Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

heapsreal

iherb 10% discount code OPA989,
Messages
9,451
Likes
9,229
Location
australia (brisbane)
I have used tramadol for chronic back issues and have found it helps ME symptoms as well, especialyy when i first used it, it helped with energy and mental clarity etc, it still does now but not to the same degree. I think some of its positive effects are not just from opiod receptors but tramadol also affects serotonin and noradrenaline, and maybe it does this in some unique way as i and others seem to tolerate it well compared to some ad's that also work on similar receptors?? But tramadol is one of those meds that people either like or dislike due to sied effects. I did use a slow release morphine for a couple of months for my back and i found it not as useful as tramadol??
 

Tristen

Senior Member
Messages
638
Likes
493
Location
Northern Ca. USA
In order to obtain some of the ME/CFS neurological benefits from opioid pain medications, but without taking these meds daily, what you could consider doing is taking a good dose of these opioid medications just once a week.

Since you say the neurological benefits of these opioid medications last for 1 to 2 days even after stopping the medication, this suggests that a single dose of the opioid medication, taken on one day, would give you around two or more days in total of ME/CFS neurological symptom relief. Two days a week with a clearer mind is better than nothing.

Taking an opioid medication just once a week like this should help avoid any tolerance issues, especially if you also take supplements like resveratrol, taurine and transdermal magnesium, which help prevent opioid tolerance.

Just an idea.

(Incidentally, the half life of oxycodone and hydrocodone is around 4 hours, so these drugs are going to be pretty much completely out of your system after 24 hours.)
I agree that is a good idea. I was thinking earlier that I should just take it on the bad days, but a regular schedule of 1-2 a week would probably be better. Stay ahead of it.
 

Tristen

Senior Member
Messages
638
Likes
493
Location
Northern Ca. USA
In Dr Cheney’s 2009 Fairfax presentation he claimed hydrocodone was universally beneficial to ME/CFS sufferers, as measured by his ETM machine. From my personal experience with the supplements and drugs Cheney claims are beneficial, as well as those contraindicated, I can tell you that what his ETM machine is gauging is the degree of oxidative stress/excitotoxicity. For some reason the folks that actually feel this change in degree of excitotoxicity are in the minority. But those that feel it may be the ones that would most benefit from the therapies he recommends.
Interesting, thanks Dufresne. What is Cheney recommending these days? I stopped following him way back, but maybe his newer stuff is more appealing.
 

Dufresne

almost there...
Messages
1,017
Likes
1,344
Location
Montreal
Interesting, thanks Dufresne. What is Cheney recommending these days? I stopped following him way back, but maybe his newer stuff is more appealing.
He doesn’t go so far as to recommend opiates but he does state they’re beneficial to our condition. Other substances he labels as good are magnesium, wormwood/artemisinin, benzodiazepine, cell signalling factors from heart and brain, hydroxycobalamin for some (but never methylcobalamin). His idea behind what’s causing our energy problems is “there’s something stimulating the NMDA receptor.” He also believes the cellular antioxidant that’s getting creamed is SOD, not GSH. Everything he went through in this lecture corresponded to my observations in such an uncanny way. I converted right away.
 

Tristen

Senior Member
Messages
638
Likes
493
Location
Northern Ca. USA
He doesn’t go so far as to recommend opiates but he does state they’re beneficial to our condition. Other substances he labels as good are magnesium, wormwood/artemisinin, benzodiazepine, cell signalling factors from heart and brain, hydroxycobalamin for some (but never methylcobalamin). His idea behind what’s causing our energy problems is “there’s something stimulating the NMDA receptor.” He also believes the cellular antioxidant that’s getting creamed is SOD, not GSH. Everything he went through in this lecture corresponded to my observations in such an uncanny way. I converted right away.
Interesting. I was taking SOD years ago due to coming across someones research....forget where. NMDA contiues to come up everywhere as well. Also, I find HydroxyB12 beneficial, but Methyl B12 makes me worse immediately, regardless of the dose. Is his Fairfax presentation available anywhere?

Thanks Dufresne
 

Marco

Grrrrrrr!
Messages
2,386
Likes
3,222
Location
Near Cognac, France
Marco: It does seem that both mu-opioid receptor agonists, and delta-opioid receptor agonists too, inhibit excitatory glutamate neurotransmission:

Activation of mu opioid receptor inhibits the excitatory glutamatergic transmission in the anterior cingulate cortex of the rats with peripheral inflammation

I personally suspect that the source of the excess glutamate in ME/CFS derives in part from microglial activation.
Thanks for the links Hip.

OK - we're talking rats here but the cingulate cortex/gyrus is an area that seems to get whacked in normal ageing and also in the various dementias with familiar impairments in cognition including memory, executive function; mood and attention orientation/motivation.

Differential Regional Atrophy of the Cingulate Gyrus in Alzheimer Disease: A Volumetric MRI Study

http://cercor.oxfordjournals.org/content/16/12/1701.full

I agree that the glial cells are likely to be implicated.

I wonder has anyone ever looked at GAD antibodies or glutamate transporters in ME/CFS. The problem in the Wired and Tired type may be either due to impaired conversion of glutatmate to GABA or impaired clearance of extracellular glutamate.
 

Dufresne

almost there...
Messages
1,017
Likes
1,344
Location
Montreal
Interesting. I was taking SOD years ago due to coming across someones research....forget where. NMDA contiues to come up everywhere as well. Also, I find HydroxyB12 beneficial, but Methyl B12 makes me worse immediately, regardless of the dose. Is his Fairfax presentation available anywhere?

Thanks Dufresne
I’ve misplaced my copy of the Fairfax talk, and I don’t remember where I ordered it from. In fact I think the link no longer exists. It would be great if someone would upload it to YouTube. The information in this presentation has been far more useful than anything I’ve come across. Here’s a link to a synopsis of it: http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1346629

The therapies he claims to be universally deleterious for PWME’s are: CoQ10, vitamin D, MB12, adrenal glandular, thyroid hormones, oxygen. There may be more but I can’t recall at the moment.

Cheney states that PWME’s SOD levels increase by 50% while taking artesunate, a derivative of artemisinin. This is basically what I get from taking wormwood, and it’s sustainable as long as I continue with it. It feels like a 50% shift towards a full state of health! However this benefit is only achieved if I’m on a very low carb/sugar diet. Unfortunately I haven’t been able to use it for some time due to problems with sensitization, but I strongly urge anyone with noticeable excitotoxicity to try this stuff.
 

Marlène

Senior Member
Messages
443
Likes
240
Location
Edegem, Belgium
LDN makes me very sick, even at miniscule doses......well, it did last time I tried it like 10 years ago. LDN is only an opiate antagonist....maybe the agonist like that found in the narcotics is needed for the effect.
I understand what you must have felt. It took me almost 2 years to get to the advised dose of 4mg. I was sick like a dog for many months but now so many symptoms have disappeared and never come back.

LDN obviously stimulated the increase of opiate receptor production which in turn delivered more endorphines.
 
Messages
445
Likes
505
Location
Georgia
I wonder has anyone ever looked at GAD antibodies or glutamate transporters in ME/CFS. The problem in the Wired and Tired type may be either due to impaired conversion of glutatmate to GABA or impaired clearance of extracellular glutamate.
Well said, Marco. So many theories; only a few have merit. Many are called, few are chosen. Too much glutamate has more proof than any other ideas floating around.

Treatment with Ketamine has been shown to wipe out Major Depressive Disorder. And reduce many intractable pain disorders. Patients with RSD pain, reduced to a life of torture, made 90% pain-free with Ketamine. It works on the glutamate receptors high up inside the brain. The location, I suspect, where the genesis of our illness resides.

According to this study, NMDA increases the activity of another receptor, AMPA, and this boost in AMPA activity is crucial for ketamine’s rapid antidepressant actions. NMDA and AMPA are receptors for the neurotransmitter glutamate. The glutamate system has been implicated in depression recently. This is a departure from previous thinking, which had focused on serotonin and norepinephrine. The glutamate system may represent a new avenue for treatment and research.[78]
 

Tristen

Senior Member
Messages
638
Likes
493
Location
Northern Ca. USA
I understand what you must have felt. It took me almost 2 years to get to the advised dose of 4mg. I was sick like a dog for many months but now so many symptoms have disappeared and never come back.

LDN obviously stimulated the increase of opiate receptor production which in turn delivered more endorphines.
Thanks for sharing your experience on this Marlene. I'm kinda scared of LDN after having such horrible reactions to it more than once in the past. But maybe it's time for another try, especially since it's been so many years and things change.
 
Messages
50
Likes
68
Location
australia
Great thread...

I can't believe how much better I feel when I take 2 Nurofen Plus (200mg Ibuprofen & Codeine phosphate 12.8mg). For me it is the difference between staying home or being able to get out and go to the shops (or out to a social function). ATM I am having trouble walking more than 10metres, this is the only drug that helps me.

It helps me with IBS, IC, headaches, tight sore throat, PENE, general muscular aches and pains, stops me from feeling like I have a virus, the list goes on....

I only take it sparingly though as I am scared of building up a tolerance.
 

Misfit Toy

Senior Member
Messages
4,110
Likes
9,905
Location
USA
Man, I want to feel better when I take opiates, as I often have to for FM. I itch like crazy. Last night I took Tramadol and was up all night, my brain just floating. I don't get it. I have a certain amount I can take and if I go over that amount, I am sick. And opiates make me angrier than a rabid dog. I can be hostile on them. I used to love Fentanyl, and even that has changed on me. I used to have a high feeling on it and I felt better. Now, I can't sleep on the patch. But sometimes, when I have extreme pain...I cave and throw on a patch. It's the only thing that works, but boy does it make my voice raspy and my mouth super dry. I feel stoned.

I would love to be able to take opiates...really take them so that I could escape from this illness more...yup, I just said that. I can never drink too much or take opiates so no worries for my doc that I would become a bit of a junkie. It's just not enjoyable unless I get the dose right. Seriously, like a 1/4 of a pill.

Codeine, I am itching like no other. Benadryl doesn't even calm it down. Morphine is the absolute worst. Codeine, I could take a crumb and I can't sit still from itching. A true allergy, I suppose. Heroine would probably kill me. I have never had any desire for that crazy drug.

I am so glad that so many feel better on opiates! Go for it!! If it makes you feel better, enjoy.
 

Asklipia

Senior Member
Messages
998
Likes
1,395
This might be one of the ways MK-4 (Menatetrenone) was so helpful for me.

http://www.ncbi.nlm.nih.gov/pubmed/11325029
Antinociceptive effect of vitamin K2 (menatetrenone) in diabetic mice.

Onodera K, Zushida K, Kamei J.
The antinociceptive effect of vitamin K2 (menatetrenone) in diabetic mice was examined using a tail-pressure test. Intraperitoneal injection of menatetrenone (10-100 mg/kg) produced a dose-dependent increase in the nociceptive threshold in diabetic mice. There was no significant difference between non-diabetic and diabetic mice in the menatetrenone-induced changes in the nociceptive threshold. The results suggest the therapeutical usefulness of menatetrenone for treating painful diabetic neuropathy and osteoporosis.


Is this mu, delta or else? I cannot access the full text but maybe someone can?

And as to the after-effects I did notice that it affected the way I reacted to opiates. It kind of reduced my sensitivity to them for a while. When I broke my arm two years ago (not due to osteoporosis but because of a bad accident), it took me quite a bit of opium to forget the pain. That is, opium did not work on my pain as it used to do when I broke a leg twenty years ago when I was "healthy".
This is why I immediately wrote on the K2 forum for autism that children given vitamin K2 might feel more pain than we thought.
And what about babies who get a shot of K2 at birth? They can't complain and might hurt more.

The good news is K2 helped me immensely, I was never addicted to it and I occasionally take 15 mg (less than once a week) on a particularly sunny day when I go sunbathing all day.
Thank you Tristen and others for all this info.
Lots of good wishes!
Be well!
Asklipia
:devil: FFP :devil:
 

Marco

Grrrrrrr!
Messages
2,386
Likes
3,222
Location
Near Cognac, France
Man, I want to feel better when I take opiates, as I often have to for FM. I itch like crazy. Last night I took Tramadol and was up all night, my brain just floating. I don't get it. I have a certain amount I can take and if I go over that amount, I am sick. And opiates make me angrier than a rabid dog. I can be hostile on them. I used to love Fentanyl, and even that has changed on me. I used to have a high feeling on it and I felt better. Now, I can't sleep on the patch. But sometimes, when I have extreme pain...I cave and throw on a patch. It's the only thing that works, but boy does it make my voice raspy and my mouth super dry. I feel stoned.

I would love to be able to take opiates...really take them so that I could escape from this illness more...yup, I just said that. I can never drink too much or take opiates so no worries for my doc that I would become a bit of a junkie. It's just not enjoyable unless I get the dose right. Seriously, like a 1/4 of a pill.

Codeine, I am itching like no other. Benadryl doesn't even calm it down. Morphine is the absolute worst. Codeine, I could take a crumb and I can't sit still from itching. A true allergy, I suppose. Heroine would probably kill me. I have never had any desire for that crazy drug.

I am so glad that so many feel better on opiates! Go for it!! If it makes you feel better, enjoy.

There is the very real possibility that ME/CFS is heterogeneous in fact I'd go further and suggest that the exact range of symptoms and reactions to meds will be very individual. In effect we have all been lumped together on the basis of 'fatigue' with in most cases minimal other investigations.

If you don't mind me asking - would you describe yourself as 'Wired and Tired' or more generally fatigued?
 

Hip

Senior Member
Messages
16,434
Likes
35,406
And opiates make me angrier than a rabid dog.
Looks like anger and irritability are common side effects with opioids: see here and here.


I find as my ME/CFS progresses, I have started to get more irritability/anger. Not for any external reason; irritability is just a mental state that ME/CFS creates (ie, it is part of the ME/CFS brain biochemistry).
 

Tristen

Senior Member
Messages
638
Likes
493
Location
Northern Ca. USA
Looks like anger and irritability are common side effects with opioids: see here and here.


I find as my ME/CFS progresses, I have started to get more irritability/anger. Not for any external reason; irritability is just a mental state that ME/CFS creates (ie, it is part of the ME/CFS brain biochemistry).
Not for me. The meds balance me out just as if it's a chemical that's been missing from my brain forever. They make me less angry and irritable (on the rare occasion I would be feeling such).

I do get irritable when crashed now days. That's new for me. I think it's just because after 20 years (Sept 1993) with this disease, I have a harder time coping with the bad days. Enough already!
 

Hip

Senior Member
Messages
16,434
Likes
35,406
Another significant factor here is that autoantibodies to mu-opioid receptors were found in 15% of ME/CFS patients (ref: 1). This suggests that in some ME/CFS patients, there will be compromised neurotransmission in mu-opioid receptors.