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 

The Rink

It’s been nearly 4 months since I first started the Gohl Program and underwent Manual Ligament Therapy (MLT) developed by Arik Gohl. You can check out my Case Study Documentation or my uncut documented sessions at Gohl Program TV on YouTube.

I had never skated with my 11 year old grandson. My own son who’ll turn 20 next month has no recollection of ever experiencing anything like that with me. I did take him when he was 2 and his sisters were pre teens, but only I have that memory for him. Ozra was 3 when the injury happened that led to my CRPS. Our girls were 11 and 12.

Night before last we went to pick up our grandson and we went skating. Next time it will be both he and Ozra with our girls, and a few others.

We shared on Facebook Live where I did fall in front of everyone, and I did get back up to try again. Here we are, hand in hand, (Pink blouse up against rail).

I never made it around the rink, but I made it onto the rink several times. I watched as people did all the things I once could also. Speed skate, skate backwards, dance skate. I use to love playing red light green light.

I might not be able to do any of those again, but one day, I will make it around the rink at least once.

No inline skating for me, not now, sometimes you have to start with 4 wheels.

Without MLT this would have never been possible.

 

 

 

 

Making and Breaking Habits

According to Dr. Candace Pert, Ph.D. “our physical body can be changed by the emotions we experience”. http://www.slate.com/blogs/quora/2013/05/06/does_it_really_take_21_days_to_break_a_habit.html
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Image Source: Slate – Quora

Imagine pain accompanied by negative emotions. It’s a vicious cycle. Stress instigates physical pain and physical pain complicates stress.

If we can replace a bad habit with a new good habit and form a parallel pattern that doesn’t trigger stress we can replace and reset our own ability to break or make a habit well.

Physical pain becomes a habit. We didn’t intentionally cause it, yet many other habits aren’t based on intent either they are learned responses, learned helplessness. Behaviors and habits formed by pain can be difficult to overcome.

Habits are much easier to form than they are to break. Repeating any adverse behavior often enough results in a habitual process and synaptic pathways become worn.

Our brains are most adaptive and change is possible.

Twinkle VanFleet, GohlProgram


MLT and Stretching

https://rsdadvisory.com/2017/01/31/mlt-and-stretching/

Babies – Hands on

https://rsdadvisory.com/2017/01/31/babies-hands-on/


21 days to make or break a habit?

Today

http://www.today.com/health/think-itll-take-21-days-make-your-resolution-habit-try-2D11826051

WebMD

http://www.webmd.com/balance/features/3-easy-steps-to-breaking-bad-habits#1

Yahoo Answers

https://answers.yahoo.com/question/index;_ylt=A0SO8wWxvpRY0oIAh0NXNyoA;_ylu=X3oDMTEyYTN1MDl1BGNvbG8DZ3ExBHBvcwMxBHZ0aWQDVUkyQzNfMQRzZWMDc2M-?qid=20080210120707AAquMAY

HOWSTUFFWORKS SCIENCE

http://science.howstuffworks.com/life/inside-the-mind/human-brain/form-a-habit.htm

http://science.howstuffworks.com/life/inside-the-mind/human-brain/form-a-habit1.htm

Quora

http://www.slate.com/blogs/quora/2013/05/06/does_it_really_take_21_days_to_break_a_habit.html

 

 

MLT and Stretching

MLT and Stretching
Animals, house pets, dogs and cats stretch continuously. We watch them as they roll around, stretching to wake, stretching during the day and before they sleep, manipulating their limbs, working out their aches and pains, stressors, assisting their muscles, joints, bones, internal organs.. their tendons to be usable and movable.
In considering our own bodies it would make sense that if we do the same we could minimize pain and weakness in ourselves.
Animals with ailments or who are aging still stretch.
As people, the majority of us don’t. Those with pain related diseases, illnesses or syndromes believe that because of pain they either can’t or shouldn’t.
Imagine what we do to ourselves by not doing so. Imagine that while we think we’re doing ourselves good or better in pain, we aren’t.
As pain worsens and tendons tighten, muscles waste and bones and tissue deteriorate, we deteriorate.
Add emotional trauma, past or present, life, work, day to day activities, triggers, etc and the natural ability to heal ourselves decline.
Nearly all of us are taught to keep our garbage to ourselves, especially, psychological trash. Don’t tell it, don’t talk about it, and don’t bring your negativity on the family. After all, you might become an adverse reflection, yes?
People learn to protect and defend others before themselves.
What happens as a result? Pain.
It’s not just our minds that carry memories, our physical bodies do also. Flesh, organs, tendons, muscles, tissue contain memories and recall of both physical and psychological trauma.
Manual Ligament Therapy (MLT) releases those memories in the body via direct hands-on methods.
Stretching daily activates well being, promoting proper blood flow through the extremities, minimizes or eliminates inflammation, restores healthy cell production. Cells are constantly multiplying. Damaged cells would copy themselves as damaged cells, and healthy cells duplicate to be healthy again.
Only in the most severe cases would the likelihood of cell replenishment be less possible. Generally the abnormal structure of chromosomes themselves dictate a negative outcome.
Even in autoimmunity where the body attacks itself the possibility still exists to change the path inside us. Our bodies “learn” just as our minds do. If it only knows pain, all it might ever know is the same. Reverse it and it might re learn that pain isn’t a lifetime sentence.
Abnormal processing Vs pain perception.
It might not be easy, yet it’s possible.
Imagine what people carry inside them. Once physical pain begins it will resume until the cycle is broken or reversed.
Release physical and emotional trauma and most of us could heal ourselves.
We don’t live in that world yet, but if we could?
Posted as a Note on Facebook January 29, 2017
believe

Learning and Healing

At this time day after tomorrow I’ll have already changed flights to be on my way to my destination. I’m excited to learn and heal even more. This will be the first time since I was 17 that I’ve flown alone. I’ve been on flights since but never without my husband or children. The last Amtrak I was on derailed outside of Fresno California on the way to Corcoran. Initially that trip would have only been Ozra and I. Husband and Kharisma came at the last minute, Rikki was already in Corcoran with my mom and dad. We only sustained cuts and bruises. I can still remember grabbing for my baby as he tumbled and pushing Kharisma into my husband so he could hold onto her. I was the one injured the most but that was a result of my own actions to be sure the 3 of them would be okay. I never feared pain back then. Perhaps because it was acute pain or injury. I think that was mid 1997. My mom and dad were married in 1998 and this was before that. Ozra and I had taken the train several times from Sacramento to Corcoran. I haven’t been on a train since and within 3 years we’d lose our home and everything we worked for in the prior years to a fire, I’d be injured at work and not give birth to our last child due my own body during physical rehab and the medical mistakes and manipulation that followed.

I’m not afraid to fly. I love flying. ~laughs

Ironically the day I leave California, January 8th (2002) is the anniversary of that loss nearly 12 months after that injury that led to CRPS. Maybe I can finally let it go. Maybe.

I didn’t realize until later what the manipulation was all about and that’s why it’s stayed with me. And that’s why I always believed even when my faith was dangling that I wouldn’t hurt hard forever but I’d have to suffer to get there.

I want to help people feel better and find joy and laughter again. I want to be apart of showing others that there is an option for pain relief in MLT and the Gohl Program and I want to be apart of it in person, not solely online. I don’t want to live online. The internet does give a modicum of life back to people who are otherwise unable to have one. I know because I’ve been one of them. The internet also removes in person interaction and that’s why so many of us become isolated and develop social anxiety disorders. I still can’t drive but there may even be possibility in that again.

I have a lot of work to do to reverse 16 years of physical and emotional deterioration. I also know hard isn’t over yet, but it’s the beginning of living something I really don’t know to feel without pain. I’ve used pain as pain relief, a distraction. Pain diverts pain after all.

Looking forward

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Image Source: PJ McClure

 

Gohl Program | Thank you!

Last year, I can barely recall Christmas. There’s a few pieces and parts, some of it I’m blessed to remember other parts I’m blessed that I’ve forgotten or have chose not to remember.

8 weeks ago I was at the Gohl Program‘s healing retreat in Loomis, California. Sacramento to most people. 5 days of Manual Ligament Therapy, also known as MLT. 16 years after the injury that led to the 2003 diagnosis of CRPS type 2 and subsequent diagnosis’  since.

If you follow my story, you might understand. I’m so proud of my babies and our grandson.

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Rikki, Ozra, Kharisma and De’Mantai

This Christmas ..

Thank you Arik Gohl, Dr. Ed Glaser and Monica Depriest.

There wasn’t a cane, or walking stick. No wheel chair, and no laying down in between family affairs of Christmas.

 

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My grandson De’Mantai (‘Tai) and I.

I can’t wait until next year.

x

Christmas 2016

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Christmas 2016- Image Credit- PSDGraphics

The best Christmas I could ever receive is the ability now to use my legs longer, stronger. Longer than just going to the bathroom, more often than just those few minutes at a time. Progress continues. Recovery from pain with the hope to re integrate back into society on a full part time basis. Perhaps one day, full time.Thinking back to the end of August when there really wasn’t any hope left inside me and fear still impacted me greatly. Not because of my legs so much, didn’t think that could be changed as much as it has been, but my spine, neck, arms, my hand(s). How would I do anything losing them? That’s what I had left. In 2013, 4 days after surgery, the second one in a year, I was still trying understand other issues internally. My OBGYN suggested burning the lining off my uterus due to increased thickness. I passed on that and instead chose Nexplanon to control those symptoms. I had it implanted in my left arm so that I could reduce any chance of CRPS spread to my worse side. It worked fairly well until new Ovarian cysts began growing at a rapid rate. I dealt with that with repeated ultra sounds for over half the year in 2015. In 2014 I did though have surgery to replace my internal SCS battery for the next 9 years. Choices. Which was more important. This was. Also in 2015, after a colonoscopy where a polyp was removed from inside there and the diagnosis of Diverticulitis and a few other things, I was suppose to have band ligation surgery to repair those problems. I didn’t have it. I had to have Nexplanon removed due to the cysts. I’ve had ovarian cysts since first discovered during an exploratory laparotomy when I was 22. Not that big of a deal. I did allow that to be recorded and used in teaching hospitals.

I was draining so fast. Physically was one thing already, emotionally became it’s own troublesome dilemma. None of this included family. Husband or children. My husbands recovery from quadruple open heart surgery in December of 2012, or our daughters diagnosis of EHE in 2013 or our sons birth defect diagnosis from Shriners hospital in 2014 or our daughters ongoing appointments at Stanford’s liver transplant clinic, or the other things only a handful of people know at all.

I’ve had 2 documented TBI’s. 1 when I was 17 and the other at the time of the same injury that led to my CRPS diagnosis. In 2013 I was diagnosed by overnight sleep studies with central and obstructive sleep apnea (mixed/complex apnea), cheyne stokes respiration and narcolepsy. I’ve actually had 2 overnight sleep studies and a 2 week at home study using a breathing machine. I was prescribed an ASV unit. Auto Servo Ventilator.

My lower back has been incised twice and my right butt cheek 3 times. Each time over previous incisions. Those things I rarely talk about. Those scars look good though. I sometimes wonder if my belly scar that’s over 25 years old, 10 inches wide or about, torn, and my back scars aren’t contributing to discomfort from scar tissue. Or my belly button due to several laparoscopies over the years and the 4 other tinier scars on my stomach that could be contributing. Maybe not the smaller ones, I have little doubts about my belly and my back because they are front and back to each other. How can anything work right around organs in the space between the scar tissue? I really don’t know. I’ve already had part of my liver removed (2013) and I haven’t had the other lesions on the rest of it checked since. One good thing about the liver is it grows back quickly.

Due to strengthening myself, my internal battery is shifting. It was already fairly low and that’s why I often shift to my left butt cheek when sitting. Otherwise I’m constantly sitting on it. Sore. It’s numb over the scar itself, don’t much feel that, but there’s some intensity outside that area like getting stabbed or socked in the butt all day. I can’t have it checked because I don’t have a provider/physician for my SCS anymore. I have to be careful of abrupt shifting and be mindful not to do anything that will tug the 2 leads on my spine. One of which is center and the other to the right. I also cannot not let it get in the way of healing progress, movement, and all these physical accomplishments.

Earlier this week I took 2 walks 2 days in a row. First time with my daughter Kharisma and grandson De’Mantai. The second time, I was heading off by myself, but took ‘Tai with me. I made it a couple of blocks each way. Without having had MLT (Manual Ligament Therapy) via the Gohl Program, or the custom fit orthotics I might have made that first walk, but wouldn’t have even tried the second. Since summer time, when ‘Tai comes over we do go for a walk. I had already started trying just didn’t get that far. I had to do it around pain being leveled off, not just get up and go. When I had to sit, I’d just plop down on the sidewalk. Ha! Oh and I’m sure my new shoes helped. My feet dislike feeling confined. My toes dislike feeling squished even when they really aren’t.

Yeah it’s good Christmas.

Hoping 2017 becomes a brand new start using all I’ve learned and endured on my path for all the years to come.