Those Who Say It Cannot Be Done Should Get out of the Way of Those Who Are Doing It

Published on May 8, 2019 under RSDS General Info

Written by Wendy Kahn, MD for the RSDSA blog.

I’ve always been very active, at least until one day in the fall of 2000, when I got a stick stuck in my rollerblade when I stood up to start my ride. I decided to have a controlled fall, but the impact on my sacrum turned out to be anything but controlled. During the next three years, I developed multiple cases of pneumonia, until the fifth pulmonologist figured out that I had twisted my spine, kinking one lung. In 2003, a nerve in my left calf became painful, limiting my walking.  My twisting deformity increased steadily until 2005 when suddenly I had such excruciating pain in my legs – first left, then right- that I couldn’t move. You know what that’s like. For once, I don’t have to try to explain.

I saw a neurologist within the week and had the awful studies. I was given too many narcotics too fast, which didn’t control the pain anyway. It took three years, much too long, before a chiropractor finally diagnosed me. I was bedridden, in constant profound pain, often so bad that I couldn’t speak or even maintain consciousness. That’s my 10/10 on the pain scale. Half of my friends and family immediately dropped off the radar, followed by most of the rest in the subsequent years. My daughter couldn’t handle it and left. No one likes pain. Those few that have stayed with me I cherish. My husband, poor guy, was my only support for most of the duration, which is hardly ideal. I hope that your family and friends are more supportive. They can fill your needs and hopefully distract you.

I fought hard all those years to get better, no thanks to the over 100 doctors I saw. None of them helped me, other than to prescribe medications. They all said I would never recover. The first neurologist, years later, had the audacity to tell me, “You should have come in sooner- your RSD could have been successfully treated.” Not one of them could handle my pain as they seemed allergic to it. Some literally drew away from me, while others seemed not to register it at all. No one offered any way out. I tried every available therapy, though I had to find them all myself, sometimes with the help of the RSDSA.

I had to take the helm myself, not easy to do while in such profound pain. If I had not been a doctor and known a little about navigating the system, I am sure I would have killed myself. Ultimately, using a combination of Chiropractic, Low Light Laser Therapy, Gua Sha (Chinese scraping technique), Craniosacral Therapy, massage and acupuncture, I regained my normal anatomic alignment. The impingement on my affected “last” nerve released. Suddenly, my body felt familiar. Since then, I have improved dramatically, regaining bits of my previous life each day. One day I could sit up in bed, then I could walk a little, listen to music, wear socks, crawl into the garden, etc. I recognize my handwriting again.

Massage is said to help with complex regional pain syndrome (CRPS)

I’m writing this in the hopes that the messages from my story might help you in your journey. Here is what I have learned:

  1. Try to find a way to repair the primary injury site. No doctor I saw thought of this, and I still don’t understand why. It follows a basic tenet of medicine that they seem to have forgotten. Once my anatomic alignment was restored, the nerve impingement let go. That was crucial. All the efforts I made to recover prior to that didn’t advance very far, though they were essential for my survival in other ways.
  2. Get the most you can out of every minute, even when you are in severe pain. It will sustain you. Even in my darkest hours for those 13 years, I was grateful for audio books, internet streaming, my own thoughts, and my loyal husband. Distraction can take you out of the pain, even if it’s only for a second or two.
  3. Get in touch with your body and believe what it tells you. I used to say, “I rent this space” about my body. I’m much more invested in it now. We work together. It took me a long time to learn how to listen to it, but don’t give up. Move as much as it will let you, maybe even a little more than that.
  4. Don’t lose hope. Never lose hope. Alternative medicine can offer a lot, although you have to be careful to pick and choose what works for you. There should be someone to guide you, but I never found anyone myself. Hopefully, you will have more luck. At least contact RSDSA to start. A big issue for me was scar tissue, especially after I developed severe atrophy in my calves. For that, Low Light Laser Therapy and Gua Sha were the most crucial. For my muscle spasms, massage was critical. I couldn’t move without it.

It’s only been a month, so I’m not there yet, but I’m on the way to becoming myself again. It feels amazing, though I’m still holding my breath. Yesterday I spent five hours in the garden, albeit on my hands and knees. My garden is going to be gorgeous this year.

Please consider making a donation to RSDSA today!

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  1. CatLadyAlice

    Thank you for writing this. It’s so important, as you show, that we have carers and advocates, people to trust. I’ve had CRPS since 07 in both legs/feet, and in my right hand/arm since 2019. I had wonderful, comprehensive and supportive care where I lived until covid began, now I am stranded without even a GP. My arm has become so painful I have trouble breathing, have not slept in three days. This will be the only thing I type today.
    I tried gua sha on it last night and it was so painful. I’m new at it, likely did it wrongly. Perhaps you could expand your discussion on this self-treatment. I know that I would be extremely grateful for CRPS-related instructions and preferences and “do not do” items.

    Thanks again, congratulations on your progress, and all the best luck to you.

  2. Michelle

    You are so inspiring in the way you write and make people aware to not give up. I got RSD in 2016 after a fall to my right hand. No one including hand surgeons knew what to do. As you know very frustrating and upsetting! Wasting time, money and even therapy until I de cider to seek acupuncture and integrative medicine this year as I also battled a herniated disc in my cervical, thoracic and lumbar regions of my spine after my daughter’s cell phone slipped out of her hands and all I could hear in my head is, “You are going to get hurt.” I have so much anxiety throughout this whole process that physically it prevented me to complete functional activities adequately. Maybe you can offer me some support or suggestions because I feel like it will never end. Just before the phone ordeal, I had some normalcy and then it spiraled again with the symptoms of RSD.

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