CDC Slams Opioid Use for Chronic Pain in New Guidelines

My experience with opioid pain killers (Vicodin, oxycontin, etc.) and chronic pain

  • They've been very helpful

    Votes: 20 46.5%
  • They've been moderately helpful;

    Votes: 11 25.6%
  • They haven't had much effect

    Votes: 1 2.3%
  • They have been moderately harmful

    Votes: 2 4.7%
  • They've been very harmful

    Votes: 2 4.7%
  • I've found that other drugs work better at reducing my pain

    Votes: 7 16.3%
  • I do take drugs for pain but have never tried opioid pain killers

    Votes: 5 11.6%

  • Total voters
    43

KweenPita

Active Member
I have been offered higher doses for years because along with Fibromyalgia, I have Degenerative Disc in my Cervical area, Lumbar, and Sacral (sp), and as I tell my Doctors my "wiggle" hurts, if I tuck my butt, what little I have it relieves the pain, but when I sashay my wiggle hurts like hell.

I only take Norco 7.5, and then only if I am going out and with a lidaderm patch on my wiggle which helps me fake it till I make it. No long walks, no long stairs, plenty of breaks. I had epidural injections to all three areas 3 times a year for about 10 years but they stopped working.

I am the CBD oil Queen and it helps everything just about but the spine, the worst spasms and my hands continue to have nerve pain and weaken. No more chopping carrots. GA, my home state tabled expanding their medical marijuana condition expansion in the State Senate yesterday, so I emailed my State Senator, and told him my history, Community Work, health decline, drugs being useless, etc.

But told him he was gagging on a marijuana gnat while swallowing an opiate camel for treating chronic pain. He replied back today and agreed with me.

So the CDC news helps my vendetta, I mean campaign. I am going to email every Senator and Representative. Especially hard hit my Conservative, Christian Buddies because I speak their language being a retired pastor's wife for 25 years.

Like I told the Conservative Senator "this is not a morality or sin issue it's a medical issue". I could translate the Bible in Hebrew and Greek, outspoken, Yankee, couldn't play the piano, (I was asked that at every pastoral interview), a "social worker" and was not what the Bible Belt expected me to be. My husband's first position was Youth Pastor, helping start a Mission church. This one Deacon felt all women should be submissive to men.

Our Senior Pastor used to like to "get me going". So he would get this Deacon near me and start a conversation that would make my hair curl even tighter, knowing I would jump in.

Finally one time I had it and said "Your problem is I don't have a penis therefore I must not be knowledgeable. So I am going to get me a little penis to put in my pocket just for you and whip it out when I make a point". My Pastor and everyone around me lost it. My penis speech went down in infamy and the Deacon was respectful, I think he was afraid I had a penis in my pocket. I was 28, and have since learned to be more tactful and diplomatic.
 
Last edited by a moderator:

Who Me?

Well-Known Member

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have been offered higher doses for years because along with Fibromyalgia, I have Degenerative Disc in my Cervical area, Lumbar, and Sacral (sp), and as I tell my Doctors my "wiggle" hurts, if I tuck my butt, what little I have it relieves the pain, but when I sashay my wiggle hurts like hell.

I only take Norco 7.5, and then only if I am going out and with a lidaderm patch on my wiggle which helps me fake it till I make it. No long walks, no long stairs, plenty of breaks. I had epidural injections to all three areas 3 times a year for about 10 years but they stopped working.

I am the CBD oil Queen and it helps everything just about but the spine, the worst spasms and my hands continue to have nerve pain and weaken. No more chopping carrots. GA, my home state tabled expanding their medical marijuana condition expansion in the State Senate yesterday, so I emailed my State Senator, and told him my history, Community Work, health decline, drugs being useless, etc.

But told him he was gagging on a marijuana gnat while swallowing an opiate camel for treating chronic pain. He replied back today and agreed with me.

So the CDC news helps my vendetta, I mean campaign. I am going to email every Senator and Representative. Especially hard hit my Conservative, Christian Buddies because I speak their language being a retired pastor's wife for 25 years.

Like I told the Conservative Senator "this is not a morality or sin issue it's a medical issue". I could translate the Bible in Hebrew and Greek, outspoken, Yankee, couldn't play the piano, (I was asked that at every pastoral interview), a "social worker" and was not what the Bible Belt expected me to be. My husband's first position was Youth Pastor, helping start a Mission church. This one Deacon felt all women should be submissive to men.

Our Senior Pastor used to like to "get me going". So he would get this Deacon near me and start a conversation that would make my hair curl even tighter, knowing I would jump in.

Finally one time I had it and said "Your problem is I don't have a penis therefore I must not be knowledgeable. So I am going to get me a little penis to put in my pocket just for you and whip it out when I make a point". My Pastor and everyone around me lost it. My penis speech went down in infamy and the Deacon was respectful, I think he was afraid I had a penis in my pocket. I was 28, and have since learned to be more tactful and diplomatic.
:) Good luck with your vendetta er campaign ;)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
My system has always been too sensitive for opiates. Vicodin & Percocet both make me vomit within a short time after taking it. Then when I was given an anti-nausea drug to counteract it, the Vicodin gave me horrible hallucinations.

When I tried to close my eyes and sleep, my brain was casting different images every millisecond, like a movie screen, but a different picture every single frame. And they were all super creepy... Random faces, bloody things, bright colors, patterns etc. NOT at all fun. It lasted for hours until it wore off.

Nope, my brain doesn't need drugs, no-sir-eee! I couldn't have cared less about the pain relief qualities--- the experience itself was awful enough to make opiates useless to me.

I tend to get by with Tylenol or rarely Aleve. NSAIDS tear up my stomach pretty fast. I try to use them sparingly for the worst pain, maybe once a week and hopefully only a couple times a month.
That's amazing! ....Think what your brain could tell researchers if they just could get in there :D:D:D
 

Leila Gary

Member
I have struggled for a few years now with incredible back pain because my doctor who was prescribing Percocet for me was no longer available (He was part of a Medical Board). I would take 1/2 of a 5/325 Percocet only when my pain was so bad and I HAD to do a lot of moving (driving, walking, standing, getting up from sitting for a short period of time, etc.). 30 pills lasted me from 4-6 months. Doctors began saying I have low tolerance to pain pills. Taking 1/2 pill never took my pain completely away, it "took the edge off" of my pain so I could function. For the last 6 years I have suffered horribly because doctors avoid giving me opiate pain pills (yet my 21 year old son is prescribed Vicodin for migraine headaches lol). I have no car, I take the bus. The standing, sitting, waiting, for one outting causes so much back pain that I cannot function. I spend a lot of time crying because of the pain. I also have CFS/ME/Fibromyalgia. I have fallen while walking many times due to my lower back pain and pushing myself. Doctors don't seem to be concerned. I strongly believe an xray, MRI or whatever will better see my spine would help but I get "You need physical therapy." On rare ocassions, I will be prescribed Vicodin and 2 Vicodin have little to none pain relief. Vicodin did not even touch the pain of my broken arm in 1995 either. Back pain (all lower and now starting affect hips possibly due to weight gain and age) and headaches are my daily companions.
 

Carole

Active Member
I've been off my Tramadol and Bentyl (and all my MCAS meds) for 2 weeks now. Finding great relief with Malic Acid and supplements from Supreme Nutrition. I'm jazzed.

Issie
Find I have to alternate what you take and never take one thing for too long a period of time. Mix and match. What works for one kind of pain may not work for another. Also Yoga and stretching exercises make a lot of difference.
Have never used Tramadol have used Vicoden for short period. As long as I watch my sugar intake the pain seems to
be better also.
 

EvzRib

New Member
The CDC has not participated enough in the long term suffering of those afflicted with M.E. to make a call like this. They have continually denied the existence of M.E. as a serious pandemic over the last 30 years, attempted to block research for political reasons that would lead to their exposure of being complicit in trying to push this disease under the rug, leaving millions to find whatever relief they could, which led directly to the need for pain medications because little else was effective for the severe cases that left people completely crippled, bed and housebound. In addition, the CDC did not consider just how denying the existence of this disease for so long, perhaps wouldn't kill as many people as an immediate pandemic like ebola, but has ruined millions in regard to quality of life.

Years of prejudice, being ostracized and isolated socially because of chronic disbelief from the medical community and the encouragement by the mental health community that this disease is psychological rather than seriously physical, has left the seriously afflicted little choice but to seek relief through the monitoring of pain medication through Pain Management Specialists. The increase in this need is the direct result of the CDC's, and other government health organizations creating a world of confusion by first, coining the name Chronic Fatigue Syndrome instead of acknowledging Myalgic Ecephalomyelitis as the pandemic that keeps growing in the United States as well as other parts of the world. So the increase in opioid use has a great deal to do with the CDC itself... and now, all of a sudden, the CDC decides opioids are being overused and abused? Excellent way to shift responsibility to the victims of this disease and punish them for seeking this form of pain control.

Yes, there are now many other forms of possible pain control, but this is not a one size fits all disease. Many who have suffered for too long without the luxury of being able to afford treatments not covered by medical insurance companies, have become laden with co morbid conditions to M.E./Fibromyalgia that cause even more pain, e.g., costochondritis, hemiplegic migraines, psoriatic arthritis, thrush, among some.

So this is another insult regarding the integrity of our population that actually have found opioids to be beneficial, under the proper guidance and care of compassionate doctors who actually do understand that we do not have addictive personalities, and do not respond to opioids in ways that addicted personalities do. There is no "high" here. There is a sense of relief from crippling, intractable pain and as long as we continue to communicate responsibly with our doctors, have tried many other ways of controlling this type of pain without success over a certain amount of time, and we are clear of the effects, we have the right to choose this path rather than spend our time going in and out of revolving doors of ER's and hospitals.

Until the CDC has literally taken off their shoes and walked in the ones we can't anymore, and until they open ongoing dialogues with those groups who are advocates for all M.E./Fibro patients who need the consideration of proper medical treatment after being left to fight this disease alone and in social isolation and financial ruin for so long, then no responsible decisions can be made.

And for those who still insist on making M.E. a psychological issue, any kind of psychological or physical trauma in the extreme can break down an immune system, leaving it open to any one of a number of diseases and no amount of talking is going to cure a retroactive virus that takes over because of this kind of stress. It is now a phyisical problem and and needs to be researched as such and treated as such.
 

Martinigal

Active Member
I get SO incredibly angry when any organization like the CDC speaks from above and makes declarations they know nothing about. First, I am alive today because of Opioid pain relievers. I was a depressed, lifeless person. Spending lonely and painful days, day after day. Never having any hope. There was no light at the end of the tunnel for me. No great cure right around the corner. And doctor after doctor, afraid to deal with Chronic Pain issues because doctors fear what they can not fix. I was like that for over 3 years, following one horrible year of almost dying 3 times. First there was Cancer, 3 months later 4 Pulmonary Embolisms and Open Heart Surgery a few months later. My body was so damaged and I just never recovered. Tired at first and then came the pain. Lost the support of friends and family, they didn't understand. This is nothing new, thousands of us lose everything. But the CDC doesn't understand or care about any of that. They are worried only about taking away the very thing that has brought life back to me and so many others.
People who suffer chronic pain look at Opioids differently, they are our savior. I speak only for me and those people I know who finally just made the decision to let these medicines help us. I would never abuse my Methadone because with it I can function. With it I can shower, I can do laundry, I can keep my house clean (mostly) and I can almost work. Methadone gives me a ton of energy....a ton! I never get high, instead my fog lifts and I can read again. I have found a new form of art which gives me joy and may even be a way to make a living. NONE of this would have been possible if I hadn't finally given in and taken Methadone. Again, I would never abuse what has saved me.
The problem of people overdosing on prescription drugs isn't the fault of chronic pain sufferers. In fact, Frontline, the critically acclaimed PBS series, did a great story about how the rise of Heroin abuse in this country is a direct result of such organizations clamping down on prescription pain killers. The White House was warned that if this pressure continued that Heroin use would sky rocket. The Mexican drug cartels were already setting up supplies in middle to upper class white suburban areas to get the Heroin flowing once the tap of prescription drugs stopped. In their special Chasing Heroin, Frontline followed a small suburb of Seattle as the town fell into the clutches of Heroin. I think the CDC should watch Chasing Heroin so they can see the result of their work. I wouldn't care so much if I weren't directly in the line of fire.
Having my life back, at least 60% back, I am terrified that one day my doctor will tell me she can no longer provide Methadone to me. I've even researched methadone clinics, that's how much I refuse to go back to the person I was when I was lying in bed, in pain and depressed. I refused to lose myself again. I even cut my dose on my own because of G.I. side effects.
I will note that I suffer from Fibromyalgia, not ME. Although I feel there are more similarities than differences between us, I am unfamiliar with how much constant pain ME suffers actually deal with. I do know that it all affected me, the pain, the fog, the exhaustion, the depression all of it. And Methadone has helped me with all of it. I really wish the CDC would stick to controlling disease and leave prescribing the drugs to the doctors.
 

Martinigal

Active Member
Find I have to alternate what you take and never take one thing for too long a period of time. Mix and match. What works for one kind of pain may not work for another. Also Yoga and stretching exercises make a lot of difference.
Have never used Tramadol have used Vicoden for short period. As long as I watch my sugar intake the pain seems to
be better also.
Just the word Tramadol makes me shudder. I took tramadol to control the headaches that came with Fibromyalgia. I was a migraine sufferer for most of my life, but these headaches were different and helped by Tramadol. Until one day I took it and began hallucinating while driving. This was after getting really sick when I had taken it the week before. I started feeling funny and had to go right to bed. Well the hallucinations started, I managed to get myself home and starting making phone calls while I was still coherent. My mom rushed over to help me and I became extremely ill. The hallucinations continued as I was writhing in pain. My poor mom trying everything she could as I thought she was hurting me. Turns out I had become allergic to Tramadol. This had happened to me before with Vicodin, no hallucinations, but a sudden allergy.
 

Martinigal

Active Member
I have struggled for a few years now with incredible back pain because my doctor who was prescribing Percocet for me was no longer available (He was part of a Medical Board). I would take 1/2 of a 5/325 Percocet only when my pain was so bad and I HAD to do a lot of moving (driving, walking, standing, getting up from sitting for a short period of time, etc.). 30 pills lasted me from 4-6 months. Doctors began saying I have low tolerance to pain pills. Taking 1/2 pill never took my pain completely away, it "took the edge off" of my pain so I could function. For the last 6 years I have suffered horribly because doctors avoid giving me opiate pain pills (yet my 21 year old son is prescribed Vicodin for migraine headaches lol). I have no car, I take the bus. The standing, sitting, waiting, for one outting causes so much back pain that I cannot function. I spend a lot of time crying because of the pain. I also have CFS/ME/Fibromyalgia. I have fallen while walking many times due to my lower back pain and pushing myself. Doctors don't seem to be concerned. I strongly believe an xray, MRI or whatever will better see my spine would help but I get "You need physical therapy." On rare ocassions, I will be prescribed Vicodin and 2 Vicodin have little to none pain relief. Vicodin did not even touch the pain of my broken arm in 1995 either. Back pain (all lower and now starting affect hips possibly due to weight gain and age) and headaches are my daily companions.
I'm so sorry you have to suffer in this way. I too suffer from a herniated disc and was hospitalized for 5 days because of it. It truly is a horrible pain that affects you life in a very negative way. I will say, after I had the cortisone shots to get me walking again I did go to Physical Therapy. It helped a bunch, but I always end up getting hurt from P.T. Those of us with fibromyalgia have so many co-morbidities that even though my fibromyalgia pain is controlled, I still have so much pain and damage to my tendons and ligaments. I also was diagnosed with Osteoporosis and recently broke my foot simply walking to my car. The CDC had no idea what they are talking about. They haven't done the research and are causing far more problems than they are solving.
 

Issie

Well-Known Member
Anyone try a combination of ginger and turmeric or Curcurmin? Also, L-Malic acid? They help me.

I've also recently discovered, foods play a huge part in my pain. Having done a juice fast for 8 days and reintroducing foods one at a time - nightshade, chocolate and beans are a huge player. That's going to make it hard on me because I'm mostly vegan. I crave white potatoes, now I know those cravings where because of a sensitivity to them. They say your worst cravings could be because of an allergy.
I also have to stay off grains and dairy. Will be interesting to see what I can eat. Using good probiotic to try to get gut ecology and probable "leaky gut" better. Doing lots of cleanses at the moment too.

Issie
 

Issie

Well-Known Member
Find I have to alternate what you take and never take one thing for too long a period of time. Mix and match. What works for one kind of pain may not work for another. Also Yoga and stretching exercises make a lot of difference.
Have never used Tramadol have used Vicoden for short period. As long as I watch my sugar intake the pain seems to
be better also.
Yes, when I was taking Tramadol and Bentyl - I had to cycle on and off else they quit working.
 

Carole

Active Member
Yes, when I was taking Tramadol and Bentyl - I had to cycle on and off else they quit working.
What has helped me the most is increasing my dosage of Probiotics. Varied kinds but almost double them.
Schiff Intestinal Probiotics, Pro 5 , Lactose intolerant Probiotic . Have been able to discontinue VSL#3.
Sometimes taking Enteragam Med food supplement. I am not having any Gastro Surgery. My Dr. will not even go there with me. I am already doing the diet suggested by Paw. However I do better with more Protein from Fish and Chicken. Nothing fried ever. Nothing spicy. Do not feel good on the just Veggies diet.

Also don't know where anyone heard you cannot exercise with Gerd. Just don't need to do Crunches or twists in abdominal area. Exercise minimal and Yoga help everything-Particularly Brain and circulation.

Cough is only thing that keeps on. Taking very few meds . Too many side effects for me. Drinking a lot of high PH water.
 

Carole

Active Member
I get SO incredibly angry when any organization like the CDC speaks from above and makes declarations they know nothing about. First, I am alive today because of Opioid pain relievers. I was a depressed, lifeless person. Spending lonely and painful days, day after day. Never having any hope. There was no light at the end of the tunnel for me. No great cure right around the corner. And doctor after doctor, afraid to deal with Chronic Pain issues because doctors fear what they can not fix. I was like that for over 3 years, following one horrible year of almost dying 3 times. First there was Cancer, 3 months later 4 Pulmonary Embolisms and Open Heart Surgery a few months later. My body was so damaged and I just never recovered. Tired at first and then came the pain. Lost the support of friends and family, they didn't understand. This is nothing new, thousands of us lose everything. But the CDC doesn't understand or care about any of that. They are worried only about taking away the very thing that has brought life back to me and so many others.
People who suffer chronic pain look at Opioids differently, they are our savior. I speak only for me and those people I know who finally just made the decision to let these medicines help us. I would never abuse my Methadone because with it I can function. With it I can shower, I can do laundry, I can keep my house clean (mostly) and I can almost work. Methadone gives me a ton of energy....a ton! I never get high, instead my fog lifts and I can read again. I have found a new form of art which gives me joy and may even be a way to make a living. NONE of this would have been possible if I hadn't finally given in and taken Methadone. Again, I would never abuse what has saved me.
The problem of people overdosing on prescription drugs isn't the fault of chronic pain sufferers. In fact, Frontline, the critically acclaimed PBS series, did a great story about how the rise of Heroin abuse in this country is a direct result of such organizations clamping down on prescription pain killers. The White House was warned that if this pressure continued that Heroin use would sky rocket. The Mexican drug cartels were already setting up supplies in middle to upper class white suburban areas to get the Heroin flowing once the tap of prescription drugs stopped. In their special Chasing Heroin, Frontline followed a small suburb of Seattle as the town fell into the clutches of Heroin. I think the CDC should watch Chasing Heroin so they can see the result of their work. I wouldn't care so much if I weren't directly in the line of fire.
Having my life back, at least 60% back, I am terrified that one day my doctor will tell me she can no longer provide Methadone to me. I've even researched methadone clinics, that's how much I refuse to go back to the person I was when I was lying in bed, in pain and depressed. I refused to lose myself again. I even cut my dose on my own because of G.I. side effects.
I will note that I suffer from Fibromyalgia, not ME. Although I feel there are more similarities than differences between us, I am unfamiliar with how much constant pain ME suffers actually deal with. I do know that it all affected me, the pain, the fog, the exhaustion, the depression all of it. And Methadone has helped me with all of it. I really wish the CDC would stick to controlling disease and leave prescribing the drugs to the doctors.
 

Carole

Active Member
I agree with you. I take Tylenol but seldom do that. I would like to take something else when I have issues with pain, but anything strong enough makes me too dizzy and I cannot function for days. It is strange to me that the CDC sees nothing wrong with people getting High doses of Prednisone but wants to cut the pain reducing drugs for people that MAY become addicted?
Have a friend of mine that suffers from MS and horrible headaches. They are rec Pred and it does not help.

Still don't think the CDC rec that we have an illness??? I can't even find a Cough medicine I can tolerate.
 

Joan McDaniel

New Member
I experienced a great deal of pain but after finding a great deal of side effects in current pain meds I started doing research in homeopathic pain therapies. I wrote an article on my website
Putting the Fire Out with Natural Pain Relief
http://coconutcreamcare.com/2014/04/01/putting-the-fire-out-with-natural-pain-relief/
I found Turmeric to be the best. I am now pain free
I also found moving around stretching and massage to also be very effective. Using movement and massage to draining the Lymph system helped also that is why I started doing skin brushing.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I experienced a great deal of pain but after finding a great deal of side effects in current pain meds I started doing research in homeopathic pain therapies. I wrote an article on my website
Putting the Fire Out with Natural Pain Relief
http://coconutcreamcare.com/2014/04/01/putting-the-fire-out-with-natural-pain-relief/
I found Turmeric to be the best. I am now pain free
I also found moving around stretching and massage to also be very effective. Using movement and massage to draining the Lymph system helped also that is why I started doing skin brushing.
Thanks Joan for passing that on.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Dr. Clauw - well-known FM researcher just published this
https://www.ncbi.nlm.nih.gov/pubmed/26975749


Mayo Clin Proc. 2016 Mar 11. pii: S0025-6196(16)00102-6. doi: 10.1016/j.mayocp.2016.02.002. [Epub ahead of print]Opioid Use in Fibromyalgia: A Cautionary Tale. Goldenberg DL1, Clauw DJ2, Palmer RE3, Clair AG3.

Abstract

Multiple pharmacotherapies are available for the treatment of fibromyalgia (FM), including opioid analgesics. We postulate that the mechanism of action of traditional opioids predicts their lack of efficacy in FM. Literature searches of the MEDLINE and Cochrane Library databases were conducted using the search term opioid AND fibromyalgia to identify relevant articles, with no date limitations set. Citation lists in returned articles and personal archives of references were also examined for additional relevant items, and articles were selected based on the expert opinions of the authors.

We found no evidence from clinical trials that opioids are effective for the treatment of FM. Observational studies have found that patients with FM receiving opioids have poorer outcomes than patients receiving nonopioids, and FM guidelines recommend against the use of opioid analgesics.

Despite this, and despite the availability of alternative Food and Drug Administration-approved pharmacotherapies and the efficacy of nonpharmacologic therapies, opioids are commonly used in the treatment of FM. Factors associated with opioid use include female sex; geographic variation; psychological factors; a history of opioid use, misuse, or abuse; and patient or physician preference. The long-term use of opioid analgesics is of particular concern in the United States given the ongoing public health emergency relating to excess prescription opioid consumption.

The continued use of opioids to treat FM despite a proven lack of efficacy, lack of support from treatment guidelines, and the availability of approved pharmacotherapy options provides a cautionary tale for their use in other chronic pain conditions.
 

Seeksassy

Active Member
The CDC has not participated enough in the long term suffering of those afflicted with M.E. to make a call like this. They have continually denied the existence of M.E. as a serious pandemic over the last 30 years, attempted to block research for political reasons that would lead to their exposure of being complicit in trying to push this disease under the rug, leaving millions to find whatever relief they could, which led directly to the need for pain medications because little else was effective for the severe cases that left people completely crippled, bed and housebound. In addition, the CDC did not consider just how denying the existence of this disease for so long, perhaps wouldn't kill as many people as an immediate pandemic like ebola, but has ruined millions in regard to quality of life.

Years of prejudice, being ostracized and isolated socially because of chronic disbelief from the medical community and the encouragement by the mental health community that this disease is psychological rather than seriously physical, has left the seriously afflicted little choice but to seek relief through the monitoring of pain medication through Pain Management Specialists. The increase in this need is the direct result of the CDC's, and other government health organizations creating a world of confusion by first, coining the name Chronic Fatigue Syndrome instead of acknowledging Myalgic Ecephalomyelitis as the pandemic that keeps growing in the United States as well as other parts of the world. So the increase in opioid use has a great deal to do with the CDC itself... and now, all of a sudden, the CDC decides opioids are being overused and abused? Excellent way to shift responsibility to the victims of this disease and punish them for seeking this form of pain control.

Yes, there are now many other forms of possible pain control, but this is not a one size fits all disease. Many who have suffered for too long without the luxury of being able to afford treatments not covered by medical insurance companies, have become laden with co morbid conditions to M.E./Fibromyalgia that cause even more pain, e.g., costochondritis, hemiplegic migraines, psoriatic arthritis, thrush, among some.

So this is another insult regarding the integrity of our population that actually have found opioids to be beneficial, under the proper guidance and care of compassionate doctors who actually do understand that we do not have addictive personalities, and do not respond to opioids in ways that addicted personalities do. There is no "high" here. There is a sense of relief from crippling, intractable pain and as long as we continue to communicate responsibly with our doctors, have tried many other ways of controlling this type of pain without success over a certain amount of time, and we are clear of the effects, we have the right to choose this path rather than spend our time going in and out of revolving doors of ER's and hospitals.

Until the CDC has literally taken off their shoes and walked in the ones we can't anymore, and until they open ongoing dialogues with those groups who are advocates for all M.E./Fibro patients who need the consideration of proper medical treatment after being left to fight this disease alone and in social isolation and financial ruin for so long, then no responsible decisions can be made.

And for those who still insist on making M.E. a psychological issue, any kind of psychological or physical trauma in the extreme can break down an immune system, leaving it open to any one of a number of diseases and no amount of talking is going to cure a retroactive virus that takes over because of this kind of stress. It is now a phyisical problem and and needs to be researched as such and treated as such.

These are obviously not pain specialists. When opioids are taken at a dose just high enough to control pain, you don't get high and don't get addicted. Of course tolerance develops which is not the same as addiction. I did a lot of research before I agreed to take transdermal fentanyl 20 years ago. I was very afraid of becoming addicted. But 20 years later I have never been high and never craved this drug.

The only reason I'm on such a heavy drug is that, as it turns out, I'm allergic to most oral opioids (I get hives inside my eyekids, not fun). I only learned this after breaking my foot in a car accident and ended up with complex regional pain syndrome.

The sad thing is that opioids do NOTHING for my ME/CFS pain, but thank God they work for my CRPS. I'm not kidding when I say I doubt that I'd be alive today without the fentanyl. I have been told by pain specialists that I have a very high tolerance for pain, but there's no way I would have been able to live my entire life with the uncontrolled pain of CRPS. And absolutely nothing else worked.

For me, the only reason I wish I were not dependent on fentanyl (other than the obvious, not to be dependent on anything, stigma, cost, etc.) is that I can't try LDN.

As to how uninformed these folks are about pain management, it's incredible to me that they lump together folks who are addicted with those who have become dependent on opioids.
 

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