Opioids in the treatment of ME/CFS patients

[Michelle]

The relevance to opioids is that anyone who has been on either side of this issue: either pain sufferers or pain medicine physicians has observed the unequivocal fact that opioids relieve pain. This has been known for millennia! Of course there are special cases where opioids don't help much, and there are people who cannot tolerate them for various reasons, and there is a subset of people who find the effects of opioids addicting. But to argue that we don't know if opioids work for pain in the long term because of lack of studies is absurd. Just ask a patient that has used them successfully for decades - like me. Or ask a pain medicine doctor (I also am fellowship trained in pain management), who has observed hundreds of patients successfully managed for years with opioids, with little adverse result.

No substitute for opioids has come close in efficacy or safety.

I've been absolutely dumbfounded to hear so many reasonably intelligent people (including a certain ME/CFS writer and former PR member who I otherwise very much respect) repeat such ridiculous nonsense as "opioids don't work." bang-head: Emperor. Naked.) For some people, sure they don't. But for so many others -- including people with FMS -- they very much do. It's the reason so many doctors so quickly prescribe them! And as you correctly point out, NSAIDS have very serious side-effects, as does acetaminophen, and anti-seizure meds (suicidal ideation), and yes, even the tricyclics. And, of course, what do you do for people on Coumadin? We can't take NSAIDS...

Without useful alternatives to opioids there is no basis for making changes. Like prohibition, I suspect this is primarily ideologically driven, and indeed is a modern continuation of prohibition thinking.

I keep trying to figure out what's behind this sudden spasm of pearl-clutching about opioids. To be sure, many state Medicaid programs required methadone be the first drug of choice when initiating long-acting opioid therapy (including mine) and there followed a spike in OD deaths as a result because methadone has such a long half-life. Prescribing benzos and opioids has not helped matters any either. Add in the historically low price of heroin on the streets (thanks, Taliban!) and systemic economic blight (thanks, neoliberalism!) and an increase in OD deaths follows (though you are very much correct that heroin is indeed being used as a pain treatment modality by many).

But it does appear that certain groups have viewed these unfortunate turn of events as an opportunity to hijack any sane or rational discussion about opioids and CDC is letting itself be among the hijacked. The DEA certainly uses it to push its prohibitionist thinking. But the role of the BPS folks in all of this, imho, has not received enough attention. They are pushing a "CBT not opioids" agenda. Why it can't be both is beyond me. While I have certainly found CBT helpful in coping with pain, I have certainly found Mindfulness Meditation also helpful in mitigating some of my pain, I certainly believe that psychosocial approaches to pain treatment have an important adjunctive role to play, BUT they will never be able to replace opioids or pharmacological treatments. I get the sense that the BPS folks see this as a golden opportunity to convince insurers to replace opioids with CBT programs (though how effective they will be with insurers remains to be seen). And that they perpetually have a chip on their shoulder in which they are trying desperately convince the rest of medicine that they do real medicine too. The sad thing is, they do but are never satisfied with the limitations of that medicine.

 

[Groggy Doggy]

I recently read a book called Dreamland, by L.A. Times reporter Sam Quinones, about the opiate/heroin addiction epidemic in the U.S. It was pretty harrowing but a fascinating read too. It reads like a crime novel, but it's nonfiction of course. A large part (I don't know the percentage) of the opiate/heroin addiction epidemic stems from oxycontin. It can be very addicting, though doctors were told otherwise. In combination with the sudden availability of cheap, very potent black tar heroin from Mexico, it was a perfect storm. People who got hooked on oxy, when they could no longer get it, were ripe for heroin.

And politicians who were formerly very strong "law and order" people, against spending money on rehab, just lock the addicts up, suddenly are talking about rehab and other things because their wives and children and friends are becoming heroin addicts. It is really too bad that humans seem to be wired that way, to not care unless something happens directly to them.

In any event - I'm digressing. I can't weigh in on the issue of pain meds per se because I don't deal with pain. But I highly recommend this book.

Thanks..it sounds interesting. I watched a VICE show that touched on the herion epidemic.

 

[Groggy Doggy]

I've been absolutely dumbfounded to hear so many reasonably intelligent people (including a certain ME/CFS writer and former PR member who I otherwise very much respect) repeat such ridiculous nonsense as "opioids don't work."

So someone is saying they don't work at all for anyone, or only work slighty? Would opiodes benefit someone more with acute 10/10 pain than say chronic 8/10 pain? I don't know much about them or how they work. They used to be routinely prescribed post surgery, but usually only for a week's supply.

 

[valentinelynx]

There was something on the news last month about narcotics actually increasing pain over time

There is a phenomenon called "opioid-induced hyperalgesia" in which high doses of opioids lead to increased sensitivity to pain. The clinical relevance of this (how it applies in the everyday world) in unknown. Primarily, it appears to be an issue at times in surgery, when high dose infusions of remifentanil (an opioid that acts very quickly and also is metabolized very quickly - effects gone in 10 minutes, regardless of dose of length of infusion) are used during an operation. It would be difficult to reproduce this level of exposure to opioids in oral medication for chronic pain. I believe I may have seen one case in the pain clinic of a patient who could have been suffering this. It certainly is not a common phenomenon. It has also been found to be reversible with low dose ketamine, as the effect is mediated through activity at the NMDA receptors.

The anti-opioid crusaders of course are using this largely theoretical concern as another rallying point against use of opioids for chronic pain. They don't know what they are talking about.

 

[Groggy Doggy]

There is a phenomenon called "opioid-induced hyperalgesia" in which high doses of opioids lead to increased sensitivity to pain. The clinical relevance of this (how it applies in the everyday world) in unknown. Primarily, it appears to be an issue at times in surgery, when high dose infusions of remifentanil (an opioid that acts very quickly and also is metabolized very quickly - effects gone in 10 minutes, regardless of dose of length of infusion) are used during an operation. It would be difficult to reproduce this level of exposure to opioids in oral medication for chronic pain. I believe I may have seen one case in the pain clinic of a patient who could have been suffering this. It certainly is not a common phenomenon. It has also been found to be reversible with low dose ketamine, as the effect is mediated through activity at the NMDA receptors.

The anti-opioid crusaders of course are using this largely theoretical concern as another rallying point against use of opioids for chronic pain. They don't know what they are talking about.

It's hard to know what to believe anymore. Study results can be manipulated. Study results can be hidden, so the drug can gain FDA approved. We, the public get manipulated into believing X...and then years later we are told its not X but instead Y (and ignore what we told you prior about it being X).

 

[Justin30]

It has also been found to be reversible with low dose ketamine, as the effect is mediated through activity at the NMDA receptors.

Do opiods block the NMDA receptor I know Ketamin does? Maybe a silly question.

When in really bad pain I have used opiods and experience a global reduction in many neurological symptoms. This includes pain, brain fog, twitching, weakness, numbness in my throat, etc.

Not to mention for pain such as headaches it is the only med that has really worked for these and I think I have tried them all.

Any thoughts as to if LDN might produce this affect without having to use an opiod?

Thanks in advance

 

[Groggy Doggy]

Do opiods block the NMDA receptor I know Ketamin does? Maybe a silly question.

When in really bad pain I have used opiods and experience a global reduction in many neurological symptoms. This includes pain, brain fog, twitching, weakness, numbness in my throat, etc.

Not to mention for pain such as headaches it is the only med that has really worked for these and I think I have tried them all.

Any thoughts as to if LDN might produce this affect without having to use an opiod?

Thanks in advance

I am glad you are getting good results. Will you be able to continue using opiods?

 

[Justin30]

I am glad you are getting good results. Will you be able to continue using opiods?

Not sure at this point with everything going on with this subject. I hope so.

Tramadol is like am opiod but my major concern with this med is its close ties to Venafalexine which has produced negative effects with me and published in literature.

I want to try LDN but am a bit concerned of the affects it could have when I not in great shape.

 

[Dufresne]

Something I think is overlooked is that controlled use of heroin by addicts has had a record of safe use for decades according to what I have read over the years. Heroin often kills when abused, or of unknown strength, or when combined with other substances, or of dubious providence, especially when cut will all sorts of weird substances. Its also easier to quit than smoking for many addicts. When are we going to make tobacco illegal? It probably still kills more people.

The other huge risk factor with heroin is mainlining. Keith Richards used heroin for ten years without an overdose; Eric Clapton for three. Neither of them mainlined. Mainlining overloads the system all at once and is usually what leads to respiratory depression. There's no reason to mainline for painkilling purposes. Of course if you're determined to get higher and higher you'll eventually overdose, regardless how the drug is administered.

As for heroin being easier to quit than tobacco. I've a friend who's fond of saying, "I've quit heroin and I've quit smoking... I didn't shit myself when I quit smoking."

 

[JES]

Any thoughts as to if LDN might produce this affect without having to use an opiod?

Thanks in advance

LDN inhibits microglial activation, which decreases the excessive release of glutamate. This in turn suppresses the activation of NMDA receptors. So yeah, LDN will indirectly block NMDA receptors and also help with pain and sleep, at least for me.

 

[Little Bluestem]

This is problematic because my Dr can only prescribe one month at a time and I can't see him often so I get a 75mg Rx and split them--and use very judiciously.

I realize we are in different countries, so this may be irrelevant, but...
My doctor gave me three 1 month prescriptions for Norco. They each say "to be filled on or after mm/dd/yyyy" and are dated a month apart, so I could not have filled them all when I first got them. They are now over three months old, but I doubt that I would be able to fill the remaining two at the same time.

She only gave me one prescription for tramadol, but I think that is because I cannot take it long term. These prescriptions are for back pain not ME. While I did fill one of each "just in case", I have not had to take them.

 

[cookie]

I started having problems at the pain clinic at least 3 months ago. I have rheumatoid, fibro, lyme and now back pain. When I started going to the pain clinic (Pittsburgh Pa) the doctor was wonderful and I finally felt like someone cared. Now I have to beg for meds. I used to take Tramadol and oxy in between. Now I only get tramadol which is like aspirin since I have been on it for 18 years for the rheumatoid. I am very angry. The government is taking over our lives. I feel like going to the streets to get meds! They are the only people who are able to get any but I would be afraid the street drugs would be switched with other things. I am definitely writing letters to newspapers and hospital officials. Can we sue somebody over this?

 

[Groggy Doggy]

I started having problems at the pain clinic at least 3 months ago. I have rheumatoid, fibro, lyme and now back pain. I am definitely writing letters to newspapers and hospital officials.

http://www.thehurtblogger.com/
A young RA patient, Britt Johnson is taking steps to try and change the conversation about Opioids.

Her multimedia posts, where she recently spoke at Stanford MedicineX, give an interesting insight into what she is up against.
http://www.thehurtblogger.com/multimedia

 

[cookie]

Thanks for sending this to me. I hope she is successful but when you are up against government you are never heard.

 

[Groggy Doggy]

Thanks for sending this to me. I hope she is successful but when you are up against government you are never heard.

We need more voices.

I have a lot to say too, but my focus is from the perspective of an ME peep. I plan to submit an abstract for approval for next years conference. I refuse to be ignored, and I will not stop talking until we see changes. I am fearless and not intimidated by titles or academic degrees.

 

[Justin30]

If they banned opiates I bet people would be in big trouble I could see it resulting in alot of ppl taking their own lives.

 

[TrixieStix]

I have taken an opiate medication (a strong one) daily round the clock for over 3 years now, and I cannot imagine life without it given how much it has decreased my nerve pain that is a result of brachial plexus damage. Making the intolerable pain I experience tolerable. It works well for me and has had no negative side effects aside from slight constipation. I have not become tolerant to the effects of the drug and remain on the same dose as I was on years ago.

When I first began taking opiates daily I made a point to educate myself about opiate addiction, addiction vs dependence, etc. The fact is addiction and abuse of opiates in patients who use them for chronic pain is very low...estimated to be around 6% I believe. This fact seems to get lost in the opiate conversation. Also a patient developing a "dependence" for opiates is not at all the same thing as "addiction". Too often in online support forums I saw patients like me taking an opiate for chronic pain and seeing their quality of life improved by it, but then beginning to feel guilty, fearful, stigmatized by their family and/or friends because of all the talk about opiate addiction. Their family and friends parroting the scary stuff they saw on tv or read about. It's sad that chronic pain sufferers are stigmatized by addiction issues having nothing to do with them.

Opiates are a life saving drug for many people. Without them their pain and quality of life would be so poor they would choose to end their life. Can you imagine cancer patients losing access to the life saving cancer drug they depend on to stay alive because some people were choosing to abuse said drug? There would be collective outrage. Chronic pain sufferers are not treated with the respect nor empathy they deserve. Chronic pain should be considered a potentially fatal illness that demands treatment with the best tools and medications available. Opiates are one of the best tools available at this time. I have sympathy for those whose lives are lost and/or affected by opiate addiction, but that should not be a burden chronic pain sufferers are forced to bear at the detriment of their own lives and well being.

 

[panckage]

I recommend kratom for all those who do well on the positives of opiods. For me the effect is similar to tramadol. The difference being is I had to worry about tolerance and withdrawal on tramadol. I was never able to find a reliable dosing schedule on it.

OTOH with kratom I am taking it on average 4-5 days a week (never more than 2 days in a row). I haven't experienced any negatives such as withdrawal or tolerance when going off of it for a few days.

More interestingly even when I take low dose naltrexone nothing bad happens. Naltrexone should put me into withdrawal if I have a tolerance. It does not.

Susan Ash, a Lyme disease sufferer is the head of the American Kratom Association. Here's a bit of her story:

r/kratom
Letter from Susan Ash (DEA is coming after me)
u/DerkBerk-2d, 11h
My name is Susan Ash and kratom helped save my life. After years of suffering from an undiagnosed case of Lyme disease, I was prescribed more than a dozen pharmaceutical substances, leading to addiction and years of treatment and rehabilitation programs.

I thought I was doomed to live the rest of my life in pain, feel the horrible effects of opioid withdrawal, or worse, die from an overdose. But then a member of a Lyme disease support group suggested I try using a plant called kratom – and it changed my life forever.

I went from being a nonproductive member of society, only leaving the house to see doctors, to a passionate advocate. I’m the founder and director of the American Kratom Association, which represents the 3-5 million kratom consumers in the United States. And right now we face our darkest hour. We could be considered criminals as soon as tomorrow.

https://m.reddit.com/r/kratom/comme..._ash_dea_is_coming_after_me/?ref=search_posts
Sorry this was all I could find easily. There is still a good chance that the right decision will be made and kratom will stay legal in the USA

 

[Little Bluestem]

I have rheumatoid, fibro, lyme and now back pain. When I started going to the pain clinic (Pittsburgh Pa) the doctor was wonderful and I finally felt like someone cared. Now I have to beg for meds.

I have a friend with rheumatoid arthritis. A couple of months ago we happened to discuss pain meds, which I have taken in the past, but do not now. At that time she was getting hydrocodone. What your doctor is doing is not 'standard practice'. Do you have access to another rheumatologist?

 

[bspg]

Rebooting this thread as I'm looking for advice on how to actually get a doctor to write a script for pain meds?

I've been eating anywhere from 3-9 ibuprofen daily for pain, for several months now. For 27/30 days of each month, this is fine. I still have pain everyday but it's mostly minimal and I can tolerate it.

Unfortunately, the other 3 days of the month (they're random, not consecutive) my pain is so severe that I can't even move without screaming. My GP refuses to prescribe opioids for anyone (thanks to the scare tactics of the DEA and CDC), so anyone needing more than ibuprofen for pain, he refers to a pain management clinic.

I'm ready to ask for a referral but because I have a diagnosis of fibro and depression (in addition to CFS), I know they're going to want me to take tricyclics, cymbalta, gabapentin, or lyrica before giving me anything else (IF they even offer anything else).

All of this would be fine except that I've already tried literaly every one of the above drugs with a different doctor and they didn't help me. The side effects were horrible and all of them made me worse. Plus, I really only need the extra pain relief a few days each month.

I don't know how to express all this to the pain doctor and have them listen to me, especially as a new patient. Maybe I'm just thinking it'll be worse than it is but my mom has been in pain management for years (in this same geographic area) and has been treated horribly. She has multiple, severe back problems and suffers in pain constantly. Opioids are the only thing that provide even a small bit of relief for her and the doctors are trying to take her off them. She's scared and suffering. It's really awful.

I've been holding off on pain management because of all this nonsense but it's getting harder and harder for me to manage my pain. I really do not want to go through all those drugs again just to "prove" to the doctor that they don't work. But with the current crackdown on opioids, I don't see another way.

Does anyone have advice on this? Has anyone actually been able to get a script using the diagnosis of ME/CFS or fibro and not another disorder/injury?