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19lin
@19lin

Posts: 127
Joined: Mar 22, 2016

Advocating for chronic pain sufferers

Posted by @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

REPLY

Got your message Ms. Colleenyoung. Thank you 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

Liked by facenu, salena54

@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.

@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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Hey colleenyoung it’s briansr. Not brain, it’s been happening all my life
so don’t feel weird!! briansr

@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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@19lin What your trying to do sounds great and alot of work and red tape. If we
can get Mayo Clinic & Hospitals behind us even better. I would like to see
excerpts from our discussions eventually all printed up, since our true
names are unknown, and passed in bulk to Senators, congressmen, the FDA,
the President, hopefully not Dump Trump, and anyone influential in
government. Big wish list I know, but it can be done, anything can be done
if we try hard enough!!!!!

@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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I agree with you. As you say it will be hard and probably not possible thru Mayo web site as it would be to political. Still there are ways, but as with me my disability is enough to keep me from doing more than online support. Still I think online activity can be enough to bring about some action. There are onsite petitions that anyone can set up and send to officials to make them aware of public feelings. Right now taking break to fight sciatic attack. 19lin

Sent from Windows Mail

Liked by teddy69

There is another drug calle mellocam (spelling?) Its likr lyrica, I tried it but was allergic to it. Being in chronic pain and allergic to nsaids is no fun. briansr….

@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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briansr; One journal on pain had studies of suicide being higher than normal in chronic pain suffers, one study showed a rate of 50% and with the establishment trying to limit opioids to only cancer patients and for temporary use it will leave many chronic pain suffers with few options; tough it out, get black market drugs or suicide. This is why I support program like final exit and others who lobby for physician assisted suicide. Only I want it for chronic pain suffers in addition to cancer patients. Some interesting data is coming out of Oregon where assisted suicide has been legal for a little while. One thing is that many terminal cancer patients get the fatal dose of medicine, but they a surprising number do not use it. It seems that having the final control in their hands was enough and they then waited for nature to finish things. I think for anyone having control over your future is more important than any thing else. 19lin

Sent from Windows Mail

@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

Liked by jbyrd, susandenise

@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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Even though I don’t think I could take my life, but then one never really knows…..briansr

@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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This is important what is the bill number in either the Senate or House? It will start with either HR or S followed by a number. If we have that we can write directly to each person and state the specific bill number without it we are just making a general comment to them. 19lin

@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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This is briansr. I wrote to both my senator and my representatives without
the bill number. I just said the bill concerning opiates is going through
Congress and expressed my thought and concerns. They know what bill I’m
talking g about and I got a reply from all. I’ll try to get bill #.

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.

@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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teddy69 I totally agree. 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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