A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Improvement in NERVE PAIN!

Discussion in 'Pain and Inflammation' started by Jacque, Sep 9, 2013.

  1. Jacque

    Jacque Senior Member

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    USA - California
    As all of you know me here on this site my mantra has always been PAIN, PAIN, PAIN! Grrr

    I recently made a visit to Dr. Madill in N. California because he is a big time researcher of the brain and very up on Goldsteins findings with the limbic system of the brain being damaged from a hit and run infection, and what follows is the cluster (bleep) of problems we with CFS/ME endure.

    After my first visit he told me he wanted me to do two things to begin with. 1. Get off of Norco (Vicoden) for my pain and 2. Get an accurate up to date sleep study done.

    I told him that I despise havin to take Norco for pain and know of all of the draw backs but just don't know what else to do. My memory has been getting scarey BAD!

    He recommended a drug called Subutex which is an opiate agonist and they use it to help addicts get off of Heroin and Opiates. He said he is getting terrific results from it for pain relief and his patients reporting that their heads are clearing up and their libido returns. (oh that will make my bf smile). He also said it does not have the terrible effect that opiates have in tricking the body into thinking the pain is worse than it is, and needing more and more to get the job done.

    Prior to my Rituxan infusions I was on 4-6 Norco a day and have been on 6-8 or more for the last 6 months.

    So ... I decided to take the Subutex and do my best to get off the opiates for this stinkin pain. The first 3 days were pure hell bc Subutex increases cranial pressure (did not know) and due to the fact that I have Chiari Malformation...it caused 2 days of puking and dizziness, and I slept 40 hrs!!, but the pain level had dropped sooooo much that I just went waaaay down on the dose of Subutex and stuck with it. (This won't happen to any of you unless you have Chiari - and if you do just start LOW)

    I have been completely off of Norco for 6 days now (after taking it for 9 yrs), and other than the Chiari related issue I am in amazement of how well it has gone. In my case when it comes to medical crap if there wasn't bad luck, it seems I'd have no luck at all. ugh

    I am utterly BLOWN AWAY by the amazing pain relief that the Subutex is giving me already and get this... I am only taking 1/4 pill 2 times a day! II just dissolve it under the tongue. I am still experiencing dizziness and lightheadedness but it could be the Chiari or still withdrawing from the Vicoden. Am hoping in time that leaves.

    Subutex or Suboxone are used widely in Europe for neuropathic pain. Many of us suffer terribly with full body small nerve neuropathy but most physicians are not aware of Subutex being used for pain management, and just offer the addictive opiates etc.

    Another exciting find that I read was that Norco/Vicoden lowers DOPAMINE (which I did not know)...and that the Subutex helps to raise it over time.

    Soooo I am very hopeful that I have found a safer and more effective pain management RX for this stubborn nerve pain. For those who have also been stuck in the pain trap and looking for other alternatives Subutex may be worth your while to research.

    Fight on friends!!
     
    JaimeS, Misfit Toy, Hanna and 13 others like this.
  2. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    Hey that's great to hear, and thanks for sharing with everyone.

    I don't know enough about the low dose naltrexone to be able to say but it sounds like the mechanisms may be similar to what you are taking (opiate agonist?) for folks who use LDN for pain management.
     
    oceiv likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Jacque

    This is wonderful news! :thumbsup:

    Keep us posted.

    Sushi
     
    oceiv likes this.
  4. Xandoff

    Xandoff Michael

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    Northern Vermont
    Congratulations Jacque!
    I have been trying to get on subutex myself, please keep us posted on your progress. Very happy for you. I live in chronic pain and nobody knows what it is like. Keep up the positive progress.
     
    oceiv likes this.
  5. SueJohnPat

    SueJohnPat Sue

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    Edgewater Park Nj USa
    Subutrex makes sense I have LDN . Cut way back on opiates. Only on 1 tablet of oxycodone 5mg a day. I am pulsing with very low dose naltrexate to avoid withdrawal . In a sense I am making my own subutrex. Hitting mu receptors while blocking them to encourage endorphin production. I know there are other receptors too but too tired to look it up.

    I think Subutrex could be a good drug for fibromyalgia. If I were them I would be doing studies. Unfortunately now it 's only official use is a maintenance medication for opiate addiction.
     
    oceiv likes this.
  6. humanrising

    humanrising

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    WOW! this is great, very happy for you! Just took a look and this was posted a coulple of years ago. Are you still doing great?


    I am very interested in Dr. Goldsteins work and I live in northern ca....so a possible dr is very exciting to me. I have been in hell for over 10 years and another 5 + years of live with it pain.

    Like most of us I would give anything to get the pain out of my life but I am also not taken with the theory that "pain meds make us worse" . I feel that being in pain causes damage to the brain etc.and this idea of pain meds are always bad gets doc's off the hook of prescribing but this is just my opinion and irritation that dr's are being held hostage about pain meds and the numerous ways they all limit their treatment options. ( opp"s on a soap box.. sorry)

    Do you feel that his view on this is rather set, in other words do you think that he would be open to try Dr G's treatments without getting his patient off the pain meds? I would love to get the pain down by other means and then be weaned off the pain meds as my pain gets better. I tried LDN and I wanted to put a gun to my head. I really can't take more of the "Spanish Inquisition" then I am already living in.

    Dr. G had a lot to offer in his medical chest and in the 3 books Ive read he doesn't state anything about not taking pain medication. I think its great that you were open, able and its helped you.....its a beautiful thing.
    My experience with most of doc's I ve been too or taken my parents to ( its a silly huge number over the years ) is they have a narrow "agenda" of how they are going to treat due to their world view on it. ( CSF is viral treat with anti-viral s) Lyme is rare and if you have it the test is + you need 10 days of doxy and thats it...etc
    Most of us know the drill, so if he was open and takes my insurance I would have some carry me there if i had to .

    so, if you have any thoughts about his MO on this or could speak to it I would really appreciate your thoughts, again very very happy for you!!!
     
    oceiv likes this.
  7. Starfive

    Starfive

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    :)Hi Jacque,
    Been meaning to connect with you and now I am compelled by your great improvement with Subutex. I am in Northern California and appreciate the info about Dr Madill. Such good news to have a cfs literate doctor a decent drive away. I will check in with his office about insurance issues and to see if I can get coverage for the Subutex as I hear it is the expensive side (rumor).

    Like human rising I am curious about how your treatment continued and if you are still suffering less pain. My deep fatique/weakness and cognitive confusion would be easier to endure if the excruciating nerve pain was better managed. I am open to a new medication, non opiate to cut the cycle.
    So please let us know how your life is these days. Thanks in advance.!!
     
    oceiv likes this.
  8. Starfive

    Starfive

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    Would love to hear about the Dr. G treatments you have in mind...
    Thanks
     
    oceiv likes this.
  9. Lacey

    Lacey

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    I use that as well for my pain (in my country it's sold as Buprenorphine). It works really well for the pain, though when I get my migraines they're now hard to detect as the pain isn't exactly there, but all the other symptoms still are (like nausea, hallucinations, aversion to light, and need to sleep etc. It's like this particular pain med make the pain still present, but feel more like an oppression than direct pain, if that makes any sense at all. Like when I get pain in the back of my neck it's still there and read as pain, just less overbearing.
     
    oceiv likes this.
  10. Jacque

    Jacque Senior Member

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    USA - California
    Hi Everyone.. Haven't been here in PR site in a long while..and my apologies for not responding... I think I have been on the Suboxone for almost 2 years now.. Completely OPIATE FREE! I only take 1 to 1 1/2 pills daily... as opposed to the nearly 10 Vicoden! I have not developed any resistance to it... I would love to say I am PAIN FREE... but I am not... I am just saying it really helps to put the fire out on the head to toe nerve pain and make it somewhat tolerable...and the SLEEP I get since going on this medication is nothing short of AMAZING... I wish I had found this drug long long ago... I get in a full nights sleep now without thrashing around all night unable to get my pain under control. I still see Dr. Madill. Just wish now I could find a way to get these BLEEPIN viruses under control and my NK Cells to improve... Then I would be REALLY excited!

    As far as Dr. Goldsteins work.. mannn I wish there was a Dr. who was smart enough to carry on his work, but that doesn't seem to be the case. SUCKS TO BE US!!

    I am convinced the majority of "my" issues are BRAIN DAMAGE related. The things that I have taken that have worked for a short time involve stimulating the brain.

    Just found out I have severe sleep apnea at 125 lbs! I have over 25 CENTRAL apneas per hour... Centrals are caused by the brain not telling the lungs to BREATHE... just groovy! So it is either the Chiari or Lyme causin it! And now I get to wear a sexy CPAP machine to SLEEP! I have glued a few rhine stones to it to make it "cute"...haha It just seems to NEVER EVER END...

    I had a girlfriend visit me the other day ... she was in tears because she had painful HEMMOROIDS!!!! Thank GOD she doesn't spend a DAY in this body... or any or your bodies... She would be a full blown mental patient! Which I feel like I am some days....

    I honor all of your for your strength in battling this BEAST of a condition.

    Jac
     
    zzz and JAH like this.
  11. Starfive

    Starfive

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    Thanks Jac for the update. I am thinking of going off the opiates and need some advice on other meds.
    Hope the best for you! And th paperwork is in the mail to me for an appointment with Dr. Madill.
    We will see how it goes.
     

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