BREAKING NEWS-SHARE WITH ALL!
Newsletter link: FIPR Newsletter Vol 1 No 3 Oct 2019-1
Poster Conference Adhesive Arachnoiditis MS Poster
Welcome to the second edition of the Families for Intractable Pain Relief newsletter!! We have three items of exciting and encouraging news to share with our intractable pain friends and their family members this month! We also have launched our Urgent Action Alerts (see link below) with two very important action steps to take to help our friends and family with intractable pain.
1. Hopeful news for intractable pain patients who require higher dose opioids to control their IP painl!! Read the eye witness reporting on the FDA meeting on High Dose Opioids by FIPR co-founder Kristen Ogden and FIPR editor Anne Fuqua, who also presented for all of us at the meeting.
2. Dr. Tennant and FIPR co-founder Ingrid Hollis have written a groundbreaking book that should help many worldwide who are suffering from Adhesive Arachnoiditis. Make sure to order a copy for your doctor, family members, and friends. Title: Adhesive Arachnoiditis: An Old Disease Re-Emerges in Modern Times Order from Amazon Books and Lulu.
3. The launch of our “Debunking the Myths” series on dispelling the modern day myths around the utility of opioids, and other “stigmatized” medications in the treatment of Intractable Pain. ”
Link to Latest Newsletter:
The complete version of the FDA report link:
Urgent Action Alerts !
First Action Needed by September 11, 2019-Write ISAP to provide input on their proped changes to the definition of pain. This could gravely affect pain care in the future. See link below:
Write Senator Cassidy to thank him for writing to the DEA to ensure chronic pain patients will continue to have access to pain medications. Senator Cassidy is also a doctor, and he is very concerned about this issue. “Senator Urges DEA to Ensure Continued Access to Pain Medications for Chronic Pain Patients”. See link contact information and more:
The inaugural edition of the Families for Intractable Pain Relief newsletter is here! We plan to publish this newsletter monthly with interim alerts when we find time sensitive information and breaking news along with advocacy opportunities as they arise. Please share this newsletter with your members of congress, state legislators, state medical boards and your health care providers.
Report from the lastest FDA Public Meeting on High-Dose Opioids attended by FIPR members Kristen Ogden and Anne Fuqua held in June, 2019 coming soon! Stay tuned for our members report!
Big Thank You to all who commented on the Federal Register!!!
Continue to call and write your senators-let your voice be heard! Many bills are up for vote, and patients and their families need to be part of the equation! No more about us without us!
Report from the FDA Meeting July 9th, 2018:
There were many brave patients and their family members who spoke at the latest FDA meeting: “Patient–
Among the group was Amy Partridge who has Ehlers-Danlos Syndrome and Arachnoiditis. Here is her story that was presented at the FDA Meeting.
“Hello, My name is Amy Partridge. I am an intractable pain patient; I am NOT an addict.
I thought I knew pain; I dealt with chronic back pain for decades.
Three years ago, I learned how bad pain can REALLY be. I also learned how to fight.
Starting in 2013, I had a series of spinal surgeries and epidural steroid injections. During the 6th and what would be my final injection in 2015, I knew something was wrong. Very wrong.
Over the next 6 months, as my pain spiraled out of control, I saw countless specialists and fought for a diagnosis.
And wow, did I get one: Adhesive Arachnoiditis.
I listened as the doctor explained how scar tissue had grown INSIDE of my spinal cord and that scar tissue was (and is) strangling my nerves, adhering them to the wall of my spinal cord.
Adhesive arachnoiditis is inoperable, permanent, and progressive.
It has been described as the pain of end stage bone cancer, without the escape of death.
It is one of only a few conditions referred to as a suicide disease.
I went from being a mom, wife, and executive at the peak of my career, to spending nearly every moment in a daybed in my family room.
I fought my body to allow me to do even a fraction of what I was once able to do.
The pain was excruciating and constant; one wrong move and it felt like there was a hatchet in my spine. Pain varied from jellyfish stings to a red hot poker being shoved into my hip.
I missed some big events that year: weddings, funerals, and countless functions.
More difficult were the everyday things I missed
….standing long enough to braid my daughter’s hair
…sitting long enough to eat Thanksgiving dinner at the dining room table with my family.
….simple things we take for granted
My husband took over every household chore and my mom helped with errands and driving me to appointments.
My children had to adapt to having a Mom who was mostly bedbound.
Our lives were turned upside down, but I fought.
I fought my mind to accept that at age 38, I was, in fact, disabled.
I fought back tears as I ordered myself a wheelchair and mobility scooter so that I could get out of the house more often…. only to find that I could rarely sit long enough to use them.
I fought for doctors to acknowledge how much pain I was in.
I fought adrenal fatigue, exhaustion and episodes of intense sweating.
I fought for long term disability.
That first year I spent fighting for many things, but mostly I fought for treatment.
I fought side effects from countless medications and therapies that my doctors prescribed; none worked.
I fought to change my diet and I have a one gallon Ziploc bag filled with bottles of supplements that didn’t help.
The pain was SO BAD that I actually asked one of my doctors if there was a way to surgically paralyzed from the waist down…But not even that would rid me of my pain.
There was no escape. No way out. Just pain.
I fought to be seen by one of the only physicians in the world specializing in arachnoiditis.
I left my first appointment (which was 3,000 miles away) with a new sense of hope….these medications WORKED!! And yes, SOME of them are pain medications.
I returned home only to fight the pharmacies who flat out refused to fill my legitimate prescriptions. All medications carry risk. And when you have an incurable condition and spend ALL DAY in bed, unable to truly live, RISK IS RELATIVE.
I then fought the DEA, who raided my doctor’s office and accused us (his patients) of trafficking drugs!!!
I will NEVER be pain free, but with these medications, the pain is manageable enough that I can usually leave the house for an hour or two before I need to lie down again.
Yes, I still suffer from debilitating pain and fatigue. I’ll never work full time again; I still have bad days and miss events. But on good days, I am able to LIVE again!!
But I STILL FIGHT!
I still fight the stigma of being a pain patient; stigma that nearly cost me my life in January when an ER doc was SO convinced I was an addict that he missed the perforation in my colon on the CT scan
I fight for everyone who cannot be here today because their medications have been ripped away.
I fight for the post-op patients being given Tylenol (fun fact: NSAIDs kill more people than prescription pain meds every year)
I fight for my daughters who may some day need pain medication for the Ehlers Danlos Syndrome that I passed on to them.
I fight for morality and compassion and common sense be returned to medicine
I fight for politicians to STOP PRACTICING MEDICINE
We’re not the problem and neither is pain medication. NUMBERS don’t LIE!!
It’s illicitly manufactured fentanyl causing this crisis. We must restore access to pain medication for ALL patients and mandate that physicians treat our pain, and enable them to do so without fear of prosecution.
Our lives literally depend on it. And someday, yours could too.
So, members of the FDA, will you stand and fight with me? With us? Because as Americans, we have the fundamental rights of LIFE, liberty, and the pursuit of happiness. And the last time I checked, those rights exist regardless of what medical condition you have.
Thank you Amy!
TIPS FOR SENDING LETTERS TO SENATORS:
1. Don’t send letters by postal service mail to the Senators at their Washington D.C. addresses. All mail sent to Senators in D.C. is diverted to a special post office to be screened for toxic substances, etc, and it takes about 4 weeks for a piece of mail to get through this process. If you want to mail a copy, send it to the Senator at their address in the capital city of their home state. You can find this info on any Senators’ website.
2. The 2 quickest and most effective ways to send the letter and attachment are to fax them and to use email to send them to a Senator’s healthcare staffer in Washington D.C.
3. The 3rd way to send your letter is by submitting to our Senators’ email portals on their websites. You can write your letter off-line, using the sample, and then copy and paste the words into the email form on the websites. This is a quick way to send the letter but, most of these portals have character limits and don’t allow attachments, so you can probably only send the letter this way, not the detailed attachment.
WHAT ELSE CAN YOU DO?
1.Call the Senators’ offices in D.C. and leave a message stating what you are asking for.
2.Call the Senators’ offices in D.C. and ask to speak to their healthcare aid. Tell that person what we are asking for.
3.Try to make an appointment to meet in person with your home state Senators’ staffers at one of their offices in your home state.
Stay tuned for more action steps in the coming days and weeks for more ways you can help. We will be sending out more suggestions and more sample letters to bring attention to other aspects of the problems for intractable pain patients.
Hot off the Press: Dr. Forest Tennant’s Updated:
Check back for more updates!
Gababout Health!! New web-Blog
Families for Intractable Pain Relief Co-Founder Kristen Ogden presented at the latest FDA Hearing Jan.30, 2018!
New! Here’s the video of Kristen’s presentation on behalf of FIRP to FDA Jan. 30, 2018:
View Slide Presentation from video here:
Dr.Tennant’s Statement on Treating Intractable Pain:
By Forest Tennant M.D., Dr. P.H.
January – 2018
The current attempts by a number of parties to castigate and humiliate pain patients and their medical practitioners is not just pathetic and mostly false, it is dangerous to the fate and life of many IP patients. If it wasn’t so serious, some of the claims, biases and beliefs would make good comedy.
First and foremost there has been no discussion about the difference between intractable pain and chronic pain. There really is no bigger issue. The proper identification and treatment of the IP patient is not only essential for the health and well-being of the IP patient, it is a major key to the prevention of overdoses and diversion of abusable drugs. IP patients must have special care and monitoring.
The basic definition of IP is a “moderate to severe, constant pain that has no known cure and requires daily medical treatment”. Chronic pain, on the other hand is a “mild to moderate, intermittent, recurring pain that does not require daily medical treatment”. While there are millions of persons with chronic pain, only about 10% are intractable.
The cause of “intractability” is two-fold: (1) the initial injury or disease which initiated IP was severe enough to cause a pathologic transformation of the microglial cells in the spinal cord and/or brain. It is this transformation that produces neuroinflammation and the constancy of the pain. This process is known as “centralization” or “central sensitivity”; (2) to have enough injury to cause “centralization” one must have a most serious disease or condition of which the most common are: adhesive arachnoiditis, traumatic brain injury, reflex sympathetic dystrophy, post-viral encephalopathy, or a genetic disease such as Ehlers-Danlos Syndrome, porphyria, or sickle cell disease.
Medical practitioners must have minimally-restricted prescribing authority and autonomy to adequately treat IP. For example, the proper treatment of IP not only requires analgesics, opioids and non-opioid, but specific anti-inflammatory, hormonal, and corticosteroid agents that will cross the blood brain barrier and control inflamed and pathologic microglial cells. Treatment of IP has to be individually tailored and may require non-standard, off-label, or an unusual treatment regimen.
Make no mistake about it. The new treatment approach to IP is quite effective in reducing pain, controlling neuroinflammation, and allowing patients to biologically function well enough to have a good quality of life. Also be advised that the new IP approach is not just reducing pain but treating the underlying cause of pain. Consequently, a lot of expensive procedures, therapies, and opioids are no longer needed. As long as I am practicing I will continue to push forward this new approach.
Great article below from NY Post written by Jacob Sullum about Dr. Tennant’s current situation and the great work he does taking care of rare patients. Please share far and wide, and include it when you write your Senators, Congressmen, etc. Share with everyone! This has to stop, patients are suffering! Thank you Jacob Sullum!
Dr. Lynn Webster comes out in support of his friend and colleague- Dr. Tennant- Thank you Dr. Webster! -Author of The Painful Truth.
Thank you Maia Szalavitz! – Author of The Unbroken Brain
Dr. Fudin and Dr. Terri Lewis speak out #DropTheTennantCase!
Thank you Dr. Fudin and Dr. Terri Lewis!
Great Recent Articles from Pain News Network, Thank you Pat Anson and Pain News Network!
Reporter George Knapp from Channel 8 in Las Vegas has done an excellent job telling the other side of the “Opioid Crisis” -how it is affecting those with disabling pain, in the #ourpain series. Thank you George Knapp and Channel 8 I-Team!
Reason TV did a riveting interview of Dr. Tennant and his patients in July and an update on the raid of Dr. Tennant’s office. Thank you Zach Weissmueller!