Advocating for chronic pain sufferers

Posted by 19lin @19lin, May 8, 2016

@colleenyoung Hi I tried to respond to a message from brainsr which I think was on the general board about sending a private message? I have been having a hard time figuring out how this system works, but then I’m 68 and not the best computer writer even though I have been using them since the seventies or eighties.
I am also a member of the WebMD pain group. Unfortunately that group has kind of fallen apart in large part because there is no regular moderator or menator watching the discussion. It is sad because we had some good discussions there although some people were critical of the others at times and this made some feel they were not wanted on there and others got up set at that.
One thing about the WebMD discussion sites is that their site interactions were a lot easier to use. Once you sign in you could follow the discussion in total or follow an individual. You could easily respond to one person or the whole group or even respond to just one comment and I believe there was a way to connect with a person in private without going to their private email. If possible you might sign on just to see how they operate.

I feel this site is greatly needed by the chronic pain community and you and Mayo’s are providing a very valuable service. While I am still feeling my way around here I can see the good it is doing just by letting the participants vent their feelings. As a retired social worker and counselor I know how difficult it is to facilitate a group. It is even more so on the internet. On WebMD a professional either scientists or medical doctor would offer comments in a general way to help others understand the pain problems. This was greatly appricated by the group as far as I could see.

Aside from the pain I experience I am also an activists for the chronic pain group and try to get others involved in advocating for the group. There is a lot of negative PR on those who missuse pain medicine and there seems to be little balance from pain suffers to ofset that so I try to get people to write their elected officals as well as write comments to articles and letters to the editor to present the other side.

Additionally I support euthanasia and physican assisted aid for those who choose that method. Unfortunately, from the reading I have done in online journals on pain their is already a high suicide rate among chronic pain suffers. As the effort to restrict opioid use continues that rate will probably climb and I have already seen articled about people who could not get pain medicine through legal means doing so in the black market and they paid with their lives as the black market stuff is totally unregulated. This is another side effect of a hasty attempt at stopping opioid use. I can accept someone who is willing to end their suffering permanetly as long as they know what they are doing, but it really bothers me that people are dying without intending too.

I hope I did not bend your ear too much, thank you again for what you’re doing. 19lin

@19lin

@briansr Found some discouraging news in the news.

http://www.theepochtimes.com/n3/2065524-opioid-epidemic-congress-approves-18-bills-to-tackle-problem-but-no-funding/

http://www.theepochtimes.com/n3/2079726-opioid-painkillers-make-pain-worse-and-last-longer-study/

These articles attach opioid use and if true make it dangerous to use. With 18 bills in congress to fight problem it can not be good for users. I would love to see where the money came for the Colorado study? More than one time the study has been bent to the views of the funding source or gov. officials have altered the results to fit their needs. 19lin

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The only thing I can say s that I received a call from us congressman from a Washington-based phone number. The guy was an aide and said these new bills would not affect people that are in true chronic. I told them my story and they said I would be ok. As long as your case is legitimate. The only tthing I worry about is the doctors freaking out.

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@briansr

@19lin Right now congress is proposing a reduction in all opiods to people in general. Thats all doctors and itd on the verge of passing. We need to all write President Obama and get him to veto it until they add in chronic pain patients. I’m going to right now and make a posting on our page for everyone to do it and to tell anyone else to get thecword out fast. Newspapers. Radio stations even television. We can do any thing. That what a keyboard and telephone are for. It has to be quick. Email your senatorsand your representatives on the Federal level. There in every state and I bet a quick google will get the info for the state you live in. If this passes and I loose any meds I will be smoking the biggest hooter that I can roll. Its been 33 years since Ive smoked, and believe me I have no problem restarting. Pobably should not have stopped in the first place! Doubt if I would be taking any pain pills. briansr

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briansr I live in a state where opioids are regulated. I can only get them for 30 days then repeat visit to the doc to prove they are needed. The epidemic of abuse and illegal sales has left legit sufferers out in the cold. I do use the wonderful nurse Mary Jane and she helps greatly but there are still many times that a strong reliever is needed. I wish there was a way to make our senators and all congress experience our pain and see how long they could take it without any relief. We need to keep on them in any event to get the proper wording in so we get exclusions for real sufferers.

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@19lin

@briansr Found some discouraging news in the news.

http://www.theepochtimes.com/n3/2065524-opioid-epidemic-congress-approves-18-bills-to-tackle-problem-but-no-funding/

http://www.theepochtimes.com/n3/2079726-opioid-painkillers-make-pain-worse-and-last-longer-study/

These articles attach opioid use and if true make it dangerous to use. With 18 bills in congress to fight problem it can not be good for users. I would love to see where the money came for the Colorado study? More than one time the study has been bent to the views of the funding source or gov. officials have altered the results to fit their needs. 19lin

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briansr: The knee jerk reaction by everyone is a major concern to me. Just the fact that Congress is making laws will cause Doctors and others to want to restrict use, this has already been seen. Again the need for an objective way to measure pain is critical and the FDA has not approved any as yet. There are methods used in research, but none have been sent to the FDA or approved by the FDA. Also pain is as old as the hills and yet there is no new, better method of pain control that works for a large number of people. Most would agree that current pain treatment is poor, but how much money is being spent on research for better treatment? I can’t help but feel that the knee jerk response of Congress and the medical community will only lead to many more problems and deaths. The trouble is that the gov. like private industry will try to cover up problems rather than bring them to light. Where is the true data on the deaths where pain medicine is restricted? I feel that in pain management it is going to be a long cold winter. 19lin

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@briansr

@19lin Right now congress is proposing a reduction in all opiods to people in general. Thats all doctors and itd on the verge of passing. We need to all write President Obama and get him to veto it until they add in chronic pain patients. I’m going to right now and make a posting on our page for everyone to do it and to tell anyone else to get thecword out fast. Newspapers. Radio stations even television. We can do any thing. That what a keyboard and telephone are for. It has to be quick. Email your senatorsand your representatives on the Federal level. There in every state and I bet a quick google will get the info for the state you live in. If this passes and I loose any meds I will be smoking the biggest hooter that I can roll. Its been 33 years since Ive smoked, and believe me I have no problem restarting. Pobably should not have stopped in the first place! Doubt if I would be taking any pain pills. briansr

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Hi @chefbrown. Welcome to Connect! Thanks for joining our community and sharing your opinions with us. As you can see, this is a hot topic in the chronic pain group, so you’re in the right place. Can you tell us a little more about yourself so other members of the community can get to know you? Are you really a chef? 🙂

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@briansr

@19lin Right now congress is proposing a reduction in all opiods to people in general. Thats all doctors and itd on the verge of passing. We need to all write President Obama and get him to veto it until they add in chronic pain patients. I’m going to right now and make a posting on our page for everyone to do it and to tell anyone else to get thecword out fast. Newspapers. Radio stations even television. We can do any thing. That what a keyboard and telephone are for. It has to be quick. Email your senatorsand your representatives on the Federal level. There in every state and I bet a quick google will get the info for the state you live in. If this passes and I loose any meds I will be smoking the biggest hooter that I can roll. Its been 33 years since Ive smoked, and believe me I have no problem restarting. Pobably should not have stopped in the first place! Doubt if I would be taking any pain pills. briansr

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I was told today, to forget Dr’s. Caring enough to give pain meds, in fear of losing their license, or being sued. Especially if your on disability, medicaid, Medicare. It’s not worth it them. They would rather loose you as a patient, or just ignore your comments to how much pain your in, even though the Mri’s or whatever tests show extreme damage that cannot be relieved with ibuprofen or Tylenol. They don’t care. The reason for all this is the people that get oxy, or why ever pain meds are selling it to kids, other adults who do not need it for up to a hundred dollars a pill. They are the ones who should be in jail. Living in my pain is not going to be a option for me.

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@teddy69

Sad part is Obama, senators, MD’s etc. do not care about ppl at all. It’s like the government is trying to kill ppl off one way or another. And as for chronic pain they def. do not care because we look fine so to speak, but give a drunk/druggie whatever they need. Makes me SICK!!! The government et state laws need to revamp a bunch of crap, et do things diff. Then they wonder why suicide rates are sooo high. When your life changes et not for the good what else you supp. to do.

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The government wants all the baby boomers off the map anyway, like whatever it takes.

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@teddy69

Sad part is Obama, senators, MD’s etc. do not care about ppl at all. It’s like the government is trying to kill ppl off one way or another. And as for chronic pain they def. do not care because we look fine so to speak, but give a drunk/druggie whatever they need. Makes me SICK!!! The government et state laws need to revamp a bunch of crap, et do things diff. Then they wonder why suicide rates are sooo high. When your life changes et not for the good what else you supp. to do.

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Amen!. America’s genocide.

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@briansr

As for chronic pain sufferers who commit suicide. Believe me there are alot more than you think! People are afraid that once mentioned to your pain dr, gp dr, or anyone in authority they will wean you right off your meds in fear of a lawsuit by a family member. Why did you give them this med, etc. Who in deep pain 24/7 hasn’t thought of it??? briansr

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It is sad they (ppl of the medical field) need to start having seminars or even videos on these kinds of things so family members have a better understanding. As a retired nurse I have watched some family members let their dying loved ones suffer d/t they were afraid of the family member getting addicted?? F—- REALLY!!! They are dying let them die in peace for God sakes et pain free. We are more humane to animals then to humans…makes me SICK!!!

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@colleenyoung

@19lin I completely understand the frustrations of usability on the Connect website. We are working hard to improve it. In fact, you will see improvements coming this week and next. They can’t come soon enough as far as I’m concerned. When I first started to direct the redesign of the website, there were so many things I wanted to happen immediately, but I’ve had to learn to be patient. It takes a team. Now I’ve gotten used to the site, so sometimes I am blind to its awkwardness, which makes comments like yours extremely valuable. I’m going to review the WebMD site more closely. I’ve also been impressed with the usability of other online community site that we are modelling. We’ll get there. Thanks for sticking with us. Keep the feedback coming.

On Wednesday, we are publishing a series of “how to” instructions on Connect.

Online groups tend to disintegrate without a moderator or mentor. I love the role of moderator. It’s like being a fly on the wall. I learn so much. Our primary role is to help connect people, foster the conversations and ensure respect is maintained. People can disagree, of course, and this can always be done with respect.

Like you, I believe a group around the topic of chronic pain was sorely needed (pun intended). At this point in time, the focus of Connect is to concentrate on patient-to-patient exchange. We will invite medical provider participation in the next phase of our growth.

Thank you for being an integral, frequent and supportive member of Mayo Clinic Connect.

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Like to know why under some of these comments you can reply et under others you cannot. I accidently hit report d/t I thought it would report/write on here what I had to say. Not like report on someone else et their comment:(

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@briansr

@19lin Right now congress is proposing a reduction in all opiods to people in general. Thats all doctors and itd on the verge of passing. We need to all write President Obama and get him to veto it until they add in chronic pain patients. I’m going to right now and make a posting on our page for everyone to do it and to tell anyone else to get thecword out fast. Newspapers. Radio stations even television. We can do any thing. That what a keyboard and telephone are for. It has to be quick. Email your senatorsand your representatives on the Federal level. There in every state and I bet a quick google will get the info for the state you live in. If this passes and I loose any meds I will be smoking the biggest hooter that I can roll. Its been 33 years since Ive smoked, and believe me I have no problem restarting. Pobably should not have stopped in the first place! Doubt if I would be taking any pain pills. briansr

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some MD’s where I am from don’t even want to give out medicinal marijuana but everyone else in the world can get higher than a kite et who cares:(

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@colleenyoung

@19lin I completely understand the frustrations of usability on the Connect website. We are working hard to improve it. In fact, you will see improvements coming this week and next. They can’t come soon enough as far as I’m concerned. When I first started to direct the redesign of the website, there were so many things I wanted to happen immediately, but I’ve had to learn to be patient. It takes a team. Now I’ve gotten used to the site, so sometimes I am blind to its awkwardness, which makes comments like yours extremely valuable. I’m going to review the WebMD site more closely. I’ve also been impressed with the usability of other online community site that we are modelling. We’ll get there. Thanks for sticking with us. Keep the feedback coming.

On Wednesday, we are publishing a series of “how to” instructions on Connect.

Online groups tend to disintegrate without a moderator or mentor. I love the role of moderator. It’s like being a fly on the wall. I learn so much. Our primary role is to help connect people, foster the conversations and ensure respect is maintained. People can disagree, of course, and this can always be done with respect.

Like you, I believe a group around the topic of chronic pain was sorely needed (pun intended). At this point in time, the focus of Connect is to concentrate on patient-to-patient exchange. We will invite medical provider participation in the next phase of our growth.

Thank you for being an integral, frequent and supportive member of Mayo Clinic Connect.

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Hi @teddy69 Thanks for your comments. The issue with the REPLY button is being worked on as we speak. There will be a reply button after every message in a day or two.

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@briansr

As for chronic pain sufferers who commit suicide. Believe me there are alot more than you think! People are afraid that once mentioned to your pain dr, gp dr, or anyone in authority they will wean you right off your meds in fear of a lawsuit by a family member. Why did you give them this med, etc. Who in deep pain 24/7 hasn’t thought of it??? briansr

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I hate to say this but I don’t remember writing this post in May. My memery is not to good but well, I don’t know. Could someone write and sign my name, or anyone else’s name, and get away with it. The post sounds like me but I sure don’t remember it. Was I even writing at that time?

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@briansr

As for chronic pain sufferers who commit suicide. Believe me there are alot more than you think! People are afraid that once mentioned to your pain dr, gp dr, or anyone in authority they will wean you right off your meds in fear of a lawsuit by a family member. Why did you give them this med, etc. Who in deep pain 24/7 hasn’t thought of it??? briansr

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Hi Brian, indeed you were active on Connect back in May. You joined the community April 6 this year. I’m happy to report that no one, not even the moderators can post a message impersonating you.

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