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Old 06-21-2006, 04:48 PM   #1
rkzenrage
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Any Decent Pain Groups?

I'm not good at this. Don't really know what to say, but I have to do something because I'm losing who I am.
There are no pain groups in my town, which is nuts because I live in Central FL, there are more sick people here than healthy.
All the pain sites I have found on-line are, I just don't know how to put it other than bitch sessions or people talking about their cats.
Perhaps I'm a snob, but I can get that anywhere.
There is no way to really ask for what I'm talking about.
Nor do I want to really discuss this, details, here, now... but I can't do this alone any more... be around people who talk around what is wrong with me.
I hate games.
Don't even know if I'm going to hit send...
Does everyone in chronic pain turn into the crazy cat lady? I can't be the only one who still reads, who still wants to go to rock concerts in my power chair... can I? I can't be the only one who wants to die sometimes.
Who feels like a thing that is sucking the life out of everyone else... I can't?
Perhaps I am.
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Old 06-21-2006, 05:29 PM   #2
limey
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Maybe depression groups might offer what you're looking for? I am not in your position nor have I suffered from depression, but I am close to someone who does, and what you say reminds me of what he describes and acts out I am not saying you are suffering from depression, but the mental pain they feel may be closer to the physical pain you feel in its effects.
Or you could try disease-specific groups where pain is a major factor of the disease? I'm sure that the dwellars here will let you spill as much as you want when you want here, too ...
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Old 06-21-2006, 05:34 PM   #3
wolf
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The Cellar is probably going to be as good as it gets. We are here for you.

On-Line pain groups tend to be populated by women with borderline personality disorder and fibromyalgia. They are worse in person.

Real Life pain groups tend to be similar, and also include a handful of drug abusers with "bad backs" whose insurance companies won't pay for them to go to other types of treatment and want them weaned back to Tylenol after eating Duragesic patches.

What about a support group specific to your condition?
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Old 06-21-2006, 05:35 PM   #4
rkzenrage
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I may be the only person to ever have my condition. I'm so fucking lucky.
Quote:
Originally Posted by limey
Maybe depression groups might offer what you're looking for? I am not in your position nor have I suffered from depression, but I am close to someone who does, and what you say reminds me of what he describes and acts out I am not saying you are suffering from depression, but the mental pain they feel may be closer to the physical pain you feel in its effects.
Or you could try disease-specific groups where pain is a major factor of the disease? I'm sure that the dwellars here will let you spill as much as you want when you want here, too ...
I am depressed. But it is based on dealing with what is happening to me, being ill, having it be progressive and in chronic pain.
I just had some very bad news and my pain level/mobility issues are increasing at a level no one expected. My bones are breaking and the connective tissues are degenerating with a progression that neither my general/osteo and bone specialist has seen in anyone my age. They have no idea why I have almost no testosterone or why I am not symptomatic. Most of what is wrong with me just has to be "accepted"... advanced facets syndrome, very advanced osteo arthritis & tendinitis among other things that would bore you. Recently I had some heart problems related to taking some meds, we have no idea what will develop from that.... it just keeps going and going and going... I used to climb mountains, I was a cowboy, a bouncer... a professional actor... now I watch this room get older and other people play with my son because it hurts to move.
It's just a sea of pain, my ribs are hurting so much breathing hurts.... I don't want to go on right now.
Edit- I do go to a psychologist and my GP and I talk, they don't put me on anti-depressants, just a mild anti-anxiety. They say it is normal to feel the way I do about this and say it is more anxiety and trauma from what I live with every day.

Last edited by rkzenrage; 06-21-2006 at 06:25 PM.
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Old 06-21-2006, 06:30 PM   #5
wolf
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Damn, that sucks. Nothing that I can say relates directly to your experience, and I know that. I can offer prayers and good wishes, which is something that I don't do lightly.
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Old 06-21-2006, 06:33 PM   #6
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That is very kind of you... thanks.
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Old 06-21-2006, 08:14 PM   #7
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Feeling very self-conscious about posting this thread now.
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Old 06-21-2006, 11:25 PM   #8
wolf
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I understand why, but you don't have to. Everybody needs a good rant every now and then.
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Old 06-21-2006, 11:57 PM   #9
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Still kinda' in shock... living in Winter Haven and no pain groups... it is insane. But, it should not surprise me, we also got the worst rating for disabled accessibility and sidewalks for a city our size in the nation for several years in a row not too long ago while maintaining our unbroken chain of Most Beautiful City In America awards.
Not too long ago I was told, this is not a lie, that I was not going to be able to shop at the local JC Penny, because they were not going to be able to have the shirt displays far apart enough for my chair and not enough staff to help me... and he was pissed for having to explain it to me. I just wanted one Guyubara and they are the only store in town that has them in cotton. Wheee... this is fun.
ADA... what is that?
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Old 06-21-2006, 11:59 PM   #10
wolf
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I think it's the American Dental Association. Everybody got nice teeth down there?

If you thrive on that kind of entertainment, you could start making some waves and seeing how much free stuff you end up with ... not to mention the overall benefits to you and others. Got any eager, young television reporters within easy reach?
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Old 06-22-2006, 12:01 AM   #11
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No shit... the concert hall that moved me away from the wheelchair section (balcony seats next to Dita, Manson's Wife) and put me next to the sound board on the floor had not heard of it either.
Ended-up with another broken rib and two weeks in bed that night.
People will get in front of you in line... it never ends.
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Old 06-22-2006, 12:08 AM   #12
wolf
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Perhaps you can hook up with the pxe people (their Florida contact is in Winter Haven,) and the ALS folks, as well as the MS and Spinal Cord Injury groups, and get some local social activism going?

Thoroughly bizzare that you haven't a local pain management support group, seems like there is darn near everything else.
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Old 06-22-2006, 12:29 AM   #13
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Yeah, with my condition being unique, it is very... I don't know.
There are two that sound possible, the osteoporosis group. Though I suspect a group of older women who do not deal with the complexities that I do nor the pain levels, and the spinal cord injuries group. That one just puts me off because of the name... Winners on Wheels... again, I'm going to call, but I suspect that it is not about dealing with illness and pain but specific to dealing with being in a chair and one event that put them there.

Last edited by rkzenrage; 06-22-2006 at 12:36 AM.
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Old 06-22-2006, 08:02 AM   #14
limey
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If there are no suitable groups, when you've tried the leads you have, are you the sort of person to start your own? Maybe you're not alone in wanting another kind of group locally and you could start the ball rolling?
Meanwhile don't feel self-conscious about posting here, as Wolf said, we're here for you, it's what the Cellar's for.
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Old 06-22-2006, 10:11 AM   #15
skysidhe
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rkzenrage



I think what you are looking for are tools or techniques for releaving pain?

I don't know if meditaton would be helpful. Medical marjiuana ? and I am being totally serious. Massage therapy , whirlpools stuff like that.

Since pain is pain,I suggest looking at other chronic pain groups like cancer.



I think you said it right..just accepting can be the hardest thing. I see your inner strength in your posts. You just want to feel better. I understand. I wish for relief to come to you.
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