Re: The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at Straws

[Guest guest]

I can certainly relate to his essay. I don't have peripheral neuropathy. I have cervical cephalgia (literally pain in the neck). When it get's really bad, I have a video game that is totally absorbing that I play that takes my mind off it for a little bit. I've been to pain management. You wouldn't believe the degradation one goes through at those places. It is sort of understandable since in the current political climate they are supposed to weed out drug seekers, but really, making someone pee in a cup to show that one has no drugs in one's system so they can put drugs in one's system is bordering on Alice-in-Wonderland land. Fortunately for me, physical therapy and retraining myself to how I hold my neck and head has been about a 90% success. From: Vergel <nelsonvergel@...>Subject: The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at Straws"Pozhealth" < >Date: Thursday, January 12, 2012, 11:42 PM

I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd Regards,

VergelPoWeRUSA.org

[Guest guest]

I see this a bit differently than others have seen it. He's not suggesting any of these are effective behaviors for dealing with the pain of neuropathy; nor is he blaming his neuropathy for causing the behaviors, so much as he is rationalizing these self-destructive behaviors as a outgrowth of the overwhelming frustration of not finding any physical or psychological relief from the torment.I do think he's projecting, and letting himself off way too easily for whichever of these behaviors he indulges in himself. Because I think it's a safe bet there are at least some of them he does. He's just looking for any excuse for why it's OK. >> I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.> > I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.> > http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd > > > Regards,> > Vergel> PoWeRUSA.org>

[Guest guest]

I think that this is totally normal. When you are in pain, mental or physical, and there is something you can do to distract you from that pain even if for a very short period of time, then some people will do it even if there are consequences. Many things that people will do releases endorphins which will make you feel better.

Sousa

---- Original Message ----

From: Vergel <nelsonvergel@...>

Pozhealth < >

Sent: Thu, Jan 12, 2012 6:43 pm

Subject: The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at Straws

I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.

I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.

http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd

Regards,

Vergel

PoWeRUSA.org

[Guest guest]

What a load of horse shit.

I had extreme pain in my shoulder for a couple of years due to a bone spur impinging on the tendon.

I could not reach up without spasms.

My choices were physical therapy or extremely invasive surgery.

I chose the therapy route and that lasted about 2 weeks (too mild).

Since then I have added the physical therapy work into my gym workouts 3-4 times a week.

Extra effort, but it has worked fine and the constant pain has been gone for a while.

No desire to shoplift, drink or gamble.

I took control of it in a healthy manner.

From: Vergel [mailto:nelsonvergel@...] Sent: Thursday, January 12, 2012 11:43 PMPozhealthSubject: The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at Straws

I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.

I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.

http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd

Regards, VergelPoWeRUSA.org

[Guest guest]

In a psychotherapy setting this is often called " telling on yourself " , which helps relieve stress and burden of guilt associated with these normal and studied human behaviors.Nothing abnormal , insulting or otherwise. Please walk a mile in another's footsteps before making such harsh judgements. Compassion towards one another should be the focus here.On Jan 13, 2012, at 11:16, "Jim98122x" <jim98122x@...> wrote:

I see this a bit differently than others have seen it. He's not suggesting any of these are effective behaviors for dealing with the pain of neuropathy; nor is he blaming his neuropathy for causing the behaviors, so much as he is rationalizing these self-destructive behaviors as a outgrowth of the overwhelming frustration of not finding any physical or psychological relief from the torment.I do think he's projecting, and letting himself off way too easily for whichever of these behaviors he indulges in himself. Because I think it's a safe bet there are at least some of them he does. He's just looking for any excuse for why it's OK. >> I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.> > I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.> > http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd > > > Regards,> > Vergel> PoWeRUSA.org>

[Guest guest]

Yes, Jeff. I absolutely agree 100% -- a caring, loving, non-judgemental support group of people, including professionals, friends, loved ones, & family, is essential to coping with life on life's terms & recovery from any life threatening situation, whether that be HIV/AIDS and/or any other illness/disease. Were it not for the support networks in my corner I would not be alive today . . . much less have a reason to be alive. This group being a part of that network . . . gratefully.JonRaleigh9.9.82On Jan 13, 2012, at 2:58 PM, jsousa8946@... wrote:I think that this is totally normal. When you are in pain, mental or physical, and there is something you can do to distract you from that pain even if for a very short period of time, then some people will do it even if there are consequences. Many things that people will do releases endorphins which will make you feel better. Sousa---- Original Message ----From: Vergel <nelsonvergel@...>Pozhealth < >Sent: Thu, Jan 12, 2012 6:43 pmSubject: The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at StrawsI want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd Regards, VergelPoWeRUSA.org

[Guest guest]

Walking a mile in another's footsteps is something the writer might think about doing. My saying he's projecting because he does it himself only sounds "judgmental" because the original writer is, himself, being judgmental.

I see this a bit differently than others have seen it. He's not suggesting any of these are effective behaviors for dealing with the pain of neuropathy; nor is he blaming his neuropathy for causing the behaviors, so much as he is rationalizing these self-destructive behaviors as a outgrowth of the overwhelming frustration of not finding any physical or psychological relief from the torment.I do think he's projecting, and letting himself off way too easily for whichever of these behaviors he indulges in himself. Because I think it's a safe bet there are at least some of them he does. He's just looking for any excuse for why it's OK. >> I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.> > I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.> > http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd > > > Regards,> > Vergel> PoWeRUSA.org>

[Guest guest]

I'm really a bit surprised by folks' strong emotional reaction to this article.

The lay group facilitator in me suspects this could be an indication of the

importance of discussing the issue. If the author did nothing else, he managed

to push some buttons, which might be more of an indication of our own stuff than

his or that of the folks he's writing about.

I don't think the article is perfect. But I find it fascinating that so many

folks seemed to have strong opposing impressions of what it represents. It's

one of those instances when I wonder if we all really read the same article.

When that happens I always go back and read the article more slowly and

carefully.

I did this and clicked on the link to the abstract for the paper he references.

Rather than finding it to be " bullshit, " I find it to be an article about

compassion, empathy, and advocacy, things that I know have been critical to my

own survival living with HIV/AIDS.

I'm very critical about writing, but I found little to complain about. Although

the author is making an observation about an association between unhealthy

behaviors and chronic pain, I don't think he's saying those behaviors are the

solution - or even justifying them.

What I read is a plea for us to

a) be vigilent about our community about how this might manifest in it

recognize that when folks act out, it might because they are suffering, and

that there may be few solutions and fewer good points of access to them

c) speak up about this unmet need and the need to find more solutions

d) be a source of support ourselves for folks in this position.

I also think it would be wrong to make assumptions about the paper without

reading more than the abstract, but I don't have the $36 it costs to access it.

Perhaps someone on the list can get their hands on the full paper and share it.

Have a great week.

mark

Mark Hubbard

Nashville

[Guest guest]

I think that what is vexing about the article is that he claims that there are

some data, without citing any whatsoever, suggesting that people with neuropathy

" self-treat " by running out and getting drunk. Well--I think unfortunately that

MAY be true for some people who are very poor or not linked into to systems of

care. (My brother tried alcohol for his cancer pain before he got smart, sobered

up and got opiates.)

But he writes this as if there is some evidence that this is a widespread

phenomenon. I have been an AIDS activist for 20+ years, and recently as part of

an NIH grant, have been reading LOTS and LOTS of papers about neuropathy. Never

ONE has mentioned, suggested or intimated that because neuropathy treatments are

limited in efficacy that people run out and gamble or even consider smoking

tobacco a viable treatment option.

By contrast, there ARE data about the use of smoked cannabis to manage

neuropathy. Gabapentin (neurontin) may help but this is doubtful since pfizer

was found guilty of fraud for suppressing negative clinical trials data.

Opiates, NSAIDS, possibly vitamin B12, vitamin B6 (but not doses higher than 400

mg/day) and acetylcarnitine (3 g/day) and other interventions may help,

including switching off meds like Zerit (d4T) that may cause/exacerbate

neuropathy.

And there IS a great deal more interesting to be discussed about how we

experience pain and respond to the sensation. To that end, " distraction " is in

itself a potentially useful intervention, e.g., meditative practices, mind

training and the like; that would be interesting to review the data on.

The last paragraph, after sort of more or less " blaming the victim " is full of

excellent questions he doesn't bother to address and an excellent suggestion for

community, support groups and the like which can be also beneficial (and for

which we need funding all over the nation).

Great thread though, thanks everyone for sharing.

M.

[Guest guest]

Agreed this article is insulting & not useful.On Jan 14, 2012, at 1:40 PM, wrote:In a psychotherapy setting this is often called " telling on yourself " , which helps relieve stress and burden of guilt associated with these normal and studied human behaviors.Nothing abnormal , insulting or otherwise. Please walk a mile in another's footsteps before making such harsh judgements. Compassion towards one another should be the focus here.On Jan 13, 2012, at 11:16, "Jim98122x" <jim98122x@...> wrote:I see this a bit differently than others have seen it. He's not suggesting any of these are effective behaviors for dealing with the pain of neuropathy; nor is he blaming his neuropathy for causing the behaviors, so much as he is rationalizing these self-destructive behaviors as a outgrowth of the overwhelming frustration of not finding any physical or psychological relief from the torment.I do think he's projecting, and letting himself off way too easily for whichever of these behaviors he indulges in himself. Because I think it's a safe bet there are at least some of them he does. He's just looking for any excuse for why it's OK. >> I want to have someone correct me if I think this is a bunch of bullshit. Gambling, shop til you drop, eating compulsively? I may believe using opiates and narcotics daily, but this horse shit? No references and no last name. Heck, he may be projecting unto others what he does.> > I find this article insulting. But probably I am over reacting. I am open to comments that oppose my view of this.> > http://www.thebody.com/content/65348/the-lemming-compulsion-or-how-people-with-neuropat.html#commentAdd > > > Regards,> > Vergel> PoWeRUSA.org>