Nerve Pain Is Hard to Explain

Published on November 10, 2020 under RSDS General Info

Written by Heather Maerten for the RSDSA blog. 

My name is Heather Maerten and I’m a mother of three and a pediatric nurse.

How and when did you develop CRPS/RSD?

In August of 2015, I was working as a nurse in emergency transport for Children’s Hospital of Philadelphia. During a call, I rolled my ankle coming off the helicopter. I went to urgent care after my shift and was diagnosed with a sprain after the s-ray was misread (my talus bone in my ankle was actually fractured). From August to April, I saw multiple doctors and completed six weeks of physical therapy on a broken bone, unknowingly. In April, I met with a specialist and after multiple images it was determined my talus was broken, a ligament was shredded, and both tendons were torn. I had surgery in June which included a fibular groove deepening. During the surgery, my sural nerve (a sympathetic nerve) was accidentally cut through but the surgeon failed to inform me with the thoughts that it “would get better.”

That is the moment I developed RSD/CRPS, the moment my life changed forever.  

What has daily life been like since your diagnosis?

The first few days post op were horrible.  I cried, took pain medicine, slept and cried some more. My foot and leg felt as if they were being strangled but the doctors did not seem to understand. I was told it was a painful surgery, given more pain meds and sent on my way multiple times. Weeks went by and the pain progressively got worse: pins and needles, burning sensation, color and temperature changes, and atrophy. I had no choice but to go back to work as I am a single mom. I had to take a light duty job for the first time inmy life and it was extremely disheartening.  As the months passed, the nerve damage spread up my leg. I went to numerous pain specialists and underwent multiple nerve blocks (spinal, epidural and sural) over the next year. I was literally exhausted from being in pain every day. The thought of having to wake up day after day in pain made me feel hopeless. My kids would ask me almost daily “are the doctors going to fix you yet?” I tried my best to cover up what I was dealing with but they knew.

Heather and her three children

Nerve pain is hard to explain. It is like pins and needles times one thousand 24/7. It’s like coming inside after being out in the snow when you were little and experiencing that burning/re-warming feeling 24/7. It’s the feeling of having rubber bands cutting off circulation 24/7. It’s exhausting and it’s exhausting being exhausted 24/7. 

There was a point in time I made the decision with myself that I wanted to have my leg amputated. In my mind I was willing to lose my leg to get rid of the pain. I even had a meeting with my doctor and brought my family and begged him to amputate but he would not. Apparently that would not help the nerve pain and only make it worse.

What advice would you give to newly diagnosed Warriors?

Do not give up! If one doctor does not listen or understand, go to a second. If thirteen doctors do not listen, go to the fourteenth. Do your own research and listen to your body! 

After doing my own research I found an RSD specialist in my area. His name is Dr. Philip Getson. He was the first doctor to tell me I had RSD and basically inform me of my options. Unfortunately, I am in that 20% whose RSD spreads so my options were slim.

What activities or treatments have helped you find temporary or long term relief?

X-ray with a back stimulator

X-ray with Heather’s back stimulator

After many discussions with Dr. Getson, I chose to have a DRG spinal cord stimulator implanted. I was referred to Abbott and an amazing doctor, Dr. Sean Li. 

After a successful trial, I had the stimulator implanted June 2017.  It has completely changed my life.  My nerves and pain are now controlled. Although I still have work to do with this leg, I feel great! Since the stimulator was implanted, I have gone back to working my 12 hour shifts as a nurse, I coached my sons baseball team, and I run around with the three kids sometimes forgetting I even have RSD. There are days that are worse than others but the good days far exceed the bad days now!

What is one thing you wish those without CRPS/RSD could understand?

When I would go to doctor’s appointments and try to explain the pain and frustrations, I would often hear “well you look great, just keep doing what you are doing.” The biggest misconception one can have is thinking that just because someone looks great means they feel great. Just because I tried to hide my pain and actually get dressed and do my hair and throw a little mascara on does not mean I felt great. Just because I looked great does not mean my body was not screaming for help.

Side-by-side of foot before spinal cord stimulator and after

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

RSD continues to be studied and is becoming more recognized in the medical field. With more knowledge comes more treatments and the possibility of a cure.

Anything else you would like to add?

I hope that each and every one of you warriors can find something that provides relief! Do not give up! You are a warrior for a reason!

Reach out to Heather on Instagram or via email.

Please consider making a donation to RSDSA today!


  1. Susan Preciose

    @ Jan Poole,
    For me @18 years only opioids have had me functional, I’ve been cut like most!! Just infuriates me!!! I’m in so much pain last few months, I literally can’t live!! I go to bed in. Sleep then painsomia, daytime horrible burning , freezing, joints hurts, now the trigger finger is locking down 3 years after carpal tunnel surgery, 50%, mostly women end up with this as a result.. stim no room 11 surgeries there.. idk, but again can’t take, gabapentin, lyrica, cymbolta. List goes on and on,, opioids work?? I Dnt get high, I just function, amitriptelene works too!! Not too
    Much else,, what. Can we do!! I can’t live like this much longer!!

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  3. Jan Poole

    I’m a person with CRPS 22 years from a crush injury to both feet and legs. I want to mention some things helpful for CRPS.

    As most of us know, OPIOIDS are the most effective treatment for nerve pain, but there are so many lies being spread about them. Google: The Lawhern FILES-FACE FACTS. Opioids in 3 charts. Less than 1.6% of pain patients ever become addicted!! Our pain signals interfere with the production of the feel-good neurotransmitter Dopamine. It’s next to impossible to find a physician to prescribe opioids because it’s the DEA’s new cash cow. I can’t go into all of this now, except to say that I, along with all of the pain patients I blog with have never gotten “high,”!

    I hear some CRPS patients find great relief from having Dorsal Root Ganglion Spinal Cord Stimulator operation. Find someone who has done this over and over.

    I discovered NERVE DECOMPRESSION SURGERY which is 80-85% effective the earlier you do it. There are only 4-5 surgeons in the US who do this. Check THE DELLON INSTITUTE (Dr. Dellon pioneered these surgeries). Also Dr. Timothy Tollestrup in Henderson NV. Plus Dr. Robert Hagan in St. Louis, and Dr. Demetrio Águila in Nebraska. A LOT OF TIMES CRPS is NEUROPATHY which is relieved by nerve decompression surgery. I went to Dr. Tollestrup who gave me the most thorough exam I’ve ever had and diagnosed my CRPS as TARSAL TUNNEL SYNDROME. He Decompressed the Tibial nerves in my ankles, and I go back in April to have the 3 PERONEAL NERVES (common, superficial and deep) Decompressed for my calf pain, tingling and numbness.

    I cannot tolerate the side effects of gabapentin. So as others have said, there are also ketamine (can cause hallucinations), CARE THERAPY (SCRAMBLE), AND that’s about all I have heard of.

    I hope some of all of this helps someone.

    1. Deborah J Gallien

      PLEASE, What kind of side effects dod you have with gabapenten, I to feel like i am having more pain while taking it…like pins and needles, ect…hard to explain bc of RSDS total body for 34 years, I thank you for your response, Deborah Gallien 303-521-2927


    When the sensory system is impacted by injury or disease, the nerves within that system cannot work to transmit sensation to the brain. This often leads to a sense of numbness or lack of sensation.
    Neuropathic pain is caused by damage or injury to the nerves that transfer information between the brain and spinal cord from the skin, muscles, and other parts of the body.
    The pain is usually described as a burning sensation and affected areas are often sensitive to the touch.
    Symptoms of neuropathic pain may also include excruciating pain, pins and needles, difficulty correctly sensing temperatures, and numbness.
    In this article, we discuss Neuropathic pain treatment. We also explore how these are identified and the best way of Neuropathic pain relief.
    This pain occurs in about 1 in every 10 adults over age 30. The prevalence rate and people identified varied depending on the method of identification of neuropathic pain.
    The signs of nerve damage include the following: Numbness or tingling in the hands and feet. Feeling like you’re wearing a tight glove or sock. Muscle weakness, especially in your arms or legs.
    Neuropathic pain is associated with impaired quality of life and is often poorly managed. A quarter of people with diabetes and 35% of people with HIV have neuropathic pain.
    Neuropathy or Neuropathic pain is a chronic condition, meaning it does not go away. Instead, pain becomes the disease process.


  5. Michael Lawrence

    I am a recently diagnosed patient with Chronic Regional Pain Syndrome. I am currently being treated within a pain/physical therapy facility. My CRPS started when I fell on my left foot, then 6 weeks later had surgery for a Hip replacement, and Tendon Reattached. After surgery, my foot pain became worse, and after being told this was “normal” for hip surgery, I was convinced otherwise. My nerve specialist thought I had blocked veins, but ultrasound testing proved otherwise. My PT person recognized the symptom and now I am properly being treated.

    1. Jan Poole

      How ARE you being treated? I’ve had CRPS 22 years and treated with Fentanyl patches after having horrific side effects from Lyrica/Gabapentin, and failed spinal cord stimulator!

      What works for you?

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