The mission of U.S. Pain Foundation, a 501(c)(3) nonprofit, is to empower, educate, connect, and advocate for individuals living with chronic illnesses and serious injuries that cause pain, as well as their care partners and clinicians. Through its multiple programs and services, the organization works to elevate the patient voice, increase disease-state education, improve pain care through policy change, expand outreach to underserved and marginalized communities, and provide comprehensive resources to ensure individuals are supported and empowered along their journeys. Our RU-vid channels shares information, resources, and hope for the more than 51.6 million Americans living with chronic pain.
Why are we in trouble for being in pain? Like what? Our lives suck! And we are treated like criminals… I don’t have the heart to kill myself but I am depressed..
I totally fell in love with the Feldenkeais method a number of years ago. I wish it was more popular and had a wide range of availability for us. Thank you for this session.
joke rehab didn't help me at all. Its just more nothing jobs the government made out of thin air. How about they do that for people with disabilities too? Wait that would actually solve the problem and deem all this bullshit useless. Gotta put all those feminist psychology degrees to work somehow.
U. S. Pain foundation ? Lol how many people are making a paycheck at THIS foundation. There are a million foundations that don't actually do anything but talk about how to go somewhere else for help. SSDI only works for people who can get a diagnoses which is a joke. Doctors are not allowed to give you a diagnoses in 2023, especially if it means you are going to collect SSDI. I have been looking for answers for years. Ive lost my house, my cars but still manage to work but running out of options considering i can barely walk 60 percent of the time due to pain and stiff, locking joints in my feet, legs, and hips. Im going to end my suffering before i even get to see any help. This is how it works.
I'm a member of the U.S. Pain Foundation and have been watching the toolbox presos. I want to respond with my concerns. I'm not attempting to hurt anyone's feelings or stop anyone from presenting their narrative, but worry about the potential negative impact for pain sufferers who are being vilified by their own doctors for taking any medication for the relief of pain, anxiety associated with pain, and other related medications. Before today, I recently watched another video from the U.S. Pain Foundation, where a woman veteran was in D.C. with Ms. Hemmingway, and while outside the building they were going to enter, stated the VA medical community put her on multiple medications. Both videos expressed similar experiences of ingesting large amounts of drugs daily for extended periods, which caused distress over time. When I began my pain journey over 30 years ago, I was offered various medications, not all in the first week. It was more of a trial and error over time. I listened to my body and immediately stopped medications that didn't agree with me physiologically or didn't fit into my busy life. I was in an extreme amount of pain but soon realized that no amount of medication was going to take away more than half my pain at that time. There was pain I had to learn how to live with, and taking every pill my doctor prescribed at the same time didn't seem logical to me, even as a 27-year-old preparing to enter into college. If something didn't agree with me, such as muscle relaxers, I immediately stopped taking it - forever. It wasn't a necessity like blood pressure medication would be. My mother called me one day, a miserable mess, fatigued, unable to do more than lay on the couch. She had seen a specialist for her severe allergies who had prescribed a variety of medications to treat multiple symptoms. Instead of trying one medication at a time, possibly taking half of a dose to see if there were any negative effects, or even checking labels to be sure her symptoms warranted taking a particular medication, my mom had taken one of each pill, such as antibiotics, antihistamines, etc. That was only one day, and no wonder she felt overmedicated! In my humble but firm opinion, this type of behavior is where much of the disconnect between doctors prescribing and patients taking medications lies. Doctors need to better assess their patients' level of understanding regarding prescriptions and their limitations and present information in a way each individual can comprehend. They should also discourage automatic trust. We, as adults, are responsible for our own bodies and can't blindly trust that professionals in any field automatically know what's best for us. All medications and supplements, whether prescription or over the counter, may not be suited for everyone and should be tried with caution. Every medication has a potential side effect, many are even advertised on TV, and all Rx meds come with information sheets. Many have contraindications. Pharmacists are happy to answer questions, too. We must be vigilant, ask questions about treatments, ask for help in dosing to avoid overmedicating, do the research, and be careful of what we put into our bodies. I'm concerned that my rights and the rights of many other pain sufferers will continue to be violated if people don't stop blaming others for blindly taking every pill prescribed without question and don't take responsibility for their own choices. Thank you
Thank you for sharing your story. I am crying right now because I never heard anyone else who talked about some medical providers causing more harm. I’ve experienced the same thing the past seven years. One of my friends tells me I am the best self-advocate she knows, but I have been more hurt than helped by doctors. I understand they are overwhelmed with too many patients, as well as under pressure by some health systems to see as many patients as possible and do as many surgeries as possible. Many doctors probably have good intentions, but the system does not let them treat patients the way they think is best. I have felt left out in the cold with no help after experiencing post-surgical complications. It is frustrating and I feel very alone, like you did. Depression and CPTSD have gotten worse, also. Many times I have been on the brink of giving up. Your story helps me feel like I’m not so alone. It also gives me the courage to join a support group. Thank you for that. You are an amazing gift.
What about being on medication for over 20 years due to back pain and ptsd / anxiety/ anxiety/ Drama/Depression etc they have to replace my upper bridge Im on pain medication from her, 3/4 times a day and three Xanax and other medication but I have to have severe dental work they’re saying, so what am I supposed to do cause my family doctor said if I do it she’s gonna cut me off so how do i get the dental work done because it’s totally different pain. So what do i do?
I appreciate these presentations and have learned from these presenters. I am well-educated and believe that I have good critical thinking skills. Maybe this is true of most of your audience. Still, I am concerned that many will view these presentations and Q and A's and have the impression that the subject is too complicated, the dangers too many and the individual responses too variable to take a chance on exploring this area of treatment. Maybe some visual aids to evaluate Safe/Not Safe sources; managing doses and dose changes safely (titrating); links to legal info re: local drug testing standards. I understand you wanted to avoid individualized dosing recommendations and conflicts with local laws. It may be as simple as this suggestion: if you may be tested for drugs because of employment or military status, do not use CBD or THC products. Thanks for all the work on this important subject.
Lots of information. Some very confusing but hopefully in time those things will become clearer. Steph was very hard to follow, the sound continually was breaking up often so much so you were hearing about every third word. Yet overall this was very informative, thank you to everyone for putting this together.
Great interview. Although it was frustrating to watch Steph breaking up often and the fuzzy background. So much to learn and direction with use is confusing. Hopefully that will become easier for consumers for Pain. Thank you Nicole!
An interventional pain Anestelogist said to me that these stimulators have a low success rate for dealing with the spine pain based on patient feedback. I would probably seek out someone like Jeffery Cantor in Ft Lauderdale who uses ultrasonic bone cutting to clean out bone impinged areas around the nerves if that is all that is needed.
a attorney is always the way to go,i have spondylolisthesis, stenosis, facet arthrosis, ddd,radiculopathy, neuropathy, sciatica, nerve root impingement of the spine,all xrays,mri .type 2 diabetes, server ptsd,long work history, 58 years old and still waiting 2 years now
I’ve got all of this plus crps . Nothing . Denied three times mostly bed bound with a permanent placard m mobility aides , service dog , permanent pt . Incontinent supplies delivered to my house , tons of medications .
