Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

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

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

  1. panckage

    panckage Senior Member

    Messages:
    631
    Likes:
    748
    Vancouver, BC
    This is interesting. Regular 50mg keeps me from sleeping but 100mg tramadol ER has given me the best sleep of my life easily.

    In reality the ER dosage is half that of the instant release... I wonder what would happen if you used half or a quarter pill of tramadol ER (well as long as it doesn't defeat the time release mechanism)?

    For me too much tramadol ruins sleep but at the right dosage it's perfect for sleep (other than tolerance/withdrawal issues of course)
     
    SueJohnPat likes this.
  2. VitaminK2

    VitaminK2

    Messages:
    21
    Likes:
    11
    Tramadol helps me sleep because it opens up my sinuses and lessens my rls.
     
  3. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    639
    O-desmethyltramadol is the main active metabolite responsible for Tramadol's opiod activity. It hits all 3 Opiod receptors and IME has given me a huge boost recently.
     
    Tunguska and Wayne like this.
  4. serusaert

    serusaert

    Messages:
    52
    Likes:
    54
    Seattle
    i was wondering - do you recommend tramadol then? or is there a way to get O-desmethyltramadol? it seems to be not in any formulary that i can find online...
     
  5. panckage

    panckage Senior Member

    Messages:
    631
    Likes:
    748
    Vancouver, BC
    Interested to why there is no talk about kratom on this thread. Many people including myself have found it a far better alternative to opiods. Have people here tried it yet?

    For me it's effects are similiar to tramadol. The difference is I can take it 2 out of every 3 days and have no issues with withdrawal/tolerance.
     
    belize44 and SolarMuse like this.
  6. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    639
    Where do you get your Kratom?
     
    belize44 likes this.
  7. serusaert

    serusaert

    Messages:
    52
    Likes:
    54
    Seattle
    i tried kratom once but it was a disaster - i took too much. i would advise anyone trying it for the first time to be very careful with how you source it as strength varies greatly. make sure that you don't get one of the super concentrated ones like i did. i took too much and got very sick. it triggered an episode of PEM. for advice on kratom types and sources i'd suggest the reddit.
     
    panckage likes this.
  8. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    Tried it, toss 'n wash, and it really messed up my stomach, gave me ulcers (so it felt) and lots of GI pain. Of course, I couldn't guarantee that the green leafy mass I was ingesting actually was kratom, so who knows...



    It is now illegal here in the UK under the legal highs laws
     
    Kenshin, panckage and serusaert like this.
  9. Tunguska

    Tunguska Senior Member

    Messages:
    507
    Likes:
    484
    Yes it kind of worked but the nausea was too severe, and I really gave it a chance. It's part why I had to skip to tianeptine. If I ever have to resort to it again it's only if can get capsules and a COA.
     
    panckage likes this.
  10. panckage

    panckage Senior Member

    Messages:
    631
    Likes:
    748
    Vancouver, BC
    From the Internet :p. I've bought from a few sources and have had no issues so far. The last I bought was from Indonesia from vendor called Green Harmony. It's half the price of getting it here locally in Canada. If you are from the US though, the prices are much cheaper
     
  11. pogoman

    pogoman Senior Member

    Messages:
    188
    Likes:
    173
    I started kratom last week, stopped meloxicam back in January due to edema and the breakthru pain is happening daily now.
    Kratom is working so will see if tolerance issues come up, with opiates never had an issue as I only took them when the pain was really bad.

    I'm on prescription norco but trying to get refills between doctor visits is not easy since they changed the Fed opiate rules in 2015.
     
    panckage likes this.
  12. serusaert

    serusaert

    Messages:
    52
    Likes:
    54
    Seattle
    i am guessing that there is a general tightening up of RX procedures for all meds with addiction potential (here in US). my gp recently challenged my need for the .5 mg lorazepam RX that i have been getting (and only filled once). when i pointed out how effective it is and how very aware i am about addiction potential, she relented and told me that the RX for lorazepam would be reduced from 28 to 14 pills. i'm a bit afraid to request a re-fill prematurely - i'm guessing that this is monthly? makes me want to try to get it from india - tho i am very wary of that. btw, i don't take the lorazepam more than once in three days if i can avoid it.

    @pogoman - i am actually taking norco right now as needed for pain from turbinate reduction surgery i had three days ago. while it helps greatly with the sinus pain, it really messes with my sleep and aggravates PEM. i find that lorazepam helps with PEM greatly. i would take it more often if i was not afraid of addiction and decreased effectiveness. i am thinking that i should try to get some clonazepam so that i can alternate and hopefully avoid addiction issues further.
     
  13. pogoman

    pogoman Senior Member

    Messages:
    188
    Likes:
    173
    @serusaert
    Well after using kratom I can say it is working for my pain, I've probably taken only two norcos the past week and half.
    Like the prescription stuff, I only use it if aceteminophen doesnt contain the pain.
    Unfortunately thats been a daily occurence for the past three months, basically after the IVIG was stopped the pain slowly got worse.

    Some people have side effects with kratom, there is a small minority it does not work for at all.
    With norco I always take half pills to start and I never had withdrawal issues quitting for months at a time when supplements or treatment improved things.
    So I guess I am lucky because everything else has had bad side effects for me.
     
  14. Palmer1997

    Palmer1997

    Messages:
    2
    Likes:
    7
    Hello everyone. Had to make an an account to help out here. I have to blurt it out, ibudilast, and galamantine combo. Its simple and works, I also use alcar supplement if I need alot of energy.

    I take this all on top of buprenorphine 4mg for chronic pain. Ibudilast works on the TLR4 receptor in the brain to reduce neurological and peripheral inflammation by inhibiting pro-inflammatory glial cells. Galamantine stimulates anti-inflammatory glial cells and alcar helps with improved mitochondria function.

    I can, and have stopped my buprenorphine at any time with minimal to no withdraw due to the ibudilast as it antagonizes thereby inhibiting the tlr4 receptor. This receptor is activated when you are sick, or withdrawling. Causing fatigue, inflammation, and pain plus a whole host of negative effects.
    I saw it mentioned in this long thread and was heartbroken to see it was never mentioned again. Irc.bio has a good source on ibudilast and the rest can be easily found on Amazon.

    Another interesting fact about the TLR4 receptor is that it can be altered in the womb And early childhood from trauma or extreme/chronic stress. I too have gone many routes, LDN, ULDN, plethora of opiates, kratom ECT.

    Please at least five the one ibudilast a try, if I had to choose between suboxone and ibudilast I would take it just for the mental clarity and pain relief and depression relief than the suboxone alone as it only helps so.much. ibudilast also reduces opiate tolerance and virtually no withdraws, galamantine just synergies with this effect.

    Much love, palmer.
     
  15. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    Hi @Palmer1997 many thanks for joining and making your post.

    Do you know / have any links or further info, re what would be the effects of someone with a high opiate tolerance taking Ibudilast? I'm interested to know if it would plunge them straight in to withdrawal?

    Can it be taken concurrently alongside opiates as part of a taper perhaps? (No subs or anything else, JUST opiate + Ibudilast).

    Thanks for shedding any further light, I'm always looking for that special *something* that can provide pain relief and PEM reduction without the negative side effect profile of actual opiates themselves.
     
    Kenshin likes this.
  16. Hip

    Hip Senior Member

    Messages:
    9,483
    Likes:
    15,014
    Thanks for joining and posting your ibudilast experiences, @Palmer1997.

    A few people on this forum appear to have tried ibudilast: see:

    This post by @ebethc (no benefits observed)
    This post by @Wishful (no benefits observed)
    This post by @serusaert (60% reduction in neuropathic pain observed at 3 x 10 mg daily)

    Looks like the cost of ibudilast on irc.bio is $65 for 1,000 mg. So at a dosage of 30 mg daily, that works out to around $2 a day.
     
    ebethc, Indigophoton, Wayne and 2 others like this.
  17. Kenshin

    Kenshin

    Messages:
    72
    Likes:
    159
    This is a great thread, just wanted to chime in and say opiates help with my M.E symptoms. Including: Clearing brain fog, stabilising body temperature, and alleviating shortness of breath.

    I'm thinking of trying tramadol as many of you seem to be doing better with it..

    Also I have the same issues with kratom Skippa mentions below, rough as hell on the stomach.
    Kratom can be very good for pain and deppression, but in most cases, opiates are superior.

     
    Wayne, Skippa and hellytheelephant like this.
  18. Palmer1997

    Palmer1997

    Messages:
    2
    Likes:
    7
    http://www.bluelight.org/vb/threads...eat-Opiate-analgsic-tolerance-and-withdrawals

    More importantly http://www.lostfalco.com/ibudilast-for-cognitive-enhancement/

    So far in my experience, in co current use and tapering with opiates I have to say it has enhanced the affects of my buprenorphine, and has allowed me to take absinence with almost little to no withdraw! I'm 100% certain it can be used with any opiate in conjunction with tapering and cessation, but I'm currently using it as a booster, and if need be I can go without my medication I will just be a bit nore stiff.
     
    Skippa likes this.
  19. serusaert

    serusaert

    Messages:
    52
    Likes:
    54
    Seattle
    i also find tramadol helps and i also find it helps with sleep. but here's the problem: tramadol and LDN don't mix well due to their very natures as opioid and opiate antagonist. due to this, i take a tramadol (50mg) only once in a while - and generally skip the LDN on those nights.

    i stopped ibudilast due to the cost of purchasing it from japan but i do feel that it is useful for me.
     
  20. MargUK

    MargUK

    Messages:
    78
    Likes:
    112
    Aberdeen, Scotland
    (Apologies for long post but felt you needed all the info).

    I'm very interested in this thread and wonder if anyone can help me with extremely distressing symptoms I'm experiencing on a daily basis. I'm now starting to wonder if they're withdrawal symptoms.

    I was put on 0.8 mgs of Subutex 2 years ago for a mild opoid dependence (40 mgs of codeine a day) having unsuccessfully tried to taper off myself. In the UK they only put you on it for a month then taper off the next month.

    All was going according to plan until I got 2 weeks into the Sub taper. I woke one morning unable to get out of bed, feeling really ill. This continued with VERY frightening suicidal thoughts and it was 3 days before I realised the symptoms were disappearing about an hour after I took the Subutex.

    I was terrified and pretty sure this meant addiction had already built up and reducing the dose by half was obviously too much. My daughter was just about to give birth to her second baby (I was the birthing partner) and I had just started a new job so I went back up to the original dose, realising I would have to do a long, slow taper.

    Things got worse - my CFS took hold and although I improved after a year, I had a relapse in January this year and haven't really recovered from that.

    Like many of you I discovered Subutex helped my symptoms so was reluctant to come off it especially as I got worse. 2 years on I've only managed to reduce the dose by half and my 0.4 mgs dose is the only thing which gives me hope now.

    About 2 months ago I really started to go downhill, becoming gripped with severe anxiety to the extent I became housebound and now am virtually bedbound. This is just not sustainable. I live on my own and have 3 cats to look after, one of which is quite ill and not expected to last till Christmas.

    My symptoms have got worse recently and I'm now wondering if I'm going into withdrawal every morning. I only get around 2-4 hours sleep a night before I wake sweating, with constant RLS, severe anxiety, pounding and racing heart, feeling terrified, feeling sick, diaorrhea, and unable to concentrate on anything. I find this unbearable and am permanently exhausted. I also seem to be devoid of emotion. It feels like my body is being depleted by the hour.

    I can barely last until 8.30 before I take my Subutex dose (half an hour after I force a few spoons of yoghurt down me) and a couple of hours after that, it takes the edge off everything and gives me a short period of relief before it all starts up again.

    I'm finding this a living nightmare and am terrified it IS withdrawal in which case I'll never be able to stand coming off the drug if it's like this while I'm still ON it!

    Would be really grateful for any opinions and advice from anyone who's been through anything similar and can recognise this.

    @Skippa @Tunguska
     

See more popular forum discussions.

Share This Page