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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: Jan/21/2018 at 12:07am
Denise,

It looks like your article applies to Washington State but I notice you are in Nevada.  Do I have this correct?

Jeff
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.

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Brokenglass View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Brokenglass Quote  Post ReplyReply Direct Link To This Post Posted: Jan/21/2018 at 7:25pm
Hi Jeff yes I am in Las Vegas to be exact. What my concern about that is it would not just effect Washington, and these insurance companies have no bounds. I just came back from pharmacy and on the 8th a medication was 100.00 and today it was 190.00! I have been on an HMO for a long time but this year I changed to a Medicare PPO. there are + and - that comes along with it. This whole thing exhausts me but I know I will get someone to listen. I hope all is well with you     
Denise
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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: Jan/22/2018 at 9:38am
Hi Denise

I’m so sorry your long post was lost. I can guarantee that it wasn’t deleted by John or me as Administrators.

I just googled this bill as it relates to my State of AZ, but it only talks about work related injuries and the ability for pharmacies to substitute medications (narcotics weren’t mentioned).

I honestly hope that you are able to get by for the next few days without having withdrawals—-will your former physician give you enough meds to get by until you see your new PM Dr?

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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Dee19 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dee19 Quote  Post ReplyReply Direct Link To This Post Posted: Jan/22/2018 at 1:43pm
Hello, I am very worried about people in Chronic Pain. I see many pain doctors who are becoming addiction doctors and prescribing Suboxone. It is a huge problem only getting worse.  Did anyone ever see the 2007 Judiciary Committee Testimony of Siohban Reynolds? It appears cutting off pain patients has been planned for over 10 years.  This link is a request to remove 30 mg and and above pain medications. Once the FDA removes this, PROP will go on to all medications. PROP is an anti opioid group that doesn't feel anyone needs pain relief, not even cancer patients.  It is horrifice and people aren't aware of what is happening. If you are getting your medication now, you soon won't be unless we fight back, Please. We can't let them do this.  Please comment to the FDA in the negative or positive. We only have 630 comments. I can't believe there aren't more. Thank you D
https://www.regulations.gov/docket?D=FDA-2017-P-5396
Ankloysing Spond = AS Osteoarthritis of knees and spine, significant effacement of CSF, bilateral Foraminal stenosis, nerve root impingement, knees bone in bone torn meniscus, DDD, lumboscoliosis
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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: Jan/23/2018 at 8:38am
It has finally happened. As of January 1st, my prescription insurance company, Silver Scripts, will no longer cover fentanyl patches. I called the number provided in my letter to find out what if anything I could do. I was given a phone number for my doctor to call to appeal this decision. Hopefully the decision will be overturned. If not, I’ll be in debilitating pain.
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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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: Jan/23/2018 at 11:28am
I’m waiting to see what happens when I attempt to fill my next RX beginning of February at the CVS I’ve used for years. They have taken it upon themselves to limit the amount they will give based upon various factors regardless of what the Dr prescribes. We can look around for different pharmacies but it’s my best guess they will all go the same route.

Then we will be facing what Dick has just been thrown at—-insurance companies denying coverage.

We have a “Wall” on Facebook. Look it up if you are a member there. Same name as the site. Thousands of people visit us but due to personal problems I’ve not had the time to keep up—-please post links there also. We need to get the word out NOW.

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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Dee19 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dee19 Quote  Post ReplyReply Direct Link To This Post Posted: Jan/23/2018 at 12:37pm
Thank you Stevie, I will go there. I'm sorry you are having problems, I can well understand. I just had a cortisone shot for my injured shoulder and am now wishing I hadn't done it. I wish you the best!

Ankloysing Spond = AS Osteoarthritis of knees and spine, significant effacement of CSF, bilateral Foraminal stenosis, nerve root impingement, knees bone in bone torn meniscus, DDD, lumboscoliosis
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Brokenglass View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Brokenglass Quote  Post ReplyReply Direct Link To This Post Posted: Jan/30/2018 at 3:18pm
Hi everyone..it is ok Stevie, it was this nut behind the button I'm sure deleted myself, I hadn't finished writing it, and it has a lot to do with my MIND GOING CRAZY!!!. but I'm back just had to breathe you know the pain med. replacement alone with a shot of too bad too sad wouldn't want be you!! oh there I go again. OK now that's out of my system I can move on to more important matters. Dee thanks for the share on the shoulder as was close to it my self along with spinal injections, and THANK G-D for my new insurance as I can't afford it or the doctor. Ante that a hoot! see I had to find a pain management doctor because stupid me was too rapped up in trying to stop this nightmare. Now I have come to the decision that as my ENDO Doctors says (kids cover your ears) You don't want to be anyone BITCH and what I see is exactly that. so I will be going through rapid detox because I would rather live every day in pain!" I do already" then be part of you have no choice but to sign the papers! was from a Saturday night live skit? someone should remember the good ole days. Now some of what is going on has gotten out to the media, like the NPR has a questionnaire from New York Times wanting to have input on the other side as we are referred as now. Also they will be picking people to interview. I have also been going through back doors and such, and found on the CDC's site the top 10 Leading causes of death, and guess what was not any where to be found! that's right not even an aspirin. Heart Disease was #1, now this was 2014 but this epidemic did not just pop up Right?,  also this was by age group -1 thru 65+. I hope at the very least I made some one laugh. Here is my email if anyone wants to get a viable plan of action together after all who is being noticed! if anyone needs to be heard it is us! so we can be known as PAIN LIVES MATTER. brokenglass57.df@gmail.com if interested shoot me an email and ill give you my phone # because this typing kills. Be well everyone!            
Denise
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Brokenglass View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Brokenglass Quote  Post ReplyReply Direct Link To This Post Posted: Feb/06/2018 at 2:20pm
Hello Everyone, I feel like a dog chasing its tail! I was just about to throw in the towel, when I woke up to an email from a reporter! and she wants to do a piece on what its like for Chronic Pain People are going through. She also went on to say that if I knew anyone else. Jeff I know you said you wanted to jump on board. anyone else I just going to post my # as it is so extremely difficult to type. I'm also in the process of designing T-shirt's to sell in hopes of fund the next leg of this journey. If anyone has idea's of what should the shirts say, or have any desire to join this Fight #702-582-4257 We need to act and Fast as the LIE just got another BILLION in tax payers money.  
Denise
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Quaver View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Quaver Quote  Post ReplyReply Direct Link To This Post Posted: Feb/06/2018 at 2:51pm
Hello to all of you in the US,

I live in the UK. Fentanyl, which is my main painkiller, is becoming increasingly vilified by the media. Last night, on the BBC evening news, there was a big feature about fentanyl. A bereaved mother was telling of her dead son, who died after a fentanyl overdose. The programme emphasised that fentanyl is far stronger than morphine and that a very small amount can kill.

They went on to say that it is given to cancer patients. There was no mention of it being a lifesaver for those of us who suffer from chronic pain. There was no mention of fentanyl patches. 

I knew in my heart that the UK would eventually follow the US and that chronic pain patients here would eventually end up in the same boat as our friends in the US. But I hoped and prayed that I was wrong.

I am allergic to anti inflammatories and could not function without opiate pain relief. Moreover we move house on Friday. That means a new GP. Heaven help me! 


PLEASE DONATE TO CHRONIC PAIN SITE! SO THAT WE CAN CONTINUE TO HELP CHRONIC PAIN SUFFERERS


CPS SUPPORT BRITISH & UK RESIDENT
Severe chronic pain in lower back. Lumbar Spinal Stenosis, Scoliosis, DDD. Hypermobility in ankles caused most problems. Bilateral trochanteric bursitis Osteoarthritis in spine, wrists and hands. Golfer's Elbow. L4-L5 L5-S1 spinal fusion plus cage support and titanium spacers April 2008. Nov 2010, accident in shower caused compression fracture of L2. Missed by A&E. Functional lumbar spine stenosis from herniated disc at L3/L4 July 2015 XLIF discectomy plus XL-TDR very successful! Miraculous improvement in mobility! Hashimoto's syndrome, Depression, High Blood pressure, Fibromyalgia, Raynaud's Syndrome.
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Denny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Feb/08/2018 at 10:50pm
Sorry about that.
That's the president.
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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: Feb/09/2018 at 8:58pm
Yes invite me. Send pm and I'll give u my cell
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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Brokenglass View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Brokenglass Quote  Post ReplyReply Direct Link To This Post Posted: Feb/10/2018 at 5:03pm
Hi Jeff I have been trying to reach you Via email and it keeps returning to me? I have been approached by a reporter, and she wants our story's also our experience on what has been happing to us. I explained that there are a lot of us that are being abused and refused the care that is necessary just to function day today. More over we are being treated like we are the problem, and yet the addict is having the red carpet rolled out for them! how in the world is it ok when states are building safe places for them to shoot-up! This is also for anyone in the group that want's to get involved. this is my cell #1-702-582-4257 She wants to hear from us! THIS IS IMPORTANT!!
Denise
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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: Feb/10/2018 at 6:35pm
Denise——

If this reporter is from the HuffPost, she contacted me via PM wanting a phone conversation. I asked her to kindly write a post to the members asking us specific questions so we could thoughtfully respond, and call her if we want to. Our members privacy is of utmost importance and so we need to leave it to each member how much information they want to share. So far, she hasn’t responded which raises a red flag with me.

If anyone wants her number please PM me. But it’s my hope that we can all respond in writing without giving out our privacy which many need to protect in order to not upset anyone’s privacy with their healthcare provider or insurance company.

Thank you all so much for ongoing work for millions. We must prevail in this absurd atmosphere which only penalizes those of us who have never abused anything.

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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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: Feb/10/2018 at 7:42pm
I'll give her a call.  Please don't share my number beyond this reporter to those who I've given my cell phone.  Also just identify me as Jeff when you do.  I'm sure they could get my information from my cell phone if they really wanted to, but then that'd be their investigation, not me openly giving it away.

However, I'll take the risk to fight this.  In fact, I'm going to see about testifying before Congress, if anyone knows how to do that or wants to join me.

Jeff
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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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: Feb/10/2018 at 7:50pm
PS.  Without going into details, my pain medicine is a life or death matter for me.  I cannot handle the pain without medication.  I have permanent spinal cord damage, inoperable severe stenosis of my nerve roots in my neck, and every major joint in my body is worn out and is either replaced or needs replacing, so I literally cannot get out of bed each day without my medicine.  It allows me to function, and in a true sense, to be alive.
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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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: Feb/10/2018 at 9:56pm
I have learned that the reporter has been out of the office and therefore hasn’t read my PM to her asking her to do a Q&A post for members who don’t want to speak personally to anyone for fears of having privacy violated. So, hopefully we will be hearing from her on the site.

We have had to do everything we can to protect our members over the years to the best of our ability, but absolutely understand anyone and everyone who feels comfortable to talk to her, to do so. I want to thank Denise for her determination and hard work.

Personally, I would love to testify before Congress as not only a patient with chronic pain but as a health care professional. Currently due to personal issues including my mother’s recent death I have been overwhelmed and due to living clear across the country traveling so far isn’t possible right now.

We, as a group however CAN get our voices heard. We still have the “Faces of Pain” on the site. We could sure use more stories and as many posts as possible regarding our absolute need for opioids when all other measures fail. Oh—as an “aside “ did anyone see the report on a national news show last night about the harmful side effects of NSAIDS and acetaminophen when taken long term? That’s our governments answer for us and we have better information regarding long term use of opioids when used appropriately with far fewer side effects. This includes marijuana for which there has never been one reported death of an overdose.

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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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: Feb/10/2018 at 10:16pm
They are full of crap.  I was on Indocin for 15 years and it gave me gastritis, esophagitis, and acid reflux / GERD.  It literally ate me up from the inside.  Now I have to take Protonix twice a day and will need to be followed for that alone for the rest of my life, so great, idiots in government, for a really dumb idea.

Did you hear that our great attorney Jeff Session said we should just take apsirin?  

I
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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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: Feb/10/2018 at 10:17pm
I got the pictures somewhere to show my messed up throat and stomach.  I'll see if I can find them and put on that faces of pain web site.  I'll put my story there too, just help remind me :) as with pain and pain medicine my memory is about as useful as a submarine with a screen door.
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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Bailey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 4:42am
Is this the person you’re talking about?

http://chronicpainsite.com/mb/forum_posts.asp?TID=17289&PID=209463&title=welcome-liviag#209463
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Post Options Post Options   Thanks (0) Thanks(0)   Quote eileenbunny Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 3:51pm
Hi guys,  I'm so sorry I've been absent.  I'm in DC this week to talk about chronic pain and what we need.  Clearly it is a lot as we have lost our rights, our needs and our access to medications.  There's a bill called the Stop Pain Act that is circulating that we are making the big push to get passed that is all about funding research for better pain management treatments and that's really important, but it doesn't fix our problems now, which is really concerning to me. 

I think that we are standing on the edge of a suicide epidemic that is going to replace our opioid epidemic, which really isn't going to go away. People who use opioids to get high are just going to go to the streets to get illegal drugs like heroin and illegal fentanyl, and crime in those areas is going to skyrocket, while those of us with chronic pain are going to be left to suffer while we wait for years for research to catch up with much needed treatments.

Anyway, if you are comfortable, on Tuesday as I meet with legislators, I will be pointing them at our site and at the faces of pain.  I want them at Sessions to see what the reality of this is, and that sucking it up and taking an aspirin isn't the reality of this.  I want them to really understand the depth of the issues.  I want them to understand that minor surgical procedures are not the same living with chronic, daily, sometimes or all the time excruciating pain.  Please post your stories if you haven't. I have numbers and statistics, but personal stories are impactful and important.  I don't know if the damage that has been done can be reversed, but I cannot stand by and not take a few minutes to talk about this as I take these meetings.  I'm devastated by what is happening to you, my family.  I love you guys and want the best for you.
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 Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 4:08pm
Thanks for all your efforts Eileen.
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Post Options Post Options   Thanks (0) Thanks(0)   Quote eileenbunny Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 4:21pm
Also, I forgot to mention, I haven't been reading here a lot, but if there hasn't been any discussion about monoclonal antibodies and large molecule meds yet, there definitely should be. With the advancement of this new realm, there is some promising research and perhaps some hope. Lilly got fast track for FDA approval for Tanezumab and it is definitely something for us to be keeping our eyes on, but there's going to need to be patient demand for more of this type of research.  There's going to need to be patient demand for this med too so that insurance covers it because surely it will be expensive.  It's expensive to produce.  It is very interesting research though.
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: Feb/11/2018 at 4:28pm
@Bailey—-yes. Her name is Livia Gershon and she’s a freelance writer in Nashua, New Hampshire. She has written for HuffPost, The Boston Globe, The Guardian, Vice and others and has a website that you can check out. I’m hoping that she will do a Q&A post here so we can all let her know what we deal with on a regular basis and take a good look at our site.

@Eileen—-you are SO right about the ever increasing real possibility of an increase in suicide rates soaring among legitimate chronic pain patients. We all know that addicts are always going to find a way to support their habits while those of us who have never been abusers will suffer needlessly and resort to illegal drugs or suicide when the pain becomes intolerable. What these politicians don’t understand—-and most of the “normal “ population for that matter, is that none of us ever live a painfree hour of any day even with medications, alternative treatments, exercise and nutrition and I could go on forever. We spend our days trying desperately to have any decent quality of life.

Eileen—-you’re such a wonderful champion of our rights. We all fell in love with you from your very first post, fighting horrible migraines and morning sickness during your pregnancy with Sam. Please use our site in anyway possible to help. I’m so proud of this place. We’ve tried extremely hard to keep our family members protected and safe from bullying and have somehow managed to keep the true “addicts” out of here. So I thank you for your ongoing hard work and time spent in Washington championing for us. I only wish that I could be there with you my friend. Huge hugs and please let us know how it goes!!!!

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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 4:33pm
Eileen—-just saw your last post about this exciting new research. I’m sorry that I didn’t know about this due to so many personal problems in my life during the past couple of years. Please keep us posted and I will be getting caught up on this ASAP

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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 6:32pm
For trusted friends,

I have written my pain story in the Members Only area for review and critique of my draft.  I'd like feedback before I post it on the Open forum, because I am only a few months away from my social security hearing but I don't think anything I say is not documented in my medical records, which I have been meticulous to collect and save because my long term disability company METLIFE prefers that I collect and send them in annually.

Please let me know what you think in my thread. Just look in the Members Only section.
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.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Feb/11/2018 at 8:04pm
Tell me anything else I can to do join the fight.  Should I get an attorney to sue the government over this and start a class action suit?  I would probably be one of those suicides you are concerned about if worst came to worst.  I'm a Christian, am man of deep faith, but if the doctors or government were to take away my medicine I have to have to get any quality of life, I wouldn't be able to bear it.  I would literally be crucified 24/7.  Joint pain, neuropathic pain, inflammatory pain, you name it, I got it, and without medicine, no capability to function or even get out of bed.  No, Jesus would understand.
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Feb/12/2018 at 10:24am
Jeff—-your story is excellent and you may want to share it with the reporter mentioned above. As far as posting it in the Faces of Pain, you may wish to wait putting it up with a picture as others have as your case is so close to being finalized.

You are most likely not going to lose your medications—-I have been assured that I will get my mine filled as long as my Dr is qualified to write for narcotics and follows strict guidelines placed on her by the board of medicine. She has had to turn all of her chronic pain patients over to pain management physicians but has kept me and a couple other patients as I’ve been with her for 22 years. My CVS pharmacy which has instituted new and tough guidelines did fill my last RX and told me that they will continue to do so as I use only them and have for years and have no “red flags”.

Your case is so severe that I can’t imagine anyone refusing you treatment. In all likelihood many of us who have no record of abuse and are long term CP sufferers are going to be OK. That’s what I’m hearing now. It doesn’t mean it won’t change. The real problem I see is what happens to new people who are currently unable to find anyone to help them? This is a crime. I’m worried about the future for thousands.

I’m afraid that unless one of us wins the lottery we will never be able to afford the money required to hire a law firm large enough to take on the Federal Government. I’m sorry for getting political now, but this opioid mess has been given to a completely incompetent person who knows nothing about medicine or chronic pain. Kellyanne Conway. I honestly hope that she will be able to sort out the mess—-time will tell.

That being said, we need to write to our State legislators and those who can attend meetings in Washington like Eileen are the true heroes who will have their voices heard. So when you feel comfortable sharing your story do so. Thank you Jeff

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Feb/14/2018 at 3:41am
Eileen if I can ever help, give me a call.  Send me a PM and I'll give you all my contact information.  I am willing and able to testify before Congress or the Senate or POTUS or SCOTUS.  I am getting a power wheelchair that fully reclines to a zero gravity position and with that, I should be able to take sitting for at least an hour to give my testimony.

Jeff
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote eileenbunny Quote  Post ReplyReply Direct Link To This Post Posted: Feb/16/2018 at 12:10pm
Hi all, I will let you know if there is anything else I find that we can do to advocate.  I hope we find more ways to do so quickly.
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 Jeff Quote  Post ReplyReply Direct Link To This Post Posted: 8 hrs 43 mins ago at 9:59am
Eileen,

See my preliminary "faces of main" in the member's only section.  I'd be glad to support advocacy for us chronic pain patients anyway I can.  The government needs to have a zero tolerancy policy for drug dealers who sell this stuff for kicks and leave the rest of us alone to get the life enabling meds that allow us to at least have some functional value to our families even if minimal.

Contact me by PM and I'll give my my cell number.

Jeff

Jeff
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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