We Are All in This Together
Written by Devery Mills for the RSDSA blog.
How and when did you develop CRPS/RSD? What has life been like since your diagnosis?
I have been a nurse for many years and worked in the ER and Cardiac.
In 2007, I was seen in the ER with a nasty stomach bug. Traditional medications were not working so I was given a different nausea drug two times. It was not given correctly according to pharmaceutical instructions and it caused significant damage to my right arm. I suffered thrombophlebitis and infection. I was in the hospital for a week on IV antibiotics and consequently the beginning of my journey with RSD.
My husband and I lived on a 43 ft boat for 12 years and I worked all over the state of Florida as a travel nurse. Little did I know my life was going to change overnight.
The first three months after the injury I was in a deep depression. I could not work, I was in extreme pain and my lifestyle was about to change also. I cried every day. I mourned the loss of my career and lifestyle. I truly did not care if I lived or died. I did not eat, take a shower, cook, or do anything that I enjoyed. On top of this, trying to get treatment was next to impossible because I lived in a very small place where anything outside of a cold or stitches needed to go to a “bigger hospital system.”
I was diagnosed using an EMG, but what treatment I did get included the typical Amitryptiline and neuro/psych medications. I found out that I am hypersensitive to all of these medications as they had severe side effects. I lost who I was. I stumbled around most of the time not even being able to tell you my name. I even did my share of sleep-walking and living on a boat. I do not have to tell you how dangerous this was. I nearly suffered a divorce as my husband had no idea how to help me and my behavior became more bizarre by the day.
Finally, after three months I had a moment of clarity when I realized I did not have to live this way. I went off the medications and my head began to clear enough for me to make some decisions.
In 2009 my husband moved us to our home state where we bought a house and began a new life. I found a primary care physician who listened to me, researched how to care for me and began the process of finding adequate treatment. This doctor saved my life.
I have since learned that no matter how bad I felt or how much pain I was in, I had a choice. I could choose to lay in my bed or I could get out of my bed and face the day. I opened a homeless organization and spent 10 years helping the less fortunate.
Today, my husband and I have moved back to Florida where we live in a little park and I have found an EXCELLENT pain management group and primary doctor. I live with the mindset that there is always someone worse than me and that nothing I do is going to make my condition worse. I use diversional activities to keep my mind busy. I also meditate and have taken my diet captive. I also incorporate many natural products that help me every day.
What is one thing you wish those without CRPS/RSD could understand.
CRPS/RSD is one of the most painful and challenging diseases known to the medical profession. The constant burning/cold feeling with the deep bone aching pain is like none other.
Over the course of time, sufferers become experts in putting on “the game face.”
The world sees the game face and assumes that there is nothing wrong or that we are even “faking it.” The world who does not live in CRPS pain is absolutely incapable of comprehending its torment. I wish these people would stop passing judgment. The stigma attached to chronic pain sufferers is beyond belief.
What advice would you give to newly diagnosed Warriors?
I HEAR YOU and I KNOW your pain. Slow down and take charge of your healthcare. Do not be bullied or settle for less than…
RESEARCH EVERYTHING because knowledge is power. Find a GOOD pain management group and be honest with them about your condition and your needs.
Do not be afraid to try new things. There are amazing natural products and therapies. Nothing works for everyone, but you just might find things that work for you.
Do not be afraid to stop taking a medicine that does not agree with you. Listen to your body and do what is best for YOU.
Hold your head up and do not be ashamed of your condition. You are one of the strongest people you know. Keep fighting. Never give up and perhaps you will be one whose condition goes into remission.
What advice would you give to Warriors who have had CRPS/RSD for many years.
As a person who is a 12 year veteran, I would encourage you to never give up. You are valuable to many and you are loved. Medicine is changing every day and perhaps there is a cure on the horizon. Change your routines and do new things. Do not get too comfortable in the box. Rest when you must and listen to your body.I send you blessings for healing and comfort.
What activities or treatments have helped you find temporary or long term relief?
My medications include:
Lasix, Gabipentin, A compound cream, Robaxin and low dose Oxycodone.
CBD and Ashwaganda are a couple natural products that I find effective.
I have not benefited from traditional therapies and stimulators were not an option in my early days.
I am currently investigating Ketamine and Scrambler therapies as a possibility.
My pain ranges from 4-10 depending on whether I am in a flare.My flares have become less over time and my pain has become mostly stable at 4-5 average. My pain is mostly cold and I am fortunate not to have the “fire” aspect of the disease, but the cold gets pretty rough.
Anything else you would like to add?
I would like to encourage all of you who are struggling daily with the knowledge that we are all in this together. Through our support of each other through groups and individual friendships we nurture and heal each other. We share our stories and we vent our frustrations and nobody will understand like we do. We are Warriors!! Many blessings.
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