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.

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 ...

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?

I may be the only person to ever have my condition. I'm so fucking lucky.
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.

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.

That is very kind of you... thanks.

Feeling very self-conscious about posting this thread now.

I understand why, but you don't have to. Everybody needs a good rant every now and then.

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?

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?

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.

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.

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.

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.

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.

I have been doing Yoga and meditation for over twenty years, been in pain for a long time, so have been in the pain system for a while.
As for pot, I smoke and do Leary biscuits from time to time, but try not to have it in the house. It helps with nausea and muscle spasms better than anything else (I can't take marinol, it makes me very ill). But, I have a two year old and, mainly, do not like to jeopardize my wife's job due to the fuck-head anti-plant Nazis who like to see people suffer so textile and lumber firms continue to make their profits as they drink their martinis. That is the fact, if you are against medical marijuana you want people to suffer, end of story.
Until recently, I have had a very positive outlook on this, and still know that everyone has their shit, this just being mine... just a bit overwhelmed right now.

I was thinking more on the order of getting folks from other wheel-chair bound groups on board as far as approaching local businesses regarding access ... but some of the support groups may have enough similar issues. They tend to be cliquey, though ... if you're not one of them, particularly, you're the enemy.

I have already experienced that... not so much "enemy" but outsider. At first they will talk about how welcome I am, then never tell me when the next meeting is. Had that with a depression group already, made-up, I later found, of those with mental disorders.

How do you know they don't deal with the same pain levels? Even talking to them about pain, it would be hard to compare because a lot depends on attitude.

They, being older and their pain level increasing over a longer time line, gives them a chance to build a tolerance and acceptance. They probably have a much more modest view of their expected mobility, complacency if you will.

You, however, have apparently had an accelerated increase in pain, plus you have things you want to do, places you want to go. That makes it much harder on you because it's a much bigger obstacle to the life you've been used to.
You may be right but it's worth a shot. They maybe open to discussion on anything and I sure they've all had to deal with being overwhelmed at some point.

Good luck in finding the support you're looking for and remember you've still got us. :thumb:

That was poorly worded, I did not mean to imply that their pain was "less" than mine... just different. I have more types of pain than just that from osteoporosis. I am sorry if it seemed that I meant to belittle their pain... I would not do that, as I live with their pain every day.
Just because they are older does not mean they have been dealing with this longer, my first diagnosis was at 13.
I do hope you are right... and about this group. I recently reached out to a group and was shunned. It was very painful & has a lot to do with how I feel now.

The lady at the osteoporosis group sounded awesome.... I cannot thank you enough for finding this for me.
Not getting my hopes-up yet, but she says that one of their members is a man in his thirties, a cop and another, his dad. She was fine with the fact that I have other issues, says that the all talk about their other stuff. Was happy with my past in meditation and yoga and said they may like to have me talk to the group about it because they are always looking for exercises they can do. Being useful would mean a lot... not getting hopes-up.

Thank you.
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Is your doctor willing to prescribe what you need to live a decent life? Most docs who deal with high levels of pain know the difference between need and addiction.

That is a very general statement that also sounds like a loaded question.
Are you trying to say something else?

I take that to mean that there are some people who fake the level of their pain in order to feed an addiction, but your doctor should be able to see your obvious need for more effective pain medication.

I hope this group works out for you Rkzenrage, it does help to know you're not alone :)

Stormie

My medication and therapy are changed constantly... I get a surgical epidural on Tuesday (sometimes they work, sometimes they do not, but they are always a double-edged-sword, doing long term harm for short-term relief, along with the risk of being put under).

I don't think it was a loaded question...I think it was just intended to encourage you to seek out the strongest stuff you can get your hands on, if indeed you can get your hands on it. No one is suggesting anything sinister.

I can't remember why I was doing it, but a few months ago I was looking for chronic pain resources online...and there's virtually *nothing*. Now *that* is sinister...almost as though someone (the drug companies, perhaps) don't want anyone else mucking about in their playground.

You have a support group right here on The Cellar, man. Use us as you see fit, and don't worry about appearances. You have problems, we have soft shoulders.

I did not accuse, it was a question. I am often asked leading questions with a lot of reasons behind them. I don't know why but people have weird reactions to those in pain.
Strongest are not always best, I don't react to Opiates the same way most do. I cannot sleep on them and they change my personality when on large quantities. I have had very bad experiences with them... more, and more varied than I can say. Most Dr.s won't listen to me and some have given them to me without my consent.

BTW... this group really helps me with my depression, thanks all of you.
Went to my Dr. appt. and he did not lock me up after I told him about my recent "impulses".
He really wants me to address the offer by my local librarian (reading to kids) when we get the new lift for my chair and he is talking about starting a pain group in his practice.
Again, I cannot thank you, Wolf, for helping find another group to try. One that sounds more promising than any that I have spoken to before.
My parents are very happy about it, they are a bit freaked-out about my recent downturn.
I have not discussed it here.

Nope, not trying to ask a loaded question; thought it might be a bit blunt if I asked if your doctor thought you were an addict. Hard to get an idea since I don't know you or your situation well. I know folks who howl about their pain (granted it's probably not like yours) and will rarely get anything for it. If I was trying to say anything it's that there are a lot of people in pain who don't have access to what would help them.

Opiates are often prescribed because they alter the way your mind percieves pain. Your reaction to them explains why the solution is not as simple as getting you more morphine or oxy.

Nurses may be of good help to you. They often see a lot of people in pain and you're far from the only one who has a negative reaction to opiates.

Hope that helps. Medical problems can be extremely frustrating I know.

Well, there's these guys you probably already know about and there are several pain management specialists on staff here.

Perhaps they didn't know that a group might be a welcome addition to their area of practice? Or at least involvement with a therapist specializing in pain management issues?

Been in the pain system for a long time in this area as well as having been a patient to my GP and Osteopath for many years. The main problem with most pain Dr.s is that they are one-trick-ponies. They will try upping my existing meds then what ever their favorite therapy is; epidurals, implant, target injections, etc, etc, etc.... and when I don't jump up and get "well" they get dejected and pawn me off on their PA who usually "doses" me and I end-up sick.
Not getting what I need is usually the opposite of my problem.
This has happened to me, in one form or another, three times so far.
Right now, I am with one who has pawned me off, but is still starting to get a bit frustrated.
However, he is staying with me and I think he is willing to stay the course and take-up the challenge.
The problem, as described to me by my regular Dr.s, is that they are not trained to deal with more than one issue. A pinched nerve, arthritis, one spinal issue... that is what they deal with day-in-&-day-out and what their training was really centered on.
People like me are usually terminal patients and just jacked-up on morphine (which is what I keep trying to keep them from doing)... finding that balance of reasonable pain management and what I am just going to have to live with is really their job. It is a lot of work, not just a visit every three months. It has been a growing experience for him and I have learned more patience with the medical community through this.

Have you tried any combinations yet? High levels of anything (THC, morphine, fentanyl, etc) will always have consequences but if a small amount of something takes the edge off that might allow another drug to work better. One of my favorite past times while on pain meds was to eat hot chilies. They didn't burn near as much yet still boosted endorphins (making me feel slightly better). Hot chilies aren't a magick cure of course but it should illustrate my point.

It really sucks that you have to be on meds for any reason and I wish it were as easy as saying meditate and and eat hot chilies.

I do eat a lot of capsicum, it does help with my arthritis, as well as the vinegar in the hot sauce helping also (with the Ph thing). Mostly, however, just because I was raised in the South and this illness gives me an excuse to eat more peppers and sauce.
You must have missed the pot discussion earlier.

Edit~ The shot of apple cider vinegar a day does actually work for stomach issues and with swelling and arthritis, believe it or not.
Not a cure like the Enquirer and Sun touted in the check-out-line, but a noticeable difference.

I can't speak for arthritis but vinegar did help some stomach issues I used to have too.

It's all a balancing act. How much of how many things can you do while living the best you can.

Just to clarify is it all opiates that give you trouble? Different kinds (codeine vs morphine for instance) use different parts of the plant. it's probably the case the whole group gives you fits but it's not always that way. Opiates are sort of a problem because they work so good. Standard procedure is to just give more and as a result other options / alternatives don't get explored like they should :-/

I do take one opiate, but it is pretty far down from the organic and I can't take it after six or so, or I won't be able to sleep. I have taken more kinds than I like to think about.

Getting a cottle epidural tomorrow (through the tail-bone because I have almost no epidural space)... I Hate them... but not as bad as I feel now.
Still, don't like getting put under and sucks having to have them, the long-term effects, well, they suck.
Think happy thoughts for me, please.
The next few days will be rough, it takes a while for the meds to dissipate and I experience "discomfort" as it compresses my spinal cord.
Edit... after that I should feel better for a while, as long as the weather behaves. Been sucky lately, however, the forecast is good, so I'm getting this for my son's third birthday.

*sends happy thoughts*

*Sends good and happy thoughts to rkz*

Thanks... bout' that time. See ya'.

More happy thoughts on their way to you ...

Apologies for the length of this reply...

Have you tried NLP? (Neuro Linguistic Programming) Quite a few people use it for commercial/corporate purposes, i.e. sales training, interpersonal skills, blah-blah-blah. It has another use, however. It can be used for pain and stress management. Now before you think this is just some kind of commercial...
A short story: I have degenerative arthritis in my spine which, with repeated injuries, caused me to blow out two disks. One merely herniated, while the other ruptured and took a piece of my spine with it. A bone shard the size of a pencil lead was pushed into my sciatic nerve which in turn lit me up like a Christmas tree. I had pain that would give me tunnel vision, knock me out and then wake me back up again, weeping like a damned baby. In addition, I have an unnaturally strong resistance to toxins which unfortunately means that things like pain killers, alcohol, and (gack!) even weed, tend to have dramatically lowered effects on me. (to all those who are about to tell me "you just haven't had good weed" please be aware that Yes Goddamit!, I have! It just doesn't work.) Now, because of all this, I was overdosing on 800mg Vicadin and chasing the OD's with three finger screwdrivers, and this would give me maybe 20 minutes of relief. In fact, I gave myself chemical hepatitis and had to detox so I could have surgery. Doc said I would have killed myself in pretty short order at the rate I was going.
The point of this rambling sob story is that most of the time, I had to grit my teeth deal with it, for months on end. Subsequently, I tried any number of ways to get the pain under control. I ended up using some meditative breathing techniques that, I found out later, appear to fall under the category of NLP. It helped. To be frank, I'm still never without some degree of pain, I just process it better these days.

Disclaimer! - I am NOT selling this. Nor am I specifically endorsing any form of commercial NLP techniques as most of it is promoted as corporate Ra-Ra bullshit. NLP is, as far as I'm concerned a *category* of pain management that has been useful for some. It's worth checking into even if it only manages to point you in the direction of something that helps.

rkzenrage, I feel for you, I really do. I wont offer sympathy, as I know how sour that is when you're going through this kind of stuff, but I will offer you all my best. I'll be rooting for you.

It's a caudal epi. Not cottle. Just FYI

Happy thoughts, RZK. You'll find they're still coming your way when you come to and read this.

Thanks Brianna... it went pretty well, though, as you would suspect, my tail is very sore after having a large needle shoved through the tail-bone. It takes a few days for it to be easy to sit.
Thanks for the heads-up Ridge, had a double-lamectamy (sp?) down there, then had to have my sciatic partially reconstructed. Both discs ruptured, part of the surgery never really healed due to my osteoporosis and other issues. Without the stimulator implant I would not be able to walk at all, even with a cane short distances.
I have practiced Yoga and meditation for over twenty years, it is a large part of my pain management system.

BTW... I appreciate all the support. Feeling much better now. Still a little tender when sitting down.
Tomorrow is a big day for me, after a Dr. appt. my father is loading-up my power chair (says he has the kinks worked out of his lift) and I will be spending the day downtown with friends and my niece. First to the coffee shop then to the cigar store where a good friend of mine just opened his pipe making shop in the back. Really looking forward to it.
Hopefully will break the rut a bit, I need it. Hope the rain holds off, has not lately.

Hope the weather stays good for you for your outing.

My son's third birthday was awesome! Thirty kids with lots of activities, good food and a magician (old friend of mine from acting school).
Took over 100 pics, will have to edit some with just Finn so I can post them... don't want to post other's kids.
We had fishing for cargo that Cranky had dropped, tossing coal into troublesome trucks, train races, a snow avalanche, and lots of toy trains.
In quite a bit of pain now, did too much. Was worth it.
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Edit~ Oh, today is our 14th wedding anniversary, 17 being together.

It looks like you had fantastic fun, rk. I'm not into kids at all but Finn looks fine to me. Sorry to hear about the pain, but it was worth it, right? You seem like a great dad to me.

Destroy!
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Man, that looks like a party Richie Rich would have, in the comics.
Nobody could have been bored. Good job. :thumb2:

That looks like an absolutely fantastic party!! You have a handsome young man on your hands! The Thomas the Tank Engine scaled to his size is about the cutest thing I have seen!!

They got inside and raced them... can't show it, won't post other's kids. There were thirty there. The race pics are hilarious though.
Don't know bout' Richie though, all of our stuff was made from crap from around the house and my friend gave us a HUGE discount.

It's not how much it all cost, it's about how much fun everyone had.

Got it. Thank you. We had a blast!

Man, I still remember Thomas.

I remember, for christmas one year, I guess I was about three or four, what I wanted more than anything else in the WORLD was a Mavis toy. My mother searched high and low for weeks to find one, and finally had to buy one off someone else instead of the store.

Ah, to go back to the days when all I wanted was a 4x2x2 chunk of plastic and metal. Nowadays, I just wanna go home.

Not the cost, the variety of stuff, all with the Thomas the Tank Engine theme. Stuff inside, outside, all over the joint. Costumes, goody bags even a Thomas pinata........amazing. :D

Most of his are wood, those are his favorites.

It looks like an amazing party rkz, it's evident Finn had fun. :)

He did, and on the fourth.
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Swing and sparkler.