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My Story - CRPS Journey

A CRPS JOURNEY

2016-01-28

A CRPS JOURNEY

 

A CRPS journey has been written by a lovely lady, Jesika Bell who has had CRPS since 2011 after suffering a sprained ankle while at work.

 

This CRPS journey makes you realise that CRPS can happen to anyone for many reasons including something as simple as a sprained ankle.

 

A CRPS Journey by Jesika Bell:

  My name is Jesika and will try to keep the order of events the most organized I can severe brain fogs. I started RSD /CRPS in 2011 in my right ankle. It was the result of a sprained ankle I suffered while I was working. I used to be a very busy pharmacy technician, sadly I’m now out of job, my RSD took that away. Due to the reasons of how I got injured; my treatment protocol had a bumpy start. I was referred to a foot specialist and after few months of getting no answers and after getting worse; I was lucky to get an early diagnosis and was in treatment right away.
 
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I had my first SCS surgery back in 2013. I waited about two years to try more invasive options, medications and other therapies as well but they didn’t work as expected.

I received around 8 lumbar blocks with no benefits. I had 56 rounds of physical therapy with little improvement. Acupuncture was a torture for me. My meds combo varied and was in occasions really painful because I chose for no high dose pain killers.

I took the decision on the SCS because I knew two patients with RSD who got good results. In January 2013 I got my first permanent device. The recovery time took longer than expected. I developed severe buttock pain that back then no-one knew the reason. I had this device giving me sciatic pain, lower back pain and buttock pain for a year until I forced my Doctor to do a revision. Nothing was wrong according to him.

The extra problem I had was my SCS was implanted in my left buttock even when the RSD affected ankle was the right one; the reason – I’m a right side sleeper. Well, my RSD flared more due to the pain I had in the opposite limb and the Dr kept saying it was a mystery. Like I said, I requested a revision and also a new reposition to try to lessen my buttock pain. He agreed after a year and in January 2014 it was repositioned on my abdomen but that painful year did its part in my body and the RSD spread.

 
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The new position was/is the abdomen. I had some relief in my buttock but I needed a new lead wire to cover my then new affected limb. My Dr insisted everything was fine and disagreed with my new request to do a revision on my old surgical sites. I requested a new revision to see why my buttock was still in pain. But sadly my insurance carrier changed. I waited another year to find a new Doctor who would try to get me an approval for a new revision and he did it. By April 2015 I got a new revision and opted for a new device which is now MRI compatible. My new Dr also removed the old equipment left behind, cleaned all the scaring tissues then afterwards he switched my old SCS for a new one.

I must admit the SCS has made a difference since I’ve had it in. I personally think the position is not in the appropriate place, at least the buttock area wasn’t for me. The Sciatic nerve is right there, and it fights back at you. You’re sitting on it as well as lying on it. To my opinion, this delayed my recovery time. If I had had this SCS placed in my abdomen since the beginning I probably wouldn’t have lost my job or been in a long, hard battle with additional pain. 

My device has allowed me to walk again. If the battery goes to low, I feel the pain right away. Oh, I forgot to mention…. I got a second wire that’s now connected to my left leg. The reason the pain persisted after the first removal was that the original wire remained there, it was never pulled off. I had severe scaring tissue as well that was left behind and never cleaned out. With my last surgery, it finally corrected what should have been the right thing since the beginning, clean up all the old wires and scar tissue.

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  I’m walking more which is good. My case is little if not too complex. I can’t walk fast, stand long periods or run because besides the RSD /CRPS, my original ankle injury had a broken cuboid bone and a cyst trapped there that makes my bones rub every time I move. I was not able have surgery for it since the beginning because of the RSD. I was able to walk one (1)  mile last year after four years of not being able to even wear shoes. I walked one mile!!! It was slow and I rested often, but I made it. I also walked in a special RSD event and it was me getting back to life. I have developed severe flares on both arms and my body is fighting with severe unexplained allergies, migraines, fibromyalgia, non-alcoholic fatty liver, high cholesterol, pre diabetic … List keeps going on. One of my doctors considers RSD / CRPS to be in my immune system and no SCS works for this.   Even with everything not going 100% as I expected, I’m ok with having my SCS. I have limitations, yes…. The SCS isn’t easy to handle physically or emotionally. It limits your life in many ways and along with my other issues make my life not as simple as I hoped to be.
 
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The abdomen site was something I asked for. I believe in the SCS otherwise I wouldn’t have tried it so many times. It does make me functional again – I walk with shoes now and of course my ankle braces are to avoid the friction in my bones. With time I had to learn that the SCS is more for neuro pain not for bones. One important thing also is to get the RSD area desensitized. If you don’t do this, nothing that touches that area will improve. After the SCS implant you need to have physical therapy!!!! Take time to recover and don’t rush things. Let the device set in. We all react differently to pain or any procedures, what might be good for one may not be good for others. Ask questions!! You decide what you think may work for you considering your profession. But to me the SCS shouldn’t be placed in the buttocks. Period!!!

I also forgot to mention other ways that I learned to calm my stress, anxiety, allergies and my immobility – yoga, reiki, meditation, gluten free diet, cut out the most I can of red meats from my menus. Mirror therapy not only for my affected limbs but also for my image in general. This is part of the mind healing – your brain gets the image of you being fine and will respond by being less aggressive… Look what your image is in your mirror and that’s how the brain sees you.

I know when we are in flare days nothing makes sense … It is a process of learning and accept changes. It took me a long time to finally feel comfortable with my new life changes.

 
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RSD isn’t easy at all and even when I had all the treatments that I had done and the personal effort I made to learn other ways to help me, feeling lonely in this battle hurts the most.Being with people who truly understand and support our cause is the other part of our route to recovery. Thank you all for your invaluable help. My best wishes to you who get this device soon and to those who have just got it. Please remember to take your time to recover. Many surgeries to correct what is wrong with your RSD create bigger chances of spreading. I hope you look into my RSD/CRPS journey and it helps you to learn other perspectives you may have about RSD and the SCS. It is a long road ahead and we are still in training wheels. Remember – the SCS isn’t a cure or guarantee of remission, it is just an extra helper to be more functional and on occasion to many others it doesn’t even help. It helps me even with the rest going on not being so well… My body decides to fight back and I will try my best to win that battle by being patient.   Regarding your doctors – be brave and don’t let any Doctor tell you any different. What feels wrong to you is generally wrong!  

Wish you all a great year and no more painful days!! Many blessings and gentle hugs,

  Love, Jesika

 

Thank you so much Jesika for writing your CRPS journey! I hope people will read and learn more about the Spinal Cord Stimulator (SCS) and about the various ways you’ve learned to try and cope with your CRPS/RSD.

  Share Your Story

Do you have a Spinal Cord Stimulator for your CRPS? Has it worked for you or not? Do you care for someone who has an SCS implant? Why not tell us your CRPS journey?! Please EMAIL US  your CRPS story as either a sufferer or non-sufferer but care or love someone with CRPS.

  Last Updated: 27/01/2016

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Carole cole

    I have read your piece ,I have now had RSD for years since 1998 it not easy as you now I have had all sorts of bloks and epidurals sa like you I have it in90pc of my body .it started with dupritons contractor now I have to us a electricwheels chair .hearing your story makes me feel that I am not alone with this I have a very carring partner but when I have a particularly back flare he feels helpless I am going to get him to read your page as I think it may help Thankyou for putting it into words as can’t with thanks Carole Cole

    • Jesika

      Thsnk you so much … I just found your comment
      I hope your pain gets more under control
      I will add an update since to many things had change … Is a long journey but you are not alone . Thank you

  2. Jesika Bell

    Thank you so much Victoria and Burning Nights ,for letting me tell part of my journey … Rsd battle isn’t over … Just start it .
    Healing hugs to all of you , ❤️ Jesika

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