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

[frozenborderline]

Too brain fogged to look into this at the moment.

Okay, the gist is that glial activation plays a major role in opioid tolerance as well as pain, so adding glial cell in activators or tlr4 antagonists like ibudilast to chronic opioid regiment can dramatically reduce tolerance and hyperalgesia. Ibudilast has less than stellar track record in me/cfs but I wonder if it helps more in pain and tolerance development than PEM or fatigue. And there are other drugs with the same targets tho I cant think of them off top of head

 

[Hip]

glial activation plays a major role in opioid tolerance as well as pain

I believe in brain inflammation, it's both the microglia and the glial cells (astrocytes) which operate together to produce a large amount of glutamate. There was one ME/CFS brain autopsy which found the glial cells were infected with enterovirus, probably upsetting the system in some way.


Another player in brain glutamate is the glutamate transporters, which clear extracellular glutamate from the brain. If these transporters are down-regulated, you get glutamate build-up.

This paper says:

The glutamate transport system seems to play important roles in molecular mechanisms underlying chronic pain and analgesia. Downregulation of glutamate transporters (GluTs) often precedes or occurs simultaneously with development of hypersensitivity to thermal or tactile stimuli in various models of chronic pain

I did some experiments with ramping up glutamate transporter expression, to see if it would reduce anxiety and increase relaxation. It did help a bit, but not as much as I hoped.

I used the antibiotic amoxicillin to boost glutamate transporter expression, but there is a whole list of substances that also boost expression.

In that list, it is interesting to note that morphine withdrawal increases glutamate uptake, and increases the expression of the glutamate transporter GLT-1 in the hippocampus. This might explain why some ME/CFS patients experience major improvements in their symptoms the in the days after taking opioid pain killers.

Like both myself and @hamsterman found ME/CFS symptoms much improved in the days after taking the opioid dermorphin. This might be explained by changes in glutamate clearance.

 

[frozenborderline]

Like both myself and @hamsterman found ME/CFS symptoms much improved in the days after taking the opioid dermorphin. This might be explained by changes in glutamate clearance.

I'm still very excited about dermorphin, I'd really like to try it

 

[pattismith]

In that list, it is interesting to note that morphine withdrawal increases glutamate uptake, and increases the expression of the glutamate transporter GLT-1 in the hippocampus. This might explain why some ME/CFS patients experience major improvements in their symptoms the in the days after taking opioid pain killers.

Like both myself and @hamsterman found ME/CFS symptoms much improved in the days after taking the opioid dermorphin. This might be explained by changes in glutamate clearance.

That's interesting! In my case when I take opioids I am well the first day and bad the second day (whether I take it again or not), so the cytokinic effect of opioids @frozenborderline is pointing makes sense to me.

I plan to test different herbal TLR blockers, thank you for sharing.

 

[BrightCandle]

This is one heck of an interesting topic because I have had a mild remission this past month and I can't explain why. I had a back accident couple of months ago and couldn't get up, I was given IV morphine and a bunch of Tramadol for the back pain. I did some private physiotherapy to improve the situation but the answer is basically too much laying down and sitting, yeah not a lot I can do about that problem!

I was mostly bed bound before the back incident left me unable to move, the morphine solved the pain for an evening, A&E did nothing, but the end result of all those meds is right now I am a good 5 points higher in function than I was, I am more house bound than bed bound. I am gradually starting to loose function however about 1 month after finishing the course and the physio all of a sudden started causing problems and I had to stop. They were a real pain as they worsened my constipation and caused fecal compaction but regardless this seems to have a notable effect on me.

So now the question is can I get a similar effect otherwise because there is no way they are giving me scripts for Tramadol every day of the week and I would have to wave on and off the damn things to get the boost days.

 

[Hip]

I'm still very excited about dermorphin, I'd really like to try it

Tons of suppliers on Alibaba.com , though you often have to use business language to buy from them, as they are usually wholesalers rather than suppliers to individuals. But don't forget that a lethal dose may be as small as a few mg. When I tried it, I took 0.1 mg (100 micrograms) intranasally.


Have you ever linked your pain to small fiber neuropathy pain? I am just learning more about SFN at the moment. SFN is a condition often characterized by severe pain attacks that typically begin in the feet or hands.

 

[frozenborderline]

Have you ever linked your pain to small fiber neuropathy pain? I am just learning more about SFN at the moment. SFN is a condition often characterized by severe pain attacks that typically begin in the feet or hands.

I'm fairly confident that my pain is neither neuropathic or related to central sensitization. It's basically like arthritis style pain in the neck bc of cci and various structural issues and disc problems, so there is an inflammatory component and them there is also pressure headaches caused by the brainstem compression.

Wi th neuropathy or central sensitization there are drugs like ketamine that could "switch off" the pain signals with even one use I believe. With an ongoing, severe degenerative organic injury, I have to administer strong pain meds and anti inflammatories ongoing.

In fact I'm really terrified, I've been collar bound for awhile and put off pre surgical testing too long, and now I'm being made to wait too long until surgery by these surgeons. And I have symptoms that also indicate my instability creeping lower in the spine. And tethered cord.

 

[frozenborderline]

Have you ever linked your pain to small fiber neuropathy pain? I am just learning more about SFN at the moment. SFN is a condition often characterized by severe pain attacks that typically begin in the feet or hands.

I'm fairly confident that my pain is neither neuropathic or related to central sensitization. It's basically like arthritis style pain in the neck bc of cci and various structural issues and disc problems, so there is an inflammatory component but also pressure headaches caused by brainstem compression

 

[Hip]

It's basically like arthritis style pain in the neck bc of cci and various structural issues and disc problems, so there is an inflammatory component but also pressure headaches caused by brainstem compression

Ah OK, I assumed it was the regular sort of ME/CFS muscle or joint pain. So this may be more CCI-related.

 

[frozenborderline]

OK, I assumed it was the regular sort of ME/CFS muscle or joint pain. So this may be more CCI-related.

Well if I manage to hang on until surgery I will find out if all of the "regular me/cfs pain" goes away , like the muscle pain associated with PEM. Maybe it's all caused by cci.

Who knows. The cruel irony is that the sicker I get, the less I have the energy to figure out what is causing the sickness or how to solve it

 

[frozenborderline]

Ah OK, I assumed it was the regular sort of ME/CFS muscle or joint pain. So this may be more CCI-related.

Yeah, which makes it tricky to treat, beyond surgery. I've tried prolotherapy with no result and I have tried PT, and I also do traction as much as I can , but my neck seems to be deteriorating fast and i have no idea how to fix it or ameliorate that level of pain.

 

[Stretched]

Have you ever linked your pain to small fiber neuropathy pain? I am just learning more about SFN at the moment. SFN is a condition often characterized by severe pain attacks that typically begin in the feet or hands.

Unbelieveable, that this has popped up here i. e. Small Fiber Neuropathy. I was diagnosed with it last year after an intolerable attack of stabbing pain in my feet, following a short daily walk. A neurologist did nerve perfusion studies and referred me to a pain clinic, luckily. He couldn’t offer much in treatment options and opined there’s
likely a wheelchair in the future. Very disconcerting.

In short, I have been on opioids since, and of course, now dependent on them. They are hard to get and keep because of all the ‘Opiod Crisis’ hyperbole. The research boils down to opioids being the only reliable, real pain reliever. Any other pain abatement protocols are likely the result of the placebo effects. While they can be a life saver they have their side effects and other issues.

I’ve spent a lot of time studying Peripheral Neuropathy and SFN, it’s course, lack of SFN pain treatments and opioids. It’s as life-changing as MECFS and from my experience with both, believe they are interrelated. I’d be happy to discuss the subject if anyone else is afflicted or is interested In related topics.

 

[Wayne]

The research boils down to opioids being the only reliable, real pain reliever. Any other pain abatement protocols are likely the result of the placebo effects.

@Stretched -- I would have to respectfully disagree. I think DMSO has significant potential to alleviate pain for many chronic pain sufferers. It's ability to improve circulation and reduce inflammation likely contribute to its amazing pain relieving capabilities.

Whenever I make a comment on the potential for DMSO, I usually opine that it could very likely be the top selling prescription drug in the world--if only it could be patented. But it can't, so for now, it's just a highly effective, safe, and extremely inexpensive product that can work wonders, but will likely never be endorsed by conventional medicine.

 

[Stretched]

@Stretched -- I would have to respectfully disagree. I think DMSO has significant potential to alleviate pain for many chronic pain sufferers. It's ability to improve circulation and reduce inflammation likely contribute to its amazing pain relieving capabilities.

Whenever I make a comment on the potential for DMSO, I usually opine that it could very likely be the top selling prescription drug in the world--if only it could be patented. But it can't, so for now, it's just a highly effective, safe, and extremely inexpensive product that can work wonders, but will likely never be endorsed by conventional medicine.

Hmmm, while I’ve seen the acronym around I’m not familiar with it. I’ll look it up and hope I find something
usable. Nerve pain is up there with electrocution. I wonder why the pain MDs aren’t aware of DMSO, being anesthesiologists? IMO, opioids are not the right medicine, only placators, and problematic. I’d eat pine cones in rock soup if it would work. Thanks for the idea=)

 

[valentinelynx]

I wonder why the pain MDs aren’t aware of DMSO, being anesthesiologists?

DMSO has been around for a long time, and some MDs are aware of it. It's used for bladder pain in interstitial cystitis and sometimes for shingles. However, studies of its effectiveness for this and other types of pain are apparently scanty and equivocal. Here's a (very brief) summary of its uses. I recall I bought some several years ago and tried it on my burning hands. Can't say it had any notable benefit.

 

[Wayne]

However, studies of its effectiveness for this and other types of pain are apparently scanty and equivocal.

Hi @valentinelynx -- I have to respectfully disagree with that (as well I guess). I don't go out of my way to be disagreeable, but here I am two posts in a row disagreeing lol. -- My understanding is DMSO is one of the most researched compounds in the world, but most of it was done overseas. The primary researcher in the U.S. was a Dr. Stanley Jacobs, who I believe spent over 30 years researching it exclusively. His website dmso.org lists a number of research papers he published.

I've used a combination of DMSO & Magnesium Oil for several years now, mostly applying it to any muscle or area of my body that was tender or painful. I started using this combination on some lower back pain, and some neck pain as well. I got very good results from doing that, and also noticed a very curious thing. I would have some left over on my hands, and would rub the remnants over my eyelids (I'd read DMSO was good for the eyes, but didn't want to put it directly into my eyes).

Totally unexpectedly, my chronic eye twitching of several years duration went away after about 2-3 days. The serious eyestrain I would experience after being on the computer for only 5-10 minutes went away as well. These days I can be on the computer for hours with no problem.

Interestingly, I read that the pain relieving aspects of DMSO first became known from the use of the cleaning product Pine Sol (which is short for solvent from pine trees--which has DMSO in it. Women who began using it back in the 1950's noticed the arthritis pain in their hands went away. -- BTW, another compound that can be very effective for pain management is MSM. The S in DMSO and the S in MSM (methylsulfonylmethane) both stand for a "sulfur" compound.

@Stretched -- Here's a link to EarthClinic where they have a variety of testimonials you might find interesting, some of them on pain reduction...

• DMSO and Cayenne for Pain (2 )

 

[Stretched]

@Wayne, @valentinelynx Great posts, guys. Many thanks For the references. I’ve experienced many types of pain but this stuff is by far the worst, and I’m not a complainer nor tenderfoot, so to speak,~) Unfortunately, I’ve got the progressive, chronic type; nerves dying - reason as yet unknown. It's hard to explain but here’s one brief excerpt that kind of summarizes it, from the pros:

In many ways, the sensation of neuropathic pain is unique. The area of pain may be widespread (diffuse), or limited to a single nerve or several nerves. The pain may be described variously as feeling like a stabbing, burning, electric shock, or a freezing sensation. It may worsen at night. Some people may experience temporary numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others may experience more extreme symptoms, such as burning pain, muscle wasting or even paralysis.
As a chronic condition, neuropathic pain impacts function and quality of life. Neuropathic pain underlies an estimated 30-65% of the activity seen at hospital pain clinics. In severe cases of chronic pain, the health-related quality of life is ranked as worse than other pain conditions, heart failure, or even cancer. (2-3)

Neuropathy, Neuropathic
Pain, and Painful
Peripheral Neuropathy
— Many kinds, causes, and treatments
Reviewed by Nick Christelis, MBBCH, FRCA, FFPMRCA, FANZCA, FFPMANZCA
Co-chair, International Neuromodulation Society Public Education, Outreach, and Website Committee, 2016 -
Director and Co-Founder
Victoria Pain Specialists, Richmond, Australia

 

[valentinelynx]

My understanding is DMSO is one of the most researched compounds in the world, but most of it was done overseas. The primary researcher in the U.S. was a Dr. Stanley Jacobs, who I believe spent over 30 years researching it exclusively. His website dmso.org lists a number of research papers he published.

I don't like to disagree, either. I hate confrontation. For this I suppose the phrase "we'll have to agree to disagree" was invented . "Overseas" research, especially that not available in this country is notoriously unreliable, and often cited by individuals or companies that want to sell something that really hasn't been proven. As for Dr. Stanley's list of references, I find it scanty and full of poor quality publications, some of which aren't even about the disease applications under which they are cited.

DMSO has earned FDA approval only for interstitial cystitis, which rather remarkable, given that the supporting research was described thus in a 2017 review:

"The current evidence backing DMSO is a constellation of cohort studies and a single randomized-controlled trial versus placebo. The optimal dose, dwell time, type of IC most likely to respond to DMSO, definitions of success/failure and the number of treatments are not universally agreed upon. Improvements in study design, phenotyping patients based on symptoms, as well as the emergence of reliable biomarkers of the disease may better guide the use of DMSO in the future."​

None of this means that DMSO is not useful for various things, including neuropathic pain. What it means is that there is still much to be done to understand its potential value and application in medicine.

 

[Wayne]

None of this means that DMSO is not useful for various things, including neuropathic pain. What it means is that there is still much to be done to understand its potential value and application in medicine.

I think I can agree with that! Unfortunately, it's unlikely very much will ever be done to more fully understand DMSO's potential value and application in medicine. For one very good reason: there's no money to be made from doing so. This dynamic in modern conventional medical research is perhaps the biggest impediment to discovering new low cost, safe, and effective treatments for many ailments.

BTW, DMSO is almost miraculous in the way it can rapidly reduce inflammation in cases of close head injuries:

Dimethyl sulfoxide in the management of patient with brain swelling and increased intracranial pressure after severe closed head injury
A Kulah 1, M Akar, L Baykut

• PMID: 2290457
• DOI: 10.1055/s-2008-1053579

Abstract
The results of a prospective study on the effects of dimethyl sulfoxide (DMSO) in patients with severe closed head injuries causing brain edema and increase in intracranial pressure (ICP) are presented. 10 patients were selected and carefully analyzed according to Glasgow coma scale (GCS) scores and severity of brain edema. The results demonstrate that DMSO rapidly reduces the raised ICP, increases the cerebral perfusion pressure (CPP) and improves the neurological course and outcome without affecting the systemic blood pressure and patient responsiveness except only in one patient. We also point out that the rebound effect does not occur.

 

[Stretched]

“There is always room for disagreement between honorable men (women).” - anonymous.