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Oct 22, 2015 - 4 comments
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I officially joined MedHelp in June of 2008. I was on a Medical leave for about two years and returned early 2015. I've just had to time to begin searching for some of the wonderful Chronic Pain Societies and Associations that I often referenced. It saddened me to find that the first one I searched has ceased operating. They were so helpful. They worked diligently to make needed changes for those of us that live with Chronic Pain and the challenges it brings to our lives.
I found the letter they left on their page inspiring - and sad - and a call to arms for all of us that reside in this hostile pain management environment. I've copied it in-part and it reads:
BEGIN
"With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. ...... APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.
Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds -- have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.
As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.
It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.
Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. ....."
END
I'll continue to search the other Pain Societies and Associations that we relied on through 2013. I'll post links as I locate them - and make certain they are still operational.
I found the letter they left on their page inspiring - and sad - and a call to arms for all of us that reside in this hostile pain management environment. I've copied it in-part and it reads:
BEGIN
"With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. ...... APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.
Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds -- have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.
As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.
It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.
Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. ....."
END
I'll continue to search the other Pain Societies and Associations that we relied on through 2013. I'll post links as I locate them - and make certain they are still operational.
Tuck, THANKS so much for this VERY sad information! We appreciate all the help you give us here on MH, especially on the Pain Management Forum! :) Hands down, you give the BEST and MOST INFORMATIVE information that saves us time in having to locate it ourselves. From ALL of us on here, THANK YOU for all the EXTRA time you put in to make our Pain Management Forum the BEST ANYWHERE! ......... Sherry :)
I agree with Sherry. You are such a kind and caring woman who gives her time and knowledge to the people here that are suffering even though most of us know what you go through every single day.
It's so sad and very scary to know there are so many people suffering needlessly. More and more Drs are either letting patients go or not taking any new patients. Tuck, you know what my family has been going through with trying to find a new Dr for my sister. We need either a pain specialist or an RA specialist. I can't tell you have many Drs we called only to be told they would not take her as a new patient, or they would but the only things they would do would be shots and physical therapy. She's had both and they do not work. What does work is pain medication. She has been the perfect patient for almost 25 years and has the records to back this up. We're at the pint of this being critical because her family Dr will not prescribe for her after next month.
I've signed several petitions since we last spoke and so has my daughter. It seems to be the only we might be heard.
Thank you so much for posting this.
It's so sad and very scary to know there are so many people suffering needlessly. More and more Drs are either letting patients go or not taking any new patients. Tuck, you know what my family has been going through with trying to find a new Dr for my sister. We need either a pain specialist or an RA specialist. I can't tell you have many Drs we called only to be told they would not take her as a new patient, or they would but the only things they would do would be shots and physical therapy. She's had both and they do not work. What does work is pain medication. She has been the perfect patient for almost 25 years and has the records to back this up. We're at the pint of this being critical because her family Dr will not prescribe for her after next month.
I've signed several petitions since we last spoke and so has my daughter. It seems to be the only we might be heard.
Thank you so much for posting this.
You both are compassionate, true friends, exemplary humans and I appreciate your kind words. I also know that like me, y'all struggle with Chronic Pain. It's a tough world for us these days.
Remar I so sorry to hear that your sister is still searching for a PMP. If she doesn't qualify, who does - and what hope do the rest of us have?
I thought it was tough in 2010 but it gets worse every year. Almost every day I hear on media the "evils of prescription pain killers." I'm not uneducated or stupid. I know there are conditions that can be effectively treated without long term opiates. I also know that there are malingers, abusers, addicts and drug dealers. If I can recognize that why can't our medical profession, the DEA and FDA recognize the number of Chronic Pain patients that are honest and do require long term opiates. They must believe if they ignore, under-treat and demoralize us we'll cease to exist - or just shut up and go away.
A few months ago I found an article or a study that talked about the increase in suicides and reduction of quality of life in the Chronic Pain (CP) population. It discussed how CP patients were dishearten and felt they could no longer live with unrelenting and uncontrolled CP - so some were choosing to end their lives early. I wish I would have copied it cause I cannot find it now. Instead I find the suicides listed as accidental overdoses, just as the article/study claimed. It said the medical community (etc) was not classifying the deaths nor the frequent ER visits correctly - they felt it was based on the opiate-phobia climate that sadly is prevalent today. But I've talked enough. I could fill my journal with my anger and frustrations - and sorrow for all those that unduly suffer.
There's a popular saying that "suffering is a choice." I've seen it said in our community and other MH forums. I wish I could convince myself that's true and that it's just my frame of mind - but suffering is not a choice - not for most of us - it's a fact. I chose not to be a victim - but I can't chose not to suffer!
It's very unfortunate we lost the voice of the American Pain Foundation. They fought hard for our rights - and to make it a better atmosphere for us. They made spoke loud and often for us. As I visit similar sites I hear the change in "tone" they have taken. They sound like they are leaning towards the opiate-phobic government. I am told that there are "foundations" that still fight for our rights - but they are farther and further apart that ever. One day the pendulum will swing back. I don't think I'll live to see that day but I believe it will happen.
In the meantime we have to be active in our fight to help the pendulum swing. Thanks Remar for signing those petitions. Feel free to pass info on to me and I'll gladly add my name. I know some are just for a certain state - but if they are open I'd love to sign them. We have to be part of the solution.
Hang in there my friends. I love you both.
Blessings,
Tuck
Remar I so sorry to hear that your sister is still searching for a PMP. If she doesn't qualify, who does - and what hope do the rest of us have?
I thought it was tough in 2010 but it gets worse every year. Almost every day I hear on media the "evils of prescription pain killers." I'm not uneducated or stupid. I know there are conditions that can be effectively treated without long term opiates. I also know that there are malingers, abusers, addicts and drug dealers. If I can recognize that why can't our medical profession, the DEA and FDA recognize the number of Chronic Pain patients that are honest and do require long term opiates. They must believe if they ignore, under-treat and demoralize us we'll cease to exist - or just shut up and go away.
A few months ago I found an article or a study that talked about the increase in suicides and reduction of quality of life in the Chronic Pain (CP) population. It discussed how CP patients were dishearten and felt they could no longer live with unrelenting and uncontrolled CP - so some were choosing to end their lives early. I wish I would have copied it cause I cannot find it now. Instead I find the suicides listed as accidental overdoses, just as the article/study claimed. It said the medical community (etc) was not classifying the deaths nor the frequent ER visits correctly - they felt it was based on the opiate-phobia climate that sadly is prevalent today. But I've talked enough. I could fill my journal with my anger and frustrations - and sorrow for all those that unduly suffer.
There's a popular saying that "suffering is a choice." I've seen it said in our community and other MH forums. I wish I could convince myself that's true and that it's just my frame of mind - but suffering is not a choice - not for most of us - it's a fact. I chose not to be a victim - but I can't chose not to suffer!
It's very unfortunate we lost the voice of the American Pain Foundation. They fought hard for our rights - and to make it a better atmosphere for us. They made spoke loud and often for us. As I visit similar sites I hear the change in "tone" they have taken. They sound like they are leaning towards the opiate-phobic government. I am told that there are "foundations" that still fight for our rights - but they are farther and further apart that ever. One day the pendulum will swing back. I don't think I'll live to see that day but I believe it will happen.
In the meantime we have to be active in our fight to help the pendulum swing. Thanks Remar for signing those petitions. Feel free to pass info on to me and I'll gladly add my name. I know some are just for a certain state - but if they are open I'd love to sign them. We have to be part of the solution.
Hang in there my friends. I love you both.
Blessings,
Tuck
You're so right Tuck. I'm getting tired of seeing these programs that only show the bad side of pain medications. They're not talking to true chronic pain patients. Only to people who do not need them and who abuse them. No wonder so many people that do not have chronic pain think that all pain meds should be banned.
It's a fact that so few of us true chronic pain patients get addicted to our meds. And you're right Tuck. I've read a few articles too that talked about CP patients and how the rate of suicide is sky rocketing.There is absolutely no reason for this to be happening when there are pain meds, other kinds of treatments and pain specialists. I mentioned that my sister and I have called countless pain specialist and what they've told us. They will do shots, physical therapy and many other treatments that my sister has already tried but they do not prescribe pain medications. People like you Tuck, Sherry, me, my sister, and millions of other people needs meds because we've all tried other things that do not help. We just want to keep from going crazy, literally, from this pain.
No Tuck, no one chooses to suffer. You were in a terrible accident that almost took your life. The DEA, FDA, government, Drs, and pharmacies should not have the right to tell you that you're only allowed a certain amount of pain meds per day. I'm shocked at the tiny dose you're on considering the accident and your amount of pain. I really don't know how you make it through the day. I know you break down at times. I understand that because I break down myself a lot. I wake up almost every morning with tears streaming down my face. I've been with my sister when she is literally screaming because of the pain. She was finally put on a pretty good med regimen that has worked for awhile now and then she loses her Dr and we're going through hell trying to find her another one.
I will gladly pass the petitions to both you and Sherry. I know Tara found 3 new ones on, change.org. I'm not very good at copying and pasting so I'll have her send them to you.
I love you too my dear friend.
It's a fact that so few of us true chronic pain patients get addicted to our meds. And you're right Tuck. I've read a few articles too that talked about CP patients and how the rate of suicide is sky rocketing.There is absolutely no reason for this to be happening when there are pain meds, other kinds of treatments and pain specialists. I mentioned that my sister and I have called countless pain specialist and what they've told us. They will do shots, physical therapy and many other treatments that my sister has already tried but they do not prescribe pain medications. People like you Tuck, Sherry, me, my sister, and millions of other people needs meds because we've all tried other things that do not help. We just want to keep from going crazy, literally, from this pain.
No Tuck, no one chooses to suffer. You were in a terrible accident that almost took your life. The DEA, FDA, government, Drs, and pharmacies should not have the right to tell you that you're only allowed a certain amount of pain meds per day. I'm shocked at the tiny dose you're on considering the accident and your amount of pain. I really don't know how you make it through the day. I know you break down at times. I understand that because I break down myself a lot. I wake up almost every morning with tears streaming down my face. I've been with my sister when she is literally screaming because of the pain. She was finally put on a pretty good med regimen that has worked for awhile now and then she loses her Dr and we're going through hell trying to find her another one.
I will gladly pass the petitions to both you and Sherry. I know Tara found 3 new ones on, change.org. I'm not very good at copying and pasting so I'll have her send them to you.
I love you too my dear friend.
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