Pain Education

Introducing Stronger Than Pain as an upcoming NPO for Suicide Prevention and Relief

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On June 7th 2017, my son announced that together we’ve began the process of becoming a non profit organization. Our mission is suicide prevention and relief, techniques, support and services with mental health awareness at the heart of our reasoning.

After a considerable amount of discussion, I have opted to begin the process of starting a 501(C)(3) Non-Profit Organization with the help of my mother Twinkle Our mission will be suicide prevention and relief along with mental health awareness. We have begun the process of filing paperwork with state and federal. We lose over 40,000 people a year from suicide, over 5,000 of those are Veterans, over 250 are First Responders, and our goal is to help lower that number. Please like our Facebook page StrongerThanPain as we are currently working on building our website. Please email Info@StrongerThanPain.Org for any inquires.

While I chose not to form an NPO for chronic pain and RSD/CRPS over the years because I appreciated being apart of others as a volunteer, I’ve opted to do so with my son.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson

Mental health is at the core of every physical ailment and physical decline, illness and disability becomes a hardship to mental stability.

Suicidal ideations, attempted suicide and suicides themselves affect our soldiers, first responders, physicians, chronic pain patients, at risk youth, LGBT-Q, all of us.

We want to help you believe that who you are is enough, what you do is enough, we want you to know that you’re loved and appreciated and we want to help you either stay or become stronger than pain.

We want to assist you in healing your body, mind and spirit. We want to help you overcome not just emotions but obstacles too.

As we build our brand and develop our website, we’d like to invite you to like Stronger Than Pain on Facebook.

Follow us on Twitter

Or Email with any inquiries, suggestions or for interest in joining us at: info@strongerthanpain.org

Every donation counts toward helping us help you, every like is worth just as much.

http://strongerthanpain.org/donatenow/

We’re proceeding through the proper steps and our initial paper work is currently being processed for filing with state and federal agencies to obtain our status.

While our website is currently under construction and we’ve only just begun we want you know that we have.

Stronger Than Pain Logo

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 

Highs and Lows

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I reactivated Facebook and my posts were all positive highs. My lows would come eventually and they did. 4 days ago I began weaning myself from the 30 of Cymbalta to 15, I had already reduced from 60 to 30. I’ll never know until I’m completely off of it again if my choice to do so can be a positive outcome. After more than a half dozen times in less than 2 years of abrupt discontinuation and what the brain itself goes through just to get through it, I have no idea if I’ll ever be what I was before ever starting it over a decade ago. Perhaps I should not have allowed anyone to put me back on it for nerve damage/depression after I was off it for nearly 6 months in 2016. Cymbalta is a Selective Serotonin Norepinephrine Reuptake Inhibitor.

https://www.drugs.com/cymbalta.html

http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm150748.htm

When we consider that the chemicals in our brains are altered by the use of these medications, common sense dictates an effect, adverse or otherwise, when removing them from our bodies. The natural chemicals have to work again, or not. It’s not so simple, but it’s understood.

My husband has been in failing health for years. Finally, I think he’s taken to heart the importance of what he can do for himself with or without myself to prevent further illness and even restore that which has already declined.

Sometimes it’s takes doing something profound to make a profound difference. ~Twinkle EKV

Don’t worry my friends it may seem like something is wrong but on the contrary everything is quite right or where it should be right now.

I promised my kids that if I ever felt like going where I had before, I’d do one thing. I did. I kept that promise and they kept theirs. That’s reestablishing trust and commitment.

I’m a little too smart, and a little too dumb to let an opportunity to help someone else pass us by. That’s okay because I love being both.

If I stopped talking about it all the purpose in the purpose itself would fade. That would mean that there would be no impact to make to show people they can physically heal, and when they heal, those emotions can also.

Somebody asked me if I still have a job..

Yes I do,

Until I don’t.

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Image Source: Manifestation Divine

Babies – Hands on.

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Imagine new born babies, when they cry, we soothe them. We massage their tiny bodies with our hands and comfort them. Most of them stop crying. This is an example of direct hands on therapy. Imagine what the baby would do if not soothed, rubbed down, comforted physically. They would remain in pain and as time moved forward they would not know to feel anything else.

comforted-babies

It’s not so hard to see that physical ease also releases emotional pain. A crying baby is experiencing both simultaneously.

Imagine aches and pains that aren’t associated with chronic illness and what people experience in body already.

Chronic pain becomes seemingly unmanageable because inflammation itself continues on until it’s eased and it attacks everything else our bodies are.

We can prevent those domino effects that occur as a result of an original illness or injury.

We’re prescribed pain medications to assist a health related quality of life (HRQol). We’re implanted with technology to relieve pain in order to establish this QoL. This is what these are for. If we take the medication or use the devices, we’re supposed to be using them for our benefit, well being, not just taking them or having them to continue to waste away.

Understand?

GohlProgram.com

MLT and Stretching

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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?
~Twinkle VanFleet, GohlProgram.com
Posted as a Note on Facebook January 29, 2017
believe

Review – Gohl Program | Part 3

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Review – Gohl Program | Part 3

By Twinkle VanFleet

its-time-to-heal-by-kori-leigh

It’s time to heal by Kori Leigh

It’s important to understand that MLT isn’t a magic pill we get to swallow and become miraculously cured by. It’s the beginning of curing ourselves. Cure in medicine is defined as:

cure (kyur)
n.

  1. Restoration of health; recovery from disease.
  2. A method or course of treatment used to restore health.
  3. An agent that restores health; a remedy.
  4. cured , cur·ing , cures
  5. To restore a person to health.
  6. To effect a recovery from a disease or disorder.

Remission in Medicine is defined as:

remission re·mis·sion (rĭ-mĭsh’ən)
n.

  1. Abatement or subsiding of the symptoms of a disease.
  2. The period during which the symptoms of a disease abate or subside.

It’s not really difficult to understand that a cure is just as possible as remission can be. How? The answer is simply by restoring a person to health.

“Manual Ligament Therapy (MLT) is a new and original technique created by Arik Gohl. … We have learned that ligaments are a significant source of pain, especially in cases of chronic pain. Until injured ligaments can heal from their underlying dysfunction, muscles will remain in a tense and guarded state.”

I know what you’re thinking. If you have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome that you’ll forever live a life of pain with potential spreading from the original site of injury to the rest of your body.

It can be true, but it doesn’t have to be. All of those symptoms, burning, allodynia (pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain; also :  a condition marked by allodynia) hyperalgesia (increased sensitivity to pain or enhanced intensity of pain sensation), hyperesthesia (unusual or pathological sensitivity of the skin or of a particular sense)

I really don’t have either of the above anymore. My body is still learning not to feel sensations of pain while also recognizing those areas that aren’t hurting.  If anything its just hyperesthesia I’m working through. Example, sock me and I’ll feel that sensation long after the actual event. Like a repetitive action.

Keep in mind after years of pain, signals misfiring, injuries taking on abnormal healing paths, other areas of my body becoming effected beyond the site of the original injury that I have a main role to play in reversing these abnormalities. I have to reset my perception to pain by reversing all that my body knows, felt, and has learned as a result.

5 days of Manual Ligament Therapy has gotten me to this point. The custom orthotics is correcting every abnormal step I’ve taken since January of 2001.

You might be thinking manual? Yes, you’ll have to be touched, and you’ll have to move areas you’ve stopped using due to RSD/CRPS, chronic pain. This isn’t traditional physical therapy, you’ll actually feel restricted tissue, muscles, and a myofascial release of those symptoms and connective fibrous tissue eased.

What about burning which is the hallmark symptom of RSD? It’s eased the same way.

Currently MLT isn’t a covered therapy under insurance. Like many other integrative, complimentary, or holistic practices, including acupuncture, acupressure and similar therapies which may be beneficial we’re still legislatively working on these options for you.

MLT is non-invasive.

Another healing retreat will be held at the Sheraton Los Angeles International Airport beginning Monday, November 28, 2016. http://www.sheratonlax.com/

The cost for the treatment is $2,500 and doesn’t include travel or hotel. I know it sounds like a lot, but it’s not compared to a single injection or invasive procedure billed to insurance or accumulative and yearly co-pays.  For more information please contact Monica Depriest: Monica@gohlprogram.com

I’ll be present also to follow-up on my own therapy.

So with that I look forward to meeting you and hope that you’ll give yourself the opportunity to feel better. Sometimes it takes pain to get rid of it. It’s a process of not only healing but believing in yourselves enough to understand that’s it’s possible rather than impossible and pain being the rest of your lives.

To be continued…

Review – Gohl Program 

By Twinkle VanFleet

Part 1 – https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/

Part 2 – https://rsdadvisory.com/2016/11/06/review-gohl-program-part-2/

 

 

Review – Gohl Program | Part 2

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Review – Gohl Program | Part 2

By Twinkle VanFleet

Monica Depriest and Arik Gohl picked me up from my son’s home on October 23rd, 2016. My husband and I had spent the weekend there to take care of our grandson De’Mantai so his mom could enjoy some time away. I had just had a cervical steroid injection. This was my second in 8 weeks. I had only ever had Lumbar Sympathetic Nerve blocks prior and over a dozen of them. I had began with a series of 3 scheduled one week apart in 2006. It had taken 6 years for any treatment other than medication management due to Worker’s Compensation. So that I’m precise rather than confusing, these weren’t denied. Had they been denied I could appeal, instead just stalled and delayed. Since the first 2 series of 3, I’ve had one injection a year since, generally during winter and often times delayed beyond my physician’s control.

We arrived in Loomis California an area outside of Sacramento that evening.

Photos above taken 3 hours apart and the same day as the video below. November 4, 2016.

Admittedly, my body was weak and pain was high, but I hadn’t shared that yet. I tend to go off on my own, and attempt to distract myself when among others. As we arrived, Susie and her son Tommy who has RSD/CRPS, along with her son David had also arrived. Jamie and Spencer arrived later. Jamie Pearson is active in the RSD/CRPS communities, too. Arik’s wife Veronica was amazing and helped us all feel at home. Vero’s hospitality and playful spirit afforded us the ease of being less anxious and at ease among those we didn’t know. Sam Ballentyne licensed therapist and energy healer was also present during the week. Dr. Edward Glaser arrived the next morning. Dr. Glaser is the owner of Sole Supports and an engineer and DPM specializing in Podiatry and Orthotics. Another Podiatrist joined us to observe and all our therapies would begin the morning of October 24th.

16 years. 10 with a permanent Spinal Cord Stimulator (SCS) that hasn’t been turned back on since the morning of the 24th. My only blessing that has been on day in and day out since 2006. The only time it’s ever been off is to either charge a drained battery or to push past 2-3 days to allow my brain to scramble and disguise the pain signals it provided. Our brains realize it’s being tricked. Turning it off let it work better again when turning it back on.

It’s been over a week since returning.  I wasn’t suppose to ever be able to do this, at least without added pain or causing a flare-up. Lets see if I can get to the point of running one day. 2 days ago, I was still told I never will.

So what is Manual Ligament Therapy?

Are you still curious?  ANATOMY PHYSIOLOGY, PATHOPHYSIOLOGY REVIEW Ligaments: A source of musculoskeletal disorders

Review – Gohl Program | Part 1

By Twinkle VanFleet

https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/

https://gohlprogram.com/

https://gohlprogram.wordpress.com/

I know you can’t wait to learn more and I can’t wait to share it with you. Stay tuned for Review – Gohl Program | Part 3

In the meantime, here’s Jamie’s story on

Dragonflyy’s Journey

To be Continued…

iPain Living Magazine | 12-Steps to Patient Empowerment

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iPain Living 
12-Steps to Patient EMPOWERMENT

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Official Magazine of the International Pain Foundation

1. Empower by Barby Ingle

2. Responsibility by Twinkle VanFleet

3. Discussion by Sara Hobbs and Barby Ingle

4. Options by Amanda Green

5. Decisions by Emily Ullrich

6. Records by Melanie Lamb

7. Commitment by Dr. Melissa Geraghty, Psy.D

8. Ask by Dave Gray

9. Familiararity by Carin E Willis

10. Pain Management by Gayle M. Taylor-Ford LSCSW, LCAC

11. Insurance by Brian Levy, EMT

12. Rectify by Ken Taylor

Read iPain Living at:

https://powerofpain.org/ipain-living-magazine/

iPain Living – Flip Edition

https://s3.amazonaws.com/online.anyflip.com/mjqb/lssm/mobile/index.html#p=1

For more information or to order and purchase hard copies for your office, please contact: twinkle@internationalpain.org National Advocacy Director, International Pain Foundation.

iPain on Facebook

https://www.facebook.com/InternationalPainFoundation/

Twitter:  @powerofpain  | @iPainFoundation

Pain Drug Reaches Phase 3 Clinical Trials | Dallas Legal Examiner | Dallas Texas Personal Injury Lawyer

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Posted by Bryan Pope
June 7, 2016 8:55 AM

A Pittsburg-based drug development company has received U.S. Food and Drug Administration (FDA) approval for phase 3 clinical trials of a product to treat severe, persistent pain. The medication, T-121, is being developed by Thar Pharmaceuticals and is expected to enter the market by 2019. T-121 is an oral version of Novartis’ intravenous-only zoledronic acid, which is sold under the brand name Zometra. T-121 will be intended for patients suffering from complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD), a chronic pain condition often brought on by some sort of trauma. About 70,000 people across the U.S. experience pain from CRPS/RSD, which can become chronic over time and become a disabling condition.

Treatments for CRPS/RSD.

There are many different types of treatments for CRPS and new ones come about relatively frequently, although what works for one does not usually work for another, making treating the condition all the more difficult. Generally, the earlier CRPS is caught and treated correctly, the greater the chance that the condition will respond to medical treatment. Although most doctors agree that a combination of diet, exercise, physical therapy, and medication is the best treatment of CRPS for most patients, exactly what that combination may be and which medications work best is a highly debated issue among pain management doctors. There are no FDA-approved treatments for the pain of CRPS/RSD. Thar Pharmaceuticals developed the drug through the FDA’s orphan disease program, which allows for expedited review, tax credits and other competitive advantages for medications that help fewer than 200,000 people.

CRPS/RSD affects fewer than 200,000 patients in the U.S. each year, according to the National Organization for Rare Disorders.

Source: Pain Drug Reaches Phase 3 Clinical Trials | Dallas Legal Examiner | Dallas Texas Personal Injury Lawyer

iPain Heroes of Hope – iPain Foundation

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2016 iPain Hero of Hope Nomination Categories

http://powerofpain.org/ipain-heroes-of-hope/

ipain hero graphic

HERO of HOPE iPain Awards

Melanie McDowell Advocacy Hero of Hope Award

iPain Foundation presents the Melanie McDowell Pain Advocacy Award. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy and pain conditions. This could be within the field of research, education, awareness, or patient assistance.

Caregiver Hero of Hope Award

Caregivers represent service in areas such as nursing, certified nursing assistants, social services, certified medical technicians, therapy, activities, housekeeping, food service and volunteers. We honor these people who give of themselves and make a difference in the lives of those they care for in long-term care.

Corporate Support Hero of Hope Award

This person or group is recognized for being innovators & leaders supporting daily living with chronic pain disease conditions. This can be research for daily living aids, drug development, survey data collecting. Specific or non specific research for effective treatments in the chronic pain community.

The Nerve to be Heard Hero of Hope Award

Nominations are being accepted for those who Have the Nerve to be Heard. This person has been recognized for bringing awareness to the challenges of living with chronic pain in national or international media. Nominees could include patients, patient advocates, celebrity, legislators, professional Olympic athletes, etc.

Nominations for 2016 Hero of Hope awards are now open.

Thank you all for nominating someone who has made a positive difference in your life. We all know someone who has made a difference.  Whether its your life or someone close to you, we all make a difference. Nominations for people who are making a significant contribution within the field of research, education, awareness, and/or patient assistance are now open.If chosen to move on to the next round you will be notified and your nominee will be notified.

Additional information may be requested as needed by our panel of judges Nominations accepted between April 1 and June 30, 2016 Finalist chosen by iPain Gala Committee by July 15, 2016 Recipient will be chosen by the iPain Board of Directors between by July 31, 2016

Award winner will be announced in early Aug. 2016

Source: iPain Heroes of Hope – iPain Foundation

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Previous iPain Award Recipients

Please use the form above to formally choose your award nominee(s). You may nominate as many of your favorite Heroes in either categories as you like. There’s lots of Hero’s out there, show them that you recognize all they do for you, and others.    ~Twinkle