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Advocacy for Chronic Pain Patients

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eileenbunny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote eileenbunny Quote  Post ReplyReply Direct Link To This Post Topic: Advocacy for Chronic Pain Patients
    Posted: Mar/02/2017 at 8:46am
On February 14th I, along with 120 other advocates, spent the day visiting various members of the senate and the house to talk about chronic pain.  We had 160 visits and most went well, but we definitely need more support.  Here is the gist of our message to congress.

Chronic pain is the single most costly US health problem by far.  Pain costs $560-$635 billion dollars a year in the US which is about equal to 3.5% of the US GDP.  By weight of comparison, the combined costs of heard disease and cancer is about $552 billion per year.  Back/neck pain and headache disorders are the 1st and 4th leading causes of disability in the US.  28.7% of Americans have chronic pain.  It's not hard to see why we have an opioid epidemic as they are the default treatment for pain.  The reason is because we don't have many other treatments and it is unethical to leave people in pain.  We all know that opioids make it possible for many of us to survive, but we also know it isn't an ideal or even totally effective solution to our pain.  25% of people who take opioids for chronic pain eventually misuse them and 10% become addicts.  91 Americans die daily of opioid overdose.  Safe, effective, and affordable chronic pain therapies are urgently needed to replace opioids.  If new therapies reduced US pain costs by just 1%, it would save $6 billion annually.

Last year, as we all are likely painfully aware, congress passed the Comprehensive Addiction and Recovery Act (CARA).  While it seems like a great idea on the outside, the implications for many of us have been dire.  What isn't as public is that within that act was a directive to NIH to fund more research for better treatments for chronic pain.  However, CARA didn't include funding provisions.

Here's where you come in.  Senator Brian Schatz and Congressman Peter Welch are putting together a work group to draft a bill they would like to introduce in April.  This is an appropriations bill that will fully fund CARA Section 108 - Provisions to prioritize NIH pain research.  This is important, bipartisan legislation, that could really have an effect on how we are treated.  Please contact your senators and representative and encourage them to join this work group or at the very least support the bill when it comes out.  I'll update at that point.

Eileen
Chronic daily headache without real designation resulting from severe meningitis

Non-hodkins lymphoma survivor since 2003
Ruptured disk at C5-C6
Inferior alveolar nerve damage
Depression, PTSD with dissociative tendencies
I also have some yet to be diagnosed immune deficiency that is causing fatigue and severe joint pain.
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Mar/02/2017 at 12:45pm
Thank you so much for posting this, Eileen and for your ongoing work in our Nations Capital bringing awareness to the plight of so many suffering with chronic pain.

There's never been a time like now to make our voices heard. The stories we are hearing of too many CP sufferers who are being denied treatment are heartbreaking. We desperately need research into safe and effective treatments for all types of chronic pain. We know that opioids aren't the ONLY answer --- if they were we wouldn't still be here doing this site because no one would have any questions. It IS time for funding for all of us to have options without the ongoing problems we now face without stigma and side effects and quite frankly inadequate pain control.

So please----everyone---contact your legislators and make your voices heard. There's great power in numbers!!!!

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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dbarbeau48 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dbarbeau48 Quote  Post ReplyReply Direct Link To This Post Posted: Mar/02/2017 at 5:46pm
Thank you for your time and effort Eileen. The problem with trying to educate politicians is they want to do what's easiest for them. Currently, the easiest solution to the opioid crisis is to order drug companies to make less opioids. In my case, and probably all chronic pain patients, it means having to jump through more hoops to get prescriptions filled. I dread the end of each month when I have to get my pain meds refilled, waiting 48 hours for the doctor's office to tell me I can come to the office to get my prescriptions, than off to the pharmacy only to be told they don't have them and wait god knows how many days before they come in. All this because the federal government ordered a 25% reduction in production of opioids. Sorry for the rant but I am tired of being treated as a drug addict.
Dick
Five knee surgeries from 1970 to 2000. Knee replacement in 2000.Spinal stenosis surgery in May of 2002. Diagnosed with Pseudogout in 2005, effecting hands, knees, and shoulders. Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007. Retired early as a high school principal. Recently, have had trigger finger surgery on both hands as well as surgery for severe bi-lateral Carpal Tunnel disease.
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Edie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Edie Quote  Post ReplyReply Direct Link To This Post Posted: Mar/03/2017 at 12:22am
Wonderful Eileen. We really appreciate the work you are doing.

I have already been approached several times by my doctor informing me of the necessity of cutting or stopping my medication. At least he wants to start weaning me very slowly to avoid withdrawals. Last time we came to the decision to start cutting down 5 mg out of one of the 3 - 45 mg Morphine doses I take a day. Then, after talking with the pharmacist, we found out that because of the doses the tablets come in, that was not a possibility. So he left things as they were for the time being. But I am in constant fear of the day when he will have to start getting very serious about this, and start cutting down my meds in a drastic way.

In the last 10 years I have not had one minute without pain. The medicine I get barely works anymore, but it keeps me out bed and somewhat active. I usually ask my doctor, if I were to quit the medication, what would I do for the pain. His response is that hopefully, with time my body would adjust to the pain, and then I wouldn't be hurting so much. I asked him if I ended up not being able to handle the pain, would it be possible to get the medicine back. He said that would not be possible, because things are no longer up to him.

It is a very scary proposition for me. I hate having to live depending on these drugs as much as I hate living in fear of having them taken away. I really wish there was some other way.

Good luck, and thanks for all you do. I will try to do my part also, by contacting my representatives and bring up the issue. If you have any good suggestions on how to go about that, please let me know, as I am not very knowledgeable in these matters....
Chronic pain throughout the spine caused by osteoarthritis (DDD). Started at neck, spread to thoracic, and lately to lumbar area. Most of my spine is affected by bulges, disc height loss and dehydration, bone spurs, annular tears, foraminal stenosis, probable nerve impingement, and degeneration at end plates and facets.

The disease extends from Cervical C2-3 to C7-T1. Thoracic T4 to T10.
Lumbar T12-L1 to L5-S1.
It is all non operable.

Other conditions
TKR R Knee.
Torn ACL, MCL L knee,
Pain on legs and calves
Deep vein thrombosis
Migraine headaches
Painful spots all over scalp
COPD
Hypertension
Chronic Hyperventilation. Caused by anxiety or stress
Chronic depression and insomnia
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Jeff View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Mar/09/2017 at 6:49pm
Good job.  I got a message to Attorney General Sessions regarding chronic pain.  Will see what comes of it.  I'll definitely lobby for support of funding!
Ankylosing spondylitis & osteoporosis -> compression fractures -> facet & ligamentum flavum hypertrophy-> stenosis -> spinal cord & nerve root compression -> cervical myelopathy & radiculopathy -> bruise & deformation of my spinal cord -> incomplete spinal cord injury -> postlaminectomy syndrome of cervical region. Cervical laminectomy & fusion decompressed my cord but I now have severe chronic pain. Pain meds = Oxycontin, Percocet, Lyrica, Soma, Cymbalta, Voltaren Gel, & Ketamine pain cream. 11 surgeries including 5 orthopedic & 1 neurosurgery.

Please donate to help Chronicpainsite.com continue to help others.
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sara1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sara1 Quote  Post ReplyReply Direct Link To This Post Posted: Mar/12/2017 at 2:41pm
Dick I get 3 months of Fentanyl patches and pain pills when I see my Dr. I have to return the used booklet of used patches but seeing the Dr. every month for stable chronic pain seems like a hassle. Its not right unless your Dr. is concerned about your health on those meds. 

Eileen it would be good if they spent more money in research especially stem cell treatment but in the mean time I hate to see Drs pull people off opiods when there's no effective replacements yet.
I'm glad you have a group to present to the House. Sara 
DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing Neck-reverse Lordosis of c-spine C6-C7 with impingement, numb hand and sore outer elbow. Bursitis to both knees. RN
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Mar/12/2017 at 3:35pm
I'm just about in crisis mode. I saw my Internist of 21 years this week for a knee injury following a fall. She's been treating my CP for the past 10+ years. She said she may have to send me to Pain Management soon---her practice has been told they are being watched for overprescribing narcotics which is crazy as they haven't even taken any new pain patients on narcotics for several years. I'm too old and too worn out to start looking for some PM who will actually prescribe without making me go through useless injections or other procedures, having to sign a contract and pee in a cup. Or refuse me my right to use MMJ per the laws of my State.

It's so bad now that local Oncologists aren't prescribing narcotics for their patients in pain, and my Dr said she can't either. Off they go to PM.

Something has to be done and FAST.

Please everyone read the thread in the MMJ forum-----A Possible Game Changer". It's a tremendous start to be put on national television even though many clinical studies are going on in other Countries. But actually seeing this on TV with real elderly CP sufferers is tremendous.

It's way past time our government funds and researches safe and effective medications for us all. It's way past time for this stigma to go away.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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dbarbeau48 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dbarbeau48 Quote  Post ReplyReply Direct Link To This Post Posted: Mar/13/2017 at 2:23pm
Sara,
Opioids can only be prescribed for 30 days at a time in the USA. I've read where the govt is looking at making it 10 day supplies.
Dick
Five knee surgeries from 1970 to 2000. Knee replacement in 2000.Spinal stenosis surgery in May of 2002. Diagnosed with Pseudogout in 2005, effecting hands, knees, and shoulders. Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007. Retired early as a high school principal. Recently, have had trigger finger surgery on both hands as well as surgery for severe bi-lateral Carpal Tunnel disease.
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Booger54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Booger54 Quote  Post ReplyReply Direct Link To This Post Posted: Apr/04/2017 at 12:46pm
Hi Stevie and All,
     I was just wondering if your situation has changed at all.
Last September, my GP, who had prescribed my pain meds for me for years moved. The last thing he did on the day he left was to fill my Rx with a titration down from 90MME to 75MME them to 60MME. I argued with my new "Doctor" who knew nothing about chronic pain, but it did no good. The last Rx I had was titrating down and off in December. I was in severe pain and sent to see an "addiction specialist" who wanted to put me on Suboxone. She told me, and I had a witness there, that it would help with my pain! I went home, looked it up on Drugs.com, and one of the first warnings was "Not to be used for pain control." So, aside from being treated as an addict, I was also lied to by a "specialist". My PM Dr. saw the Suboxone Rx on file and refused to prescribe for me even after telling him I did not pick it up, nor would I take it because of the Naloxone in it.
     I found some 9 or 10 year old tramadol I had taken for ages until it became ineffective and started using that again. It just doesn't do much at all. So, come evening, I had been in acute pain and basically non-functional at all. I've had to turn elsewhere for evening pain medication which works. 
     That is what the medical field is doing to us. I know a few other people in CP who have had the same happen to them and are finding "other sources" for what they need. The way we are treated (or not treated, I should say) is irrational. This afternoon I'm going to have a discussion with my new GP and tell her exactly what is going on and see if approaching her with common sense, factual information, and CDC statistics, has any impact on her.
Good luck to you Stevie, and to all the rest of you who may be having problems with medication just to be somewhat functional.
"I'm as mad as hell and I'm not going to take it anymore"
Peter Finch - movie "Network"
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Booger54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Booger54 Quote  Post ReplyReply Direct Link To This Post Posted: Apr/04/2017 at 1:06pm
Addendum to above.
                              I was just getting ready to hop in a shower before I went to my 1:15 GP appointment. Her office called and said that she was sick and leaving early. I had to reschedule for later this month. I personally think that she doesn't want to have me as a patient.
We REALLY do need advocacy as the topic of this thread mentions. Much advocacy!
 
In all my years (9 - 10) of taking morphine sulfate, I have NEVER asked for an early prescription for any reason, NEVER taken more than prescribed, all in all, never abused or misused it in any way. Nor have others I know in the same position as I am now. I wish there were some kind of class-action lawsuit for all of us. But who to sue? CDC? DEA? Both and more? ...Booger54 
"I'm as mad as hell and I'm not going to take it anymore"
Peter Finch - movie "Network"
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Kate View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kate Quote  Post ReplyReply Direct Link To This Post Posted: Apr/17/2017 at 12:15pm
I am the same way. Always taken medication as prescribed, never asked for more, and I don't drink alcohol. But I'm treated like a crminal. They have refused to prescribe a fentanyl patch for me which bypasses the stomach and a lot of the liver. At least my liver showes no damage when tested.

When will they have some kind of medicine that works? If we can file a class action suit count me in!

Kate
Pudendal Decompression Surgery 3/14/2011 failed
L3 to S1 all fused Surgery 8/22/2012
Degenerative Disc Disease
Failed back surgery syndrome
Knee replaced
Sero-negative Rheumatoid Arthritis
Fentanyl Patch
Spondylolithesis of back
CRPS
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eileenbunny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote eileenbunny Quote  Post ReplyReply Direct Link To This Post Posted: Apr/21/2017 at 1:25pm
Update:

Sen Leahy has agreed to support inclusion of a new CDMRP program for "Chronic Pain Disorders" for us. He is Ranking Member of Appropriations overall.

Also "the big pain appropriations bill has now been reviewed by Sen Schatz's Legislative Counsel, has been formatted as a real Senate bill, and is still on-track to be introduced next month."

While these are steps that are being taken for the future, it doesn't do anything to address the present, and for now we are without ideas for how to handle this. On the one hand we really do have a paralyzing opioid epidemic, but on the other we have people who are choosing between horrendous pain and suicide.  I hate that people here are in a bad situation like this.  I wish for new solutions faster.
Chronic daily headache without real designation resulting from severe meningitis

Non-hodkins lymphoma survivor since 2003
Ruptured disk at C5-C6
Inferior alveolar nerve damage
Depression, PTSD with dissociative tendencies
I also have some yet to be diagnosed immune deficiency that is causing fatigue and severe joint pain.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Booger54 Quote  Post ReplyReply Direct Link To This Post Posted: Apr/21/2017 at 1:42pm
Great news eileenbunny! I have written to both of my Senators and one to Vermont's Senator Sanders. I know that the latter cares deeply about how our veterans are treated. There is one I know who lost half a leg and has other damage. The V.A. took away his pain medication and that really ticked me off! These men and women put their lives on the line for this country and for the Veterans Administration to treat then like that is reprehensible.
So maybe, just maybe, these senators will get together and do something, but the wheels of government seem to move slowly - unless we have a prescription opioid crisis.
And Kate: I'm still waiting to hear from a battery of attorneys who have been well informed of our situations.
"I'm as mad as hell and I'm not going to take it anymore"
Peter Finch - movie "Network"
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Apr/21/2017 at 3:58pm
Thank you for the update Eileen. It's a great start and we have to start somewhere.

I'm just infuriated by the total lack of facts being presented to the public regarding the opioid epedemic. Because it's NOT due to the patients in daily chronic pain who never misuse their meds. Sure---there are people who become addicted to prescription narcotics--but there are people who become addicted to anything.

I can remember when the government got involved with replacing the ER narcotics with the so called abuse deterrent formulations. Our members became sick from them and found that they weren't very effective. It was shortly after that that heroin once again became rampant in use by those people using street drugs along with other opioids laced with dangerous chemicals. That action harmed those who once again didn't abuse their meds---it just drove those who DO abuse drugs to return to the harmful street drugs that are cheap and dangerous.

It's past time for straight reporting about the FACTS. Let Drs treat their patients and get politicians who don't understand what it's like to live in pain 24/7 out of OUR lives.

"Do no harm". Time to get back to basics and time for our legislators to get educated on the medical facts. Your hard work is so very much appreciated.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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eileenbunny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote eileenbunny Quote  Post ReplyReply Direct Link To This Post Posted: Apr/23/2017 at 10:41am
Abuse resistant formulations were a scam that created this epidemic I think.  It's been a while since I actually dug into the truth, but even stuff like tramodol that is relatively mild and was marketed as completely safe has churned out tens of thousands of addicts due to its unpredictable nature.

It all goes back to money and it makes me sick.
Chronic daily headache without real designation resulting from severe meningitis

Non-hodkins lymphoma survivor since 2003
Ruptured disk at C5-C6
Inferior alveolar nerve damage
Depression, PTSD with dissociative tendencies
I also have some yet to be diagnosed immune deficiency that is causing fatigue and severe joint pain.
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Jeff View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: May/01/2017 at 8:29pm
I've sent letters to US Senators and Congressmen and urged them to no enact wreckless regulations that mimick real solutions but wind up mistargeting the unintended.  They need to prosecute illegal drug dealers and deal with them rather than passing general distribution regulations that have are driving doctors to drop patients and making it impossible for people to move in the United States for fear of not getting a new doctor willing to take the risks imposed by our own government.
Ankylosing spondylitis & osteoporosis -> compression fractures -> facet & ligamentum flavum hypertrophy-> stenosis -> spinal cord & nerve root compression -> cervical myelopathy & radiculopathy -> bruise & deformation of my spinal cord -> incomplete spinal cord injury -> postlaminectomy syndrome of cervical region. Cervical laminectomy & fusion decompressed my cord but I now have severe chronic pain. Pain meds = Oxycontin, Percocet, Lyrica, Soma, Cymbalta, Voltaren Gel, & Ketamine pain cream. 11 surgeries including 5 orthopedic & 1 neurosurgery.

Please donate to help Chronicpainsite.com continue to help others.
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