Meet Genevieve. The CRPS Chronicles

Genevieve Age: 33, Living in Virginia.

Genevieve is a blogger/social media manager who lives in central Virginia with her husband and two dogs. I met Genevieve in October of 2015 during one of the scariest times of my CRPS.  We had a friend of a friend of a friend connection and we instantly became friends. She was my first friend with CRPS and it was such a relief for someone to be in my life that understood what I was going through.

Through social media messages and texts our friendship grew quickly.  We found that CRPS was not the only common thing that we shared. We both loved animals, loved to read, watch trashy tv and had obsessions with the same bands in our early teens! She encouraged me to start writing my blog. She became my lifeline on those difficult nights and still is there in an instant if I am struggling.

Genevieve probably knows more about me than most of my good friends and I truly consider her a lifetime best friend.  She has a heart of gold and honestly gives better advice than most therapists that I know.  She is nonjudgemental, funny, super smart & a blast to hang out with!

We were lucky because we had the opportunity to meet a few months after we met online.  We met in a small Starbucks and talked non-stop for hours.  We only live about an hour and a half apart so we were able to visit regularly and she came to visit me in the hospital during a ketamine treatment.  We have grown to the level of friendship where we can be with the other person in our worst hour.  There are no hidden agendas. No fake masks. No pretending.

I asked Genevieve if I could feature her as my first CRPS Chronicle warrior and of course she said yes. Her story is powerful and she is inspiring. You can read more about her on her totally amazing blog, www.shipwithnosails.com  But first, here is a small glimpse into her world which has been drastically changed by CRPS.

How & when did you develop CRPS?

I developed CRPS in October of 2011. My CRPS originated from a running injury in my left foot. In September of 2011, I was in the process of trying to transition from a heel striker to a forefoot striker to become a faster runner. Unfortunately changing my form gave me tarsal tunnel syndrome that wouldn’t go away no matter how much I rested it. I went to see a a cortisone shot into my foot to try and calm things down but he ended up hitting the posterior tibial nerve with the needle. This nerve injury then became CRPS very quickly.

How long did it take for you to get an accurate diagnosis?

My PT suggested I might have it in March 2012 but I did not have an actual diagnosis until April 2013.

What areas are now affected by CRPS (did it spread) explain.

” now have CRPS in my entire left foot, left leg up to my hip, right pinky toe, left arm (up to shoulder), left hand, and right bicep.

What has been the most significant change in your life since developing CRPS? How has CRPS changed your life? 

The biggest change for me has been losing A LOT of independence and becoming extremely isolated. I had been able to work part time with my CRPS but in February 2015 my CRPS went from moderate to severe which changed everything. I was bedridden for over a month and by April 2015 I became completely wheelchair dependent. I also lost the ability to work (I owned my own business) and drive which was incredibly challenging and really hard. I spend a lot of time alone because Im usually in too much pain to go out OR if I do go out, it flares me up so much that I am in bed for two days after. I have always wanted to be a mother but as time passes and the CRPS spreads, I worry that may not be in the cards for me.

What is one piece of advice you would tell someone who is newly diagnosed with CRPS?

Find a therapist, especially one who is knowledgeable about chronic pain. Its important to have a safe space to process whats going on as well as learn techniques on how to deal with the pain and isolation CRPS can create.

What would you like for Doctors/Medical Community to know about CRPS?

I wish more drs knew what CRPS even is so more people would be properly diagnosed. I also wish more Drs knew about treatments like ketamine and low dose naltrexone.

What treatments have you undergone? Were they helpful? 

The significance of my ketamine treatments were that I felt that it stopped spreads and areas that were affected shrank)

Treatments & their effectiveness

• 5 nerve blocks (no),
• 20 sessions Hyperbaric Oxygen Treatments (no),
• 10 days Calmare Treatment (no),
• low dose naltrexone (no),
• PEA Pure (no),
• Neurontin (no),
• Acupuncture (no),
• Chiropractic care (no),
• 8 months IVIG (no),
• CBD oil (no),
• High CBD/low THC weed (no).

Ive had some results with ketamine infusions (4x) along with Physical Therapy. I was even able to get down to ZERO pain for 3 days during my 3rd ketamine infusion but unfortunately have still had 2 more spreads even with ketamine infusions (including a spread from a ketamine infusion site)

Has your CRPS ever gone in remission?

No

What current Medications are working for you? 

Morphine helps a good bit.

Where can you find Genevieve 

•  Instagram: gtothevieve
• twitter: gtothevieve
• blog: http://www.shipwithnosails.com

 

 

The CRPS Chronicles is a place to honor the Warriors of Complex Regional Pain Syndrome.  A safe place. If you or someone you know would like to share your story please visit CRPS Chronicles Questionnaire by clicking here