Searching for others who live with chronic pain and have been impacted by new laws in some states

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#1
Hello All,


My name is Paul, and I have lived with chronic pain that has increasingly restricted my activities over the past 30 years. My condition worsened last summer, and I began a painful therapy that had helped my neck years before. Meanwhile, Colorado was rolling out new narcotics laws that had severe consequences for me, and other people living with chronic pain. Colorado also got on the bandwagon for "Narcotics Free Pain Management," and apparently to that end, some chronic pain patients were forced to have their pain meds cut 10% at a time, even if the current dosing were insufficient.

My PCP continued to prescribed my pain medication since last summer, because of a catch-22 in the new laws that prevented pain management specialists accepting me as a patient. Unfortunately, last month he left his practice, after being diagnosed with leukemia. He is a terrific doctor and human being,
and he was my major health care provider.

The Problem
I have lost the doctor I've seen for over 10 years, and am a chronic pain patient in need of both a new PCP and a new chronic pain specialist. I am very worried. I saw a pain management specialist today, and reducing my meds was at the top of his agenda.

I went through so much agony and sleep deprivation, I am struggling to cope, and appreciate any suggestions, etc.

----
Dr. Thomas Kline has posted 40 obituaries of persons living with chronic pain who took their lives as a consequence of being forced to taper, and unable to endure the daily suffering (and agony) they experienced as a direct result of being under-medicated. See #OpioidCrisis Pain Related SUICIDES associated with forced taper.

Last month, the CDC and FDA both issued statements that the federal opioid guidelines did not apply to long term chronic pain patients, and demanded that tapering be put on hold for an indefinite period of time. See this Scientific American article for a summary: Pain Patients Get Relief from War on Opioids : U.S. agencies warn doctors not to abruptly cut off the medications for long-time users

I feel so battered, that I did not raise the moratorium to the pain doctor I saw today. Does anybody live in Denver and have a pain specialist you like?

I do -not- want to die, but I am at the limits of my endurance, and crumbling internally. When the pain becomes agony, in those moments, I do so desperately want the pain to stop that ending my life seems like a rational option. It is hard right now.

Thanks

Paul
 
#2
Sorry that you're going through this Paul

@Walker @1964dodge may want to comment

It's awful that you're going the pain, but also that you have to feel like you're fighting the system to get treatment.

I don't know if you've tried acupuncture, but treating pain is one of the things it does best. I don't know if that would be covered by your insurance, but if not there are some low-cost options (teaching clinics and community clinics). I can say more about the subject if you are interested.

I hope that things can get better soon
 

1964dodge

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#3
paul im so sorry this has happened to you.i also was on a much higher dose of opiods and was fully functioning. I lived in a pain leve of 2 or 3 and sometimes 0. but due to maine laws I have to be 100 mme , and there are loopholes but one mistake and my doctor is screwed, so I don't push for more. I also had to take that stupid test and go off completely for 30 days, I almost became a statistic. I now live in 5 or 6 range with spikes to 8 or 9 almost everyday for a brief period and rarely I hit 10. I do understand your pain and frustration, and most pain clinics give little or no opioids. keep fighting for at least the minimum pain relief. the genie is out of the bottle and it's going to be hard to put it back in. and yes the suicide rate is extremely high in pain patients. I was sent to a pain clinic, it was a nightmare, I begged my doctor to prescribe again, he is a good man and he did help me. try to find a doctor with enough compassion to help you. anytime you need to talk feel free to talk to me in a message, what you say in private stays that way. mike *hug*console
 
#4
Hi Mike,

Thanks so much for your reply.

Yes, I get that you really do understand truly severe pain. Your life strongly resembles my worst fears!

I don't believe I could return to living like that long term, and I don't know how you do manage it. I lived through many months of 8+ pain on awakening, on days I slept, but I stopped sleeping, and still feel significant cognitive and memory deficits from the ensuing 4 months of severe sleep deprivation. I now know that pain sensitivity increases if sleep deprived. November through February are a blur in my memory, because I wasn't sleeping enough to consolidate new memories.

I want to live, but I just don't think I can stay alive long term living with even more pain. I feel so angry and powerless, and know that I'm another casualty of "unexpected consequences" of poorly written laws.

I fear many more people living with chronic pain may die by suicide before things change for the better. I saw a prospective pain management doctor today, and despite the FDA and CDC asking that doctors temporarily cease reducing chronic pain patients' medications, that was all he wanted to talk about. I had been really excited to learn about the Feds telling doctors to put dose reduction on hold, but this doctor didn't seem to care. I was too wimpy and slow-witted to raise the subject with him.

So, here in the beautiful State of Colorado, the State is "marginalizing" people living with chronic pain to death (pun intended).

I'm going to hide under my pillow now. ;-)

-Paul
 

1964dodge

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#5
chronic pain does zap the life out of us. and you're right there are things that magnify it like lack of adequate sleep, a cold etc. if you do have worse pain as you get older you just have to live with it and try to do your best to have a quality of life worth living. and it's too late the harm is done, it will take at least a couple of years before doctors feel safe again. and all the state laws that were rushed into place will have to be changed. like maine you can't go over 100 mme unless you meet very strict criteria. if my doctor does what the cdc says now he could lose his license. so it will take time to reverse. it will happen and we can thank the doctors who pushed the cdc. i'm trying not to be another statistic. but I have bad days as well. mike
 

Walker

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#6
Hiya Denver
I'm sorry to hear that you're one of the struggling ones with the opioid crisis as it is. It's really messed up that people who really need medication can't get it. I realize that there was an issue over prescribing - I do - and no one wants to see people die because of that but damn, there's a pendulum here and it's gone too far the other way.
I was once on 200 vicodin a month (I'm also in Colorado) but have since moved all the way down to very little. I try a lot of different things before taking the actual narcotics. (We live in CO, we have more choices than some, right?) Once your brain doesn't expect the opiates to be driven into it as often it's allowed to recover somewhat. Meaning, once it doesn't get all those meds you actually don't hurt as much from not getting them - which seems counterproductive but isn't. It made breakthrough narcotics much more effective for me.
Chronic pain freaking sucks. There's never a moment when something doesn't hurt. It's ever present - silently wandering in the background or trampling me down into the bed for much of the day. I think it's one of the largest things that wears the hell out of people here. You might check out some of the posts in the Long Term Illness section a little farther down the forum. It's a bit slow but you might find something interesting there to read.
Come say hi again soon. Best wishes.
 

1964dodge

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#7
I can't say much more than @Walker I could have written it. even driving you to bed, I don't really want to sleep because I slept too much but if the pain is too bad 5 min. sleep is 5 min. I don't feel it. and we have a choice in maine but I need doctor approval. he said he probably would so i'm going to ask. (by law we need to be tested) mike p.s. I wrote some things in pain sections so feel free to message me
 

1964dodge

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#9
Yeah, I dont know what that's about... we're supposed to be tested but I've literally never been tested one time.
I get tested about 4 times a year, only if I go for blood work. so he's not worried about me taking anything he just complys with law. I have a great doctor. mike
 

SillyOldBear

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#10
@inDenver This really sucks Denver. So sorry you are going through it. Our politicians are so short-sighted. They just never look at the entire situation. And here is another time where the abusers get all the attention and the people who are really suffering get the shaft. And like Dodge says, it will probably take a couple of years for them to fix their mistake. You might try writing to your congressmen. At least you will have tried something. I keep wishing one of our big politicos would have a family member go through what you are enduring. Then maybe they would realize how badly they screwed up.
 

DrownedFishOnFire

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#12
Yeah, I dont know what that's about... we're supposed to be tested but I've literally never been tested one time.

Its to prove we are actually taking the pain meds for ourselves not selling them to others or giving it to family members etc. Thats how bad the abuse is right now.
 

DrownedFishOnFire

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#13
Wish there was a machine invented that can prove the pain is there and validates the need for relief.

For now maintaining is essential to keep myself going over here so understand where you are coming from. Some hours I just want to die. So the pain can stop. Its so hard to breathe.

@inDenver

Sometimes I wonder if there is actually something else out there other than pain meds that can cure it. I rather live without pain meds and all of the meds i am on.

I know of a person that is on cymbalta that takes the edge off pain and it helps significantly however she still takes other pain meds when it gets that bad. Have you seen a neurologist?
 

1964dodge

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#16
Sure I get that but why are some people tested monthly while others (me) have been on for *cough* 15 years and never been tested - once?
I think it depends on the laws of the state, and the doctor. my state requires periodic testing and is very strict on doctors that don't comply. my doctor trusts me and knows I don't have an addictive personality so he thinks i'm safe. but besides requirements he has to keep me safe, he knows the pain i'm in and wants to make sure i'm not taking something illegal and unsafe to bring my pain down. even though he can he has never called me in for testing he just has it done sometimes when I have bloodwork done.
 

DrownedFishOnFire

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#17
@Walker

Either am I tested either after solid 3 years on it. However I dont have to take my pain medication on a daily basis when the weather is stable and the maintenance meds are working efficiently.
 
#19
Chronic pain!! The thief of lives, hopes and dreams!!!! I have been in severe pain since fall of 1996. My entire life has changed and people do not get it at all. I could not survive without narcotics but this ridiculous "crisis" has made my dosage a lot smaller than it is now. I physically do not feel as well as I used to a few years back. And now the pain clinic is attacking my breakthrough pain meds, I used to have a script for 60 five mg. pills a month, now I only get 30. And I know that in the future they will take those away as well. Life sucks. Pain sucks.
Most people do not understand pain at all. Although I do have to be fair and say the NP at my pain clinic is understanding because he also has pain....neck pain. The first person who has been sympathetic and understanding in this journey through pain. He apologizes and then cuts my dose down...I don't blame him but I blame the government and do not see that the pendulum will ever swing back towards normalcy. This crisis is so stupid!!! I hate being treated like a child who cannot control her own medication!!! I cannot even discuss how much depression I have because I do not want to lose my pain pills. I have been supplementing with medical marijuana and it does help, but I do not think I can ever switch over completely, my spinal pain is too severe. At least I still am able to get narcotics every month but it is scary to see the dosage go down. When I was on oxycontin I got through each day a lot better than I am now. What is ahead as I age and grow older? I have terrors of being in a bed in a nursing home, crying for meds, suffering with this pain and getting no help. And my grown children will most likely not help me at all. Of course this is all speculation but also how my mind works...worrying about the future and only seeing the worst...but I can't help it.
 

1964dodge

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#20
I do understand, and I know how bad pain can be. and I know how serious you are when you say that you can not live without the narcotics, i'm the same way I already told my wife and doctor that it would be the last straw. protect the right to have narcotics. if what they are doing is harming you tell them and keep telling them. I had a very bad experience at the pain clinic and my doctor started prescribing my narcotics himself. and of course i'm only at about 25% of what I used to be on. and chronic pain can make you sick,tired and depressed.oh I started that special med Monday and it helps me a lot. mike
 
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