Sunshine and Nature

I’ve been spending a lot of time outside in the sun in a little kiddie pool soaking up sunshine and nature. I’ve been using my pool to my advantage by doing weightless water movements in order to continue strengthening overall weakness in my body and to keep pain as minimal as I can.

I’m using chia seeds as a holistic and natural approach to pain relief. It’s anti-inflammatory and antioxidant properties have been helpful. I take Magnesium daily also.

I’d cut my internet time down considerably compared to the last several years in order to just take care of me for a little while. I wanted to share love and laugh instead of post only about pain and while it still included it I meant to keep it less than. I wanted to heal myself the best that I could with what I endure because I still don’t have pain management, use any form of pain medication, or receive any other kind of treatments or therapy related to pain.

“Sometimes good things fall apart so better things can fall together.” ~Marilyn Monroe

I wanted to share progress in accomplishments since receiving MLT and from continuing to utilize the techniques that I had learned at the Gohl Program. I wanted for people to know I understood their pain because my own physical problems have been many. I wanted you to know there’s possibility in what we end up believing is impossible.

I didn’t want to feel responsible for things I either couldn’t or didn’t provide other people these last few months or more.

As of last night my Facebook is deactivated again. For how long I’m not certain. Maybe a couple of days, maybe longer. My Stronger Than Pain page should have shifted to my son as the sole administrator.

It’s time to head outside for my daily dose of sunshine and nature.

Stronger Than Pain Cover

 

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MLT Update

It’s been 7 months since I first attended the Gohl Program and approximately 4 months since receiving Manual Ligament Therapy (MLT) the second time. The first time my Complex Regional Pain Syndrome Type 2 was minimized drastically in pain and symptoms. Remission of sorts. I was able to move and stand better. I could bend my toes and come up on my toes. I came home after the 5 days of treatment and utilized the techniques in stretching I had learned from Mr. Arik Gohl. I was able to bend over and touch my toes. I could still come up on my toes with more ease, and I could dance for moments at a time. These weren’t things I could do on the fly at any time of the day, but rather things I could do as I progressed or had an ability to do at any given moment. Or things I was unable to do at any given moment also.

My spinal issues had still been giving me trouble. Pain wasn’t so much in my back other than strain, but in my right arm, hand, fingers. Numbness, tingling, paresthesia. Medical Definition of paresthesia. : a sensation of pricking, tingling, or creeping on the skin having no objective cause and usually associated with injury or irritation of a sensory nerve or nerve root. I wasn’t only experiencing creepy crawlers but intense and moderate to severely painful buzzing that would begin with tightening and pique with an intensity often hard to bear before decreasing. A crippling sensation as my entire arm would lock up for the duration of the symptom. This occurred every few minutes all day and all night long for over a year. I had finally received a cervical injection for C6 and C7 Cervical Radiculopathy. I had the second injection the day before Arik Gohl and Monica Depriest of the Gohl Program picked me up for the healing retreat. I had never met them before.  I had also just learned 2 months prior that my CT results listed lost of disc height, Levoscoliosis, Spondylosis, Osteophytes and other spinal deteriorations. I’ve had bone spurs in my right foot and ankle for many years (2003 MRI), my spine I had no idea. Osteophytes are a bony outgrowth associated with the degeneration of cartilage at joints. I knew I had degenerative disc disease upon an imagining diagnosis in my mid to late 30’s. By January of 2016 I had so much physical pain compiled on me, and without pain related treatment or medications that I failed myself in being able to apply my coping strategies I had learned, wrote about and had shared for others years before. My CT had revealed C4-5-6-7 issues. I’ve known I’ve had Osteo for many years but I didn’t have treatment for it.

There wasn’t anything I could do for myself anymore. In that I mean I couldn’t get pain down enough to even try. I continued to dangle on the edge. I had always been willing to try. I tried so many times over the years for bilateral CRPS.

And then I had MLT.

The therapy literally saved my life.

It brought my pain down so much that I was able to become active in my own healing again. I had no one to rely on in healthcare, nothing to relieve pain, nothing to stop my head from spinning over pain. I lost the ability to survive. I went through motions of living, but I had already died inside.

To this day I haven’t stopped my routines in keeping my flesh, my body from becoming so restricted again. Fascia, all that fibrous tissue, connective tissue, bone pain, crps pain, spinal pain. I’ve kept my own pain levels stable.

Check out all these success stories

Gohl Program TV

Gohl Program Webinar – Chronic Pain

Gohl Program Webinar with Monica Depriest


Twinkle V Case Study Documentation

Twinkle V. – RSD/CRPS, Spinal DJD, Generalized Chronic Pain (Full- before and after treatment sessions)

I can’t even watch those videos because I don’t want to be that person. That’s a lot of pain to see myself in because I know how I really felt arriving there. I don’t even look like that anymore and it only took 7 months. I can’t wait until the 1 year mark which will be on my 49th birthday. I celebrated my 48th while attending the Gohl Program healing retreat in October of 2016. I hope that turning 50 becomes everything (or something) that my 30’s and 40’s should have been.


I know that it’s difficult for some to believe how far I’ve come in such little time. I also had a new injury to my right foot which is a month old today. It did cause a setback in my overall progress yet I retained progress in other areas of my body, mind and spirit during it’s healing time. Even in this injury I didn’t take or have access to any pain medication other than having used the topical Voltaren Gel, Epsom’s soaks and ice. Yes ice! I had not used ice since PT in 2002 for the fairly severe injury in January of 2001 which led to CRPS Type 2/Causalgia. This time began almost immediately desensitizing as not to allow a reversal of progress back to full blown CRPS symptoms. I began wiggling my toes the best that I could again. I’m on my road to recovering that foot once more.

My YouTube videos I’ve chosen intentionally to do raw and real for whatever day it is, moment of the day, pain, progress, humor, sorrow. Same with Facebook videos. There isn’t any reason to disguise myself beyond what I am at that moment.

This year is healing for me. I already dropped out of most advocacy related volunteering and awareness activities toward the end of last year. I’ve remained a Medtronic Patient Ambassador which I’ve been since 2015. I’ve attended training webinars, and I represent and support the Gohl Program.

Aside from these I just want to live, love and remain free right now. Find myself, learn myself, laugh and smile as much as this life can offer. 16 years of nothing but pain, disability, uncertainty, loss, lack of access to care, suffering and suicidal actions changed me.

While living keeps throwing it’s obstacles at me, I’m able to get through them better. Yes there are days movement is harder, of course there are moments when a pain rises for a few. While my Spinal Cord Stimulator leveled my legs out, my upper body had no relief. I lived at a 7 with 8-9’s too often. I fell over the edge at 10.

I haven’t been above a 7 at all. When I have been it was a combination of causing my own acute pain from rebuilding bodily deterioration, or from unrelated belly issues. I’ve held well between 2-5. 5 meaning issues not CRPS and my new injury was decently painful at onset.

Can you imagine living in nothing but physical pain and being able to survive it without medication management for pain? I have. Easy? Not at all. It’s been 15-16 months since I’ve had any. It’s turned out to be so very worth it.

I couldn’t have done this without MLT, Arik Gohl, Dr. Vero Lizarraga, Mr. Warren Gohl, Monica Depriest, Dr. Ed Glaser and the after care tools that I’ve continued to provide myself on a daily basis.

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MLT Revolution – Gohl Program

Why Ligaments? Ligaments, there are over 900 in the body, are very sensitive to all kinds of movement and stresses such as environmental (Gravity), physical, and emotional. In some research studies, ligaments have been shown to have many times more sensitivity than our skin!With this sensitivity, ligaments are able to coordinate all the contractions and de-contractions necessary to provide us with the movements of our body and its systems. When they are stressed through injury at physical or even emotional levels, the ligaments direct our nervous system to contract areas of our bodies to protect the vital organs as well as the site of an injury.This is a great thing in the first few days but unfortunately, because ligaments have very low blood supply, they do not heal well and often remain in a state of stress thereby continuing to tell the nervous system to protect the body. And this is where the not so good things start to compound and our bodies begin to suffer pain, spasm, and even systemic problems as it tries to find balance under stress.Getting to the sourceMLT directly interacts with ligaments in a very gentle and non-invasive way. Using very light finger pressure on certain ligaments throughout the body, MLT is able to correct the cycle of stress and contraction-inducing signals the ligaments are sending to the nervous system. The effect only takes just a few seconds but the outcome can be dramatic. This is because instead of focusing on the muscles which are only doing what the ligaments are influencing, MLT focuses on the source of what the problem was to begin with, the sensitive and influential nature of the ligaments.

MLT Founder

Arik Warren Gohl has been a clinical manual therapist since 1999. In the years since graduating, he has developed numerous clinical practices and curriculums for Physical Therapists, Massage Therapists, and Chiropractors.

In the past 12 years, Arik has become well known for creating a new type of treatment called Manual Ligament Therapy (MLT) and has been endorsed by some of the most respected researchers and doctors in the world, including Dr. Moshe Solomonow PhD and Dr. Edward Glaser, owner of Sole Supports orthotics.

In his time as a therapist, Arik has continued to seek new and more effective ways to treat difficult conditions with an advanced combination of modalities including dynamic stretching, movement re-education, and manual therapies. The end result is his protocols are able to resolve both simple and difficult conditions in a fraction of the time it would normally take in conventional physical rehabilitation.

For this, he has an international reputation as a sought out clinician for those suffering all levels of symptoms, as well as being respected as an educator of advanced subject matter such as neuro-ligament sciences.

Currently Arik owns a Physical Therapy clinic in Guadalajara, Mexico which has become the “go-to” clinic for patients of all varieties as well as some of the best athletes in the country. In addition, Arik has recently teamed up with Dr. Edward Glaser of Sole Supports orthotics to focus on the treatment of the debilitating condition known as Reflex Sympathetic Dystrophy Syndrome (RSDS) with the goal of providing a non-invasive, non-surgical resolution for the disorder.

View Original Source: MLT Revolution – Gohl Program

New Injuries After CRPS

Tonight begins the 3rd day since I re injured my right foot. Any number of reasons could have been the cause. For one, I’ve been somewhat overdoing myself in healing, progress and maintaining pain levels. I refused to miss doing my stretches, or routine, even when I caused myself pain unrelated to any illness or injury. Pain that was a result of not moving or using muscles and bones for too many years. A good pain even if it hurt because no matter it was progress forward. I’ve re injured myself several times over the years and always with the same result in flareups and associated issues. Until the Gohl Program.

Another reason could have been that I’m so tired I was just absent minded to make the step I intended to, another could be I had just gotten off the slider not long before and my back was sore and my knees wobbly. That’s why I left it down in the first place. I wasn’t finished using it. I’m still fairly weak and don’t do big sets at once. I learned my lesson already. Mostly. I mis judged stepping over the bottom metal leg of the machine as I moved toward the doorway and as a result stepped entirely on it with all my weight, left hand grabbing the dresser to keep me from falling, and my foot was still on it. My entire right side was heavy on it.

While both the bottom and top is bruised it’s the bottom that’s worse. When I weight bear the knot on the bottom presses into the ground and the rest of the knot in the center pushes upward through to the top. (insert potty mouth words) but I’m still walking on it.

Normally people with RSD or CRPS wouldn’t use ice. I did. I’m getting rid of my worries and hurts and I can’t let using an ice pack be one of them. Not at this point. I didn’t have any adverse reactions. I did put a dry wash cloth between it and my skin. Voila! No problem.

Bending my toes isn’t happening right now. I’ve manually bent them. You know like how the 5 little piggies went to the market. Anyway, I’m not kidding.

I sometimes miss that quarter beat. In other words, I’ve never been a whole note. Ha!

Of course it’s something that’s a total bummer. Especially after having worked so hard these last 6 months.

It’s going to be most interesting to find out how long it takes to recover and be standing on my toes again.

As it heals from where it is now, I’ll keep working with my upper body and spine. Once the bruising and swelling comes down I’ll know better how much of a setback it may have caused. I do have a soft back support brace on now and it’s only so that my spine doesn’t shift as I’m unable to walk right. I’m minimizing anything that can get in my way of continued healing and anything that can cause the injury to want to get out of line.

I’ve come way too far and fairly fast after 16 years to fall behind now. I can’t stop, I’m obsessed, or maybe possessed. Both?

I helped my husband carry in bags from the car today when he asked for my help. That could go 2 ways. Either why would he even have asked knowing I hurt myself or I could be glad I got myself up to do it even so. I could have said no? I’ll stick with being glad.

I’ll re ice again today. Yep, I’m starting over it a way, but I’m not starting all over from last year. That foot has had tendons and ligaments torn off bones, chip fractures, entrapment’s, surgeries, scars, dings and much more. CRPS, Achilles tendinitis, arthritis, osteo, heel spurs, plantar fasciitis, etc and so forth.

Looking forward to learning how fast I can reverse and heal from another new injury to a CRPS extremity using post MLT routines.
I’m keeping a log and photos. I’ll share any delays or progress.

All I need to know now is who has the voodoo doll?

220px-Poupée_vaudou - image source- wikipedia

Fine Lines

There can be such fine lines between doing and not doing, trying and not trying enough, managing time and wasting it, finding balance and not balancing at all.

I’ve driven now twice since not having drove but a handful of times in 17 years. While both times were only a few blocks away it is a starting point. Next time I’ll turn left and go down farther to the shopping center about a mile from home. Most likely repeating that quite a few times before trying further.

I’ve hit a few lows in wondering if all this is just too good to be true. This is because in order to maintain pain relief from the original CRPS Type 2 diagnosis and the several secondaries along the way, I have to do physical routines daily in order to keep it from ever being what it had become. These routines can cause their own pain because of the lack of activity and movement as a result of the injuries and illnesses that either initially or had eventually overcame me. Many of those things that I did to comfort myself from reaching the edge were some of the same things that were to my own detriment. Hanging my legs off the bed in order to try to sleep because my feet and legs were either too swollen, allodynia, hyperalgesia, burning etc. Using pillows, several, in order to prop myself into positions to ease pain, but at the same time it taught my body to develop even more damage.

Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better. ~Samuel Beckett

We aren’t taught how to be able to care for ourselves in simple manners that are the greatest of all. We’re told go exercise, lose weight, quit smoking (if you do) and that’s about it anymore. Great advice, but it’s only advice. There isn’t any teaching in it and people leave still wondering how, how in all of it. If you have chronic pain of any type it’s because something in you, illness or injury has lasted beyond 3 months (used to be 6 months for that classification).

Some people do get the pain medications, the opioid management, pain management, lumbar or cervical block injections, procedures etc. Yet none of these get people healthier again. None of them teach living with pain. They either disguise pain awhile, fail, or side track a person from learning how to themselves. Other medications such as SSNRI’s and Anti Seizures such as Cymbalta and Neurontin are over prescribe, handed out like candy and more adverse than the opioid itself. I promise you that. Opioids taken responsibly is less a problem than the lifetime problem that stays with you long after getting off those other types. We may have natural opioid receptors in our brains, but our brains (and minds) aren’t meant to be altered to the point future damage.

I’m not anti opioid.  I’m anti leave someone where they are when there are other options in relief that aren’t suggested or believed in by mainstream western medicine. I believe in CAM or Complimentary and Alternative Medicine. I believe in the Gohl Program. I believe in Integrative Pain Medicine.

Yet these services are rarely offered, or are not covered by insurance. I myself was denied for Acupuncture my second year into all this. (2003). I could have been cured, or in remission right away, but instead we keep people bouncing the healthcare systems, costing billions, left disabled, unable to contribute to society, getting sicker when we have the capability to get people back into their lives. If we do, even more billions are lost in profits, revenues and work for the working class. Damned if you do, damned if you don’t and that’s the world we live in. If it’s not about me it’s about you. Will it ever be about us? I already know the answer to that.

I’m glad that The Academy of Integrative Pain Management previously The American Academy of Pain Management has merged the concept of healing by both standards of care. I’m thrilled to have been a State Pain Policy Advocacy Network Leader (SPPAN) which is a project of of the AIPM/AAPM for several years. I’m happy to have been former California Ambassador, Executive Board Member, Advocacy Director and Healthcare advisor for the International Pain Foundation 2011-November 2016. I’m happy to still be a Medtronic Patient Ambassador. I’m glad to have represented iPain as a member of the Opioid Prescribing Taskforce via the Medical Board of California and for being 1 of perhaps 3 patient advocates who were apart of the Revised Standard Guidelines for Prescribing Controlled Substances For Pain. I’m happy that I attended with and testified on behalf of pain patients with the California Medical Association (DeSaulnier)

I’m not happy that I fell hard in the midst of the CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016 as they were being implemented, recommended and circulated. The Guidelines for Prescribing Opioids for Chronic Pain CDC. I’m blessed to be part of the public record, written and on the last call pertaining to the Guidelines. The call that determined whether or not to enact the recommendation. Which had been determined before the call had ended in case you didn’t know.

Instead of saving lives and allowing physician’s to care for their patients under their own oath it instilled fear in providers to prescribe or even address pain at all. I do not care that the Guideline’s were meant for primary care doctors because it caused fear for all doctors including pain management specialists.

I have to be a responsible patient, yes? I have to be in compliance, yes? Yet there is little to no responsibility or consequences for non compliance in others or those who believe they are above anyone else. Everybody’s pain day will come, if even by old age alone.

I’ve lost my reputation online, but offline my words are different. I’m different. This doesn’t mean I’m a different person it means that perceived perception, written content and context is taken as you will. Believed or Imagined. Generally just a fantasy in your own minds.

I’m diverse.

Online I no longer care. I’m both polite, knowledgeable, caring and I’m blunt, potty mouthed and adverse. Yesterday was the 1 year anniversary to the second time I attempted suicide as a result of pain and errors and not just my fear in it all, but the fear in overdose, the fear to prescribe, the fear to keep your medical licenses, the fear of the DEA, the fear of scrutiny, the fear to take care of your own families and I actually understand. I actually feel your side of it. I feel you when you’ll do almost anything to maintain your reputation even if you’ll lie to do it.

When you can feel my husband of 31 years side of it, or my 3 children’s broken heart in it.

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Maybe I’ll care again the same way I used to. Though I hope not because I really cared too much about everyone else, what ever one else needed, or wanted. Right now it’s all about me and overcoming the challenges of living through what I can’t ever change for me in this lifetime, or what I can never take back in the option of suicide, but I can still help change it for others.

They are fine lines, after all.

 

 

 

 

 

 

 

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.