Chronic pain vs. new drug laws....please at least read. It's time we were heard.

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lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 4/26/2012 1:31 PM (GMT -6)   
I'm new here...looking for a forum yesterday and found this on google. I have chronic pain....nerve and muscle. I have alot of experience I wish I didn't have...but anyway it's nice to meet you all.
 
I saw on the new this morning that on the 6:00 news tonight on Columbus channel 4 that FINALLY they will be discussing why cp'ers can't get treatment or have so much trouble.  I went to the site (below) and posted. After a post that said basically all who are tolerant are addicted...so if you take opiods you are addicted? Not the same thing! we know that but the people need to understand that. So I'm going to leave you the links. I hope you can post a comment. We need to be heard and this may be our chance. I posted. I think as Lynne.  I belong to 3 other pain forums.  I posted this to them....
 

This is something you all need to see.  People in pain. People NOT in pain. Leave your comments.  This gives you a chance to be heard. 

Notice the first comment by a woman who thinks all who take opiods are addicts…says addiction and tolerance are the same thing.  Please comment.

I’m going to leave this message on every pain forum I can find.  We need to be heard and this is our chance! 

I believe you have to have a facebook account to comment.  Or write the news commentator.  If you can get the channel (Channel 4 in Columbus) turn in at 6pm.

We need a lot of comments BEFORE the show airs. We need to be heard!

Blessings to you.                

 

go to:

http://www2.nbc4i.com/news/2012/apr/25/thursday-at-6-pm-unintended-consequen-57128-vi-40347/#fbcomments or go to:

http://www2.nbc4i.com/ and put the word ‘pain’ in the search. 
 
Well this is not advertisement or spam...I hope this is acceptable to ask you to see what will be on news tonight....this is legit.  All you hear on the news is about pill mills. NOTHING about cp'ers.  Now it can be our turn...if you chose to comment. If not please still read and tomorrow I'm sure the whole story will be on the same webpage. I sure hope they include our comments.
I've written  to news rooms before..and senators, legistlators...all say 'I'm sorry about this and your condition and wish you well'. but....no OTHER side ...no MY side is ever presented. This is the first time. I do hope this makes a difference and improves our lives.    

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 4/27/2012 6:38 AM (GMT -6)   
I do not have a facebook account and it would not allow me to post this.  If it can be copied and pasted, I would greatly appreciate it.
 
It is not necessary to know who I am...just that I am a person who suffers.
 
I have never responded or posted in any way on Facebook or any other social network (except a chronic pain site) and found this so compelling that I had to put my feelings onto virtual paper.
 
Chronic pain patients come in all shapes, sizes, colors, and socio-economic conditions.  We don't plan to be hurt or to hurt.  We want lives just like other people.  We want to be able to care for our prescious children or to do simple things like bake a cake for a child's birthday party, but often we can't.  The pain is too great.  It does not matter the reason for the pain.  It is there and it is unrelenting. 
 
Pain is something that is very personal to me.  I do not wear my handicaped sticker as a badge of honor.  I am ashamed to need the medications that I do.  I cry tears of PAIN and I undergo extremely painful procedures to find some kind of relief, if there is success.  Pain meds are not the first level of treatment.  They are often the last.  But, they do give me some relief.  Pain is NEVER gone....it lurks just below the the tollerable edge and if you "forget" to take your meds on the schedule your doctor has set for you, it will take over and control every aspect of your life. 
If you are in true pain, you cannot drive, you cannot think...except about getting relief, you cannot concentrate on anyone or anything...except reducing the pain.  Is is really right to expect people to live like this?  Should people have to suffer when suffering can be reduced even slightly by one very inexpensive medication? 
 
I do not think that we should just give out meds to anyone who wants them.  I do believe in X-Rays, MRI's, surgeries, and whatever procedures may help....but do not take away the only thing that allows me to have a life.  I'm not a "junkie"... I'm not a drug dealer... I'm a real person, with real pain and a real family who needs a mother.  We are a two parent home.   Both parents worked very long and very hard for over 20 years, but I was hurt.  It happened.  It was beyond my control.  Should I be punished because someone "thinks" they know better than I how badly I suffer?  That is a personal medical matter...between me and my Doctors.  It is not for someone else to decide.  Most of those wanting to make that decision only turn their heads when they see someone like me shuffling by them in a store or they curse me when I don't walk fast enough or laugh when I start sweating profusely from the pain.  They don't look into you eyes for that would make them see into the soul.....and that is something the do not want to see.

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 4/27/2012 9:07 AM (GMT -6)   
There are several of us here on this forum who frequently write letters to reporters, editors, make comments on articles as well as write letters to everyone we can think of from the leaders of our governments (we are an international community here at Healing Well) through the various state and federal agencies that deal with medication and/or drug issues.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.
Moderator Depression Forum.

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 4/28/2012 12:54 PM (GMT -6)   
I understand Veteran Mom.  But there is no reason to be ashamed. It's out in the open now....we are pain patients. And slowly are educating the world about us.  ALot of prejudice we want to avoid. That's the reason I use a fake name to reply to things like that ...and can still have my say.  People feel safer doing that. I understand why.  I'm sorry for your pain. 
Well at least we did get a blurb on the news. It's a start.  And the official who brought the bill said he knew there would be people who would be hurt. But I read most of the law and it is ok!  I don't care about their rules...as I am a legit patient.  I do worry about the max of meds you can get though. How can they say that? Some need more than others! Do you petition the dea for more? would your doctor? I doubt it. That bothers me. But the step therapy...trying less potent drugs first...well yes! And I did.  I keep proof of that. And it's in my docs records. I've had procedures. My rfa helped alot. Other states do have worse laws than Ohio though. Like I've heard that seattle pushed methodone and alot of people died according to the seattle times. So ...
Well anyway...you aren't alone in not wanting to post there.  But if we are to change things even in another name we will only get change is we teach people what it's about. But again we all have our own feelings about that and choice. We shouldn't be in mental pain along with physical pain so it's important that we do what makes us as happy as possible to avoid any stress. 
Hoping you all are having a better pain day.
     

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 4/28/2012 12:55 PM (GMT -6)   
I have to X out of here...can't find the logout button. :( sheesh.
breathe....breathe..... :)

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/28/2012 1:03 PM (GMT -6)   
 
     LOL...your log off button is on the second dark blue line down clear on the lefthand side. I search for it too,.. every once in a while...and I have been here since 2009! blush
 
 SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Hound-Dog
Regular Member


Date Joined Oct 2005
Total Posts : 183
   Posted 4/28/2012 6:44 PM (GMT -6)   
Maureen with the attitude had best pray that she or someone she loves doesn't end up with chronic pain.Only then will she realize the terrible harm she and others like her have been causing for real chronic pain patients.

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 4/29/2012 7:16 PM (GMT -6)   
SO true!  But it seems for some reason those who discriminate never do learn by having it happen to them. You never hear of that.  Maybe if it does you don't hear because they are too ashamed...?  Could be.  The other thing is people don't even want to speak out WITH A FAKE NAME!  Scared to death the spotlight will end up on them and they will lose their treatment. That is what people say to me.  How sad! To be so scared! 
 
I'm soon to face another drug test. I heard that there is a special test called gas something...I found out about it on samsa a govt site. There are fda approved labs to do this special test that knocks the guess out of it...and the false positives.  I'm going to tell my doc I want that test if I ever fail. God knows I don't even sip wine let alone mistake my meds or take illegal anything.  I'm terrified even of meds I'm on as they are reported to cause false positives. I live in fear and pain.  I try to pray and ask God to take my fear away but I still worry. 
 
 I remember before treatment laying in bed...a major task just to bathe.  My husband bringing me food to the bed. Couldn't even sit on a chair to type...had to do it in bed and twist my neck and back around to see the screen and type.  And I only did that to search for help with my pain. The man on the tv show said he hurt so bad he wanted to cry til he got treatment. I remember laying on the floor and couldn't even breathe it hurt so bad...I took tiny little breaths of air til the attack left me. I prayed to die if I couldn't get help.  On the show they asked the politition if he had thought about what some of these laws could do to people making it hard to get treatment for pain. He said 'oh yes. anytime you bring a major changing law it's bound to have unwanted effects'.  Well that is not an OK answer to me.  Like...for the better good of all' sort of thing. Instead of using his head and making sure we got treatment while the druggies do not. Look...if you have an MRI with part of your spine missing...come ON!
 
I don't believe for a minute a doc would sleep at night turning me away for help....and yet they did over and over and.... It's not the law. It's the doctors.  The law isn't restricting. It says you must try lesser drugs before stronger ones. I agree. It says you can only get a certain amount of meds. I DO NOT agree. Some are tolerant and need more.  I was going to get a drug pump because I couldn't get treatment. Pumpster (yahoo) people told me no...that is not a reason for a pump. It's for people who are so tolerant oral pills don't work anymore. Thank God they told me and I held out and finally now do get some help.  I'm allergic to most antibiotics so repeat surgeries for battery changes etc. wouldn't work for me.
 
When I had my spinal surgery I was told I'd need pain management when I got to my home state. I didn't know what nerve or muscle pain was...or chronic pain. FINALLY I came to understand. So I found a good doc good in RFA's. Got rid of most of the nerve pain. Education is slim out there. Surgeons don't tell you about pain. And what you may need to get rid of it. Thank God for the internet and people like yourselves on forums. How about the poor people who don't have pc's? They lay and suffer and no one helps them. When I see newbies anyplace I make it my business to ask about symptoms and try to get them to the right treatment options. I had no one...finally found a site and one lady took me under her wing and taught me. Then I could get help.
Gee listen to ME going on and on.  I'm sorry.  Well consider this my intro lol  Nice to meet you all.   
 
 
    (edited for eaiser reading) SE wink   

Post Edited By Moderator (Screaming Eagle) : 4/30/2012 7:30:34 AM (GMT-6)


LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/3/2012 1:18 AM (GMT -6)   
The thing I hate most is the looks and comments I get from those at the PHARMACY (working there, not the public) when I go to fill my pain meds. I want to ask "who are you to judge me? You saw me walking in here and I obviously have SOMETHING wrong by the way I'm walking..." I have Cerebral Palsy so my affliction is a little more obvious than others.

I want to say "if YOUR hips DISLOCATED from their sockets and YOU had a muscle imbalance in your back AND muscle spasms EVERYWHERE you would be BEGGING for help..." I deal with pain on a daily basis that would reduce most "normal" people to blubbering idiots and thats WITH pain medication. And I try my best to function...have a relationship, go to college, work at a career...be a productive member of society and help others....

And yet these selfish close-minded people all over the place get on their high-horses and make me feel ashamed and like a criminal or a leper or something....

And you know why? Because when I was born I had a bleed in my brain...a bleed so massive I shouldnt be alive...I WASNT alive...but I was brought back...so here I am dealing with this....and NONE of it I had a single iota of control over.

If they want to crack down fine, if they want testing, fine, but for those of us who legitimately suffer? Give us a break. Walk a mile in our shoes...if you can. Chances are these pigheads wouldn't even make out the door...if they could get the shoes on in the first place....

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 5/3/2012 8:41 AM (GMT -6)   
a thought..
you say 'people make you feel'....
I used to do this also. Now I tell them the truth, they are wrong, then I turn and walk away. Either they will believe me or stay prejudiced and small selfish minded and judgemental. I have no control over their minds.  I give them the information they lack and walk away. Please never let them 'make  you feel'.  You are in the right. Say so and refuse to let their hatred/ignorance infiltrate your mind. They aren't worth it.
 

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/3/2012 9:42 AM (GMT -6)   
It's so sad that Maureen feels that way, I feel pity for her...just that pity...
She probably doesn't have any family or anyone that really listens to her,
so maybe she needs to take things out on others....and we should not fall to
her level...We have to have "Hope" for a better world...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/3/2012 3:45 PM (GMT -6)   
lynneann,

I know that in my mind, but sometimes my heart is another matter. Most of the time I can stay strong and block it out but on a bad day sometimes everything just gets to be too much and it's hard not to let what others say or do get to me a little. I think there's a part of me that's mad at myself for not having any control over my condition, because it was something I was born with, and something I can do nothing about. There's nothing I could have done to prevent it and nothing I can really do to fix it, and that makes me angry at times.

I tend to lean towards anger rather than "emotional pain" because I feel so much physical pain that I guess there's no room for it in my mind, most of the time.

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 5/3/2012 5:49 PM (GMT -6)   
I think we all jump in and out of highs and lows due to pain. One day I'm depressed, the next angry, the next positive, we all go through it and our pain makes it happen. Some suffer more than others too. Let's just all hold each other up...in prayer, in thought, in kind words,
 
And some of us have people and some don't. Some are all alone. Except for us.  Some have great docs and others don't have any meds or procedures to help. God help those people. I was one for almost 2 years...hunting for help..dragging myself from doc to doc and getting humiliated, treated like a druggie, etc etc Even when you do find a reputable good doc it takes time for them to get to know you. Know your condition. Run tests. While you are left in pain.
 
I try to (hey what happened to the font here?...oh well)
I try to have patience and help others. For instance re: muscle pain, I found that standing in front of a jet in a pool. I can get an hours relief afterwards (press/release pt therapy thing)  I am trying it. Praying one time it will last ... forever. Then will only have nerve pain to deal with.
Also today I was able to drive to help a daughter...but at a gas station locked myself out. I can't stand or sit on anything hard...can't sit for long. I had to lay on this filthy floor in a run down gas station and wait for my husband to come and help me. What if I had no husband, no cell phone, no AAA or anyone to help me?  I asked a policeman who said they can no longer assist. For God's sake, what is a person to do? I am lucky I could get help. But in another day...I might not.  I would have been left on the sidewalk after it closed, then who knows?  Killed, raped, jailed?
 
So I try to help others  when I can as you never know when it will be you on the down side of life.  I wake every morning to this pain. Pills and procedures only do so much. And yet there are others in worse shape...I try to remember that. Sometimes I cannot. I can only lay in bed and feel sorry for myself and cry. But I know another day will come that will be some better....and I hold on....
 
Hoping you all are holding on today. One day at a time...
 

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/3/2012 6:04 PM (GMT -6)   
Before I found the wonderful doctor I have today, I had another, who tried to do the best she could be was out of her element when it came to me.

One day, I had to cancel my appointment, and couldn't reschedule with her any time soon, and I needed a refill on pain meds, so I saw the physician's assistant instead.

My regular dr knows I have anxiety when it comes to drs and lets my boyfriend come back into the room with me, this PA did not let him come. She then walked away and I was escorted into the exam room. When she came in, I was sitting down. She flipped my chart to the last page, skipping everything previous, and noticed I was on pain medication. At that time I was ONLY on percocet.

She asked me how many I took a day, and of course I estimated, as some days are worse than others but you never keep track of "monday I took 2, wednesday 3, and thursday 4" you just know what your script is for and you make it work for you. Well, she literally counted out and said "well then you SHOULD have 10 pills left from your last script so I'm going to short you on this one" to which I said "that has NEVER happened to me before...a month supply is a month supply"

So she looked at me and said "Well, if you fail this drug test, and you have no percocet in your system...I will report it and you will be unable to receive any further pain meds from this practice."

So of course I started to cry, I was humilitated, and in pain, and scared. So I was having trouble using the bathroom for the test. She refused to let me leave the room, except to the bathroom, and said if I couldnt use the bathroom within the next few minutes I would not recieve my script.

Which of course...did not help the situation. I ended up calling my bf who was in the waiting room and he talked me down so that I could do what I needed to and got out of there. I never went back.

Its amazing what we go through...

And not once did she bother to read or listen to me when I explained WHY I was on the meds. She assumed I was trolling for pills and that was that.

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 5/4/2012 9:45 AM (GMT -6)   
Some docs and nurses have class and some don't.  I've heard that same message WITH class...the message IS (I think)...take as directed...period.  I know you think you are doing yourself a favor  and the doc will be happy if you can cut down meds a day here or there.  I'm not sure about this but I THINK what they are saying to you is take as directed.
There is a thought that it's better not to chase pain (take when in dire need) but take more regular as directed so pain doesn't flare so high.  I can see that...when I've waited til I HAD to get help, the meds didn't work as well.
Maybe this was what they were trying to say.  And I've given thought to why some nurses/docs act so mean and treat you like a druggie (not you...but patients). 
My therory is that they want a wall between them and you. They can't afford to befriend you in any way (act nice) as they think they will be viewed as compassionate instead of 'on guard'. 
 
I'm trying to rationalize why behavior is such that you feel hated (not you...patients like me).  I've run into people like your PA.  I reacted with hurt. Already in pain and then get insulted!  But with so many people complaining of this treatment I'm wondering what is behind it/why are they acting this way?  Maybe they are under the microscope and feel targeted? 
 
Or is it that they are just mean people! :)    

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16777
   Posted 5/4/2012 1:20 PM (GMT -6)   
I count myself as one of the lucky few who has never had any problems with the staff or the dr. My prior PM dr did random UA's and you always knew someone had flunked theirs by all of the shrieking going on, everyone would hear that person. I was later told he only tested when he suspected the meds were either being abused or sold and he had a talent for weeding those people out. My current dr does not do testing. She says its easy to spot the ones that don't really need medication. I have had two drug screens in my life.

For the ones like what Lexi wrote about, that dr would have received a certified letter from me telling her how the PA acted. Lexi was fortunate that she found another dr.. Far too often we never do any follow up when we have had a bad experience with a staff member. I have no problem telling a dr if a member of his staff was rude to me. I have had a couple situations with staff in a large primary care physicians office and each time I brought it to the drs attn. I pay them, if I am not coming there as a patient or anyone else for that matter, they will not have a job.

I think it takes special people to work in PM just like in oncology. If they don't have that special knack going for them, there will be problems. I am sure it gets old hearing people complain too, I try to remember that one. They hear people complain all day long, plus put up with some undesirable people including the ones they are suspecting of not being honest. I know I would not like to work for a PM dr, lol. Every one should be treated with respect thats for sure.

Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/4/2012 7:14 PM (GMT -6)   
My normal script was for 90 a month. My Dr. told me NOT to take 3 pills a day if I didn't need three a day, and if I need more, to take more. i.e every 6-8 hours as "needed" kind of thing, as long as 90 pills lasted me 25-30 days she was okay with that. She told me she was writing the script for three a day but to use at my discretion, because I get so sick off the meds. She said if I'm not having as bad a pain day then I should not have to subject myself to taking the meds religiously and getting so sick.

So I was doing exactly as directed. The PA was just being....a witch to put it nicely. At that time, my pain was a little more manageable with less medication on some days, so that was the plan.

For me, I have better days and worse days. Even now, I'm on the fentanyl patch with the percocet for breakthrough...some days I need 1 pill for the break through, others I need more. It just depends on my day.

Jacey86
Regular Member


Date Joined Mar 2012
Total Posts : 124
   Posted 5/9/2012 3:46 PM (GMT -6)   
I had an issue about 4 yrs ago that made me feel like I was being a "bad" girl.
My Dr. (regular GP) had been caring for me and prescribing my meds. We both knew that my meds weren't really managing my pain very well. I had discussed with her on many occasions that instead of upping my dose, filling my script 2-3 days early was enough to get me through. She had no problem with it as I would call (giving them 5 days notice) and tell them that I needed a refill.
She also knew our personal situation at home - we had one car at the time and my husband could only make it to the office before 5 pm on certain days to pick up the written script. Again - no problem.

My Dr. was getting ready to go on maternity leave and we discussed how we would handle my meds. She offered to write up my scripts for the next 3 months, but stupid me, so no that's okay, just make sure there are notes in my file of when I fill.

Well - big mistake. The covering PA called me and said she wouldn't fill. I went through my whole conversations with my Dr. - told her to read my chart. She could care less. She said I was picking up 4 days early. Well, that was true, but I wasn't filling them that early necessarily, just picking up. She said she was going to call my Dr. at home.

My Dr. called me and said she would fill, but I needed to go to pain management. It's like she forgot all of our conversations. It made me feel like I was abusing, which I wasn't. I should have had her write the scripts as we discussed.

I found a rheumatologist who immediately said, obviously my pain is not under control. I've been w/him for 4 years now. I hate the stigma attached to pain meds. I also hate what is probably in my records with my other Dr.

What people - Dr.s included need to know is that (at least most of us), don't get any 'high' from our pain medication, we take it because we are in pain and it is not managed sometimes.
The National Pain Foundation reported that only 1% of Chronic Pain patients are actually "addicted" and/or abuse their medication. Yes, I have told my Dr.s this just for their information.

I am angry at those who do abuse because it makes it so much harder for the rest of us who really need medication to give us any sort of quality of life.

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 5/10/2012 5:21 AM (GMT -6)   
"says addiction and tolerance are the same thing."

Possibly the biggest MYTH about chronic pain treatment. Roughly, only about 2 percent of the population using opioid medications for chronic pain will develop addictiom, which is a "drug seeking habbit". To assume they are the same is to say addiction is inevitable and that most patients will resort to abuse. Its a total misconception. Often, addicts are not only drug seekers, but they use the drugs at recreational doses, which are frequently higher than the normal theraputic doses.

The position comes from the ideal that prescription controlled substances are on par with illegal substances. The ideal that they would have abused heroin 20 years ago so now they are getting prescriptions for hydromorphone instead. The problem here is that it assumes #1 that prescription drugs are just as dangerous and addictive as illegal drugs #2 It puts even milder opioids like hydrocodone in the same "red" area as stronger ones, #3 it assumes a large minority using pain medication long term are addicts.

Now to be fair, prescription drug "addiction" is no doubt an epidemic. For those that intentionally abuse medications, no doubt the rate of addiction is much higher than 2 percent. However, to assume most will become addicted from legit medical use is just ignorance. Why? Asside from theraputic dosing, its tolerance itself that makes most of us desire to have a plan in which the LOWEST effective dose is utilized. The higher the dose and the more frequent the dosing, the more tolerance builds. Therefore, since chornic pain is a long term of life time condition, the desire is to continuous have the medication work at maximum efficiency. This again would mean proper dose management to avoid inadequate pain control later where appliciable.
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures helped for months, but pain is up and im having the procedure done again. Currently on 75 mgs of Nucynta (tapentadol - A MOR + NRI) 2 to 3 time per day and Soma 350 as needed.
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