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

[Marco]

Yup, my mother was a binger, died from total organ failure caused by chronic alcoholism. She went through phases of being sober, then binging again - that was what killed her. The stress on her body of swapping from one state to the other, repeatedly.
My Dad was a steady drinker, I managed to get him sober after she died and he was quite happy to survive on just 4 cans of beer a day. There are 2 types of alcoholic.

Thankfully, although I'm a binger, I didn't bother with the sober binges and didn't do myself any permanent damage.
I am horribly familiar with the neurological kindling though. The tremors were vile until I could get some booze to stay down, sometimes I had epileptic fits and found myself coming to in hospital. I (thankfully) didn't get hallucinations.
(I did get sober, shortly after I started having fits. They were truly scary.)

How about the ME/CFS - any links between onset and drinking?

 

[peggy-sue]

None whatsoever, Marco. I stopped being a practising alcoholic in '91, I didn't get ill until '03.
(I'm not a "recovering" alcoholic. I can't stand that silly term. I'm an alcoholic. I always will be. I just choose not to practise it any more. )

 

[Valentijn]

None whatsoever, Marco. I stopped being a practising alcoholic in '91, I didn't get ill until '03.
(I'm not a "recovering" alcoholic. I can't stand that silly term. I'm an alcoholic. I always will be. I just choose not to practise it any more. )

I've got a lot of relatives who are non-practicing alcoholics, and I understand what you're saying. It's not a disease that can be cured, or go away on its own. It's a chronic illness that will never go away, and they have to do the equivalent of taking a pill every day (not drinking) and often making major lifestyle changes to stay alive (avoiding alcoholic friends and bars, going to AA meetings, etc).

 

[peggy-sue]

eeeek, AA would send me right back to the bottle. (They are rather keen on substituting religion for the booze.)
However, you're absolutely right, Valentijn!

I feel that saying you "just don't practise it any more" is taking active responsibility for it - and pride in it.
You have to completely reorganise your life, take up new interests that do not involve pubs or even ones that involve "going for a wee drinkie" afterwards, find and make new, non-drinking friends.
And you have to keep active to distract yourself.

I took up further education - starting with the OU.

 

[xchocoholic]

Could this be connected to inflammation ? I find that i can move
easier on hydrocodone plus ibuprofen. I'm allergic to most things on
this planet and allergy meds help but they're not controlling the inflammation.
Ibuprofen or Aleve help too but not as much as combining these with hydrocodone.
I'm not supposed to take nsaids due to celiac disease but I'm going to experiment
with taking these nonstop daily again. I want to eliminate the inflammation and
see if it helps.


I was just thinking that once our bodies reach a certain point of inflammation certain brain
chemicals come into play. And that's why narcotics help. I don't have a good internet
connection now so i can't look this up but whatever chemicals come into play
are known.

Btw. I never realized I had angioedema, chronic internal inflammation and swelling until i started researching mast
cells. Just another cfs symptom that was missed.

tx for starting this thread. I need learn what meds can help along with diet and supplements because
that wasn't enough for me. tc .. x

 

[Dufresne]

To my dismay some of the symptoms I'd thought would be helped by the Baclofen, PEM and post-reading malaise, were untouched or even exacerbated at higher doses of the drug. I'd theorized that these symptoms would improve based on my response to GBL, also a GABA-B agonist. So the reasoning was these symptoms could be ameliorated by addressing the underlying excitotoxicity.

Baclofen, as expected, combats excitotoxicity. As a result I've more mental energy and a clearer head. I feel calmer, more motivated and am getting a lot done. My mood and libido are also elevated. The severity of my fasciculations has been cut in half. However what I find most interesting is the effect it’s had on my sleep schedule. I've actually fallen effortlessly into a normal circadian rhythm. I'm hardly able to keep my eyes open after eleven o'clock, and then I wake up between 6 and 7 the next morning.

So the symptoms I was hoping would be treated with the Baclofen are actually responding better to opiates. The major difference between GBL and Baclofen, besides the half-life, is the effect on endorphins. Baclofen is very specific to the GABA-B receptor, while GBL has a high to it. It turns out if I pop an Oxy or a Statex I'm able to read or engage in physical activity that would have been beyond my capabilities without developing PEM. To the point I can actually workout a little. I've no idea how far I can push this as, like everyone here, I've been conditioned by horrible crashes in the past. Though this is something I'm going to have to test further.

I find I'm even better the next two days after my opiate dose. This is similar to what Tristen describes. I believe the benefit is especially pronounced in combination with the Baclofen. At times it’s like my brain just lights up and I don't feel sick anymore! It's very encouraging. I'm thinking I'll start with LDN.

 

[Dufresne]

When I mentioned my experiences with Baclofen to a friend, she told me that she knew three other people who claim Baclofen played a big part in their becoming functional again. When I mentioned the response I had to opioids she replied with, “so you’re an opioid responder.” She then went on to inform me that Dr Teitelbaum writes about certain people doing very well on opiates. I tried to find confirmation of this online but all I turned up was something about him using methadone with people suffering fibromyalgia pain. I don’t know if that’s all there is. I’d love to know if there’s a solid precedent for this phenomenon.

 

[Dufresne]

I’ve rewritten my post from last night (two above this one) because it was a true Dufresne special: convoluted and poorly structured. I always get that way when I’m trying to convey too much information. It seems no amount of drugs can turn me into a decent writer. However, hopefully it’s a tad simpler now.

Here’s to bumping your own posts.

 

[Tristen]

I thought I'd report back on some of my observations taking Baclofen, as well as opioids.

To my dismay some of the symptoms I'd thought would be helped by the Baclofen, PEM and post-reading malaise, were untouched or even exacerbated at high doses of the drug. I'd theorized that these symptoms would improve based on my response to GBL, also a GABA-B agonist. So the reasoning was these symptoms could be ameliorated by addressing the underlying excitotoxicity.

I slowly worked my Baclofen dose up to 320 mg/day and this was certainly too much. I experienced erratic moods, falling asleep through the day and waking up at night. There was also a worsening of my post-reading malaise. So I dropped the dose down to 240 mg and am comfortable without any of these nasty effects. In fact I'm enjoying improvements.

The drug, as expected, combats excitotoxicity. As a result I've more mental energy and a clearer head. I feel calmer, more motivated and am getting a lot done. My mood and libido are also elevated. The severity of my fasciculations has been cut in half. However what I find most interesting is the effect it’s had on my sleep schedule. I've actually fallen effortlessly into a normal circadian rhythm. I'm hardly able to keep my eyes open after eleven o'clock, and then I wake up between 6 and 7 the next morning.

So the symptoms I was hoping would be treated with the Baclofen are actually responding better to opiates. The major difference between GBL and Baclofen, besides the half-life, is the effect on endorphins. Baclofen is very specific to the GABA-B receptor, while GBL has a high to it. It turns out if I pop an Oxy or a Statex I'm able to read or engage in physical activity that would have been beyond my capabilities without developing PEM. To the point I can actually workout a little. I've no idea how far I can push this as, like everyone here, I've been conditioned by horrible crashes in the past. Though this is something I'm going to have to test further.

I find I'm even better the next two days after my opiate dose. This is similar to what Tristen describes. I believe the benefit is especially pronounced in combination with the Baclofen. At times it’s like my brain just lights up and I don't feel sick anymore! It's very encouraging. I'm thinking I'll start with LDN. If that doesn't work I'll try full dose Naltrexone. If that doesn't get me there I'll try a modest dose of Suboxone, etc, until I find something that works.

I do get relief the day taking an opiate......but feel even better the day after. Tremendously better. Suboxone works great.

I believe that Naltrexone and Naloxone (found in Suboxone) are not the same drug. Both are some kind of opiate antagonist but straight LDN makes me very sick, while Suboxone even with it's higher dose opiate antagonist, brings significant relief. If an opiate antagonist like LDN exacerbates my me/cfs symptoms, it doesn't seem I would be able to take suboxone regardless of it having an opiate (buproprion) included. I need to research this.

If Dr Teitlelbaum has some experience with this issue, we should pursue that more. I have in the past had him respond to emails....need to see if that's still possible. Maybe his FB page.

 

[Hip]

I believe that Naltrexone and Naloxone (found in Suboxone) are not the same drug. Both are some kind of opiate antagonist but straight LDN makes me very sick, while Suboxone even with it's higher dose opiate antagonist, brings significant relief. If an opiate antagonist like LDN exacerbates my me/cfs symptoms, it doesn't seem I would be able to take suboxone regardless of it having an opiate (buproprion) included. I need to research this.

I think you meant to say buprenorphine (an opioid partial agonist) not buproprion.

I wonder if the benefits you feel from Suboxone (a combination of buprenorphine + naloxone) do actually come from the buprenorphine ingredient. Someone on this forum said that buprenorphine has a higher affinity for the mu-opioid receptors than naloxone has; if true, then buprenorphine would tend to override the effects of naloxone, making Suboxone more of an opioid receptor agonist rather than an opioid receptor antagonist.

 

[Tristen]

Hey Hip, Yea I was being lazy on the spelling for buprenorphrine.

Right, Suboxone is a combination of the 2 drugs Buprenorphine (opioid agonist) and Naloxone (opioid antagtonist) at something like a 3:1 ratio, with the former being at the higher dose. You may be right that it's due to it's higher dose, and maybe affinity, that it may be dominant in it's effects. I'm just surprised that looking at how severely I react LDN, I can take the suboxone at all.

 

[Hip]

Tristen
It would be interesting to see how you react to pure naloxone. I read that naloxone and naltrexone are very similar, but naloxone has a shorter half life compared to naltrexone, so naloxone leaves your body quicker.

Perhaps this shorter half life may be an advantage for low-dose protocols: the way low-dose naltrexone (LDN) works is by a rebound effect: LDN blocks your opioid receptors for a short period and so reduces opioid receptor activation. The body then immediately compensates, and increases its production of endogenous opioids (endorphins) and also increases the number and sensitivity of its opioid receptors.

Then when the effect of low-dose naltrexone wears off after a few hours, you are left with higher levels of endorphins and more sensitive opioid receptors, and this lasts for around 24 hours, so the net effect of LDN is to increase opioid receptor activation.

However, the problem with LDN is you still get these few hours just after you take it when it is blocking the opioid receptors, and so reducing opioid receptor activation. I wonder therefore if low-dose naloxone might be better for people with low-dose naltrexone sensitivity, as naloxone leaves to body faster.

 

[Tristen]

Tristen
It would be interesting to see how you react to pure naloxone. I read that naloxone and naltrexone are very similar, but naloxone has a shorter half life compared to naltrexone, so naloxone leaves your body quicker.

Perhaps this shorter half life may be an advantage for low-dose protocols: the way low-dose naltrexone (LDN) works is by a rebound effect: LDN blocks your opioid receptors for a short period and so reduces opioid receptor activation. The body then immediately compensates, and increases its production of endogenous opioids (endorphins) and also increases the number and sensitivity of its opioid receptors.

Then when the effect of low-dose naltrexone wears off after a few hours, you are left with higher levels of endorphins and more sensitive opioid receptors, and this lasts for around 24 hours, so the net effect of LDN is to increase opioid receptor activation.

However, the problem with LDN is you still get these few hours just after you take it when it is blocking the opioid receptors, and so reducing opioid receptor activation. I wonder therefore if low-dose naloxone might be better for people with low-dose naltrexone sensitivity, as naloxone leaves to body faster.

I'm very curious about that too. Not sure where one would get straight Naloxone though. It would be worth a try.

If LDN causes the opioid recpetors to become more sensitive and ultimately to encourage ones own system to produce more endorphons, it sure seems I would benefit from LDN. It's been years since I tried the LDN, and I'm thinking maybe I should give it another go......but I am terrified of the stuff.

I need to first see if getting straight naloxone is possible. The trick then would be getting anyone to prescribe it.

 

[knackers323]

A small amount of suboxone also made me feel much better but when I tried ldn for about a month I felt worse. Does it take longer to take effect?

Anyone know a reliable online source for baclofen?

 

[heapsreal]

te="knackers323, post: 403593, member: 207"]A small amount of suboxone also made me feel much better but when I tried ldn for about a month I felt worse. Does it take longer to take effect?

Anyone know a reliable online source for baclofen?[/quote]
Cheaper if u can get it locally with a prescription. Online sources seem alot more expensive. I will keep on the lookout for ya though.

 

[knackers323]

Hi guys has anyone found out what it means for those PWCFS that respond to opioids?

Also anyone found any alternatives to them that work?

I was thinking LDN, ghb, baclofen etc

 

[knackers323]

Anyone know if all opiates have this effect or is it only suboxone?

 

[Tristen]

Anyone know if all opiates have this effect or is it only suboxone?

No, it's not just Suboxone. All that I've been on for pain work on me/cfs symptoms. I think Hydrocodone is best.

LDN makes me very sick.

 

[knackers323]

No, it's not just Suboxone. All that I've been on for pain work on me/cfs symptoms. I think Hydrocodone is best.

LDN makes me very sick.

You have obviously found no alternative?

 

[Tristen]

You have obviously found no alternative?

Not yet, the search continues. I too need an alternative because long term narcotics is not an option for me. There's some talk of Baclofen, but I'm yet to try it. Several post about this earlier in this thread. I'm going to bring this discovery up with both of my me/cfs docs sometime soon. The response to opioids that several of us have had is extremely important for treatment, and research purposes.