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

Discussion in 'Neurological/Neuro-sensory' started by Tristen, Apr 11, 2013.

  1. Tristen

    Tristen Senior Member

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    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.
  2. Hip

    Hip Senior Member

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    The supplement germanium sesquioxide may be a good one to try, for those who feel better when taking opioid pain medications, but do not want to risk addiction or developing tolerance to opioids.

    Germanium sesquioxide is known to boost levels of the body's own natural opioid drug: endorphin. 1

    I experienced some benefits from taking germanium sesquioxide at 100 mg daily. Germanium is one of the supplements known to help ME/CFS.

    I'd often take germanium sesquioxide transdermally (I would rub the power from the capsule into my skin), as germanium has low oral bioavailability (<10%), and the transdermal route seems to increase its effectiveness, I found.

    I find germanium gives me more enthusiasm, and a bit more energy. Nothing spectacular, but useful anyway.

    The germanium I bought is the Nutricology Organic Germanium.

    Note that D-phenylalanine and Garum Armoricum also boost endorphins. Acupuncture boosts endorphins too.


    Info on Endorphins and on Germanium:

    Endorphin levels are low in ME/CFS. 1, 2

    Endorphins activate natural killer (NK) cells 1 2, so one might speculate that the low endorphin levels found in ME/CFS might be causing the low NK cell function found in ME/CFS patients. 1

    Germanium sesquioxide induces interferon-gamma, enhances natural killer cell activity, and inhibits tumor and metastatic growth — effects often detectable after a single oral dose. 1
    Tristen likes this.
  3. cph13

    cph13 Senior Member

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    !!!!!!!!
    @Hip I just had to bold your last comment. I just happened to find this post.
    @Tristen, heapsreal et. al. I'm reviving this from page one. I can't wait to read all 8 pages sometime later....this site and our condition has consumed me. My house, my car, my person just leaves alot to be desired because of reading and trying methylation and being tired or in pain;screwed up neurotransmitters, EBV, HHV6 titers high....how do you keep things going.
    I don't...so everything suffers.
    I look like poop, the house too not to mention what I feel like. Enuf....u know the drill
    So, before I get side tracked let me tell you of my experiences (over the years) I'm ecstatic to find "I am not alone". I'm sure the following 7 pages will be enlightening.
    Sorry this is a bit long.
    I thought I was loosing it.... and a druggie, taking Ultram/trazadone when I needed to function (like cleaning the house, food n mall shopping ;-} or outing for visiting family; even work sometimes. *head lowered in shame*....... ) Add to ultram some coffee and the young uns' couldn't keep up with me. I was good to go for 8 hrs. maybe 12. Brain function "phenominal"; personality, "the old me was back" . Dr. said..."it's just because U R not in pain, no worries, IT'S NOT ADDICTIVE"...pffffffff. I even felt it on Chantix...Percoset worked differently. 1st time I took Perc. for my bad knees, I just thought, "gee, I wanna go food shopping" (I hate food shopping??) . Pain yesterday "all over" so I took a perc. and I just got some stuff done but not like the ultram/traz of happy, joyous, focused me. I am at to the point were I won't take it unless absolutely necessary. I felt this is NOT what these meds are for. You wanna clean your house so you take 100mg of ultram/tramadol....U wanna Xmas shop; ditto...visit your sister; ditto. On gloomy days when I must work; um did I say "ditto". U get the picture but I thought "NOT". I read that Ultam/traz. can be addictive
    OH NO.....bad enough, I have the Klonapin demon on my back for sleep. I added 5-htp, p5p, melatonin to it for sleep. (I have reached tolerance with the klonapin n I WILL NOT up it). I "mix-up" tramdol, benydryl or some other diphenhydramine and get mostly between 4-6 hrs. Methylation helped back in April. I was able to drop all of "the mix-up". Now I can't; the methylation protocol stopped working again. Anyway,
    Just to test this yesterday, I took my usual 100mg with some coffee and YUP. Worked like a charm however, I didn't sleep a wink @heapsreal
    I read somewhere that 5-htp should not be taken longterm. What are your findings on this. I just bot some tyrosine. I will try it tomorrow morning and take the 5htp tonite.
    I will finish reading all of "youse guys" (jersey language) 8 pages. Now, I will look thru my bag of tricks for other stuff that is left over that I can mix up like I do my evening meds. After all...isn't about "LIVING EACH DAY TO ITS' FULLEST" Thank you for all your opinions and findings. Love you all xoC
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @cph13 i use 5htp with tramadol without any issue, but i find if i take tramadol late at night i cant sleep. So i only take it in the morning, im on 200mg sr tramadol and this gives me pain relieve for 12hrs. As for 5htp i have been taking 100mg twice a day for the last few weeks without any issues. I think its cautioned as there is a risk of serotonin syndrome but i think if u start with low doses and slowly build up to a dose u find helpful then u can avoid issues. may only need 50mg 5htp?? Always good to discuss this with your doc although the average doc doesnt have a clue, hopefully u have an intergrative doctor.
    cph13 and Tristen like this.
  5. Tristen

    Tristen Senior Member

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    I wish the Tramadol would work as well for me. I get maybe like 25% of what I get with opioids, which would be better than nothing for sure.....and it would solve the concerns over addiction with the narcotics.....but I get undesirable effects from it as well (maybe due to it's actions on other neurotransmitters), such as being jittery, and a bad headache. I can take it intermittently and do ok, and so I do have some on hand.......but regular use is out.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont really use tramadol for cfs but for severe arthritic back, cant stand up straight until it kicks in. I know when i first started taking it, it gave an energy boost but not so much now. It also works ok for neuralgia/myalgia pain but does nothing for headaches for me. codeine based meds work for the headaches etc but do little for back pain, its strange but thats what i find.

    I think i also tolerate meds better then most and find lyrica and neurontin helpful too for nerve pain, generalised all over neuropathy. Its all cyclic and good to have a few things on hand if needed. Pain is pretty good at destroying sleep.

    I havent had alot of luck with anti inflammatories, but also i think they have alot more serious side effects long term then narcotic type meds such as bleeding disorders, liver and kidney issues, especially if its something used daily, i think thats one of the benefits narcotic pain meds have is they arent as hard on the liver and kidneys as over the counter pain meds, but they have issues else where.
    Tristen likes this.
  7. acrosstheveil

    acrosstheveil Senior Member

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    this really sucks. I have spent thousands on all sorts of supplements over the years and illegal opiates are the only thing that helps!??!? ugh!!
  8. Graeme

    Graeme almost there...

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    Hey @Tristen. I'm finding the talk on Ibudilast interesting. This is a drug that is being studied for a possible role in both ME/CFS and addiction, specifically that of meth and opioids. Might this not relate to what we're discussing here? Since Ibudilast is a microglia inhibitor, and if it does indeed have an application in addiction of opioids, doesn't that suggest that opioid withdrawal causes increased activation of microglia? And if this is the case might opioids inhibit microglia activation? Could this be what we're experiencing?

    I'm absolutely certain my PEM pertains to neuroimmunity and that GBL, opioids, and alcohol all raise my PEM threshold considerably. I've found a number of interesting sstudies of various drugs and their effect on microglia. I want to try this drug.
  9. Tristen

    Tristen Senior Member

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    Thanks Graeme, I'll look into this drug too.....haven't heard of it. I don't know much about that particular function of the CNS, but I agree with your reasoning here. Something in that chemical pathway in us is being over-activated and it's inhibited with opioids. There does seem to be something in this similar to what we deal with and what one experiences with drug withdraw. I recall me/cfs research in the recent past focused on microglial malfunction......I think infection hiding in that part of the CNS was suspect.

    Still curious as to why LDN makes me so sick, yet I improve on opiates. Get back on the Ibudilast.
  10. xrayspex

    xrayspex Senior Member

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    tristen I took ldn for about 6 months about 6 years ago and i still regret it--I took such a small amount that sometimes it worked the way one hopes it would but initially i went thru an awful phase of pain and anhedonia from it and that came back later--I think it is risky, especially if the theory that opiates are good for cfs for some poorly understood reason is correct--because in us, even in the small dose, naltrexone is blocking the endorophins and its blocking them too long and not allowing the rebound. I think it blocked happiness and it also blocked things like enjoying chocolate....it basically messed with my endorphins ....and I think it made my brain more vulnerable in the long run. I feel bad for people taking large doses of naltrexone, say a heroin addict being pushed to do that by a probation officer or something.... i wonder if some of them get suicidal if it works too strongly and blocks them from feeling good from natural endorphin boosters and not just drugs......
    Tristen and Wayne like this.
  11. Tristen

    Tristen Senior Member

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    LDN never worked at all for me. In fact, nothing makes me more sick, immediately. I learned the idea of going low and slow, just didn't apply to me. I know a few other people who persevered with ldn through the supposed early difficult stage, and they ended up in a prolonged crash.....actually a relapse. I won't ever take it again.

    I have thought of the rebound issue and yea maybe we get relief blocking something causing the symptoms, but at the same time......well, you get it. Getting significant relief with opiates, I thought the possibility of a rebound problem was worth the gamble.......maybe not.

    I know a few people on Saboxone permanently after becoming horribly addicted to pharmaceutical pain meds. They have chronic pain, and they have addiction problems, so this is the drug given to them. I have noticed talk of depression, but it's really hard to tease out whether that was already there, what with their lifestyle.

    Thanks, I appreciate your input on this.
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  12. xrayspex

    xrayspex Senior Member

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  13. Graeme

    Graeme almost there...

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    I've actually read that suboxone has been used to treat refractory depression.
  14. Tristen

    Tristen Senior Member

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    I have tried Suboxone and do get the same me/cfs relief as with Norco, Oxy, etc. I'm told that after a few days a person feels nothing on the drug, no high......that part was appealing to me. It's just too difficult to get it. If by some miracle I was able to get it from a doc, there is no justification for prolonged use.

    Not familiar with Subutex (been off work 10 years now....sheeesh), but I'll check it out. Thanks.

    Hey Graeme, I actually just ran into a guy I know who's been on Suboxone for little over a year, at the full dose. I asked him about increased depression......he said absolutely not. "I feel nothing from it really, but if anything, better".
    Last edited: Apr 8, 2014
  15. Hip

    Hip Senior Member

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    I may have found a possible mechanism by which opioids relieve the brain fog and neurological symptoms of ME/CFS.

    In this thread, @Tristen said that he felt better the day after taking opioids. Use of opioids creates a rapid tolerance, and then as the opioids are discontinued, there is a withdrawal phase. So interestingly, Tristen says he feels better (ie, reduced brain fog and neurological symptoms) in the opioid withdrawal phase. My own experiments with the opioids got the same results: I felt much better in the following days after taking opioids.

    Now this study found that morphine withdrawal increases glutamate uptake, and increases the expression of the glutamate transporter GLT-1 in the hippocampus (it is the glutamate transporter which mops up and removes glutamate from the extracellular spaces in the brain).

    So in the withdrawal phase of morphine, the glutamate transporter is working much harder to pump excess glutamate out of the brain. If this ramped up glutamate removal also appears in the withdrawal phase of other opioid drugs, I think this may explain why ME/CFS patients feel better in the days after taking an opioid drug — because excess glutamate in the brain has been proposed to be the cause of the neurological symptoms of ME/CFS, so removing this glutamate will ameliorate these symptoms.

    For more info on the excess glutamate theory of ME/CFS neurological symptoms, see this article on Dr Paul Cheney's views, Marco's blog about glutamate causing ME/CFS symptoms, and my post on how neuroinflammation-derived glutamate may cause generalized anxiety disorder, and the "wired but tired" symptoms of ME/CFS (the post also lists supplements which reduce this neuroinflammation, thereby reducing glutamate production).
    Last edited: Apr 21, 2014
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  16. Graeme

    Graeme almost there...

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    @Tristen

    I've been able to experiment with LDN the last couple weeks and have seen the same benefit I've enjoyed following a dose of opioids. I'm quite optimistic about incorporating this into my regimen. The next drug I'll be trying is minocycline. As I mentioned earlier in this thread I suspect what's happening with the opioids and LDN is they're quieting hyperactive microglia. So I'm thinking LDN, minocycline and Ibudilast.

    If anyone can put me in touch with a source for Ibudilast I'd be much obliged.
    Wayne likes this.
  17. Tristen

    Tristen Senior Member

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    Thanks Hip, I'll check out those links too. I recall an earlier post by someone saying that Cheney see's hydrocodone as helpful for some of us. If it is about excess glutamate, then most anything causing increased uptake should be helpful. I wonder how far Cheney has gone with this.

    That's really cool Graeme. I crosses my mind often that maybe LDN would help me now. My first attempt was like 15 years ago, and then again maybe 5 years ago...both times made me (lots) more ill. But how I respond to things changes dramatically over time, so maybe...... How much are you taking?
  18. Graeme

    Graeme almost there...

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    @Tristen , I'm taking between 2 and 3 mg/day.

    It clears my head for the following day the same way as an opioid dose would. I'm not sure if this is due to the mechanism Hip cited. I wouldn't have thought withdrawal from taking a mere couple of mgs. of the stuff, but it's worth noting that it feels similar to what I experienced when I first started taking benzos. I'm curious to learn if this approach also raises my PEM threshold as opioids do.
  19. Tristen

    Tristen Senior Member

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    About the same dose for me too. Really strange why opioids work so well and yet LDN makes me more ill. It doesn't make sense and makes me think maybe it would be different now.

    I can push the PEM boundary much farther on opioids. But the best part is how my mind clears so dramatically that all my senses are like I was pre-illness. Everything clears so much, it's obvious that full recovery (or very close to it), is possible. My brain is not permanently damaged, just clouded with...........
    Wayne likes this.
  20. Graeme

    Graeme almost there...

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    I've experienced completely normal mental functioning for hours and even days over the last eight years of my ME/CFS. I don't think for a second this disease is the result of brain damage as Byron Hyde suggests.

    @Tristen, Can you achieve both the clear head and the raised PEM threshold at the same time?

    I suspect these are due to two separate mechanisms. In my experimentation there's the elevated PEM threshold while on them, and the clear head that follows the next day. The latter may indeed be the result of the mechanism @Hip suggests, and the more I think about it the more I believe he's right. But the elevated PEM threshold, if it doesn't carry over to the next day, has to be something else.
    Wayne likes this.

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