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 (editor@nationalpainreport.com) 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 12 comments for this article
  1. Karen C. at 5:15 am

    Super article, thank you Ed! I have had RSD/CRPS for over 10 years and it is in all four limbs now. I am terrified that it is trying to go full body. I have the telltale scalding pain all the way up both legs to my bottom. I desperately need to find a RSD support group in my area. Can you email me with any information about RSD support groups Ed? Thanks so much and God bless.

  2. James M Thaxton, CST at 3:54 pm

    As others have commentators have given thanks for this post, I too shall send my utmost gratitude…Thank You.

    I was Dx with RSD (stage II)/CRPS during April, this year of 2017. The catalyst for my affliction stems from a “one-off fluke”, acute seizure. It was the night of January 14th, 2017…say 8 PM. I went in my bedroom to ready myself for a shower. That is all I can recall. Apparently, according to my father who came over to my place after my no call no show dinner date with mom and dad.

    By the time he arrived, I was lying on my bedroom floor mumbling that I could not pee. “Dad…I can’t pee. Dad…I can’t pey…mumble, nonsense, mumble……….”. Boom, I went unconscious RIGHT THERE before him. – I will say after deducting a time frame, he said that I’d been laying on the ground for 9-12 hrs. From acute seizure making me fall down, staying there motionless for the duration.

    This event…the catatonic body posture of lying left side down upon the ground for 9hrs minimum, this left me with SEVERE nerve damage. However, at the time I was mentally checked out, so that fact was aloof to me. Besides the nerve dame, which btw I learn the physical trauma details later during a 2 month ICU hospital stay, lying there ALSO caused SEVER rhabdomyolysis (breakdown of muscle tissue by catabolism, or byproducts EATING my muscle). In turn, the rhabdomyolysis, in my body’s effort to rid the physical muscle particulates via the genitourinary system (kidneys, ureters, bladder, urethra – urine excretion), the byproducts of muscle breakdown can wreak havoc on your kidneys. This was my case. I wound up having CRITICAL organ failure…my kidneys were shutting down during a process called, Acute Kidney Injury. Also, I had tubular necrosis, which is the tissue death of a VITAL functioning anatomical structure in the kidneys…the tubules. – BTW, when I mention “critical, and severe” to describe the traumas, I’m directly quoting my hospital records.

    Please, I realize this is a LONG post, but I’ve yet to tell this to anyone in the RSD/CRPS community and I feel it’s beneficial/important that we understand how this condition/disease can be brought on in multitudes of themes and variations. – Also, I’m a medical professional by trade/carreer, so…of COURSE I’m going to totally nerd out on the subject. It’s my nature as a writer/story-teller and science aficionado.

    Trauma Summary: Seizure – leading to embolization for 9-12 hrs, lying on left side of body – Severe Rhabdomyolysis – Crital organ/kidney failure w/ severe nephron tubular necrosis – severe edema in LT leg/foot – extensive nerve damage – unspecified hearing loss bilaterally at 95% for 1 week, reduced to 15% by 2 months – unspecified memory impairment, minimal yet present -inability to plantar or dorsal flex (total FOOT DROP)

    Treatments and Diagnosis/Prognosis: medications from various classes for various body system recoveries. Extensive Diagnostic’s (CT, MRI, Doppler/ULTSD, Nuclear medicine studies, etc), extensive labs daily, Dialysis Treatments (eight…2-3hr dialyzations), surgical dialysis, semi-permanent, port insertion. ——- Prognosis: Severe nerve damage from lower lumbar spine to coccyx, (L5-S1), sciatica and peripheral nerve damage in LT leg to foot…FOLLOW UP w/ Neurosurgeon and Neurologist. – Drop foot LT leg…follow up with Neurosurg and/or surgical podiatrist – Unspecified hearing loss…follow up w/ ENT surgeon/audiologist. – Sever, chronic nonacute pain…follow up with Pain Mngmt, a referral may be needed.

    Ok, now the WHOLE time I was in the hospital, I never ONCE had a Dr, a nurse, a nurses aid, a patient care tech or even the freakin food service personnel say to me…Sir, Yes, about your CONSTANT questions regarding the fact that you can NOT feel your leg and the terrible pain your feeling from that nerve dama via the lengthy immobility you’re experienced. In my opinion, I have to say, I believe you to have something called Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy. All the symptoms you’re experiencing regarding the extreme swelling in your leg/foot, the discoloration between the two legs…your left being redder then the RT, which is pale and I can see the bluish surface veins, whereas on your affected leg I can really not. Your HEARING loss, your memory fog, etc. – Sir, these are classic tell-tale signs. Tell you what, I am going to consult with the doctors you’ve seen so far, the neurosurgeon that ordered your 3 MRI’s, your resident Dr’s while you’ve been here, the nephrologists, the physical therapists. ANYBODY who has a higher education in medicine that has attended to you during your stay in ICU and was UNABLE to tell you what was, or could possibly be wrong with you. I assure you I will have a roundtable discussion on my theory, and we shall see if this consortium can come to agree on my insight.

    NOW, does this make you feel a bit better sir? Does it alleviate a bit of the enigmatic unknowns that plague your tired, fatigued and frustrated collective thoughts? – YES!? GREAT!

    – laugh my ASS OFF – This scenario would have been ideal – The reality is, I WAS seen by all those Drs, and I ALWAYS asked…can you please tell me why you think my LT leg hurts so much and why I can’t move my foot. Why did my hearing go, why can’t I remember things very well? – Alas, they had NO ANSWERS! Hand to your almighty of choice. No word of a lie.

    Fast forward to the Dx, the diagnosis via Pain Managment. – 1st appt. 1hr and 20min visit. When I walked out, after a long interview and THE MOST extensive Phys exam in my LIFE, I was told straight up, with SUCH assertive and confidentness, that it was his belief that I had CRPS. Based on a nerve conduction study I had 2 weeks b4 my 1st PM visit, the report led him to the conclusion, that in fact, I had stage II. – he ALSO went on to talk about getting a genetic marker test for the HLA or Human Leukocyte Antigen. Becuase he also believes it’s POSSIBLE that I am suffering from Ankylosing Spondolysis aka AS. A kind of terrible arthritis of the spine.

    Endnote: – I went to see another PM Dr, to talk about getting various injections into the spine or to see if SCS (spinal cord stimulator) trial would be appropriate. – THIS GUY, an anesthesiologist by trade and pain mgmt Dr by day, says to me….W?THOUT a physical exam of my legs, I had jeans, socks, and shoes on, etc. He says, “NO, you don’t have crips. I’ve seen krips a few times and there is no way. Who told you this. who diagnosed you with that? ( I tell him), OH! I never heard of him, but he sounds like a fraud…..blah blah blah, womp womp womp (charlie browns teacher at this point). *btw, CRPS…he called it “krips”, like he was a frigin gangsta. It was sad and laughable simultaneously.

    Final Thought – As a college graduate who studied medicine, pharmacology, A&P, etc – the whole nine yards. Worked in the field of Surgery for YEARS. Never once did I hear anything about CRPS/RSD. So ok, I’m just one person. However, during my hospital stay, I met and talked to at least 50 Dr’s, nurses, Phys Assis, Nurse Practitioner, etc. NOT ONE mentioned it or even came close to guessing that the symptoms in my LT leg could be linked to a modality that made sense. – GOOGLE IT DOCTORS – They have medical literature IN THE HOSPITAL library archives. COME ON. –

    It is too blatantly obvious and transparent just how LAZY or rather complacent the medical community can become. It sure isn’t like the TV serial “House, M.D.”, where a team is ON THEIR GAME trying to figure out why the HELL your symptoms don’t add up to the conventional norms of basic doctor knowledge.

    Awareness and education. Cohesiveness and comradery. A cannibalistic denaturing of the intellectual EGO has to be put into motion.

    I suffer now, physically and mentally (frustration of my plight), because of what became of my health. It’s been a year now and I see no end to the debilitating nature of this disease/condition. – WE…many/yet few…must STAND TOGETHER in hushed reverberations of intellectual knowlege as we come to find each other. Only to combine our tonalities like a choir, and to eventually RELEASE our voices in a magnanimous chord that shall resonate in all directions. Echoing in the pattern of a rain drop’s ripple upon joining it’s pooled brethren…the pond, the lake…THE OCEAN.

    Maybe then, my unjustified negligence of the medical intelect…shall be rectified.

    Thanks, everyone! Taking time to read a short essay in free form is not always easy, but if you did…I hope at the very least, that the picture I painted…was a good example of what I TRULY believe is important. That is to say, as I mentioned earlier…the fact that YES, our diagnosis is relevant. After all, it’s our glue…isn’t it? Rather the JOURNEY that led us to our afflictions, to me…THIS is the REAL story. The version that I appreciate hearing on someone’s own account.

  3. Calypso at 4:11 pm

    Hello,
    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.

  4. 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.

  5. 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.

  6. 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

  7. 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!!

  8. 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.

  9. 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.

  10. 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.

  11. 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.

  12. 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,
    social
    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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