Advocacy and Awareness: CRPS

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Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1. 

The McGill Pain Questionnaire 

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index 

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.
This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.
This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.
Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.
Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.
This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.
According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html
This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.
I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.
I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.
I think I’ve proven that.
~Twinkle VanFleet, GohlProgram.com 
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Prescription drug abuse versus chronic pain care

RSD(S)CRPSAdvisoryLogoPrescription drug abuse versus chronic pain care continues to be a hot topic.  In a previous post How should U.S. regulate powerful pain killers? American Academy of Pain Management’s Executive Director, Bob Twillman, PhD discusses opioid prescribing and regulations with Dr. Andrew Kolodny, Director of Physicians for Responsible Opioid Prescribing on PBS’s Newshour.  Dr. Kolodny acknowledges Chronic Pain is a serious problem. He adds “But, unfortunately, we are harming far more people with chronic pain than we’re helping when we treat them with long-term opioid medications”.

He doesn’t believe long term use of opioids should be prescribed to those with low back pain, Fibromyalgia and chronic headaches.  He goes on to discuss what many of us believe in that there is a separate population in the drug abuse epidemic and chronic pain person.

I do believe there is an overlap in some patients. I do not believe all patients should be classified in the overlap scenario. I do know that opioid induced hyperalgesia can occur from long term use, but usually when the medication is increased for not controlling pain. I also know people who have experienced it who have taken it as prescribed long term.

Harming which ones? All of them? Some of us? One or two? Consider another possible epidemic by the refusal, discontinuation, denials, and/or delays of needed medication, suicide. Patients are becoming pre disposed to emotions and actions they would have never felt or done otherwise.

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Sadly, many overdoses are from abusing, mixing with alcohol, illicit street drugs, changing the Rx and simply not thinking. No one wants to be accountable instead just bounce the blame.

In a recent publication, The Unintended Side Effects of Fighting Prescription Drug Abuse, an op-ed piece published January 8th, 2015 on the California Progress Report, I shared a bit of me and spoke on the importance and options of Abuse Deterrent Formulations (ADF) while also showing that there are some people whose quality of life depends on an opioid medication.

It seems my article has come under some scrutiny by opposer’s of opioid prescribing.  I am heading into my 15 year with the diagnosis of CRPS /Causalgia type 2 with confirmed nerve damage. Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy are other names. A neurological, neuropathic autoimmune disease which causes a malfunction in the Sympathetic Nervous System commonly known as Fight or Flight. Now referred to as Fight, Flight,or Freeze)  (1 of 2 parts of the Autonomic Nervous System), Autonomic Nervous System ANS (Sympathetic SNS and Para-Sympathetic PNS). All of which reside within the Central Nervous System CNS. RSD/CRPS described by the National Institute of Neurological Disorders and Stroke in 2001 and also at the National Institute of Neurological Disorders and Stroke we know more. While it’s rated 42/50 on the McGill pain index, I use all the additional tools I’ve learned over the years. Meditation, bio feedback, deep breathing, imagery, guided imagery, distraction, pacing activities, relaxation techniques, progressive muscle relaxation audios, hearts house and various other modalities to help ease my own pain.

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I’ve had a Permanent Spinal Cord Stimulator implant since 2006.  I am on one low dose narcotic.  The lowest dose for it’s type.  My other medications do not apply.

I’ve been a part of the California Medical Board’s Prescribing Task Force in Sacramento California since it was formed.  I do not advocate for or endorse any opioid analgesic.  I gave testimony for Senate Public Safety on SB 1258 (DeSaulnier) April 29, 2014.

I agree there is a problem.  I appreciate the passion in those who are advocating for change in over prescribing, abuse, misuse and diversion. I too have the same goal, but not an agenda at the risk of cutting patients off medication. Try to appreciate my passion in the fact that many chronic pain patients are being depraved proper pain care due to the “epidemic”.  One second I hear certain Workers Compensation posters complain about Lidoderm being prescribed to pain patients stating that it’s intent is for Shingles. True, but let me clear something up for that poster, “Post Shingle Pain”. One cannot use it during and until any open wounds or blistering heals. LIDODERM® (lidocaine patch 5%) is used to relieve the pain of post-herpetic neuralgia, also referred to as after-shingles pain. Apply only to intact skin with no blisters.

Lidoderm, seriously? Weren’t we just talking about opioids? The reason I mentioned this is because the same page that complained.. also complained about opiods with the WC treated patient.

Tell me what you want, what you really really want! In other words, a narcotic or a lidoderm patch. Hm…    sheesh.

I agree that patients should be assessed accordingly. Patient Evaluation and Risk Stratification should be utilized to mitigate potential risks. I’ve been with the same doctor since 2004, I use the same pharmacy.  I’m randomly drug tested for my prescription medications and for those not prescribed, illegal ones.

The overlap is partial.  Drug abuse and pain care do not overlap entirely. There is a difference between dependency and addiction.

Dependency, (Psychol) over reliance by a person on another person or on a drug,

Addiction, the state of being enslaved to a habit or practice or to something that is psychologically or physically habit-forming, as narcotics, to such an extent that its cessation causes severe trauma. The condition of being abnormally dependent on some habit, esp compulsive dependency on narcotic drugs. Habitual psychological and physiological dependence on a substance or practice beyond one’s voluntary control. A physical or psychological need for a habit-forming substance, such as a drug or alcohol. In physical addiction, the body adapts to the substance being used and gradually requires increased amounts to reproduce the effects originally produced by smaller doses.

Addiction is when you want and crave the drug so bad your body has to have it, some will lie, steal and search until they get their fix.

I’ll use myself as an example, dependent, yes. I rely on it to ease pain that is often so unbearable most of you would have no idea.  Unrelenting, constant… all day, all night.

So lets take a look

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The above photo is 6 years after the injury that led to my diagnosis.  Can you possibly imagine walking on that? This photo includes swelling, blood vessel constriction, discoloration and the burning pain while internal became exterior to the point of simulating actual burns. I cycle through my symptoms which include burning, ice fire, discoloration, temperature changes to the extremity, hair and nail changes, sensory and motor difficulties, atrophy is apparent when swelling has eased.  These cycles occur daily. I’m sensitive to loud sounds, my skin is hyper sensitive. Clothing hurts. I’m unable to drive and have to rely on 3 people to get me anywhere. Allodynia and hyperalgesia are present. Bones have wasted away in addition to muscle. You can feel it. Increases in barometric pressure causes flare-ups. Now imagine that throughout your body.  Several secondary diagnosis’ that I will not discuss at this time.

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These photos include atrophy when swelling reduces to bone. Try putting a shoe on that or trying to be a productive member of society. Chronic pain patients already have a negative stigma of being whiners, complainer’s and drug seekers.  None of what I’ve written includes the back pain caused by the same injury, or the hard landing of my head on concrete flooring. I won’t even go into secondary depression due to the loss.  Lose what you wonder? All that you might have been! I volunteer 1-4 hours a week. That’s what my life is. We are all different.

Taking medication as prescribed, not sooner, not later, not double dipping makes up half the difference here.

For more information visit- The Neuropathy Action Foundation

Current photos. Left 3 weeks old. The right 5 weeks.

 

 

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We should be working together to bring a sound solution to this ongoing topic while keeping in mind,.. It really hurts to hurt!  Ask yourselves this, what if we were you. What if you were one of us?!

First it was the patients abusing the drugs, now it’s the physician’s fault for prescribing them. I can’t wait to find out whose fault it is next.

 

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Would you trade places with me?

Nope, you’d most likely beg for pain relief in the form of an opioid.

So let’s be easy on each other.

I wish you pain eased days and nights,

Twinkle VanFleet, Advocacy Director/Board Member Power of Pain Foundation