Tuesday, November 19, 2013

Living with RSD/CRPS- Guest post by Amy Jenkins

***Today's very special post was written by my friend Amy. Amy suffers from a disease called RSD, and it's very likely that someone you know suffers from it too (and possibly doesn't even know it yet).  November is RSD/CRPS awareness month, and I asked Amy to write a guest post.  Amy's story is a sad one, but there is hope in sight.  She won't give up fighting and refuses to let RSD win!  I hope you enjoy this post, and a HUGE thanks to Amy for writing it!***

First of all, I would like to take a minute to thank Jamie, for allowing me make this post in her group.  Thank You so much. 

Living with RSD/CRPS ( Reflex Sympathetic Dystrophy aka Complex Regional Pain Syndrome)
 by Amy Jenkins

 This is me, and my life.  I was injured in a work related accident.  I was a welder.  I got injured on December 27, 2007.  I was taking a weld I had done and was opening a door to get it off the stand.  The door latch was so hard I couldn’t undo it, so I had to use both of my hands.  As I was prying it loose I felt a pop in my shoulder, and an immediate burning and pain running down my arm into my hand.  The hand was stuck mid-air.  I was sent directly to the ER.   This was beginning of many tears, many tests, loss of sleep, and crying.  Now, if you have ever been to the Dr. and they ask you, “What is your pain on a scale of 1-10?”, you know what I am talking about when I say my pain is about a 12.  There was nothing in this world that would have compared with what I had felt then.  This pain level kept up with me for about the next 6 months, as I endured Physical Therapy, Occupational therapy and a medical massage.  None of which would help, but would leave me vomiting as I left therapy, every. single. time.    Between being pushed from Dr. to Dr., finally about 18 months into this, I was sent to a different Dr. who at that time diagnosed me with CRPS.   This was the beginning of finally getting somewhere.   After that, an endless supply of medications, blocks and treatments were started.  I am now looking at getting a spinal cord stimulator, surgery and possibly more surgery.  Any time you have surgery it gives the RSD a chance to spread. 

A few things to know about RSD

You can get RSD just from stubbing a toe, a sprain, break.  Surgery is another way of getting RSD. 
RSD has been around since World War 2 and there still are doctors that do not know or have not ever heard of this. 
RSD is a fight or flight type of disease.
You get discoloration, swelling, cold, burning, bee stinging feelings with this, as if someone has taken your veins and removed the blood and replace them with 400 degree oil from a vat. 
1 out of every 5 people have this disease.
There is no cure and no cure in sight.
November is Awareness Month.  My facebook page has been covered in facts based on RSD/CRPS.
It can be debilitating (very).
If I can make a difference by sharing this with you all, I am spreading awareness.
There are children as young as 2 years old that have this disease.
Our memories tend to fade in and out.  As we try to speak, the words come out as they want to, and sometimes it takes time to actually spit out what we want to say.  They call this the “brain fog” of the disease. 
Many times, Fibromyalgia comes along after the diagnosis of RSD/CRPS. 

I have met many people online and would have never imagined them having this disease.  I met 2 tonight: one with a mother that has it and has since mid-80’s. and I also met a single mom tonight that has a daughter that is now 13, but she has had RSD since she was 8.  The 13 year old is bedridden and has not been able to find a Dr. in her area that will see her, due to Dr.’s lack of knowledge.  She will be traveling to MN to see if any of the specialists there can help them.   It just kills my heart to hear that children suffer through this. 

Another tough thing to deal with is the fact that this disease is at the highest pain on the McGill Pain Index chart- our pain is even higher then those with most types of Cancer.  

If you have any questions, please ask… I am going to include a website I use to help me understand a little more clearly.

On Thanksgiving Day, along with being thankful for our family and friends, we are also doing a balloon release that will light up the sky with some ORANGE LOVE.   If any of you would like to support us, grab some orange balloons and write anything on them you wish about RSD… “Someone I love has RSD”, Find a cure,  RSD SUCKS,  (yes that was my son’s last year)- anything just to show your support.  We are being thankful to our friends that support us.  J

Again, thank you so much Jamie, for allowing me to post this on your blog.  It means so much to me. 

Peace, love and prayers to all that suffer, have family or friends that suffer.. May none of you reading this ever have to deal with this Monster.

Sending Peace to you,

***I hope you enjoyed this special post! If you would like to help spread awareness, please join in on the balloon release on Thanksgiving (November 29 for those not in the States)- release an orange balloon in honor of those suffering, and we can fill the sky with orange awareness! Leave a comment below for Amy, letting her know your plans to release balloons, or who you know that suffers from RSD/CRPS.
Until next time, my lovelies- stay Average!***

Wordle: Untitled


  1. Thank you so much for posting this Jamie. As of right now, I just wanted to let you know that our number of balloons that we had sent out has been over 200. I was blessed that the balloons were donated to us. From the Power of Pain Foundation. It was seriously amazing the response we had. I have had many people PM me and tell me that this is going to be a tradition they start with their families and will continue for as long as they possibly can. What an honor to be blessed by so many loving caring people. It truly truly is! Thank you again, I appreciate your caring and understanding ways more then you will ever know... :)

    1. I am WAY behind in my comment replies, and I'm sorry I haven't replied sooner!
      It was my pleasure to have you guest post- any little thing I can do to help spread awareness, I am happy to do! I think it's awesome that the balloons were donated to you- and the release pictures you posted on facebook were awesome :)

  2. So sorry for your friend Amy! At least she can take solace on the fact that she was rushed immediately to the ER. Who knows what kind of condition she could have had if they weren't so prompt? RSD is a terrible disease and it's a pity many people still suffer from this, even at this age.
    Mika Clary @ U.S. HealthWorks


Thanks so much for taking the time to stop by and visit! I read all the comments and try to reply to everyone. It's the least I could do- it's very...Average.