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

[Marco]

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.

Very interesting Hip.

Anti-nuclear antibodies were found in 56.7% (34/60) of patients with CFS, but anti-nuclear antibody titers did not correlate with the activities of the above four autoantibodies.

If I understand this correctly, does this mean that 51% of CFS patients had ANA titres suggesting autoimmune disease but that specific antibodies to the four tested neurotransmitter receptors accounted for only 22% of patients?

Which leaves room for antibodies to other receptors presumably?

 

[Marco]

Marco, I am definitely the wired and tired. I am fatigued, clearly, but the wired and tired is more like it.

Thanks Spitfire.

There goes that theory

 

[Tristen]

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.

This sounds very probable in my situation.

 

[Hip]

If I understand this correctly, does this mean that 51% of CFS patients had ANA titres suggesting autoimmune disease but that specific antibodies to the four tested neurotransmitter receptors accounted for only 22% of patients?

Which leaves room for antibodies to other receptors presumably?

I am not sure about the ANA results of that study. Typically, ANA is negative in ME/CFS patients, so why that study found 56.7% of ME/CFS with positive ANA, I am not sure. It is a bit strange.

The other findings of the study were:

53.3% of ME/CFS patients had autoantibodies to the M1 muscarinic acetylcholine receptor.
15.2% of ME/CFS patients had autoantibodies to the mu-opioid receptor.
5.0% of ME/CFS patients had autoantibodies to the D2 dopamine receptor.
1.7% of ME/CFS patients had autoantibodies to the 1A 5-HT receptor.


I think the autoantibodies to the M1 muscarinic acetylcholine receptor is very interesting. A while ago I wrote up a hypothesis that autoantibodies to muscarinic acetylcholine receptors underpin ME/CFS.

 

[Marco]

Thanks Hip - I missed the 53.3% figure for some reason (still doesn't total to 100 though).

Interesting hypothesis. I came across this paper the other day which may be relevant :

Sympathetic Nervous System Increases Proinflammatory Cytokines and Exacerbates Influenza A Virus Pathogenesis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941093/

A very familiar list of proinflammatory cytokines. Could having autonomic dysfunction already skewed to a high sympathetic/low parasympathetic ratio explain why a minority go on to develop ME/CFS after exposure to a common virus?

 

[Hip]

Interesting hypothesis. I came across this paper the other day which may be relevant :

Sympathetic Nervous System Increases Proinflammatory Cytokines and Exacerbates Influenza A Virus Pathogenesis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941093/

A very familiar list of proinflammatory cytokines. Could having autonomic dysfunction already skewed to a high sympathetic/low parasympathetic ratio explain why a minority go on to develop ME/CFS after exposure to a common virus?

Low dose propranolol might be worth trying, as it reduces sympathetic nervous system activity:

Low doses of propranolol (again 1/5 to 1/10 the dose that is prescribed for blood pressure control) can block the sensory receptors, reducing the total signal to the sympathetic nervous system, allowing the normal sympathetic reflexes to be re-established, leading to much more normal control of metabolite levels in muscle and brain.

Source: Propanolol (Inderal) in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) :: Health RisingHealth Rising

 

[Tristen]

My first me/cfs doc said she was getting some good results with Propanolol. Didn't work for me, but worth a try for some.

 

[Marco]

My first me/cfs doc said she was getting some good results with Propanolol. Didn't work for me, but worth a try for some.

FWIW I was prescribed Propaolol (80mg then 40mg) for temperature regulation problems/severe heat intolerance as the Dr must have presumed (probably correctly) a sympathetic NS problem.

It certainly cured the overheating problem. I was absolutely freezing and although this was many years ago I remember feeling like death and had to quit them after a few days. No way I could have functioned enough to work and I don't think I even tried the lower dose.

Not that this invalidates the theory. If the parasympathetic side is downregulated and you then suppress the sympathetic what does it leave - the enteric?

A much lower dose may well have done the trick.

 

[Tristen]

FWIW I was prescribed Propaolol (80mg then 40mg) for temperature regulation problems/severe heat intolerance as the Dr must have presumed (probably correctly) a sympathetic NS problem.

It certainly cured the overheating problem. I was absolutely freezing and although this was many years ago I remember feeling like death and had to quit them after a few days. No way I could have functioned enough to work and I don't think I even tried the lower dose.

Not that this invalidates the theory. If the parasympathetic side is downregulated and you then suppress the sympathetic what does it leave - the enteric?

A much lower dose may well have done the trick.

Used to have that temp reg problem too. Had to give up my love of trips to natural hot springs for that reason. Even a hot shower would put me down. Not sure if I still have that problem, but not real eager to find out. Not sure if propanolol would have affected that or not. I didn't experiment with the doses much on that one cause I just didn't have much faith in an anti-hypertensive even touching a monster like me/cfs.

 

[maryb]

Marco
thats just what happened to me on the propanolol - I've never felt worse on any medication, I came off them pretty quickly despite what the GP said about it being dangerous - remember counting hundreds of tiny beads weaning myself off them in a week.

 

[Hip]

In terms of the beneficial effects of opioids on ME/CFS, the following thread might be of interest:

From Bedbound to Fit and Able in 14 Days: Effects of the Amazonian Medicine Kambo on a CFS Patient

 

[Hip]

Seems that opioids can have a long-term action in the body: this study indicates that morphine alters NMDA receptor-mediated neurotransmission in the nucleus accumbens, and these effects persist one week after morphine withdrawal.

Note that the half life of morphine is 2 hours, so this drug will have pretty much left your system after 12 hours or so. Yet the effects of morphine last for a week.

And this study found that morphine works as a treatment for obsessive-compulsive disorder, and again, a single dose of morphine was found to have beneficial effects lasting for at least a week.


So one might expect a similar thing when opioid pain relief medications are used as a ME/CFS treatment: perhaps a single dose of opioids may have beneficial effects that persist for many days, even after these drugs have left the body.

 

[Xandoff]

Same it true for me. Has been for 18 years. I get grumpy whenever I read how "narcotics" (opioids) "don't work" in fibromyalgia or ME/CFS. Nothing else has helped me anywhere near as much.

I can attest that opioids make me feel and think almost as good if I was not sick!

 

[Hip]

I can attest that opioids make me feel and think almost as good if I was not sick!

Do you take opioids now and then specifically to improve your ME/CFS symptoms, Xandoff, or do you just take them for pain relief?

Also, when your ME/CFS symptoms are improved by opioids, does this improvement remain only while the opioids are in your system, or do the benefits of opioids seem to linger longer, even after they have left your body? The opioids oxycodone or hydrocodone will for the most part have left you body 12 hours after taking them, since the half life of these two drugs is around 4 hours.

 

[Xandoff]

Do you take opioids now and then specifically to improve your ME/CFS symptoms, Xandoff, or do you just take them for pain relief?

Also, when your ME/CFS symptoms are improved by opioids, does this improvement remain only while the opioids are in your system, or do the benefits of opioids seem to linger longer, even after they have left your body? The opioids oxycodone or hydrocodone will for the most part have left you body 12 hours after taking them, since the half life of these two drugs is around 4 hours.

Yes the improvement last only when on opioids. I was off opioids for the last 17 months and lost too much weight and became severely de-conditioned. I was on oxycodone. Pain management was nearly impossible. I didn't understand the pain and the fact that I would never be pain free. I transcribed the video on Dr. Kenny De Meirleir called ME and Pain (can be seen on you tube) that came out this year in 2013. This video really opened my eyes about my central pain and why pain management is so difficult.

Here is the transcription:
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ME & PAIN (find on youtube)

Prof. Dr. Kenny De Meirleir

Produced March 2013,

The Pains change during the disorder.

Most patients, who recall how they felt before the run-up of this disease, remember they were free of pain in the beginning. The fatigue and the lack of recovery often occur before the start of Pain. The various possible causes are of a central nature. That is, cytokines, which are particles produced by our own white blood cells, can affect certain receptors and induce pain.

This concerns mainly the so-called inflammatory cytokines, with one specific pointer to interleukin 1. They also occur in other disorders and animal models and are accompanied by pain of central origin.

Bacterial neurotoxins also play a part. When the immune system has been seriously disrupted, all kinds of bacteria can no longer be eliminated. Or intestinal bacteria pop up, because the intestines are less capable of holding them back. Bacterial toxins can also cause central pain. Moreover there are a lot of other substances such as nitrogen oxide, which play a role. We know for example that if we reduce the effects of nitrogen oxide, pain is reduced.

The same applies to a number of antibiotics that inhibit certain bacteria and also reduce pain. There is also a problem with opiate receptors. Endogenous opiates play a part in the brain, and with those receptors there seems to be a problem too. An English group is engaged in manipulating those opiate receptors, as to also reduce pain in patients.

Perhaps the most important cause of pain is metabolic pain, pain from the metabolism. It is cause by a poor delivery of oxygen to the organs and also by mitochondrial dysfunction. The mitochondria are responsible for the release of ATP to let all our organs function.

This is the most difficult pain to combat and the biggest problem, because there is no medicine for it. We can try to ensure the peripheral parts of the body getting more oxygen. We can do that artificially. But the release of several substances causing the large vessels to expand automatically causes a contraction of the small blood vessels which is the cause of cold feeling in the peripheral organs like fingers and feet, because the blood vessels themselves contract.

This is a result of an altered sympathetic nervous system that is more active as compensation, but still can’t prevent H2S, NO and other vasoactive substances….to cause the expansion of large blood vessels. To such an extent that the small blood vessels are contracting. I think many organs suffer from a chronic oxygen shortage. And this will also, in the peripheral nerves…which contain blood vessels as well-cause a shortage of oxygen. So we have a mixture of neuropathic and metabolic pain.

In my experience metabolic pain is the biggest problem because you can’t cure it, simply because there’s an imbalance in the blood circulation. Then there are all kinds of other factors. With this condition the red blood cells aren’t functioning normally, and there is also a problem with oxygen supply. I could mention an entire list of different mechanisms which all come down the to the same. We call them ischemic pains, due to a shortage of oxygen to form energy.

The result is of course, the production of much lactic acid. We and others have found that while resting, the concentration of lactic acid in the blood to be up to three times the normal value. In normal blood 0.6 to 1 mmol lactic acid per liter is found. In a ME patient it is not uncommon to find 2 to 2.5 mmol per liter. And that a normal value in the blood of someone running the marathon of Rotterdam at considerable speed.

In ME patients this is a normal value when at rest. That lactic acid comes from the tissues, which must convert all their glucose in lactic acid as a final product with much less energy supply. On the other hand there are also intestinal bacteria, as we have shown in a publication which produce both left as right turning lactic acid.

Often the disintegration of D-lactate is more difficult with ME patients because they lack the enzymes to do so. That is animal lactic acid. So there are a lot of factors which cause the aerobic metabolism to shift to a more anaerobic metabolism and to me this is also an important element in the occurring pain.

That’s why pain management must be performed with an overall vision on pain. Often one can’t cure this with one particular medicine, but with a more integrated approach one can usually cause a serious relief from the pains.
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Let me know if anyone can relate to this!

 

[PNR2008]

Without Vicodin I wouldn't be alive today. Any drug I take is not increased for years so I'm not worried about overuse. What I am worried about is the governments crackdown on very ill users. Pain itself can turn into it's own illness and pain allowed to reach high levels needs more meds to control. This has been know for years. If ATF and DEA is so worried about people like me then ok I'll get the RX from a speciality dr like rhuemy, orthopeadic, or nueros but don't send me to a pain specialist . They want to get you off drugs with methods that don't work for us, like CBT and GET. Well after I walk or ride my bike with a GSD attached ( which is by the way easier with my OI because I'm sitting down) I stiil need pain meds. Take that you saddists.

 

[Wayne]

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

Hi Tristen, Hi Everybody,

Very interesting thread, thanks to all who contributed. Most of my very limited experience with opioids is with Tylenol III, which has a bit of codeine in it. I use it sparingly (usually for headaches) because it doesn't take much for me to experience "rebound" headaches. I also use it sparingly because of the temporary paralysis of my entire GI tract it induces.

Tristen, my own very limited experience is often similar to yours however. About half the time I use, it leaves me with a similar feeling you describe, that it balances me out. Perhaps it's because of what Marco mentioned, a possible reduction of some of the excitotoxicity in my brain, which leaves me feeling calmed down in a way that should be normal.

I almost always take it (about 1/2 to 3/4 of a tablet) at night before retiring if I feel my chronic headaches are going to be especially disruptive. If it works well, I will sleep much better, and actually enjoy the following day because of a very big reduction in the "edge" I normally feel in my disrupted neurological system. I only take this about once a month or so, because of the problems associated with it, but on those days that it works, it feels like a fleeting feeling of enormous relief.

I plan to go back over this thread, and try to discern if there might be some kind of alternative I could explore to get this kind of relief on an ongoing basis without major side effects. It would certainly increase my quality of life significantly if I could.
....................................................................

I saw a "pain specialist" once who prescribed Ketamine, which didn't work well for me at all. She wouldn't work with me to try to find a suitable alternative, seeming to fear getting on the radar of the State medical board. How sad so many doctors have to live in fear of some of these obnoxious boards who seem to have little regard for patients who legitimately need these kinds of medications.

Wayne

 

[Marco]

Hi Wayne

Gotta run but thanks for name-checking me. Progesterone is something that's come up for me lately.

Please remind me to get back on this.

 

[Wayne]

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

Hey Marco, thanks for the shout out. You might be interested in this thread I started a while back, at least the first couple of posts which mention glial cells,:

How The Brain Cleans Itself

Wayne

 

[Hip]

I plan to go back over this thread, and try to discern if there might be some kind of alternative I could explore to get this kind of relief on an ongoing basis without major side effects. It would certainly increase my quality of life significantly if I could.

You might look at the possibility of taking NMDA receptor blockers with you opioid medications, as this seems to help prevent opioid tolerance build up, and so may potentiate the benefits, and reduce addiction potential. Ref: 1.

NMDA receptor blockers include: transdermal magnesium cream, taurine, huperzine A, dextromethorphan.