Opiates and central sensitivity

[Braz]

To start with, I don´t really know what´s wrong with me. My health has gone south and the local healthcare system is awful.

I still take that godawful clonazepam (2mg). In the country I live in it is sometimes prescribed in palliative care ...

Recently I´ve had a few experiences with opiates. Dihydrocodeine to be specific.

It didn´t do much for actually suppressing pain, but that drug increased my self confidence and ability to tolerate pain, but only a bit. No euphoria. Then, the day after that I may actually feel pain that I didn´t feel before. Specifically, I lost a lot of muscle mass and it feels like the muscle fibers in my upper body are thin wires. Right now I feel pain in muscle fibers on my chest and arms, even a bit in my legs. Or perhaps I feel it in my brain, not sure how to put it. Time may also seem to pass more slowly the next day.

I´m familiar with the concept of central sensitization. I know I certain doc Cheney used to prescribe it for that purpose ... opiates, GABA or otherwise, my CNS is rather sensitized.

Do these (mostly unhelpful) experiences with opiates seem familiar to members ?

 

[Marigold7]

To start with, I don´t really know what´s wrong with me. My health has gone south and the local healthcare system is awful.

I still take that godawful clonazepam (2mg). In the country I live in it is sometimes prescribed in palliative care ...

Recently I´ve had a few experiences with opiates. Dihydrocodeine to be specific.

It didn´t do much for actually suppressing pain, but that drug increased my self confidence and ability to tolerate pain, but only a bit. No euphoria. Then, the day after that I may actually feel pain that I didn´t feel before. Specifically, I lost a lot of muscle mass and it feels like the muscle fibers in my upper body are thin wires. Right now I feel pain in muscle fibers on my chest and arms, even a bit in my legs. Or perhaps I feel it in my brain, not sure how to put it. Time may also seem to pass more slowly the next day.

I´m familiar with the concept of central sensitization. I know I certain doc Cheney used to prescribe it for that purpose ... opiates, GABA or otherwise, my CNS is rather sensitized.

Do these (mostly unhelpful) experiences with opiates seem familiar to members ?

In a word, no. I was on dihydrocodeiene many years and now take Tylex. It relieves pain well which is all that matters to me.

 

[TrixieStix]

I have been on opiates for about 5 years now and my experience with them has been positive. I recognize the risk for addiction, but studies have shown addiction rates in those with actual serious chronic pain are quite low. I was first prescribed opiates for severe nerve damage/compression that surgery failed to improve and then shortly after very major surgery and post-surgical infection was when I became ill with ME/CFS. So for me personally it's hard to tease out what positive or negative effects it has on my ME/CFS symptoms. But I've never noticed any correlation at all with my opiate and my symptom worsening, disease worsening, etc. With other drugs that I have had a bad reaction to, exacerbated my symptoms, and so on the side effects/correlation are pretty immediate.

Also I do very occasionally take a double dose and the effect is pretty pronounced sometimes in how much better I feel when I do this, and I am not talking about a euphoria "high" feeling rather it makes me feel somewhat "normal" for a few hours. I would love to know why that is?

However the opiate I take is the only drug thus far that caused me no intolerable or serious side effects (just constipation which I easily treat with Mirilax). Also I have not had to keep upping my dose over and over as you often hear about being necessary. Perhaps that has to do with individual genetics? I have been on the same dose for years and it still works just as well for me as it did in the beginning. I take it everyday round the clock (it's not long acting). I've tried other medications that are considered "much safer" than opiates like Gabapentin, Ultra Low Dose Naltrexone, etc and every single one of them gave me intolerable and at times severe side effects. The drugs that are supposedly "well tolerated" have proven to be anything but for me.

To be clear I am not advocating opiate use, but rather just trying to provide my personal experience which tends to go against the typical narrative we hear in the media.

 

[Marigold7]

I have been on opiates for about 5 years now and my experience with them has been positive. I recognize the risk for addiction, but studies have shown addiction rates in those with actual serious chronic pain are quite low. I was first prescribed opiates for severe nerve damage/compression that surgery failed to improve and then shortly after very major surgery and post-surgical infection was when I became ill with ME/CFS. So for me personally it's hard to tease out what positive or negative effects it has on my ME/CFS symptoms. But I've never noticed any correlation at all with my opiate and my symptom worsening, disease worsening, etc. With other drugs that I have had a bad reaction to, exacerbated my symptoms, and so on the side effects/correlation are pretty immediate.

Also I do very occasionally take a double dose and the effect is pretty pronounced sometimes in how much better I feel when I do this, and I am not talking about a euphoria "high" feeling rather it makes me feel somewhat "normal" for a few hours. I would love to know why that is?

However the opiate I take is the only drug thus far that caused me no intolerable or serious side effects (just constipation which I easily treat with Mirilax). Also I have not had to keep upping my dose over and over as you often hear about being necessary. Perhaps that has to do with individual genetics? I have been on the same dose for years and it still works just as well for me as it did in the beginning. I take it everyday round the clock (it's not long acting). I've tried other medications that are considered "much safer" than opiates like Gabapentin, Ultra Low Dose Naltrexone, etc and every single one of them gave me intolerable and at times severe side effects. The drugs that are supposedly "well tolerated" have proven to be anything but for me.

To be clear I am not advocating opiate use, but rather just trying to provide my personal experience which tends to go against the typical narrative we hear in the media.

Thanks for this. Here in Ireland, there is an alert out for anyone buying or taking codeine and the lengths some pharmacists go to when folk seek the mild OTC versions are ???? I get tylex on prescription and have not increased dosage in years. which addiction would do .

 

[Nancih]

Re: low dose naltrexone. TrixieStix mentioned having tried Ultra Low Dose Naltrexone. You said you had bad side effects, but I really do feel like I'd like to try it before once again increasing my opiate doseage. I've done some basic research on the web and was about to call my pharmacist, but let me ask here: where did you get it and what was it called. Bumping around the web, it doesn't sound like it has been approved for sale, but I might be just looking at old posts. Does anybody know the name for this drug or how it is available in the US?

 

[Wonko]

To start with, I don´t really know what´s wrong with me. My health has gone south and the local healthcare system is awful.

I still take that godawful clonazepam (2mg). In the country I live in it is sometimes prescribed in palliative care ...

Recently I´ve had a few experiences with opiates. Dihydrocodeine to be specific.

It didn´t do much for actually suppressing pain, but that drug increased my self confidence and ability to tolerate pain, but only a bit. No euphoria. Then, the day after that I may actually feel pain that I didn´t feel before. Specifically, I lost a lot of muscle mass and it feels like the muscle fibers in my upper body are thin wires. Right now I feel pain in muscle fibers on my chest and arms, even a bit in my legs. Or perhaps I feel it in my brain, not sure how to put it. Time may also seem to pass more slowly the next day.

I´m familiar with the concept of central sensitization. I know I certain doc Cheney used to prescribe it for that purpose ... opiates, GABA or otherwise, my CNS is rather sensitized.

Do these (mostly unhelpful) experiences with opiates seem familiar to members ?

This is the way my neuropathic pain reacts to opiate only treatment (in my case the neuropathic pain is probably caused by diabetes). Until I was put on gabapentin the neuropathic pain just got worse the longer I was taking opiates. The opiates would reduce the pain, a bit, initially but over the course of several days it would get worse, ad infinitum, until it was so disruptive I couldn't form thoughts.

However drugs used to treat neuropathic pain generally don't touch other types of pain, so I do need opiate based painkillers (currently 30/500 co-codamol and oramorph) as well as gabapentin. This combination doesn't completely get rid of the pain, but it does, if timed correctly, allow me to sleep occasionally.

 

[TrixieStix]

Re: low dose naltrexone. TrixieStix mentioned having tried Ultra Low Dose Naltrexone. You said you had bad side effects, but I really do feel like I'd like to try it before once again increasing my opiate doseage. I've done some basic research on the web and was about to call my pharmacist, but let me ask here: where did you get it and what was it called. Bumping around the web, it doesn't sound like it has been approved for sale, but I might be just looking at old posts. Does anybody know the name for this drug or how it is available in the US?[/QUOTE

It was prescribed to me by my ME/CFS specialist & had to be compounded at a compounding pharmacy. Also if your on a substantial dose of opiates you have to do "Ultra Low Dose Naltrexone".