Maybe now the cruelty can stop

[ircam2112]

The U.S. CDC, doctors and organizations who, directly or indirectly, inhumanely reduced and/or cut people off from opioids for pain or RLS now have a chance to redeem their cruel decisions based on new CDC guidelines (link below) released 11/03/22. It can be shown that the medical community’s response to the opioid epidemic has predictively and indirectly lead to the deaths of thousands (or more) around the globe.

wsj.com/articles/doctors-sh...

Patients also have a chance too. A chance to seek monetary damages for pain and suffering. Since RLS is known to be caused by detox, reductions and/or cold-turkey withdrawal from opioids, alcohol and other classes of medications, such as some anti-depressants (my sit), I think that there is a legal case to made by individuals or through class-action. They’ve already escaped most accountability for their role in the opioid epidemic - not being trained in how quickly people can develop dependence and withdrawal symptoms or, knowing this and doing it anyway due to political or social pressure, not for us as patients.

I am *not* a lawyer (but do accept tips :)). However, having taken opioids long-term and voluntarily discontinued 3 times over 20 years, I have shed tears for the people who have posted online over the last 10 years that their physician refused to increase, decreased or discontinued prescribing opioids without a clinical rationale. My own pain doctor almost cut me off until I got very assertive with him. He said he was concerned that I could become addicted. I asked him if there was some behavior or clinical finding that put me at a higher risk - after 20 years and not taking more than prescribed even once. He then pointed to a number of studies that basically stated that most of the pain was “in my head” and that Acetaminophen was as good, or better (lol ) at controlling pain. Wow, that’s great news for Tylenol since not even they knew this was the case (I wasn’t that snarky I hoped). I told him I thought the studies were BS - poorly done and, since all were 2015 or later, politically motivated. He added that “I wouldn’t seek a second opinion if I were you”. I reluctantly saw an addiction “specialist” who looked at my prescribed medications and said, “ohh, yea…you're on a lot of uppers and downers”. I told her the medications were for depression, RLS/PLMD and chronic pain, then walked out. My physician got the message and I’m on the same dose today. I feel lucky but know that there are many who weren’t.

The pain medicine community even came up with a new clinical diagnosis - Opioid Use Disorder - which per my reading, has no basis in fact. It is a diagnosis that is given when a patient develops tolerance and dependence to opioids, which are known characteristics of using opioids (and most other medications as well), not a description of a disease process. What it is though, is a faux-clinical diagnosis INVENTED & INTENDED as legal cover for physicians who reduce or cut patients off of opioids.

I think that the CDC, physicians and organizations who made these clinical decisions, decisions that they knew would entail considerable suffering and increase the chance of patients resorting to illegally obtained opioids, need to be held accountable as they, in most cases, knowingly “did harm”. It does appear that the health-care organizations they worked for pressured physicians through policy changes. That’s no excuse. I wonder how many people were forced to suicide, sought opioids illegally (and maybe face legal troubles), developed new mental or physical conditions and/or accidentally overdosed on opioids, alcohol or fentanyl-laced illicit drugs? Did you know that people with RLS are 3-4X more likely to end their lives compared to cancer patients? No wonder. Based on experience and from what I’ve heard from others, we’re treated mostly with presumption and condescension, then at times, contempt.

Withdrawal symptoms from opioids, even after a 7-10 day course depending on dosage, are very difficult to cope with for most people. I knew this 20 years ago. Did your doctor know? Did they mention the possibility of withdrawal symptoms, offer bare minimum information on how to cope with them, ask you to call if you’re having a hard time, or offer a tapering schedule? I bet it’s mostly “Yes” and “No, no, no” respectively. In my opinion, that’s negligence, depraved indifference or, in some cases, manslaughter e.g. diagnoses of RLS + depression.

There’s been a lot of patient pain, suffering and death and most of it is not our fault. The primary cause appears to be that physicians initially minimized the high potential for patients to quickly develop dependence (and therefore withdrawal symptoms) and, therefore, didn’t warn patients who were new to using opioids. Then, once the opioid epidemic was exploding, when what was known would happen, happened (people became dependent after 7-10 days), they hurt people even more by supporting a new, bogus diagnosis in order to inhumanely restrict opioids from patients who needed them. Healthcare organizations seem to be fine with the placement of all of the blame on pharmaceutical companies and patients - another insult.

This has been a disgrace! The healthcare system needs to learn that this will never be allowed to happen again.

I would love to hear people’s thoughts, experiences or questions.

[Madlegs1]

Right on!👍🔥

[Abby2525]

Yes! So much of what is in the DSM is not the result of thorough research. Many conditions are really just descriptions and even though people can receive a diagnosis based on the DSM, I believe a lot of it is meaningless. I hate the DSM. Conditions are put in and taken out based on societal trends and political pressure.

The only legitimate reason for a diagnosis is so that a person can either understand why they might be suffering or so that a person can receive treatment that is helpful or at least APPROPRIATE. You could probably eliminate a huge portion of the DSM based on those criteria.

I agree with everything you say in your post!

[Tanker1]

Great post. Years ago when the opioid problem first surfaced, I knew there would be an over reaction and people would suffer. Sadly I was right. In the area where I live the opioid problem appears to be illicit fentanyl and has nothing to do with prescription opioids.

[ircam2112 in reply to Tanker1]

Thanks. I do think that there is a direct link from prescription opioids and illicit fentanyl however. Prescription opioids, esp. when cut off quickly, increases the risk of people seeking illicit opioids to avoid/resolve withdrawal symptoms (fentanyl is a synthetic opioid). At that point, inexperienced users could easily buy fentanyl-laced opioids and overdose. Or, if obtaining illicit opioids in the amount needed to avoid withdrawal symptoms becomes increasingly problematic, people will often seek more potent, easier to access and more lethal opioids - like heroin, fentanyl, etc..

[TeddiJ]

My story: As some of you know, I suffered so much last winter when I was abruptly cut off from methadone by TWO different doctors who were afraid of the repercussions. No help from either of them to taper down or find another option. I considered jumping off my balcony one night as I rocked, sweated, and jumped around with rls all over my body.

If not for the support of this forum and also finding out about kratom here, I have no idea how I would have made it through as I made difficult-to-get RLS appts. all over the country. I also live in a huge city and sought help from many sources for months, to no avail. I was treated like an addict at the pharmacy and also when at the various appts. These are some of the major reasons I do not want to go back on an opioid; the stress and sheer terror of never knowing if my prescription is secure or if the pharmacy has an issue-every single month.

[ircam2112 in reply to TeddiJ]

That’s awful TerriJ. Sorry you were forced to do that. And to think that they are well aware of the risks of opioid withdrawal - awful rebound pain and RLS, risk of the person seeking illicit opioids and potentially take too much or inadvertently take some that is laced with fentanyl, LSD, others. I think they think, “well, withdrawal isn’t my problem. There are places to go for that.” So they make something that should be relatively easy - a slow taper of opioids in the least restrictive setting (at home) - into a life-disrupting, inpatient detox process that has major impacts on families, employment, finances, etc.. Plus you’re now more deeply stamped with the label of addict. Given these choices, it’s no wonder people seek illicit drugs. Shame on them.

Though my doctor knew I was taking the opioids for chronic back pain, as soon as I mentioned that I was beginning to have withdrawal symptoms between doses e.g.) during the night…last night in fact! He pounced on that and said I was taking it ONLY to control withdrawal symptoms. I said that my pain was pretty well-managed on my current dose, so when I set up that appt. my main concern was withdrawal between doses and mentioned that first. Then the ”pounce”. It was like he was just waiting for me to say something that he could take out of context. When I was explaining this, that‘s when he interrupted me and reminded me basically that pain specialists are a mafia-like organization who apparently prize their ties above the patients. He apparently thought he “got me” and wasn’t going to listen to any explanations. Aug!

As part of the process of becoming a pain management physician, part of the medical training should include a required experience of withdrawal symptoms to build empathy. Something to which you’d think and hope doctors would already be committed.

May I ask how much methadone you were taking?

[TeddiJ in reply to ircam2112]

That is terrible, too. Ugh-sorry to hear.

Thanks so much....I was taking 7.5 mg's to 10 mg's.

[Truthsword]

I dont know your country....but here in the US they assign you a number...ostensibly indicating your likely hood of becoming adicted. Mine is high because i have had many orthopedic surgeries and therapies and 2 c sections. I NEVER ask for opioids. But when i need it for a tooth extraction, etc, the pharmacist gives me that look of disdain and the lecture about the dangers of narcotics. I find myself wishing they could spend just one hour of painful RLS when its all down one entire side. Sorry..i just get so mad when people say they never take pain killers....well good for you. I am really very glad you really never needed them. Really! But when given the choice between agony and an opioid..if i have one...ill take it...wspecially if i have never slept for days.