CRPS – Time For Action

CRPS – Time For Action

By Ed Coghlan.

November is CRPS Awareness Month.

CRPS/RSD is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States, alone, in any given year. And in all candor, that number may be much higher.

If you or a loved one, have CRPS you know it’s a very difficult disease to manage.

CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.

If you have CRPS, please send us a note ( and share your story.

Quite frankly, diagnosing CRPS is a problem because a lot of doctors think it may be something else or just haven’t been exposed to it to know what to look for.

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is trying to change that. RSDSA provides support, education, and hope to all affected by the pain and disability of CRPS/RSD.

CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization. The National Pain Report’s Katie O’Leary is an example—she was a college athlete who was injured.

Her stories about her journey have been some of our best-read stories on NPR. Here are some examples.

Here are the telltale signs and symptoms of CRPS:

  • 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 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.

As the disease is more accurately predicted, CRPS is projected to be the second-fastest growing application of spinal cord stimulators in the market. In case you’re wondering, failed back surgery syndrome (FBBS) is still the leading reason that people decide on spinal cord stimulation.

A reminder, if you have CRPS and want to leave a comment about what you need to in order to live with the syndrome, let us know.

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Authored by: Ed Coghlan

There are 10 comments for this article
  1. Calypso at 4:11 pm

    I am lucky that my CRPS was DX early by my general physician. Since then I have been in a pain management program. After many nerve blocks, I tried and had a spinal cord stimulator implanted. It reduces the pain, but I still need opioids when it flares up, I was improving and going back to the things I wanted to do. Then comes the “opioid crisis” I am made to feel like a addict, drug seeker, low life, and a bunch of other labels. The new protocol in pain management is “anything but opioids” The pain got so bad this week that I nearly put myself in a head on collision from the exhaustion. I nearly passed out at work twice. My supervisor drove me home and I went to the ER where I was able to get a small amount of percoset. I am having another nerve block next week, which will work for a week or two. Then I will be back at exhausted and in excessive pain. Today I applied for a medical marijuana with the hope that it will help.

    The “opioid crisis” is not with those who use it illegally or mix it with other drugs. The crisis is with those who need it for conditions like CRPS. I agree that the number of deaths from overdose is sad and needs to be addressed, However, I think that those who abuse drugs to the point of overdose will find another drug to use to get high and overdose. In the mean time, those of us who use the drugs responsibly are penalized.

  2. Emily Jelassi at 10:19 am

    Thank you so much for raising awareness of this debilitatingly painful disease! I’ve had CRPS for 5 years now. I was diagnosed by my podiatrist (it’s mainly in my left foot & ankle), about 8 months after my initial injury, so I was lucky there. It still astonishes me that more of the medical community (doctors & nurses) doesn’t know about CRPS! I’m terrified about my future and, honestly, try to not think about it…just puts me into a panic attack. I wish more people knew about CRPS. I do my best to spread the word and explain it to as many people as possible.

  3. Linda at 9:41 am

    Thank you for this. My daughter has been suffering from CRPS since 2012. No medication has ever given her relief, so she chooses to deal with the pain chemically free. This syndrome is a vicious beast that needs to be eradicated.

  4. Barbara at 8:17 am

    Renee Mace. There is a class action suit ongoing. But, only if you are an addict. Unfortunately. You can read it on class action s
    . Com

  5. Sheryl M Donnell at 6:06 pm

    Thank you. This was perfect to share on Facebook to help educate others about CRPS. It is always a challenge trying to find a way to Break it down to a short explanation. Bravo!!

  6. Christina at 5:59 pm

    Hi Ed,
    Thankyou for the information that you pass on. It’s greatly appreciated. I have had RSD for well over 20 yrs now. I do NOT share my story with others bc I personally feel that a lot of ppl are only out there trying to get symptoms….for reasons I can not fathom! I NVR researched RSD , or chat groups until a few yrs ago. Back then anyone you talked to by means of telephone or email was so depressed, i made sure to stay clear of that while i battled my own fears! I doctor at a very well know clinic….and have tried just about every thing. I’ve had spine surgeries, even multiple shunt surgeries bc of producing to much CSF due to the RSD. I’VE spent months hospitalized in out of state hospitals in Neuro ICU unit’s fighting with everything i have to keep going. I have no use of my legs anymore because of this disease, it has completely stripped me of everything I once was…. I have meds and equipment that I take/Need regularly. Wonder how long til its all taken away….just like the “real” me and my life was.

  7. Renee E Mace at 10:51 am

    Did any of you see last night on TLC channel a show called The Healer? It is about a young man named Charlie Goldsmith and last night he healed a lady with CRPS? He is looking for more people with conditions like this. I am trying to get him to see me, I suffer from Central Pain Syndrome, which is very simular to CRPS. Also does anyone know of a class action law suit on under prescribing our life saving pain medications? I for one have been needlessly suffering so much when there is a medication that could make my life a little more bearable.

  8. Terry at 9:44 am

    As usual Ed Coughlin is right on the money. After seeing numerous types of doctors trying to figure out why my entire body hurts so much every day. I finally went to a physiatrist, they’re kind of like an overall diagnostic ion, and before him I had been to my family doctor, a hand and foot specialist, a neurologist, a circulatory doctor, a dermatologist and an infectious disease doctor. The neurologist had her suspicions, thinking that I had an autoimmune disorder caused by multiple injuries and multiple surgeries. It wasn’t until I saw the physiatrist that he confirmed her (guess), diagnosis, the only difference is that he had an actual diagnosis of CRPS/RSD. His recommendation was to find a pain management doctor and see if pain medication would help, sometimes it has little or no affect on the pain until the doses increase over time. So I went to a pain management clinic and started treatment, which at first did no good and I was understandably crushed because he was basically my last chance. He kept increasing my medication and trying different kinds of meds. Finally after 5 long years he prescribed 5, 15 mg. oxycodone immediate release and 3, 40mg. extended release daily. Well that was the magic number and my whole life changed! I started being a high functioning human being again, I could play with my grandson, do yard work, go to family gatherings and be an active participant in the fun, in other words I became “normal” again! My widespread pain was not gone by any means but the meds kept my pain level at a four much of the time, so four became my new zero and I was very content maintaining my pain level there. So now here comes the so called opioid epidemic, my doctor has been lowering my meds at every appointment. Now I am at 4, 10mg percocet and 3, 40mg oxycontin per day. Lowering my prescription is ruining my life, that last decrease hit me hard and now I live at a pain level of 6 or 7, with 8’s and 9’s in between. I take Mobic, an anti-inflammatory, Voltarin gel, arthritis cream, on my hands and feet, and I was taking 2, 650mg arthritis pills. The percocet has 325mg of acetaminophen per pill, that’s 1300 mg per day, plus the arthritis pills is 2600 total mgs of acetaminophen per day, way too much for the liver and kidneys, so I stopped taking the arthritis pills. See the oxy’s have zero mg of acetaminophen, which is why I liked it. My next visit the doc is lowering the 3, 40mg extended release to 3, 20mg extended release, that is going to make me basically a couch potato and ruin my life completely and I’m not exaggeratin even a little bit, it’s the hard truth. It took eight years to get my life back and to participate in it, now I will barely be able to get through a day, I’m depressed, anxious, the pain is so bad I can barely think straight. My story is typical for chronic pain patients unfortunately, we need to band together, fight back for our lives! I received a call from an independent journalist doing a story on chronic pain patients who’s lives are being crushed. He read one of my previous comments on this sight and is doing the story in the Bulletin, an AARP magazine. So don’t give up, somebody is listening!!! We will win this fight because the alternative is a horrible one. So stay strong, tell your story, write you congressmen and senators, educate them. I have written them all four times and received replies twice. So don’t give up, you’re not alone.

  9. heather wolf at 8:23 am

    Hello Ed, Thank you for raising awareness of CRPS. I live with CRPS and am dedicating my life now to curing it. I started Cure CRPS Foundation in order to give patients an industry-independant adovacy network which seeks to find a cure for this terrifying disease. CRPS as a disease state is poorly understood by medical science. I have devoted the last several years to researching it by attending classes at Harvard Extension and by making use of their extraordinary research facilities and libraries where I am able to read the entire scientific studies from journals of medicine from around the whole world. What I have found is that advancement in this disease is painfully slow because the name has changed 66 times since it was first discussed in France in 1872. It was not given a name until 1870 however when a field medic found that gross nerve injury was not healing normally but rather producing burning pain. The disease is known by all different names around the world according to the various disciplines of study. Endocrinologists see it as a kind of autpnomic dysfunction. Neuroscientists see it as simply the ill effects after gross nerve injury to autonomic nerves. Scientists studying pain as a disease state call it a syndrome of unknown etiology. But the science on CRPS emerges largely from post mortem exam where it is clear than sympathetic nerve injury is the defining factor uniting both type 1 and type 2 CRPS. The difference simply being that when a person is alive, the injury to the nerve is not visable because of limitations in diagnostic imaging medicine. So we now are at a point where we need to clearly define the scope of ignorance in order to make advancements toward a cure and prevention. According to a landmark NIH study where Breugh was a study author involving human beings, CRPS is initiatied by trauma to sympathetic nerves. CRPS is the ugly and terrifying result of 13% of all surgeries so the data on who is living with CRPS is wholly inaccurate. I believe, as do any scientists working with CRPS that CRPS is FAR more prevalant than we know. People are just not getting diagnosed. The current diagnostic criteria is wholly ineffectual in actually diagnosing CRPS due to the nature of human physiology. Not all symptoms are presentduring a 10 minute neurological exam. This pinpoints dificiencies in all diagnostic protocols involving neurologic illness which led us to then also develip new procedures protocols and equipment to accurately diagnose neurological disease leveraging current technology.
    CRPS is a great example of what lay at the edge of scientific research. The tools and procedufres used to treat illness needs to start with accurate diagnosis. We need criteria eerging from scientific research which is multidiscuplinary. without it we gain no knowledge and o advancements in science. the current IASP criteria is a product of only pain medicine case study which soley represents palliative care protocols. Not etiology or disease drivers. The nomenclature is more diffuse than once was, “Relex Sympatetic Dystrophy” more closely alligns with the actual nature of the disease systems and state and staging of the disease. Our organization seeks to raise awareness, find a cure and ask the right questions. Patients need to drive research not grants from pharmaseutical companies and insurance companies who have very different interests. We need focused efforts from patients and physicians looking to cure the disease vs make money on illness. And that is exactly what I aim to do. I dontracted CRPS after a botched spinal surgery were the surgeon cut my dorsal root ganglion in my sympathetic system and then sliced into my spinal cord. I live in excruciating pain every moment I breathe and I could not be more closely desireous of a cure than anyone. CRPS is the mountain which noone can see but those of us climbing it.

  10. Barbara at 2:33 am

    Thanks Ed for this article. And the many other ones. Your advocacy has helped oh so many.
    I sprained my wrist falling of my exercise ball. I watched in horror as the redness moved from my right palm to my left one.The one symptom I noticed the most before being diagnosed with CRPS. Was that my pinky toe nail grew very fast . Even told my doctors so. My burning pain is awful. Adding wind/breeze/water doubles my pain. That was 10 years ago. Being on high dose opioids this past year has been a godsend. Most pain is muted except for the burning #FirePalm pain. I have very few bad days now and can do more. Like cooking, cleaning, showering,
    functions, even exercising. Also, I can be a wife again. I consider myself lucky to have this much function. But, I am scared as “HELL” that it will all be taken away from all of us “responsible
    opioid users” we need more people on board with us ! TIME FOR ACTION has come but is not gone !

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