Discussion Chronic pain sufferers and the ever-changing laws

xtcgrrrl said:
Grassroots advocacy works if enough people not only believe in it but act on it. But how do we *get to* that “enough?” It starts with a few. My parents have been activists all of their lives. My father is the co-founder of the New Jersey Green Party. He knows that, within his lifetime, likely none of the candidates they put forth will successfully be elected to office. But with each election cycle, more and more people become disenfranchised and disgusted with having only 2 choices, bad and worse. People like you and me, who dislike the Democrats for their hypocrisy and their lies, but hate the Republicans even more for wanting to drag us backwards by 50 years.

Grassroots democracy starts with a highly motivated minority. Any efforts made in the very beginning may fail, yes. But if you never try, you definitely WILL fail.
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There's an organization called don't punish pain that has protested at multiple state capitols 1 X per month.

Seems to have not come back since covid.

Check r/chronicpain on reddit they might have information on protests.

The problem is most basically disabled people can't got out and protest and do long drives because it will make the pain way worse.

There was a guy recently that had just had spine surgery and was in severe pain after and they gave him no opioids, he CA back to the hospital and committed a mass shooting and also got his own doctor.

I followed the comments on fox news after the story and they were actually pretty in line with "see what happens when you make pain meds illegal, etc." Fox has a much older audience so they get it.

Fox ran a 3 part special a few years ago in the issue to highlighting the suicides etc. It's the one thing I like about Fox.

Liberal media seems to be on the side of "dont prescribe anyone anything or they will flood your kids school with rainbow fentanyl....besides weed cures everything."

There's a journalist from Orlando Florida for the major local news station named Matt (something I forgot)...his channel has covered the issue several times too.


It would be great to get drug policy alliance to take up the issue...the major chronic pain advocacy groups have done Jack shit besides take large donations.
 
xtc girl
Im sorry you have fibromyalgia; and I don't think I have it but after a severe whiplash injury I have had trigger points galore possibly multiple myalgias, or myofascial pain syndrome, with chronic fatigue. Don't know what is wrong exactly; never quite bounced back from that accident, and have had three cervical surgeries and now have cervical instability which I believe is connected to my condition, but good luck telling a doctor why you hurt where and how you do. but my doctor slapped fibro dx on me so that I could have lyrica covered by my insurance.
I sure didn't mean to minimize anyone else's condition or understand what that must be like for you either. Feeling sore and tired and lousy is a miserable condition by any name; good luck to you.
 
If my social anxiety wasn't so bad, I'd go sit on a street corner with a huge sign & protest. lol
But then I'd probably also be putting a nice fat target on my back to be harassed by the pigs too. Especially being the singular oddball out.
I know not much will probably come of anything I do, but I feel like I have to do something, my "soul" feels compelled to.

It's either that or myself & anyone else struggling just lay down & die basically. A part of me also wants to accept the latter & hopefully expire soon.
I hope to see something change in my lifetime.
Only other thing I can think of is procuring opioids through the use of manifestation & ritual magic. But I also might be a little crazy. lol

I had a dream the night before last & my sister that passed away was in it. And we were in some strange apt building waiting for one of my old dudes to let us in so I could get heroin (She didn't know my friends either back then btw, hell I hadn't seen my sister in prolly 10 years before she died). But the guy didn't come through. And so my sister started pulling all of these pain pills out of her purse & handing them to me. And I remember saying "omg are these real???" and she was like "yeah, take em!". And then I woke up. My sister died from alcoholism/liver failure in real life. She also use to take a lot of pills. I never got to spend much time with her or even speak to her in her final years. And I haven't had a dream (or at least one I could remember) in 2 years. So I was pretty disappointed when I awoke & realized I was still in this shitty reality & that it'd just be another stupid day for me. I actually felt good & excited in my dream, I would have loved to of gone right back into it. lol
 
dreams are like pressure relief valves. I don't know what happens when I expire; so I continue to soldier on, day after day, as being in pain and harkly able to move is one thing I know; being dead is another experience Im pretty sure I only get to do once. love seeing my kids do well, sometimes the meds are enough to function, So long as I get them I want to live as well as I can, without traumatizing those close to me, make now friends if I can and maybe someday there will indeed be a "Cure for Pain" that aint just Morphine!
 
lolis my thesis said:
xtc girl
Im sorry you have fibromyalgia; and I don't think I have it but after a severe whiplash injury I have had trigger points galore possibly multiple myalgias, or myofascial pain syndrome, with chronic fatigue. Don't know what is wrong exactly; never quite bounced back from that accident, and have had three cervical surgeries and now have cervical instability which I believe is connected to my condition, but good luck telling a doctor why you hurt where and how you do. but my doctor slapped fibro dx on me so that I could have lyrica covered by my insurance.
I sure didn't mean to minimize anyone else's condition or understand what that must be like for you either. Feeling sore and tired and lousy is a miserable condition by any name; good luck to you.
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I feel like fibromyalgia is a catch-all for a whole bunch of different things that doctors don’t really understand

That being said, I do have a theory (it’s not mine, really, I’m fairly certain I read this elsewhere but I can’t remember where) about what fibromyalgia is: my fibromyalgia developed after many years of chronic pain, so I had the idea that perhaps the nerves become overly sensitive after sending pain signals to the brain constantly for so long. And they start to signal the brain about pain with no cause; there’s no injury to the body, but the nerves indicate that there is because the body is now on “high alert.” People think that being in pain all the time would raise your pain threshold; speaking physically only, it actually does not, it does the opposite. It can cause hyperalgesia (high sensitivity to pain) because your body’s pain receptors or nociceptors become damaged.

Interestingly enough, continuous use of opiates can also cause hyperalgesia. That is why, after a while, your opiate medication will cease to be effective at the level you’re prescribed, and you will need to increase your dose. However, low pain THRESHOLD is different from pain TOLERANCE, which is more of a mental thing.

I have used an app called Curable to attempt to manage my pain; it gives you different mental strategies to try. All brain is manufactured in the brain, although the nerves send the signals. But we know that pain is in the brain because, in a true emergency, you often won’t feel a severe injury until later. Imagine you are in the woods chopping down a tree, and the ax slips and you badly injure yourself. Sometimes you don’t feel the pain, or ALL of the pain, until you look down and your mind registers how badly you are injured. Now, imagine that right after this, you notice a bear, and it starts coming your way. You would run, right? Well, while you’re running from the bear, your brain will dampen your sensation of the pain of the injury. It recognizes the greater threat to your well-being is the bear. You won’t feel the full extent of the pain until you stop, at which point your brain will attempt to bring your full attention to the injury again. Basically, curable gives you methods to control your perception of pain so that it becomes more manageable. It does seem to work to some extent. Scientists have done studies that show that saying “ow” when one is doused with ice cold water helps improve one’s tolerance of the pain of it. But pain is still very poorly understood by doctors, and their approach to different patients with the same pain is highly individual and influenced by prior bias. My own pain management doctor “doesn’t believe” in fibromyalgia! 😑

Btw Lyrica is especially helpful for fibro, how has it been working for you?
 
xtcgrrrl said:
I feel like fibromyalgia is a catch-all for a whole bunch of different things that doctors don’t really understand
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I can't deny that couldn't be reality. Even if there is "real" fibromyalgia.
It wasn't too long ago when scientists also found out there are two (2) parkinson's disease with clearly different pathologies and developments.
That being said, there are also surprising symptoms in chronic fatique syndrome, that have nothing to do with what the name of the condition implies. So, I guess there is also "real" chronic fatique syndrome.
Let's remember, diagnoses are only as good as professionals making it-starting from the people making up the whole ICD and DSM-systems.
 
DeathIndustrial88 said:
If my social anxiety wasn't so bad, I'd go sit on a street corner with a huge sign & protest. lol
But then I'd probably also be putting a nice fat target on my back to be harassed by the pigs too. Especially being the singular oddball out.
I know not much will probably come of anything I do, but I feel like I have to do something, my "soul" feels compelled to.

It's either that or myself & anyone else struggling just lay down & die basically. A part of me also wants to accept the latter & hopefully expire soon.
I hope to see something change in my lifetime.
Only other thing I can think of is procuring opioids through the use of manifestation & ritual magic. But I also might be a little crazy. lol

I had a dream the night before last & my sister that passed away was in it. And we were in some strange apt building waiting for one of my old dudes to let us in so I could get heroin (She didn't know my friends either back then btw, hell I hadn't seen my sister in prolly 10 years before she died). But the guy didn't come through. And so my sister started pulling all of these pain pills out of her purse & handing them to me. And I remember saying "omg are these real???" and she was like "yeah, take em!". And then I woke up. My sister died from alcoholism/liver failure in real life. She also use to take a lot of pills. I never got to spend much time with her or even speak to her in her final years. And I haven't had a dream (or at least one I could remember) in 2 years. So I was pretty disappointed when I awoke & realized I was still in this shitty reality & that it'd just be another stupid day for me. I actually felt good & excited in my dream, I would have loved to of gone right back into it. lol
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I know what you mean, about dreams. I used to dream about things that I wanted to have happen, and then be bitterly disappointed when I woke up. But I was also pretty depressed during that period of time, so there wasn’t anything for me to look forward to when I woke up. Now I have a lot to be excited to wake up to; I have hopes and plans, and I’m eager to start the day (well, not right away, but after I have my coffee I am 😜)

I don’t think it’s necessary to physically protest; one can still “make a difference” by writing to our elected officials and donating money to causes and volunteering one’s time in an organizational capacity, online even if not in person! Letter-writing campaigns have been shown to be effective to some extent…I have gone door to door to get signatures on a petition before, that’s another way to contribute. Kratom is surprisingly still legal, which goes to show the strength of the kratom lobby; in 2016, a bipartisan group of congressmen asked the DEA not to ban kratom, for the reasons that it is a safer alternative to traditional opioids. But who is behind these efforts? Activists who labor on behalf of the kratom industry, trying to keep this relatively harmless drug legal. And it works.

Lol at ritual magic! Doesn’t your body produce it’s own version of opioids, called endogenous opioids?? Maybe you could try to cudgel your body into producing more!! Just manifest it 😆
 
xtcgrrrl said:
Interestingly enough, continuous use of opiates can also cause hyperalgesia. That is why, after a while, your opiate medication will cease to be effective at the level you’re prescribed, and you will need to increase your dose. However, low pain THRESHOLD is different from pain TOLERANCE, which is more of a mental thing.
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There is a large subset chronic pain patients who become quite combative when this fact is pointed out to them.

I think it’s just a reactive instinct after so many years of opioids being demonized, but I still think the mindset is something that those people ought to lose for the benefit of the movement

Granted, I primarily see this on twitter, and twitter is almost always combative lol
 
thegreenhand said:
There is a large subset chronic pain patients who become quite combative when this fact is pointed out to them.

I think it’s just a reactive instinct after so many years of opioids being demonized, but I still think the mindset is something that those people ought to lose for the benefit of the movement

Granted, I primarily see this on twitter, and twitter is almost always combative lol
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My pain comes in huge cycles and and waves...then I'm fine again. I taper down or off of opioids during this time and when it gets horrible I rampant the dose up.

This is why my tolerance never increases and the same dose still works for the same pain level half a decade later


Also on this topic of "pain meds aren't effective for mong terms pain managment"

I posted a thread in r/chronic pain listing about 20 or 30 scientific papers concluding the exact opposite. You should be able to find it by searching but I will try to find and repost here
 
LucidSDreamr said:
Also on this topic of "pain meds aren't effective for mong terms pain managment"

I posted a thread in r/chronic pain listing about 20 or 30 scientific papers concluding the exact opposite. You should be able to find it by searching but I will try to find and repost here
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i didn't mean to imply that long term opioid use can't work for some, or even that opioid induced hyperalgesia is all that prevalent

but there are still some people who will experience it. all those studies still don't chnage that fact

even if rare, opioid induced hyperalgesia does occur. why deny this reality that some chronic pain patients face?
 
Wow - the UK prescribes less than 10% of the opioids (per capita) than the US NOW. Cancer is the ONLY illness which allows doctors to freely prescribe opioids. Beyond that, the necessity is 'unacceptable suffering'. No definition of what it actually means. I physically couldn't get out of bed some days and so after only 20 years and much effort on the part of my wife, the doctor was upset to be cornered into prescribing oxycodone.

The odd thing is that the doctors who have seen my X-rays all say 'oh...' and then 'yes, I will give you the medication'. But they are not happy. But the only one to read my case history is open to giving me MORE. She's has, I suppose,, realised that I'm not likely to live for long enough for me to run out of TI.

Let's face it - it's not a problem being dependent on opioids as long as they aren't directly responsible for your death. I mean, people with epilepsy don't need to keep having seizures before they prescribe, do they?

But UK doctors ARE concerned about anything they prescribe ending up on the street. It happens. But it really is a tiny proportion - less than 1%. But clonazepam and such end up on the street much more... but it's epilepsy, so no question of prescribing.
 
thegreenhand said:
i didn't mean to imply that long term opioid use can't work for some, or even that opioid induced hyperalgesia is all that prevalent

but there are still some people who will experience it. all those studies still don't chnage that fact

even if rare, opioid induced hyperalgesia does occur. why deny this reality that some chronic pain patients face?
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Oh I know you weren't implying that it just woke my memory to that post I made.

Yea I have hyperalgesia for sure it's a regular effect. I also have suicidal levels of pain that hit me when I was off opioids for 16 months. I'll take pain relief with some hyperalgesia.

Having to keep raising a dose of a drug isn't a valid excuse to make someone disabled or go kill themselves so i don't get why anti opioid people try to even make that an issue....let me bash their lower back in with a baseball bat and tell them they can't have opioids because they will just get hyper algesia, they'll change their mind right quick and not give a fuck about hyperalgesia
 
Well - the odd thing is that UK doctors now think oxycodone is a SAFER option than codeine! They are happy to go up and indeed beyond 400mg/day.

But this cannot last. You have to keep on eye on the news in case the media decides that the UK has an 'oxycodone epidemic' which is when you go to the doctor and ask for something different. Equipotent, but different.

A US friend makes a living defending US doctors and pharmacists who are accused of overprescribing.... and I KNOW that they actually have serious pain issues themselves.

I've seen people in the US swapped from OxyContin to Opana to LevoDromoran in the space of 6 months - just the doctor staying ahead of overzealous inspectors.

That isn't right. ANYONE on long-term opioid medications does NOT want them. It's almost as bad as a street addiction - EVERY month I panic. EVERY month the GP screws up the script. EVERY month it takes a week to sort out (so I start hassling for prescriptions 1 week before due date). THAT impacts quality of life almost as much as pain.
 
RUC4 said:
Years ago, when something was painful, you would go to the doctor, maybe get a prescription after a few tests. Then you would either feel better, or visit the doctor again and get something else. This system worked like a well-oiled machine for many years. The current assumption people have made is that because of the overprescribed, overuse of prescriptions, namely opioids, people escalated from prescription pain medicines to street drugs. The theory is that people with broken legs, toothaches, sprained ankles, or whatever ailment were getting unwarranted, strong pain medicines that were unnecessary and led them down a dark path into addiction (and possibly crime).
The laws have changed so drastically in the last 15 years that it has become very difficult to get pain medicine prescribed even if you need it. The scale has tipped into the opposite direction, too little is being prescribed and taken. These changes have made a devastating impact for two reasons: patients who have been on long-term prescribed pain medicine for chronic illnesses were denied their prescriptions, causing them to look elsewhere for relief, and the new people suffering from chronic illnesses and pain can't obtain a needed prescription and are treated like addicts for wanting them.

As a patient, you have to tiptoe on a thin line between advocating for yourself and appearing to be drug-seeking and denied medication. If you're "flagged" in the system as drug-seeking, you won't get any prescriptions in your town, or county, or state. This delicate tiptoeing is clouded even further for ex-addicts who are chronically ill.

Who should decide what kind of pain deserves prescription medicine? Who should decide how much or for how long? Why are we not allowed to decide for ourselves if pain medicine can be used to manage an illness? A person can buy as much beer or liquor from any store. We are allowed to decide when to stop drinking (an addictive substance), vaping nicotine, but not pain medicine?
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I go to a pain clinic they give me Norcos. But it's stuck at four which is a bummer because it's my pain.... But oh well I'm happy with what is available thank God for pain clinics.
 
Fertile said:
Well - the odd thing is that UK doctors now think oxycodone is a SAFER option than codeine! They are happy to go up and indeed beyond 400mg/day.

But this cannot last. You have to keep on eye on the news in case the media decides that the UK has an 'oxycodone epidemic' which is when you go to the doctor and ask for something different. Equipotent, but different.

A US friend makes a living defending US doctors and pharmacists who are accused of overprescribing.... and I KNOW that they actually have serious pain issues themselves.

I've seen people in the US swapped from OxyContin to Opana to LevoDromoran in the space of 6 months - just the doctor staying ahead of overzealous inspectors.

That isn't right. ANYONE on long-term opioid medications does NOT want them. It's almost as bad as a street addiction - EVERY month I panic. EVERY month the GP screws up the script. EVERY month it takes a week to sort out (so I start hassling for prescriptions 1 week before due date). THAT impacts quality of life almost as much as pain.
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Man I remember having these problems each month but I just found the right doctor and pharmacy and it's like clockwork not a single problem of that nightmare for years now.

So it's more the doctor than the pharmacy fucking with you? I'll tell you all my problems like this ended when I stopped using big chain pharmacies and used small privatley owned pharmacies.
 
No - I WAS using the pharmacy at the surgery but they fucked up so many times, I moved to using a friend's pharmacy. So then I knew what issues were pharmacists and what was on the doctors. Often the pharmacy at the surgery would say they had the medication in stock when I called.... only to turn up and find they had lied. No other word fits. They just lied.

Every month whichever doctor signed the CD2 (controlled drug class II) would ring and say 'oh, you will become addicted so we are going to cut down your script'. My wife asked one of these doctors if they had bothered to look at my X-rays. None of them had. But when one of them finally did, suddenly they were asking HOW I could walk at all.

So the only issue left is their system. One lot of pills is sent as an 'electronic prescription', but the other is flagged for being picked up.... and for 3 months I've asked them to change it. They still haven't. The office staff don't seem to know how to.

So in essence - their are problems everywhere.

I have often wondered just how secure these 'electronic prescriptions' are.


Not that trying to commit fraud is of interest to me - its a silly way to get 1 year in prison!

The fact that private doctors use a compatible system suggests that they are using 'security through obscurity' which as we all know, is a BAD idea. As far as I can tell, they can E-mail private patients the prescription as an image for printing or as an SMS.... So I presume it's got the doctors ID, the unique prescription number and the patient's name.

Script fraud seems to be more of a US thing.
 
I asked my doctor to please just switch me to welbutrin, cause I'm tired of the SNRI's and I don't believe my depression is serotonin related anyway. So I figure if I'm gonna have to take an AD in order to be "compliant", it might as well be one that I can physically handle (aka, not being throwing up and half dead all the time). Plus I need help cutting back on cigarettes.
She finally sent it over today.
Drove my car all the way there on an empty tank just to get it.
Drove all the way back home & there was some asshole blocking my parking spot.
When I finally got inside, I opened the welbutrin only discover that there was only 10 pills in the bottle, even though the QTY said 30 & I paid for 30.
So I called them & they said not to take any yet & to bring it back in so I can prove there's only 10 there.
I was like wtf. So I had to use the last of my money for the month to put it in my gas tank, so I could go back.
Thankfully they didn't make a huge deal out of it once I got there. But I think from now on, I'll count my meds before I even leave the store.

I have no doubt that if that had been my klonopin or another controlled med, they would have accused me of lying.
I know this has nothing to do with opioids or chronic pain, but it's still frustrating.


Anyone know if dopamine reuptake inhibition would block dopamine release from other drugs? Like opioids or other stimulants?
I've always been curious, cause I've noticed my buprenorphiine feels really really "blah" when I take buproprion too.
Same with methylphenidate and buprenorphine.
It's like they dull the opioid effect of the bupe for some reason.
Dopamine releasers + buprenorphine feel lovely though however.
 
I'm sorry to hear of your problems with the pharmacy. I now open the bag, take everything out and place it on the counter. Even at my friend's pharmacy. I cannot walk far and 2 trips would destroy me.

Wellbutrin's an odd one. It's a miracle for some - hell for others. I note that people who like stimulant's seem to do well on it.

I don't think it's going to cause any interactions, but of course, everyone is unique. Be aware that Wellbutrin lowers one's seizure threshold. Thus I've never even been offered it.
 
Fertile said:
Wellbutrin's an odd one. It's a miracle for some - hell for others. I note that people who like stimulant's seem to do well on it.
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i love stimulants, but wellbutrin XR had me the closest to a legitimate suicide attempt i've ever been. i think it motivated me a bit too much, if that makes sense.
 
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