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The Board Officers

The Central Pain Syndrome Foundation is here to bring awareness to the general public and doctors, and helpful answers to CPS (Central Pain Syndrome) patients. We believe that you are never alone, which is why the CPSF is a patient run non-profit organization here for fellow patients and care givers.

We are committed to providing information and support to those suffering from Central Pain Syndrome. By increasing understanding of Central Pain Syndrome (CPS) for patients and doctors alike, we are moving towards funding research for better treatments and a cure.

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Louise H Mowder, President Emeritus

 
 
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Scott Fontenot, President

I have the privilege of serving over 2.5 million people with Central Pain Syndrome! It breaks my heart when I think of up to 150,000 people being struck in the coming year. Many will go months and years not knowing. Our goal is to inform all who are afflicted, with paths and treatments for managing and beating CPS.“

+ Read Scott's Story

Ten years ago my life changed in one day. Brain surgery went wrong, I had a stroke, and became "disabled for life" with Central Post-Stroke Pain (Central Pain Syndrome). That was a difficult declaration for me. But, burning over half my body is real! I was in excruciating and intractable pain.

I've battled for my body, swimming 2.5 miles, across Puget Sound and back! Every way I can win I'll take. I almost committed suicide, in our beautiful Olympic Mountains, but my family and neurologist helped me. A battle in my mind, caused by my stroke is another real challenge. Winning!

Looking online for answers nine years ago, I found a "Central Pain Syndrome" Yahoo! discussion group. I read without writing, then began to contribute. I felt like I was not forgotten, first time in many months. For ten years, off and on, now at Facebook, I have been encouraged, and have encouraged others.

 
 
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Robert Bectel, Vice President

I am hoping to lend my knowledge, experience and humor to those that are in need of a friend or some help from someone that lives this life.”

+ Read Robert's Story

Here is a pretty good story of where my CPS came from: I blew out a disk (L3/L4) in July of 2013 and had double cortisone shots to my spine four times over the course of the following year. In October of 2014, I fell down some stairs breaking my right foot and ankle. Tearing the ligaments and my peritoneal tendon. No surgery, but lots of cortisone, braces on the leg and a fast rolling knee cart for four months. In March of 2015 I fell down the same stupid flight of stairs, this time injuring my left shoulder. Then, in late July of 2015 I stepped on a bee's nest (without their permission) and received a less than warm welcome by the bees.

The reaction my body had to those stings was not pleasant and required some time at the emergency room(s) of my local hospital. In August of 2015 I got an infection in my left armpit that caused bruising, pain, pins and needles and some swelling. Apparently this came from the bee sting incident. Then the symptoms spread to my head, face, neck and left leg. This all occurred during the same time that I was the primary witness (on the good side) of a waste/fraud/abuse investigation against a Senate confirmed political appointee. Think stress!

Fast forward to January of 2016 and after two trips to Mayo Clinic, I have my CPS diagnosis, and recommendation from Mayo to avoid doing things that hurt me, or cause me to stop breathing, like sleeping on my back. I wasn’t impressed. Though Mayo was/is terrific, their neurology guys are not very nice and didn’t really offer much in the way of a solution. They also suggested I attend their pain management program, which I considered.

They settled in on my medication: Cymbalta 120mg, Depakote 1,000mg, Verapamil 240mg, Nortriptyline 80mg, Indomethacin 75mg, Vitamin D once a week 50000mg, and continued physical therapy. Now, several weeks later, I have lower pain. levels 1-3. Which is awesome. I think those levels will go up a bit with stress, but they will be manageable.

 
 
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Tim Parrish, Treasurer / Secretary

"I uncovered a treasure chest full of hope when my doctors were saying there was no hope in dealing with CPS. Serving on the CPSF board is born out of a desire to work with an awesome team of folks and share what we've learned with as many sufferers and providers as possible."

+ Read Tim's Story

A lifelong Virginia resident, my wife and I raised three boys and ran a successful concrete construction business. But all of that changed in 2011 when an implanted medical device (an IVC filter) went rogue and cut a lesion on my spinal cord. Before long, I was dealing with debilitating abdominal and chest pain, allodynia and temperature sensitivity and was soon in bed twenty-two hours a day. 2013 was a dark year emotionally but things began to look brighter after I discovered the CPS Facebook group.

It helped so much to know I was not alone and to have support from folks walking in my shoes. Shortly thereafter, hope began to grow in my heart as learned about neuroplasticity and the possibility of reducing or even ending the pain by rewiring my brain. The work of cognitive neuroscientist Dr. Caroline Leaf helped me identify underlying roots that had allowed the pain to flourish and provided strategies to forge a way out of the “pit of despair” I was in.

Another turning point came early in 2015 when I began low dose IV Ketamine infusions. Being intolerant to every opioid tried, I was thrilled when Ketamine offered a bit of pain reduction after the initial seven day treatment. With the help of an awesome support team including a pain psychologist, physical therapist, chiropractor and palliative care provider, I began to develop a toolbox of coping mechanisms that got me up and moving again. Slow and steady was the way forward but eventually momentum began to grow and by June 2017 the pain finally turned off in my brain for good. I’m still so amazed and eternally grateful.

I have continued to relate with my many CPS friends that cheered me on in my journey and was proud to be elected as Vice President of the Foundation’s board in 2017 and have transitioned to the Treasurer position in 2018. I am eager to support and offer hope wherever you are in your own journey as well as raise awareness of CPS in the medical community and beyond. You are never alone!

 
 
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Michelle Harloff, Trustee

I’d like to see the Central Pain Syndrome Foundation be able to reach the people who need us the most. Those who need to hear, ‘you’re not crazy’ and, ‘you’re not alone’ so they too will know that together we can all fight for relief. Knowledge is power, my hope is to spread knowledge about this horrific condition. I’m so excited to be a member of the board for this foundation and have plans of bringing comfort and support to as many as the CPSF can find.”

+ Read Michelle's Story

What I believe to be the start of my CPS journey actually started years before it struck me. Roughly 20 years before CPS I ended up in the ER for severe headaches that I’d had for 2 weeks. After 2 shots of Demerol to calm my head and many blood tests that said I was fine, the doctors did a spinal tap and discovered that I had viral meningitis. They said there wasn’t a cure besides OTC medicines, I just had to wait until the headaches stopped.

So I went home, took a week off from work to recover and continued on with life. Never did they tell me what was in store for me later on. Meningitis is an illness that causes Arachnoiditis, which causes the spinal cord to grow extra scar tissue and cysts. I believe I have more cysts but so far only one has caused issues. I was 31-32 when that happened. Fast forward to 40 years old - I’d been working in convenience stores as manager for over 17 years when, while shoveling one winter, developed pain in my left shoulder, neck and arms.

I started seeing one doctor after another for over a year when I was terminated from my job because I could no longer perform some of my tasks. But yet no one could tell me what was wrong. 2006 was the last time I saw a doctor for those issues as they just sort of faded away for a while. My primary doctor kept me on pain meds so I got by ok.

Then, in September 2012 I bent over to pick clothing off the floor and felt a stinging from my left armpit to the middle of my left breast. As soon as I stood up it went away. This went on into October when finally one day the pain came and never left. I decided it was time to get it checked out. After ruling out breast cancer I was sent to a neurologist who did an MRI and found an arachnoid cyst on my spine, pressing against the nerves that run to the breast. I was then sent to a neurosurgeon to see what he could do.

By this time I had to move with my arm tucked up against my breast to keep any vibration away, riding in the car was torture and I was embarrassed in public for having to hold my breast still. So I begged the surgeon to take the cyst off of my spine, the pain was unbearable. I couldn’t imagine living like that forever. Huge mistake! January 31, 2013 will never be forgotten.

I had the surgery and as I was recovering my spine was hurting more, like the incision wasn’t healing, but it was. Now, I had that God-awful pain from the middle of my back, around the left side of my body to my breast. The damage itself is at T-3,4,5 affecting my left side. What did it feel like? Intense burning, stinging, razors slicing and many swear words. I could no longer ride sitting up in our car, not to mention that driving was out of the question. My husband made a bed in the back of our SUV for me to travel on, it hurt too but was tolerable.

We even took two 1,200+ mile trips that way. We needed to go to Minnesota so I watched the sky while we drove and we camped at night, my husband doing all of the work. I could write a book alone on how wonderful that man is! Anyhow, the surgeon kept sending me to his pain management person and she was absolutely awful! I left her office crying every time. She was mean and by the end of the year I was looking for a new doc. She had tried enough injections, none helped.

I found a doctor at the nearest teaching hospital who was a neurosurgeon and anesthesiologist and went to see him loaded with papers I had printed about CPS. He didn’t even look at them, he said, I see your records, yes you have CPS and I see you’ve tried lots of injections so hows about we don’t do any more and try something else. I could have kissed him!

He tried a capsaicin patch, which was very painful (ask me and I’ll so you the picture) but didn’t work so we talked about the pain pump. He said he wouldn’t put morphine in it as he doesn’t do opioids at all but he would put a numbing agent in it. We did a trial and it helped! So in August of 2014 I had surgery to implant this pump. It’s been my savior for sure. I’ve had it in for 5 years now and have to say that my CPS pain is pretty well under control as long as I stay within my limits.

I also take 3,600mg daily of gabapentin and have 15mg morphine on hand for any breakthroughs. This is not to mention all of the meds I take for other conditions. Sometime in the next 2 years I’ll have to face replacing this pump and as long as I’m medically able to, I will definitely opt for a new one. As an ending to my story I’d like to note that I do suffer from a nice list of other illnesses to add to the battle. I’m always available should someone want to ask me about them.

They are:

  • Adhesive Arachnoiditis
  • Mitral Valve Stenosis/regurgitation
  • COPD
  • Diabetes
  • Osteoporosis
  • A possible mis-diagnosis of RA, new doctor is trying to disprove
  • OsteoArthritis
  • Seeking an Ehlers-Danlos diagnosis
 
 
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Kelsey Reinertsen, Trustee

“Being diagnosed with CPS was both a devastating and hope-filled process for me. Once I discovered material by Dr. Tennant and was able to start his protocol for neurogenerating hormones along with a few additional treatment routes, I came back to life. I’m excited to bring the hope and blessing of these protocols along with other helpful treatment routes into the lives of people suffering with CPS.”

+ Read Kelsey's Story

In 2008 I proved that anyone can fall off a horse and get CPS. Rewind to growing up as an athletic kid - I had many spills and as a seven year old in gymnastics I took a dive roll that resulted in an upper spine strain of some sort, causing extreme shoulder pain. I ignored this pain, mainly because I had no idea that it wasn’t normal. Fast forward to being seventeen and riding horses, and I was practicing jumping without stirrups (I don’t recommend this unless it’s necessary). My horse got excited and gave a little happy buck at the exact same time that I was landing on his back after the jump.

He tried very hard to avoid stepping on me but did run over me while cantering, accidentally kicking my head below my helmet, causing a concussion. Then I went to sit and rest on a fence but before I made it to the fence I had gone unconscious and walked straight into the fence, bouncing off of it and clearly making for a quite comical dinner table discussion. Only unconscious for a brief minute, I really never thought very much of this event afterwords and none of the doctors I saw later on had, “did you hit your head and black out?” on their questionnaire, so I never thought to mention it. The concussion in turn caused tingling, some numbness, added muscle tension and pain, and breathing issues about five years later.

My story gets blurred from there as I shortly thereafter got the swine flu, and then stung by a nasty “mustache” (puss) caterpillar (flannel moth) while I had the swine flu (2009). I never paired the concussion with the onset of my spine pain and constant pain that seemed to plague the back of my head, neck and shoulders. It wasn’t until 2015 that a pain specialist suggested CPS and I realized that all of my post concussion injuries (torn muscle in back, sprained ankle, infected cat bite on hand, and both knees and hips seemingly strained) and surgery pains (wisdom teeth surgery gone awry) were playing on loop.

Several doctors believed me to have Fibromyalgia (which I now know is a common misdiagnosis for CPS) or some yet undiscovered auto immune disorder, but once I understood Central Pain Syndrome as it relates to even “non-traumatic” head injuries (minor concussion), it felt like the puzzle finally fit together. I discovered Dr. Forest Tennant on YouTube in 2016 and found that his hormone protocol of Oxytocin and hCG was helping to restore the nervous system of some EDS and CPS patients so I was eager to try it. Finding a doctor willing to use hormones to treat pain was extremely difficult, but I made it my daily pursuit and in 2017 I finally found a doctor who was already using hCG for Parkinson's patients. This hormone protocol has been changing everything.

I used to get these intense spine episodes where the only way I could breathe was by hyperventilating. The only way I have been able to describe these episodes is as though someone reached into my mid spine from behind me and was squeezing it, trying to snap it. The hCG resolved these episodes, but it took eight months of being on it. The Oxytocin has been an incredible pain reducer. Now, in addition to these hormones, I’m using Frequency Specific Microcurrent to treat and heal the pain and so far, in a little less than a year, my pain has come down from a daily 7-8 to a daily 2-4.

I have used the specific frequencies called Central Pain Alt (created by my doctor), Concussion (standard protocol), Inflammation (standard protocol), Trauma Extremity (created by my doctor), Parietal Trauma (created by my doctor), Chronic Pain (also created by my doctor), and a sequence I made up which includes a combination four “treatments” and seven specific body parts: (treatments) 1. Trauma, 2. Toxicity and 3. Inflammation, 4. Vitality - (body parts) 1. Nervous System Whole, 2. Nerves, 3. Muscles Shoulder, 4. Spinal Cord, 5. Joint Capsules, 6. Muscle Tissue, and 7. Hind Brain. Additionally, I have a custom made "Phantom Limb" frequency, because to my understanding CPS is much like phantom limb pain.

I also tried Cymbalta, which made me way worse, but I was on it for three years and didn’t know how much worse it was making me until I got off of it. I tried B shots which hurt like bee stings and didn't seem to do anything for me. However, other medications helping me have quality of life now are a topical Ketamine compound (10%), Amantadine (100mg), Low Dose Naltrexone (4.5mg), low Dose Lithium (20mg - from supplement store), Trazodone (200mg), Singulair (10mg 3x daily - this is known to have a side effect that stops glial cell activation) and an array of supplements including B Complex, Rhodiola, DHA, Vitamin D, the best multivitamin there is and CoQ10.

Most everyone thinks I am completely healthy because I look capable, I am a professional photographer and dog behaviorist, and I seem (mostly) "with it". But in reality I have been 50-90% bed ridden for almost a decade with extremely devastating pain everywhere I have injured myself after the concussion and throughout my CNS. Also, I have experienced the memory issues that most don't experience until they're diagnosed with dementia. I pushed through college, but my entire system collapsed shortly thereafter (2011), which started me on my path to getting diagnosed.

Two key elements to my healing have been reading Dr. Caroline Leaf's book "Switch On Your Brain" and looking for doctors in the "natural, holistic, integrative, or alternative" sphere of medicine, completely outside of insurance, who are also well rounded MDs and DOs.

I am so grateful that I discovered Dr. Tennant and his protocol, along with a local doctor who started me on FSM. I believe strongly in the hormone protocol of Dr. Tennant and in FSM, and I'm doing everything I know to help others try these protocols in hopes that their pain will reduce or reverse, too. My life has been dramatically improved since starting these two main treatment routes in 2017. I made a video (watch here) with more in depth information about the treatment routes I have chosen (Dr. Tennant hormone protocol and FSM) with hopes to help others become aware of these protocols and try them.

 
 
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Dr. Forest Tennant, Advisory Council

“My goal and mission are to identify and treat the underlying causes of severe, chronic intractable pain, develop clinical protocols to treat the underlying causes as well as provide symptomatic care that allows the intractable pain patient to function and have a good quality of life.”

+ Read About Dr. Tennant

Forest Tennant, M.D., Dr.PH., started his pain clinic in 1975. Originally it focused on treating the pain of cancer and post-polio. He has authored over 300 scientific articles and books, and currently serves as Editor Emeritus of Practical Pain Management, the nation’s most widely circulated pain journal for physicians.

He has formerly served as a Medical Officer in the US Army and US Public Health Service. In the past he has been a consultant to the US Food and Drug Administration, National Institute on Drug Abuse, Drug Enforcement Administration, LA Dodgers, National Football League, and NASCAR. He has authored another handbook for pain patients called “The Intractable Pain Patient’s Handbook for Survival”.

 
 
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Dr. Carolyn McMakin, DC, Advisory Council

“I developed Frequency Specific Microcurrent in 1996 as a way of treating pain using frequencies resurrected from a list created in 1922. I treated Central or Thalamic Pain Syndrome successfully for the first time in 1999 with one specific frequency combination. The protocol has been successful since then in many patients treated by some of the 3,000 FSM practitioners world-wide. Phantom limb pain, nerve pain and spinal cord mediated pain and spasticity each has a specific successful protocol. It is my mission to teach these protocols so practitioners can use them to bring relief to any patient in pain.”

+ Read About Dr. McMakin

Carolyn McMakin, DC developed Frequency Specific Microcurrent (FSM) in 1996 and began teaching it in 1997. She has a part-time practice, does clinical research and teaches FSM seminars in the US and abroad. She has lectured at the National Institutes of Health and at conferences on fibromyalgia and chronic pain in the US, Australia, England, Kuwait, Taiwan, Italy and Germany. Elsevier published her textbook, “Frequency Specific Microcurrent in Pain Management” in 2010. Her book, “The Resonance Effect; How Frequency Specific Microcurrent is changing medicine” was published by North Atlantic Books in 2017.

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About The CPSF

The Central Pain Syndrome Foundation is here to bring awareness to the general public and doctors, and helpful answers to CPS (Central Pain Syndrome) patients. We believe that you are never alone, which is why the CPSF is a patient run non-profit organization here for fellow patients and care givers.

Our Volunteer Teams

Our teams are ramping up efforts to inform the 1.5 million CPS patients, and the 115,000+ new patients diagnosed with CPS each year. We are working on strategies to rapidly inform nurses, ICU personnel, radiologists and GP doctors, and we are focused on neurology experts.

Our Caring Team is providing online care for members of our Facebook group the “CPS Tribe”, by giving them a place to express their pain and process, and helping to support by answering questions.

Our Research Team is gathering, culling through and linking material and personal experiences to more thoroughly explain causes, effects and treatments.

Our Web Presence Team is collecting and sharing the latest and most effective treatment protocols based on scientific and medical research along with pointing people to the current Facebook community for support and answers.

 
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