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Old 09-09-2010, 07:36 PM #91
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Whenever I enter the NeuroTalk forums I usually notice how many folks are "viewing" a particular forum... and never, not ever, have I noticed the high number of "viewers" I've seen recently in our SOS forum.

And then to see the number of folks that have been reading along with this thread... well, I can only imagine and hope that each is gaining some very valuable insight into this very real human dilemna. Its damn difficult being a human ... isn't it?!!

I really have appreciated how civil, respectful and yes, even careful some of the posts have been written.

David, I completely understand that in your youth you fought a horrible depression demon. I know many are very happy that you continue to fight and you are still with us! Sometimes we must walk in the same shoes before we really understand. I know that you know I understand.

Tom, hand in hand with your physical pain likely comes depression, as so often we have learned here in these forums. I sincerely wish that you are successful in your fight to squash both your pains as each are very real. I apologize if I have missed, in my reading, that you are indeed taking care of your mental health as well. You have a gift with words... and I have said this to a few here (David and Mr. Moi, whom you haven't met, come to mind) - you should be writing about your trials... you have a lot to share and your passion may be what keeps you going through all of this.

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Old 09-10-2010, 02:29 AM #92
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Heart Tom

Quote:
Originally Posted by lebelvedere View Post
Hello, my name is Tom, and I am a proud new member of Neurotalk. I am 66years old. I used to be very active physically, in superb condition; for over a decade, 1989-2002, I worked out religiously in a gym for 3 hours, 3 days per week under the guidance of a former Olympic coach. One hour or so with weights (not heavy -- light, with repetitions), the rest with stretching. I felt great. Before that, from 1974-1986, I jogged 3 1/2 miles, 3 times per week. Terrible pains in the back of my knees forced me to stop. I learned some stretching exercises; the pain went away.

Around 2002, after coming home from the gym, I started having strange pains and weaknesses in my legs (they would suddenly start to double up; I never fell, but came close). I had polio at the age of 8, and spent a month in the hospital -- and years doing physcial rehab. I lived a very normal life. So, I figured I had post polio syndrome, and stopped the gym.

Weakness in both legs; incredible stiffness in the morning; tripping on carpets; difficulty swallowing -- all the usual stuff. My condition worsened. I am now essentially house-bound. Sure, I can go to the supermarket, etc., but I pay a terrible price at night, stiffness, soreness. I have all the classic symptoms of PPS, but also of ALS and others as well. I can't walk to the end of the street without being out of breath. Climbing stairs, well, I have to concentrate on what I'm doing.

I have seen three doctors, including a neurologist who gave me an EMG, and told me that he doesn't know what I have -- but that I have something serious. He is referring me to a rare disease specialist. He also put me on lyrica, which has masked 60% of the pain in my legs, but makes me feel exhausted. I live on the usual over-the-counter pain killers.

I attempted to take my life last year (overdose of StilNox, ambien) because I could feel my body being "boarded up." Beside an intermittent, bad burning pain in my right ankle, I have (sometimes) pains in the center of the palms of my hands: they are definitely neurological and surprised even the neurologist.

Whatever I have, I sense now that it cannot be cured, that I will be in a wheelchair in a few months. For a polio survivor, there is no worse outcome than to be handicapped and become a public charge. Thus, I would describe my present state of mind as a mixture of terror and resignation.

I caught myself last night thinking, "Thank God, there's death." I sense the end is approaching, and that there is no hope for me. Best to get it over with quickly.

My question to all of you out there: they say many diseases mimic PPS and ALS. What, specifically, are those diseases? Thanks ever so much for any information you can supply.
I wanted to bring your introductory post to the forefront.
I wanted to re-read what first brought you here to Neurotalk.....
I wanted to re-evaluate what your condition is

You have captured the hearts of MANY since you posted this new thread only days ago. You have thoughtfully responded and addressed each and every person who have contributed to this discussion and you never ONCE became irate or intimidated. I am inspired by this.
I am also inspired by your very first sentence...... Read it
"Hello, My name is Tom, and I am a proud new member of Neurotalk."

This warms my heart.

Pain is the common bond that brings us all here together....
And I wanted to see exactly what you are dealing with in regard to your health battle.....doctor's care you are under, meds you are taking.....

In my state of (yet another ) night of insomnia, .......it's nice and quiet here about this time of night/morning I wanted to take it upon myself to try and 'get to know you' a bit better.
As you, I also am a proud member here at Neurotalk.....and since I came aboard almost a year ago, I recall my state of mindframe in reaching out into the 'unknown world of cyberspace'..........It was very similar to yours, yet I didn't have an actual "D-Day" set........but I was at the place of wishing my life and agonizing physical pain would just simply stop. NOT wake up!.....
I come from a small community and my condition simply is not comprehended here, so i truly did feel alone and slipping away.
When I came aboard NT and realized there are thousands of people just like me if not worse, it was mind-boggling!

I'm very intrigued that you admitted in one of your most recent posts that you had actually come here with a certain date set as to be your D Day.
I'm hoping you'll share why you had picked that particular date? Is there a significant reason that you wanted it all to end on that particular date?
If not my business, then just say so.

Also, I see that you are taking Lyrica and over the counter pain meds.
If you had a better form of pain therapy, do you think maybe that would make a difference in your outlook?
When I was finally taken seriously and got under a bonified pain specialist care and started receiving the stronger pain meds that my condition required, it began to change EVERYTHING about my quality of life......well, that coupled with the fact that I had landed 20,000 new friends who understood me .....all in my little 15 inch laptop. .........

By getting a decent amount of relief from the constant agonizing, unrelenting burning pain I was able to gain a bit of a new perspective and as I began to feel more and more comfortable posting, I realized that it was doing me a tremendous amount of good to reach out to others and try to lift others up in the way I was being showered with support.......and it all just seemed to take off from there.......

I guess I am just wondering (hoping) you'll perhaps share a bit more about the medical aspect of you.......You are still young (believe it or not) and if a pain doctor were to address your physical ailments more aggressively as you wait to get a more clear-cut diagnosis, do you think this would turn your perception around as you watch your 'D Day' slip farther and farther into your past?

We really are like family here. We laugh together, we cry together, we get angry together......

Just wondering if you'd give me the honor of sharing on the level of one patient speaking to the next.......do you REALLY TRULY feel as tho you are a 'lost cause' ?
I mean really. I'm thinking if we were to put a hypothetical poll together and ask a generalized question as to whether or not we'd still be here if we followed our worn out painstricken minds and were able to turn our switches 'off' during the worst of our battles.......I'm thinking there maayyyy be about 20 members here rather than 20-some thousand.

Well, in closing, I'd just like to say a 'thank you'.
Thank you for letting your D day go by.
It truly would be a very unfortuneate, not to mention sad thing for us to swallow, had you not logged back on to share more of yourself.
At this point in time and 90-some posts and 2,000 reads......it would be a right out LOSS for us to lose you.

There is something very remarkable about you.
Amongst your very multi-dimensional outlook on things and your gifted penmanship......you could really go far in getting thru to people......

So, if you feel inclined, it would be so wonderful if you would just 'talk' about the health aspect that you briefly summarized in your debut post.
Every one of us are aging as we speak. We WILL all die someday.....by whatever means it may be.......
But, while we have our time together right NOW......try painting a picture with your colourful words. At least one that might portray a man getting better pain relief, a man with a future, not as a 'burden', but one who can reach out to others.......?

We would love to get to know more about you.....

ok, i'm done.....

Rae
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Old 09-10-2010, 05:48 AM #93
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wow..very eloquent Rrae...thank you for saying what a lot of us are thinking.
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Old 09-10-2010, 08:21 AM #94
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Quote:
Originally Posted by DMACK View Post
I politely intervene here.........


Most of my posts to this thread Tom............have been to seek redress in the fact , that subliminally you have tried to..........rationalise death by ones own decision.....

if the depressed 20 something, high on drink....kills himself that's....[wrong]

if the more mature person dying of an incurable illness kills themselves [that's OK]

What i have tried to convey and other posters know my thoughts.........

If a passer by.....looks in on this site......be it they are the former or later group..........do you think..............for one moment..............that our messages could influence another persons stance on life/death

I for one know it can have such an impact................[the clue is in the forum name SUVIVORS OF SUICIDE]

..............

Sadly my honesty about my life..has raised areas where i feel this comparison of yours to close for comfort..

........and at that time of my attempted taking of my life, i was a 20 something......drunk...depressed.......[home owner, beautiful wife, 11 month old baby upstairs, well paid job.......................i had everything to live for]..[apparently]

no///////one knew what i thought inside.............no one,,,,,,,,,,,,,,,,,,,,,,,


I claim not to not to know what is in your mind.......and in the end what you decide will be of your own making...............your CHOICE [i have no problem with your choice]

But please do not dress up your condition to be lesser than those who tried and succeeded, and those like me that failed.........but seek hope to survive...........

Who are not ill[enough] to meet a less distatesful demise.................

David

PS

Never did i sugest 343 Firefighters ...........comitted suicide,,,,,,,,,,,,[you know this ...re-read please]

I clearly offered an alternative Sceneario to your debate.............

343 walked in to burning buildings to save life but met death[many went into tower 2, after tower one had collapsed Knowing a possible fate of their own]


200 jointly fled both buildings from desperation and fear..............

neither groups voluntarily chose to take their life [yet both groups could not gaurentee life by their actions]


pps

Quote
Hello, David: Yours is truly a remarkable story. I hope you will continue to share it. So much despair and anxiety, and truth. Justice, too, maybe...



please explain the JUSTICE part please????????????????????????
Hello, David: Thanks for yours. A few points:

(1) "Subliminally" I tried to rationalize death by one's one decision ... well, my arguments certainly seem fairly open, non subliminal to me (at least). However, I will neither confirm nor deny my position here (although I think you know what it is): Waves (and you) correctly note we don't know who is reading these words. Imagine if you made a superb philosophical case saying suicide is O.K., then a depressed teenager read it, adopted it, and committed suicide: how would you feel? I would feel no differently. EVEN IF the case were "correct," then, given that outcome I would still not want to make it.

(2) You sum up my orientation:
"if the depressed 20 something, high on drink....kills himself that's....[wrong]

if the more mature person dying of an incurable illness kills themselves [that's OK]" What I would say, David, is that in both cases, the two people kill themselves, or, if you prefer, "end their own lives."

Now, if the 20 something, otherwise in good health, kills himself, he COMMITS SUICIDE. Whether he was wrong or right, that is a different matter. I'm trying to establish simply what he did, what happened. When I was in the hospital, the psychiatrist asked me what I had done: "I tried to commit suicide," was my answer. He evidently liked what I said, told me to go home. Personally, I see no stigma there; I merely tried to do what EVERYBODY thinks about doing at one time or another.

Now, if an 80-year old with an incurable disease kills himself (let's say by the same means as the 20 something), that person definitely KILLED HIMSELF, ENDED HIS OWN LIFE. But did that person "commit suicide"? I'm not so sure... It depends on how you define "suicide"; I'm thinking of starting another string with EXACTLY that concern in mind, i.e., have people here contribute to building a better definition of "suicide." I disagree with every single definition I've read so far. As I read the comments here, I sense that we view -- define -- suicide somewhat differently.

By the way, I'm not sure the 80-year-old did something that was entirely O.K. -- certainly not 100% so. As I wrote elsewhere, I think suicide has a childish aspect about it, that is, it originates in childhood as a means of (perceived) defense against adults, especially parents: "I'll show you; you'll feel sorry when I'm dead." There's something DESPERATE (as you once stated) about it. I think that even that 80-year-old can't shake off ENTIRELY that childish aspect, as irrelevant as it is to that person's present condition. And so, I don't think taking one's one life, committing suicide, ending one's life can EVER be 100% O.K. -- that's what makes it such a compelling subject.

No, I don't think you or anybody else on the forum would think the 9/11 firefighters committed suicide. Only insurance companies (who don't have to make payouts in the case of officially declared "suicides") would argue otherwise.

Where's the justice in you life? "Justice" is like "suicide": everybody thinks they know what it means -- until they start to define it. People have written books about it ("The Metaphysical Elements of Justice" -- Kant). However, when you shake it all out, maybe what's left at the bottom is the blindfolded statue with the weighing pans. A notion of "equilibrium" is involved in "justice." You who had so much of an incredible LOAD in one pan.. well, that pan hit the floor, didn't it. Then, by its own impact, it ... bounced. You obviously started putting things into the other pan, which is now on the way toward the middle. How far? The other pan is no longer on the floor: that much is clear. Maybe it's best that you CANNOT get rid of everything that's in that pan, your early life, etc.; if you could, the other pan would hit the floor; also you couldn't put anything in it; it, too, would be empty -- then perfectly balanced, but empty, pans would be what's left. Justice, I see, in your amazing ability to carry both pans. There's a lot in both of them. A balance, albeit a precarious one, never definitive.
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Old 09-10-2010, 08:40 AM #95
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Rae,

that was a truly wonderful post... and

Tom,

i am looking forward to your reply...

thank you both for being here and for being who you are.

~ waves ~
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Old 09-10-2010, 09:04 AM #96
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Quote:
Originally Posted by Rrae View Post
I wanted to bring your introductory post to the forefront.
I wanted to re-read what first brought you here to Neurotalk.....
I wanted to re-evaluate what your condition is

You have captured the hearts of MANY since you posted this new thread only days ago. You have thoughtfully responded and addressed each and every person who have contributed to this discussion and you never ONCE became irate or intimidated. I am inspired by this.
I am also inspired by your very first sentence...... Read it
"Hello, My name is Tom, and I am a proud new member of Neurotalk."

This warms my heart.

Pain is the common bond that brings us all here together....
And I wanted to see exactly what you are dealing with in regard to your health battle.....doctor's care you are under, meds you are taking.....

In my state of (yet another ) night of insomnia, .......it's nice and quiet here about this time of night/morning I wanted to take it upon myself to try and 'get to know you' a bit better.
As you, I also am a proud member here at Neurotalk.....and since I came aboard almost a year ago, I recall my state of mindframe in reaching out into the 'unknown world of cyberspace'..........It was very similar to yours, yet I didn't have an actual "D-Day" set........but I was at the place of wishing my life and agonizing physical pain would just simply stop. NOT wake up!.....
I come from a small community and my condition simply is not comprehended here, so i truly did feel alone and slipping away.
When I came aboard NT and realized there are thousands of people just like me if not worse, it was mind-boggling!

I'm very intrigued that you admitted in one of your most recent posts that you had actually come here with a certain date set as to be your D Day.
I'm hoping you'll share why you had picked that particular date? Is there a significant reason that you wanted it all to end on that particular date?
If not my business, then just say so.

Also, I see that you are taking Lyrica and over the counter pain meds.
If you had a better form of pain therapy, do you think maybe that would make a difference in your outlook?
When I was finally taken seriously and got under a bonified pain specialist care and started receiving the stronger pain meds that my condition required, it began to change EVERYTHING about my quality of life......well, that coupled with the fact that I had landed 20,000 new friends who understood me .....all in my little 15 inch laptop. .........

By getting a decent amount of relief from the constant agonizing, unrelenting burning pain I was able to gain a bit of a new perspective and as I began to feel more and more comfortable posting, I realized that it was doing me a tremendous amount of good to reach out to others and try to lift others up in the way I was being showered with support.......and it all just seemed to take off from there.......

I guess I am just wondering (hoping) you'll perhaps share a bit more about the medical aspect of you.......You are still young (believe it or not) and if a pain doctor were to address your physical ailments more aggressively as you wait to get a more clear-cut diagnosis, do you think this would turn your perception around as you watch your 'D Day' slip farther and farther into your past?

We really are like family here. We laugh together, we cry together, we get angry together......

Just wondering if you'd give me the honor of sharing on the level of one patient speaking to the next.......do you REALLY TRULY feel as tho you are a 'lost cause' ?
I mean really. I'm thinking if we were to put a hypothetical poll together and ask a generalized question as to whether or not we'd still be here if we followed our worn out painstricken minds and were able to turn our switches 'off' during the worst of our battles.......I'm thinking there maayyyy be about 20 members here rather than 20-some thousand.

Well, in closing, I'd just like to say a 'thank you'.
Thank you for letting your D day go by.
It truly would be a very unfortuneate, not to mention sad thing for us to swallow, had you not logged back on to share more of yourself.
At this point in time and 90-some posts and 2,000 reads......it would be a right out LOSS for us to lose you.

There is something very remarkable about you.
Amongst your very multi-dimensional outlook on things and your gifted penmanship......you could really go far in getting thru to people......

So, if you feel inclined, it would be so wonderful if you would just 'talk' about the health aspect that you briefly summarized in your debut post.
Every one of us are aging as we speak. We WILL all die someday.....by whatever means it may be.......
But, while we have our time together right NOW......try painting a picture with your colourful words. At least one that might portray a man getting better pain relief, a man with a future, not as a 'burden', but one who can reach out to others.......?

We would love to get to know more about you.....

ok, i'm done.....

Rae
Hello, Rrae: Well, that's quite a post. I think there is a lot of positive energy out there, which you, Rrae, incarnate.

My medical condition in brief: what I have resembles Lyme disease -- but it is not that. I've been tested for it twice. It also resembles Post Polio Syndrome (http://plee.com/pps/ppspamph.htm). ALS, too, in certain ways. My neurologist told me last Monday he doesn't know what I have -- he suspects I was bitten by something -- and has referred me to a top rare disease specialist whose office just called for an appointment (in December). Apparently, there are a number of things running around that resemble Lyme disease and PPS; I did not know that fact a few months ago.

The Lyrica masks the pain well. But the disease is still progressing; it manifests itself mostly in increasing weakness. I huff and puff performing the simplest of tasks -- absurd! Ridiculous! For pain relief, I take loads of paracetamol and ibuprophen. My arthritis specialist gave me a presciption for Artoteck, but I don't like it; it gives me heart burn. And so, a "burning" question for you, Rae: you said you have your pain under control, WHAT ARE YOU TAKING? Thanks ever so much for your response. The Lyrica makes me feel like I'm in the clouds; if I could stop taking it, I would. I've read the horror accounts posted on this site about it; the tradeoff for me, however, would be intolerable pain like I had before.

You asked what I am doing for my mental health? It's right in front of you.

Why did I pick Sept. 9 for D-Day? Because the selection was so arbitrary, random -- that's why. Meaningless -- just like my life itself: and random and so small, so incredibly small, a speck of no importance whatsoever. How's that for a "lost cause"? Useless, like a single grain of dirt. Next time you get into gardening, look at a single piece of dirt in your hand, and wonder...

I'm crying, but it will pass..

20,000 new friends for you! Rrae, look out your small town window and realize you deserve them. Each and every one of them. Every day, in every way...

Bestest,

Tom
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Old 09-10-2010, 09:59 AM #97
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Tom

quote

Why did I pick Sept. 9 for D-Day? Because the selection was so arbitrary, random -- that's why. Meaningless -- just like my life itself: and random and so small, so incredibly small, a speck of no importance whatsoever. How's that for a "lost cause"? Useless, like a single grain of dirt. Next time you get into gardening, look at a single piece of dirt in your hand, and wonder...

I'm crying, but it will pass..


Tom

A Single pebble dropped into an ocean......it still creates a ripple effect until the ripple, creates a wave.........and the waves reach new shores.........

Your life has deeply touched mine..........a grain of dirt.....a mere pebble ........your life has crashed into mine, by chance or fate.....who knows........but now I am.............linked to you by association.....like one grain of dirt we become a field of soil.......one pebble,,,,we become a beach..........

We may not agree...........that's OK..........we may see things for what they are.......we may look for deeper meaning...............

but Tom..........your life and all of its tribulations and consequent deliberations......have touched my soul............

We are not exactly alike as individuals.......& thats what makes us human...........

With sincere & kind Regards

David
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Old 09-10-2010, 10:05 AM #98
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To Tom, Rrae and anyone else who has pain:

I know MANY people who use medical marijuana for their burning pain. It's legal in some states (don't know if you can get it where you reside), but it's quite different apparently from opiates (in that when you take vicodin, and other stuff, you NEVER go to the bathroom like a normal person), but when they use medical marijuana they don't have that problem.

So have you ever tried medical marijuana (or similar items) for your pain?

Melody
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Old 09-10-2010, 01:59 PM #99
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Quote:
Originally Posted by MelodyL View Post
To Tom, Rrae and anyone else who has pain:

I know MANY people who use medical marijuana for their burning pain. It's legal in some states (don't know if you can get it where you reside), but it's quite different apparently from opiates (in that when you take vicodin, and other stuff, you NEVER go to the bathroom like a normal person), but when they use medical marijuana they don't have that problem.

So have you ever tried medical marijuana (or similar items) for your pain?

Melody
Hello, Melody: Thanks for yours. When I was in college I smoked enough marijuana to know about it. I'd just as soon stay away from it, as it slows everything down, makes me want candy, and for me had a few (minor) withdrawal discomforts, mild headache, etc. I can't see being stoned all day, which is what I'd have to do. I do know that for other people it works wonders; in fact, in Mexico, it is the peasant's aspirin.

Tom
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Old 09-10-2010, 05:23 PM #100
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Hi Tom,

I don't post often, I am what is called a "lurker". I accidentally came across this forum and although I have MS and orginally checked out those forums, I have found the "SOS" to be my cyberfamily. I have not been officially diagnosed as having secondary progressive ms. I know that having it "officially" named in my records may affect how my insurance may cover my medications. Although I have significant weakness in my left leg and recently spasticity and have used a cane for years and a scoother for long distances, one of my main problems has been severe pain. I am on 900mg of lyrica, 120mg of cymbalta, 50mg of elavil a day. The pain never really makes it go away, but I can function. I won't go in detail about what function is in my world. I can do that in a another post if you want me to. I also take oxycodone for breakthrough pain which for me is pain so bad I can't do anything. I do smoke marijuana. It does help. I went to a pain management clinic. That's who prescribed the oxycodone. I use to take vicodin, but that didn't help. I have heard nucynta is good for pain. Haven't tried it yet. Would have to go back to the pain clinic-another doctor. The pain clinic also would want me to go monthly to monitor my meds. So far I haven't been back since I got a 90 day script for the oxycodone. They also suggested a neurostimulator which is implanted in your spine. It lasts for 5 years and then you have to get a new battery implanted. They can do a trial to see if it would work. Just thought I'd put my two cents worth in. I have been lurking and following your posts.

I'm glad you joined our family.

Doxie
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"Thanks for this!" says:
Addy (09-10-2010), Alffe (09-10-2010), barbo (09-10-2010), DMACK (09-11-2010), lebelvedere (09-11-2010), Mark56 (09-10-2010), MelodyL (09-12-2010), waves (09-10-2010)
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