I could not agree more with the below incredibly wise adv’ice’ (get it?!) about CRPS/RSD & ICE from the website rsdhope.org.…
Unless you’re wanting pain that feels like someone has ferociously stabbed you with a razor sharp blade prior to ripping it haphazardly through your affected limb with great might and very little care (obviously) to your feelings…
DON’T APPLY ICE IF YOU HAVE COMPLEX REGIONAL PAIN SYNDROME (CRPS/RSD)!!!
Just, no. xx
hopeless-harlot said: Hello, I was sent on to you by Laura Jones from Doha, I recently got diagnosed with CRPS. I've been struggling with it for 6 years with no diagnosis. So Laura thought It might be good for me to approach another sufferer. How are you coping?
Hi hi! Nice to meet you, although I’m sorry about the circumstances. What’s your name? I’m so sorry to hear about your pain. A diagnosis absolutely does help though! Don’t you agree? It’s the first step. Your pain has been justified! You’re on your way..!
Again however, CRPS is no easy feat. The right doctor for you can be so hard to find. Same thing when it comes to finding the right treatment. That said, we’re all here for you!
I had a really tough time in my first year with doctors telling me straight up that there was no hope with this illness. I’m super lucky that my family wouldn’t let me listen. If you’re facing this same thing with doctors being awful to you at the moment, I’m here to tell you THERE IS HOPE!!!
After a LOT of physical therapy and a round of Hyperbaric Oxygen Therapy (HBOT - Very interesting and worked to decrease my sensitivity for a period of time! I write about it earlier on this blog…) I found my way to the wonderful Dr. Timothy Lubenow at Rush Hospital in Chicago*. You can read all about my treatment with him if you go back in time on TheProject3x5 (I have a Spinal Cord Stimulator and what not…) I’ve also done inpatient and outpatient ketamine treatments along with IVIG treatments with Dr. Enrique Aradillas-Lopez at Hahnemann/ Drexel Hospital in Philly.
*Some things have worked, others have not. And of course, I have to put the disclaimer that not all doctors are right for everyone. I only write about my experiences. The same goes for treatments. I write with a lot of positivity, hope, and openness about the treatments that have worked for me… but this disease is super tricky. Different strokes for different folks and what not. That said - stay positive!)
Just a quick warning… In this day and age - with nagging agony day after day after day - it can be pretty easy to find yourself lost in the deep dark depressive depths of message boards or twitter chats filled with misinformation and (almost understandable) hate based on some patients’ personal gnawing feelings of pain.
You must remember to rise above!!! To take everything you read with a grain of salt! (Again, including what I write…) So much of what’s out there is peppered by neuropathy - but thankfully positivity always abounds :)
Always remember that there IS hope within this community! Stick to those who are fighters, and become a pain warrior yourself!!!
You can keep up and continue to learn more about what goes on by checking my Twitter feed, Pinterest, Instagram, and of course this blog!
Thanks for getting in touch!
Have a happy and healthy day.
- Danielle xx
THE SISTERHOOD OF THE TRAVELING ANTS…
Miss Lauren (to my right, pictured today with me in stunning Florence, Italy) has been my very best friend since the both of us were 2 years old; expatriates in Doha, Qatar; and very, very naughty.
I adoringly call her my Lou. She’s made many appearances on TheProject3x5 throughout its existence - and for good reason!
I write about Lou today because she is a constant. She’s a blessing. She hasn’t disappeared in the face of this illness as so many other friends have - to which I’m sure many of you can relate. Nope! Lou is a constant soldier. Withstanding the ins and outs of Complex Regional Pain Syndrome much like the shore manages to withstand constant demands of the sea. She’s been here from the beginning and has made it clear she wants to weather this storm with me. It’s bloody brilliant.
To Lou it doesn’t matter that I can’t go out partying anymore. That my fatigue seems here to stay. Or that I might have to change plans at times. Lou does not judge me on the fact that I have to take medication now. She goes with the flow. Supports me. Lifts me up with positivity and quietly stands by me on the days that I’m down. Lou has not stopped telling me about the bad news in her life for fear that what I’m going through is worse. Nope! And that’s a big one! For how can a friendship work when one party is afraid to be open and honest about their life as well?
And so, I happily urge you to use my Lou as an example. Friendships can be tough in the face of chronic pain or illness. But, once you get over the initial hurdle of openness and honesty… Know that you may look forward to a new phase of rewarding friendship. One deserving of YOU!
Have a great day full of health and happiness!
Big love - Danielle xx