gets it wrong. They are not us, they can only go on the information they have at the moment.
Furthermore never believe that your treatment options’ are few, because there are more treatments becoming available everyday. Just to show you an example of the amount of treatment there are our RCDOM Staff Member Kylee Black has been so kind as to share what she has tried and what has or has not worked for her.
“High dose ketamine – 800mg to 1200mg over 4 hour stints in theater in hospital – helped a lot
Low dose ketamine – 32mg an hour 24/7 for 14 days in hospital… No side effects, limited benefits.
Lyrica – horrid side effects…
TENS – would bed bound me for days after each use.
Injections – my pain turned to brain maintained to quickly for blocks to be able to work
Narcotics – am on them now – they help to a degree – allow me more function and less pain.
Neuropathy meds – help heaps
Warmth – heating pads – electric blankets etc… Help heaps – saving grace!
Ketamine coma – haven’t tried – know patients who have been though – I think too many risks…
PT – helps but in some ways regressed me
Mirror therapy – helped heaps
Cognitive therapy – helped a lot
Pain management – helped
Relaxation techniques – I already had them – helped to revise…
Brain retraining and awareness — helped quite some!”
These are just a fraction of the treatments that are sometimes used for RSD/CRPS. I know it is very hard to fight insurance or workman’s comp. but if we don’t try to get some form of treatment we may never know if it could have helped. There will always be that nagging question and that “What if?” floating around in our heads.
I challenge all RSD Angels to not only stay strong but to try to educate and spread awareness as much as possible. If we stay quiet and do not share our struggles and stories then no one will begin to help us find a cure. We aren’t saying you should go out and make everyone in the world pity you or feel sorry for you lot in life. Instead allow them to have a greater understanding that they shouldn’t take life and their health for granted. One day it could be them that are the disabled ones and if they learn now it may help them to go down the correct path of treatment and ultimately remission.
We also have to remember that we are not the only ones effected by RSD/CRPS it is sometimes as hard for our families and friends to watch us struggle as it actually is having it yourself. People sometimes think that isn’t true but of mothers, fathers, siblings, children, spouses, and/or extended family do care for you and they wish as much as we do that it would go away. They may not understand fully but that only creates a form of frustration, that they cannot take away or ease our pain.
The following is a story from an RSD Angel’s Boyfriend, Joseph Whightsel, about how his girlfriend’s RSD effects their relationship.
“I have been dating a girl with RSD for several months now and I just wanted to share my story with the rest of the RSD angels and supporters here. When I first meet her, I thought she was like any other girl, except for the fact the she was the most beautiful and stunning girl I have ever seen. I meet her over the internet, where we found out we had bumped into each other before. It was not until our date she told me she had a incurable disease called RSD/CRPS.
At first I thought “Hey, no big deal it’s cool! I can handle it!” It’s wasn’t until I heard about the excruciating pain she lives through daily that I gave it another thought. She explained it to me as someone draining the blood from her veins filling them with gasoline and igniting it then wrapping barbed wire around her leg. She told me that it’s likely that in several years she won’t be able to walk and have to get around in a wheelchair.
It’s difficult to hear about that kind of thing and say, “I’m still committed to you babe!” It’s hard, the simple things you take for granted in a relationship become very difficult to perform. Things such as being able to put your hand in her lap, giving her a foot rub, rubbing her leg all became very painful for her. She finds it hard to walk long distances and travel in a car for more than an hour takes much of her energy. I found that she is a strong a capable women with lots of strength.
I pray to God for her every day that the pain is mild and that she has a good day. I help her when I can or when she lets me, she can be stubborn and refuse help at times and pays for that later but I love her with a passion. I will be there for her whenever she needs me and I’ll offer her as much help as she needs. For anyone out there, RSD does not have to be the end of everything. You can find someone out there who understands what it takes to love you. You can live as normal as a life as you can when someone who loves you stands beside you. I love my RSD angel and I will never let her RSD get her down!”
This really shows the kind of fear that accompanies taking care or loving someone who has any disease let alone RSD/CRPS. We never think it would happen to someone we know but it takes strength in character to stand by and be supportive. Do not give up when the going gets tough. You are priceless and also not just anyone can say they walk through fire daily and are still alive to tell the tale. Be proud of yourself!
I pray that we continue fighting and spreading awareness together. Together we can go so much farther than going it alone. You are never alone amongst friends.
Founder of RSD/CRPS Doesn’t Own Me