Sympathetically Maintained Pain: My Story

This post will be a little bit different from the usual here on The Reckless Choice. Six months ago, I pulled a muscle while working as a ski instructor. It turned into a rare and painful condition. Today is my 29th birthday. I’m healthy again, and I just went for my first post-injury trail run.

For my birthday, I want to tell you my story. I want you to know the signs of sympathetically maintained pain and its sibling, complex regional pain syndrome. 

Like a lot of rare conditions, complex regional pain syndrome (CRPS) isn’t super well understood. A lot of research still needs to be done. The basic idea, though, is that a part of your nervous system (the sympathetic nervous system, which controls messages sent throughout the body) gets knocked out of whack. Typically, it’s caused by injury or surgery. It affects one of your limbs, for me, my right foot and lower leg (even though my injury was next to my knee). This is the important part: the earlier its caught and treated, the better the outcomes. 

Most people aren’t diagnosed until around 3-6 months. I was lucky to be diagnosed at 1 month, which is when the disease, for me, was still classified as “sympathetically maintained pain (SMP).” SMP always progresses into CRPS if not treated, but if caught and treated aggressively, is reversible. If not treated, or treated too late, it can cause lifelong chronic pain and disability.

But let me back up.

My Story

The day of the injury, the doctor at the mountain base diagnosed me with a tear where my calf muscle attaches to my knee (Anatomy nerds: lateral head of the right gastocnemius. Still unsure if it is muscle or ligament tear.). He put me in a boot to immobilize my calf, gave me crutches and a physical therapy (PT) prescription and sent me on my way.

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At that point, it seemed like it would be a pretty simple recovery. Bummer, but out for probably no longer than a month.

Within a couple of days, my right foot started getting really cold (regardless of ambient temperature) and sort of discolored (reddish purple). I shrugged it off as effects of immobilization or maybe swelling. The pain also gradually started getting harder to pin down and… different. It didn’t just hurt by the injury any more, and after a week or two, I started to get shooting pains up and down the side of my leg. We suspected that I’d possibly injured my nerve at the time of injury. After trying to walk around in the boot one day, all the pain shifted to my foot and stayed there, radiating upwards. My foot was now cold all the time and dark, blotchy red no matter what I’d been doing.

I went back to the doctor for a follow-up and they (incorrectly) diagnosed a nerve issue, but he couldn’t say confidently where or what treatment he recommended. He wanted to wait 2-3 weeks and see if it resolved on its own. Out of character for me, and one of the biggest lessons of this whole experience, I gathered my nerve and stood up for myself. (Granted, I had Nik’s encouragement and support!) I called his office and requested a nerve study that would tell us exactly what was happening and where, which would guide our treatment plan. We talked for a while, and I calmly but firmly delivered my argument. He calmly but firmly tried to talk me out of it, but finally he agreed to order the test.

Diagnosis

I went down to Denver a couple weeks later and had a super painful test done by neurologist who was the first to diagnose me correctly. He took one look at my foot, listened to me describe my symptoms, and told me, “I’m sorry, you have Reflex Sympathetic Dystrophy.” I kind of blinked at him, said, “What’s that?” and he said, to the best of my memory, “It’s not good. I hate to be the one to tell you. Go home and Google it, it will scare you.” Um, at least he was honest? This was one month after injury.

I did what he said, went home, and Googled it. Turns out Reflex Sympathetic Dystrophy is now typically known as Complex Regional Pain Syndrome. I also found out that I may need mobility aids for the rest of my life and that advanced stages are thought to be more painful than cancer.

What followed was a really hard period for me. I felt lost, like my able-bodied friends didn’t really get it and that I had no right to talk about my issues to my friends with disabilities. While I was (and am) sure I would have led a full, meaningful, and active life had I developed CRPS, I was afraid of the unknown. At that time, I wasn’t even sure treatment was possible. I was scared and grieving, and coming to terms with the prospect of life-long chronic pain.

Meanwhile, I was in a lot of pain. One day, I pulled the covers off and it brought me to tears. I couldn’t tolerate being touched. I still couldn’t drive, and just the vibration of being in a car was awful. My foot was so swollen I could only wear one pair of shoes, and that was when wearing a shoe at all wasn’t too much pressure on my foot to handle.

Slowly I realized that the disabled community was there for support and my friends were not going anywhere. People who had been there gave me welcome advice about self-advocacy, re-learning to walk, and navigating society. Friends checked in on my mental health, came over for game nights, and kept me grounded. They understood when the pain left me mentally and physically fatigued.

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Grateful for supportive friends who got me up off my butt, stuck me in some adaptive equipment, and took me on adventures. (Here: Nordic sit skiing with my friend David)

I went back to the doctor (the one at Winter Park, not the nerve study doc) with a pile of research and the name of a specialist. When he heard the test results, his eyes got big, his confidence evaporated, and he told me to go to the specialist and he’d do whatever he said.

Treatment

Meanwhile, my fantastic PT had been keeping up with this ever-changing wheel of symptoms and diagnoses with great skill. I started going twice a week and doing things ranging from desensitization to “mirror therapy” to drawing my feet. Basically, re-training the brain’s pathways to get back online and send and receive signals correctly.

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Drawing octopus eyes on the tape makes it way more fun!

My first visit with the specialist was probably the best experience I’ve ever had with a doctor in my life. He sat down with me and explained exactly what was happening, why, and answered all my questions. He explained the current research and was so confident and knowledgeable that a lot of my fear melted away. We had A PLAN!

The plan was to do a series of nerve blocks. Basically, he injected ketamine and some other stuff into the root of the nerve bundle beside my spine in my low back. The idea is that the block, which doesn’t affect the function of your limbs at all, allows the nervous system to “re-calibrate.” After the first one (which was probably 2 months post injury), suddenly things didn’t hurt so bad. My foot started to stay warmer. Stubbing my toe was not tear-inducing. I still had all the symptoms, but muted. Suddenly, I was able to try to walk again! I worked my way from crutches to hiking poles. PT added strength-building to the desensitization and mirror therapy. I realized I was finally getting better instead of worse.

I got one more nerve block about a month after the first one (a little over 3 months after injury). After this one, all my symptoms were completely gone, and have stayed that way. The specialist said that means it was definitely sympathetically maintained pain, and we successfully caught and treated it early. I was very unlucky, but very lucky.

Now

I’ve just been officially discharged from PT and I’m able to run again. I have been working to rebuild the 10 pounds of muscle I lost in those months, as well as my balance and mobility. I still have some weird secondary issues in my knee from the original injury, but overall, things are coming along well.


Complex Regional Pain Syndrome/Sympathetically Maintained Pain Symptoms to Watch For

This is what I want you to know! Recent research suggests that CRPS is a little bit more common in women, and typically develops after injury or surgery. However, that injury can be as minor as a twisted ankle. It’s rare (200,000 each year experience this condition in the U.S.) but severe (the level of pain is measured as one of the most severe on the McGill University Pain Scale).

CRPS-Pain-Scale-McGill-Pain-Index-42-out-of-50
CRPS on McGill Pain Index, from Burning Nights CRPS Support, www.burningnightscrps.org

 

So, if you are injured and then develop the symptoms below, get it checked out right away. My doctor wasn’t really familiar with CRPS, and I had to do a lot of self-advocacy.

CRPS/RSD Signs and Symptoms Checklist (from rsdsa.org)

There is no gold standard for diagnosing CRPS/RSD. If the pain is getting worse, not better, and if the pain is more severe than one would expect from the original injury, it might be CRPS/RSD.

Look for these telltale signs and symptoms:

  • Pain that is described as deep, aching, cold, burning, and/or increased skin sensitivity
  • An initiating injury or traumatic event, such as a sprain, fracture, minor surgery, etc., that should not cause as severe pain as being experienced or where the pain does not subside with healing
  • Pain (moderate-to-severe) associated with allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower
  • Continuing pain (moderate-to-severe) associated with hyperalgesia, that is, heightened sensitivity to painful stimulation)
  • Abnormal swelling in the affected area
  • Abnormal hair or nail growth
  • Abnormal skin color changes
  • Abnormal skin temperature, that is, one side of the body is warmer or colder than the other by more than 1°C
  • Abnormal sweating of the affected area
  • Limited range of motion, weakness, or other motor disorders such as paralysis or dystonia
  • Symptoms and signs can wax and wane
  • Can affect anyone, but is more common in women, with a recent increase in the number of children and adolescents who are diagnosed

 

So, if you sprain your elbow (or whatever) and then your hand turns a different temperature, red, and super painful, promise me you will get it checked out, okay?


I’d never heard of this before it happened to me. Thank you for reading and for your support and love. ❤

 

 

2 thoughts on “Sympathetically Maintained Pain: My Story

  1. Wow, that sounds scary. I’m glad to hear you caught it early and got through it okay. I have not heard of this, and I know about all kinds of weird things. I have nerve damage from surgery on my dominant wrist and understand the struggle of coming to terms with your pain and abilities, and tons of OT. Long sleeve shirts still cause pain sometimes and it’s been 8 years.

    Like

  2. I have never heard of this. Thank you for the new information. I’m so glad that you received an accurate diagnosis and have improved! Good luck.

    Like

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