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Welcome to my CRPS Journey

Hi, I’m Stacey! Like most people with this diagnosis, I never thought that I would be diagnosed with a rare, chronic illness that the medical establishment still does not know much about. To start out, I thought that it would be a good idea to share what led to me developing Chronic Regional Pain Syndrome (CRPS) and give some info on what it is for those that are unfamiliar. CRPS Type I impacts about 5 people out of every 100,000 according to a 2017 CRPS update in the Burns & Trauma Journal [

1

] . CRPS affects about 200,000 people per year in the US. Type I is CRPS following an injury, which is the type that I have. I did not realize how rare it was until I started doing research on the internet.

Stacey Chronic Regional Pain Syndrome Journey CRPS

What is Complex Regional Pain Syndrome (CRPS)?

Complex Regional Pain Syndrome (CRPS) used to be known as “Reflex Sympathetic Dystrophy.” RareDiseases.org describes CRPS as: “a disorder in which pain, occurring spontaneously or from a sensory stimulus, is disproportionately far more painful than it should be.” They go on to describe that sensations may include increased sensitivity, burning feelings, or even numbness. Swelling; edema (fluid retention); temperature changes both hot and cold; weakness; decreased range of motion; as well as skin, nail, and hair changes are also common symptoms of CRPS.

Type I CRPS follows an injury, in my case a broken leg bone (tibia).  Type II CRPS is rarer and there is documented nerve damage in those cases. Researchers and medical professionals are unclear as to what, exactly, causes CRPS.
What is CRPSRisk factors include:

  • wearing a cast after an injury.
  • changes in the sympathetic nervous system that is in charge of “fight or flight” reflexes.
  • abnormally increased inflammation.
    It is theorized that genetics may play a part in who is more susceptible to CRPS. Psychological factors like depression and anxiety may worsen CRPS but it is not a cause of the illness. [1]
The Budapest Criteria

Doctors typically use the Budapest criteria for diagnosing CRPS.

the Budapest criteria for crps

Figure from Speaking of Research.

 

How CRPS is Treated

How complex regional pain syndrome is treated

Figure from Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 5th Edition. Harden et al.

My Experience with CRPS

Leg in a boot after broken tibia

It All Started With a Broken Leg

After I broke my leg in January 2024, I was in a hard cast for 6 weeks. This is typical of a clean break that does not need surgery. After 6 weeks, I felt that the pain was still too great to transfer to a boot but followed my orthopedist’s recommendation and began wearing a boot. I did experience some improvement. When I had my 4 week follow up with the doctor (10 weeks post-break)  I still had symptoms like swelling and discoloration of the foot and ankle. My doctor examined my foot and told me that I had CRPS. He called it a “classic case” and even asked if a student could come in to look at it! He acted very casual about it, as though it were common. He said essentially that sometimes the nerves get “turned on” by the injury and don’t turn off. The doctor said that he would refer me to pain management and they would “reboot my nerves with a steroid shot, kind of like how you reboot a computer.” I wasn’t thrilled to have a new diagnosis but as I told my friends and family “it sounds scary but it really isn’t a big deal! I just have to have a shot.” Then, I read up on CRPS on the internet. The reality of life with CRPS for most people was NOT as simple as my doctor made it sound!

As I read about people’s real life experiences, I started to get scared. My pain was in the 2-4 range on a scale of 1-10 but there were people out there living in constant, excruciating pain. People talked about having no symptoms for three years and then all of a sudden, one day waking up in excruciating pain. I started to get concerned, reading about treatments not working or even making things worse. What was this illness I had been so casually diagnosed with?

 

My Symptoms

  • Swelling in the foot, toes, and ankle that did not improve over time.
  • Pitting edema (fluid in the foot and ankle that would not immediately bounce back when pressed.)
  • “Pins and needles” feeling on the bottom of my foot at times but not all the time.
  • Extreme discoloration whenever my foot was not elevated. Change in color happened almost immediately when not elevated.
  • The discoloration progressed up my leg to my calf as I began to put weight on the foot.
  • Skin on my foot looked uneven and “mottled” darker in some places even when elevated.
  • Random numbness. Sometimes one toe would go numb, then another would. Sometimes just the bottom of my foot would be numb.
  • Random pain. I would also have pain in just one toe, then another.
  • Referred pain. I would have pain that seemed to spread around my ankle so that it hurt on the opposite side from where it was broken.
  • “Popcorn” feeling in my foot and leg. Random popping feeling that was similar to the popcorn feeling but also different.
  • Feeling of warmth to the foot and leg when touched.

Using a knee scooter with CRPS after broken leg

 

Next Steps

My doctor referred me to a pain management doctor. I was very happy that they got me in within a week. The consensus seems to be that with CRPS, quick diagnosis and treatment is the best way to get relief from symptoms, perhaps even remission. I don’t know what to expect of the coming weeks and months but I am hopeful. We take so much for granted when we are able-bodied. Being able to walk around with ease; being able to do things around the house; being able to sit and even lie down without pain. I know that when I am able to do these simple things again I will absolutely NOT take them for granted!

Disclaimer

I am not a medical professional and I am not an expert on CRPS. I am not providing medical advice here, only sharing my personal experiences. This should not be substituted for medical advice from your own doctor. Everyone’s experience is different.

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Finding Empathy for My Body

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“It is difficult for a woman to be healthy in a culture that is still so very sick. It is the ultimate victory for a woman to find a way to love herself and other women while existing in a world insisting that she has no right to.”
– Glennon Doyle

Finding Empathy For My Body

I had a weird experience yesterday, as I looked over at my “bad” leg. I keep my foot elevated whenever I’m sitting and as I glanced at it, I felt a sudden empathy for it.

It probably sounds really weird, because my body is me, right?

For most of my life, my body and I have not had a great relationship. Growing up in the 80s-90s, I consumed fashion magazines at the peak of “heroin chic.” I had a CK ad of Kate Moss on my bedroom wall as a pre-teen. I never felt that I was thin enough, even when I was just a few pounds away from having an underweight BMI. There have been times when I have achieved body neutrality but I have never really been friends with my body.

As I aged, I began to appreciate my body more for what it could do than how it looked. By my 30s, I knew that I was probably never going to appreciate how it looked, having spent so many years focused only on perceived flaws. The first time I ran a mile without stopping, I began to appreciate what my body could do. Weight lifting and yoga, my preferred forms of exercise, make me appreciate my body for its strength and flexibility.

I have felt, for most of my life, like the thing that inhabits my body – call it a soul, spirit, energy, whatever your preferred word is. It feels most often like a thing that gets me around, as though I am that weird little alien piloting a human body in the first “Men In Black” movie. So feeling empathy for it, as something separate than ME, isn’t all that weird.

 

My Leg Has Had a Rough Year

As I looked at my leg, I thought about what a rough year it has had so far. It has been broken; immobilized in a cast; in multiple different forms of pain for the past 14 weeks. Its whole purpose is for supporting me and it has been unable to do that most of the time. If I think of my leg in the way I would think of a child or an animal, I imagine that it must feel sad not being able to do what it is meant to do. It has lost at least 1/3 of its muscle mass. It sort of makes sense why my nervous system, which is always in a state of low-level anxiety, would go into a meltdown of sorts when it began to start to work again. I know my conscious mind was very afraid as I began my time out of a cast and in a boot. I don’t think that is what caused the CRPS but I do think that it is unsurprising that my sympathetic nervous system went into overdrive, so to speak

I was afraid of hurting myself again. I was afraid of somehow harming the healing that my leg was doing. I was afraid of falling again, by slipping in the bathtub or by accidentally putting too much weight on it. I was afraid that my husband was going to start to resent having to take care of me. I was afraid that I would be in constant pain for the rest of my life… The month between getting my cast off and getting my CRPS diagnosis was full of fear.

I started to wonder what might happen if I replace all of that fear with love.

Practicing Love

As an appreciator of Buddhism (I am not exactly a practicer follower of any one particular religion) one of my favorite practices is that of metta, loving-kindness. It is a simple practice, of radiating love for ourselves and all beings. As the Metta Institute explains: “Metta is first practiced toward oneself, since we often have difficulty loving others without first loving ourselves. Sitting quietly, mentally repeat, slowly and steadily, the following or similar phrases: May I be happy. May I be well. May I be safe. May I be peaceful and at ease.”

 

As I looked at my leg, I thought, maybe I should practice metta toward it. It hasn’t done anything wrong. It isn’t my leg’s fault that I developed CRPS, it isn’t anyone’s fault as far as I know. Being upset or angry with it for being in pain doesn’t lessen my pain. While I am grateful that my pain is nothing compared to many people with this condition, I do experience pain that isn’t due to my injury. Most of my pain is in the morning, when I first get out of bed and begin to use my foot.

So that’s what I have decided to do. I figure, it can’t hurt anything. It might help, but at the very least it can’t hurt.

Me at the Ten Thousand Buddhas temple in Niagara Falls, Ontario

 

Managing CRPS

Stress management is one of the things that is recommended for helping to manage CRPS. Mindfulness meditation is frequently what is recommended for helping to manage stress. We live in a very “mindless” society. We are always busy, going to work or school or practice or running errands, going going going. When we are not busy, there is so much that is set up to distract us from being present. Phones, social media, television that plays the next episode automatically, more and more things are geared toward distracting us from whether or not we are actually happy.

It’s never a bad idea to start a mindfulness practice. For me, I have definitely gotten out of the habit of meditating daily and slowly down in an intentional way. A metta practice is a good way to tune into the present moment again as I wish for love and blessings to come to myself and everyone around me – including my body.

Metta prayer that I painted on the fence in my meditation garden.

 

The Future is Unknown

For now, that’s all I know. There’s no telling what the future with CRPS brings. One of the physical therapists I have been working with told me about a woman she works with who was late diagnosed and even as advanced as her CRPS was, she has experienced an ease in symptoms. That is certainly reassuring since so much of what I read on the internet is the worst case scenarios.

I plan to just keep living my life and we will see what happens. I think that’s basically all any of us can do whether we have CRPS or not. In a couple weeks, we are taking a long weekend vacation and meeting up with friends. It was supposed to be a hiking trip and that has been indefinitely postponed but there’s still plenty I can do with a walker and/or a cane.  I bought tickets to see a couple of my husband’s favorite bands in Atlanta for his birthday in August. I figure no matter how I am doing, there’s a way to make it work. The venue has seats so I know I’ll be sitting down at the very least! Unfortunately, most of the bands I would like to see are playing standing room only clubs so I don’t have any plans to see any of them this year. One is from Scotland so there’s no telling if they will be touring next year but there’s not a lot I can do about that. Life goes on, whether or not we are living it. My plan is to get busy living.
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Pain Management

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pain management for CRPS

Pain Management Is the First Place You Go After a CRPS Diagnosis

After my orthopedist told me that I have CRPS, he told me that he was referring me to pain management. This seemed kind of odd to me, because my main symptom was not pain. I know that I am very lucky for a multitude of reasons and I definitely do not take that for granted. Many, if not most, people with CRPS have debilitating pain and spend a long time without a diagnosis. CRPS is rare, only about 200,000 people are diagnosed with it each year in the US.

The orthopedist was very casual about the diagnosis. He said that I would go to see a pain management doctor and get a shot that would “reset my nerves like rebooting a computer.” When I told my family and friends about my diagnosis, I said “it sounds bad but it’s really not that bad, I just need a shot.” I learned quickly that it is a complicated, chronic, incurable illness. I may experience remission but CRPS does not have a cure. I am very thankful for the CRPS subreddit, because without the people there I would not have made sure to take the first available appointment with the pain management doctor.

 

“People living with CRPS have pain that is much greater than normal, even without a visible injury. Other symptoms include changes in skin color, temperature, and/or swelling on the arm or leg below the injury site. CRPS symptoms may also change over time including the type of pain, skin color, and temperature changes.” – National Institute of Neurological Disorders and Stroke

My CRPS is Unusual

I was diagnosed four weeks after getting the hard cast off my leg and I noticed the symptoms around that same time. My symptoms are predominantly swelling that will not go away; fluid retention; and numbness. I am thankful that my pain has not progressed beyond about a 4 on a scale of 1-10. I know that could change at any time, so I am practicing gratitude for any low-pain days that I have.

Getting a quick diagnosis meant that I have a good chance of experiencing remission. I had my first nerve block 10 days after my diagnosis. Since then, I have noticed several improvements. It is easier to walk; some of my swelling went away; I’m not experiencing tingling and numbness any longer; and my pain became more localized. Instead of having pain all over my foot/ankle, my pain is in places that make sense, like where the break is still healing.

treatment for CRPS

“CRPS has no cure. Treatment is most effective when started early and focuses on relieving symptoms, slowing the progression of the disease, and helping sufferers cope with the pain and lead as healthy lives as possible.” – Stanford University

Living with CRPS

Things I have been doing to help with my CRPS:

  • Taking the medicine that the doctor prescribed, even though I really didn’t want to.
  • Physical therapy twice a week.
  • Doing my PT exercises at home on days I don’t go to PT.
  • Weight training and using my recumbent bike to build endurance and keep moving.
  • Making myself walk on my “bad” foot instead of using the knee scooter all of the time.
  • Taking vitamin C, Omega 3-6-9 supplement, and extra vitamin D.
  • Eating more protein.
  • Eating less processed food to try to reduce general inflammation. I am going to continue trying to eat less convenience foods.
  • Getting as much rest as possible.
  • Continuing to elevate my foot whenever sitting to help with the swelling and fluid.

Nerve Blocks for CRPS

I did not read up on the nerve block prior to having it and I wish that I had! I thought that it was a simple shot like an epidural. In fact, your doctor uses an X-ray to find the correct nerve to inject. I opted to do only local anesthesia and there were a couple times when the pain was much more intense than I anticipated. Lying on my stomach, wide awake, trying not to think about what exactly was happening was a bit much for me. I will need a second nerve block and I plan to be sedated for that one. If only because I worried that me saying “ow” and moving kept my doctor from being as thorough as he would have been if I was silent. That is likely not the case but it is something I worried about! I have some soreness around the area where the needle was inserted but nothing beyond soreness.

Since the first nerve block four days ago, my physical therapist has noted that I have made quite a bit of improvement. I know that it could be temporary. I have to caution myself to not expect more than I should. Walking with just a brace and a walker has been incredible! Walking with just a boot and being able to carry something is incredible too. I was able to water my plants and to ice dye two sweatshirts that have been ready to dye since before Christmas.

I hope to be able to begin doing some more things around the house so that my husband can get a break. For the last 12 weeks, he has had to do all of the cooking, housework, dishes, laundry, caring for our dogs and for me, and I know it has been overwhelming. We usually share the chores and it is hard for me to not do my part. I know the tendency is to overdo it once you get a nerve block so I am trying my best to keep my activity to just slightly more than it was prior to the block.

My second nerve block is scheduled for mid-May, so I will blog about that after it happens.

Trying Not to Be Afraid

I am very much trying to focus on now, rather than be afraid of what might happen in the future. I know from reading about other people’s experiences that my condition can worsen if I injure my foot/ankle again, or even for no reason at all. I want to keep living my life, even if it means doing less than before. We have a trip planned to meet up with friends in May before my second nerve block. I plan to take my wheelchair in case I need it. I will likely still be using my walker or maybe a cane by then. I know that invisible illnesses can, and often do, draw ire from ignorant people around you that don’t believe there’s something wrong with you unless they can see it. People who only sometimes use a wheelchair or scooter get hate from those who think it’s only permissible to use a wheelchair if you have to use it all the time. Luckily I have been weird and different my whole life so I don’t really care what strangers think. I have accepted that my mobility may be limited for the rest of my life. For as long as I can, I am going to do what I normally do and modify it when needed. 

I know if anyone with CRPS reads this blog, they may be angry that I am sharing my experience even though pain is not my primary symptom. That is understandable. I am constantly thankful that I was diagnosed and received treatment so quickly. That may keep my pain from progressing over time but it may not. I certainly do not want to make it sound like this illness is easily manageable because many people who have it live in constant excruciating pain. Even a soft breeze or a sheet touching the impacted limb can cause extreme pain for those with advanced CRPS. Ultimately this is really just a place for me to put my thoughts and process things. I also want to document my journey so that I can look back and have valuable information, if needed.

So, that’s where I am at. Today is an ok day and we will see about tomorrow when it gets here.

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Finding Empathy for My Body

Newly diagnosed Treatment Journey

Pain Management

Newly diagnosed

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