Newbie with FMS w/Question about Methadone

Discussion in 'Fibromyalgia Main Forum' started by PiscesAries, Feb 26, 2006.

  1. PiscesAries

    PiscesAries New Member

    Hi everyone! I hope everyone is doing well. I am soon to be 32 in March and was diagnosed with Fibromyalgia at age 29. I was put through the ringer with every test you can imagine.

    I live on the Gulf Coast and after Katrina hit, I lost my home and several doctors I was seeing. My dilemma is this: I have been on Lortab 10's, Vicodin, Lorcet 10/650, Ultram, and Xanax (wellbutrin sr as well). I am worried about the long-term effects of these meds and am scheduled to visit a methadone clinic for help. I can't stop taking the meds but I need them to function and get out bed!

    I have sacroilitis, IBS, and suffer severe migraines, etc. I have been reading through several threads where some have said methadone is helping them. I get sick when I'm without my meds because I have become tolerant...It's very scary! I have 2 sons 13 1/2 and 5 years old--I have to find another way to get through this.

    I would be so appreciative if anyone could share your experience with methadone. Thanks, Pisces/Aries
  2. saphire27

    saphire27 New Member

    On methadone for a few months.
    Sure helped alot! But i gained weight & decided i wanted to come off of it, the detox from that ,withdrawal i mean
    was horrible, i wanted to die evryday for a month! Then i finally went on the ultram, and that helped me so much.

    I just wouldn't recomend it unless you don't plan on weaning off of it too pretty soon. I weaned off, & had meds to help with it, but it didn't, i don't have time to tell you all the terrible things that it did to me coming off, i don't know, find a doc that knows his stuff, and PLAN IT OUT carefully.

  3. PiscesAries

    PiscesAries New Member

    Thank you Saphire27...I appreciate this info. I'm kind of scared because of the reasons you just mentioned. I've heard it could be more difficult to wean off of the methadone but then I hear so many people stay on it successfully??? I didn't realize weight gain was a side effect--that's not good!
    Anything that will be better on my organs is worth a little weight gain. When you have time, please try to explain the advantages & pitfalls while using this plan of treatment. Thanks so much
  4. PVLady

    PVLady New Member

    Don't be afraid if you ever want to stop opiates you can take Subutex (Buprenorphrine). You can go right from taking the opiates to Subutex and have no withdrawals at all. That is what Subutex is used for, however it also treats pain.

    I was on MS Contin and became "tolerant" of my dose. I had so many side effects I did not want to up the MS Contin dose.

    I went on Subutex, then stayed on a maintenance dose to control my fibro. It has been almost a year and I never have flares anymore.

    Subutex is a very mild opiate. It is also much easier to get off of than regular opiates.

    I am on 16 mg of Subutex a day - you dissolve 4 mg under you tongue 4 X day. Thats all.

    The only meds I take are Tylenol Gel Cap, occasional 1/2 Ultram. and 5 mg Ambien at bedtime.

    Not all doctors can prescribe Subutex. If you are interested you may need to find a doctor who also treats addiction. (They have to be specially licensed to prescribe it).

    You can read on the internet about Subutex - very interesting and you will not suffer at all stopping the other opiates.

    My doctor is an excellent pain specialist and is here in California. If anyone would like info on the Subutex protocol I am sure his office would share it with your doctors.
    [This Message was Edited on 02/26/2006]
  5. PiscesAries

    PiscesAries New Member

    I live on the Gulf Coast and I'm between New Orleans and Gulfport quite a bit...I will definately check into this with my doctor...He's been out for a while because of a surgery and I've really been left to fend for myself lately!

    I thank you for this information! I will try to find someone who can prescribe this since it sounds like a much better alternative. Thank you so much...Lea
  6. bigmh

    bigmh New Member

    Hi P/Aries...just another answer for you...I've been on Methadone for several months, and am doing well. I also have FMS, am down to 1-2 migraines/week from 20+ days/month, have TMJ, hot flashes, etc...the whole enchilada!

    The good news is that methadone has been a real lifesaver for me and has helped me more with the pain than any other med. My pain doc says it helps her FMS patients the most.

    I was having a lot of constipation, though, so I took myself off of it for a couple of weeks. I didn't have withdrawal symptoms, but the pain just about killed me! So with the help of Miralax, I am back on it...10 mg 2-3X/day as needed.

    The other post about Subtelex (sp?) sounded very interesting, but just wanted to give you a positive for methadone...and it's cheap. Oh..no weight gain for me either.

    Blessings and good luck! Ann
  7. PiscesAries

    PiscesAries New Member

    I appreciate your info...There is a lot of controversy surrounding it but at this point I will do just about anything to keep out of these flare ups without damaging my liver/kidneys!

    People have a tendency to look down on this--I'm not one of those people but the only problem is where I live most doctors do not prescribe methadone for pain, therefore, I am going to have to do this at an actual Methadone Maintenance Clinic out of town...I fear trading off one addiction for another (due to the tolerance to all of my meds) and I've heard horror stories about people trying to come off of the methadone...It's scary but I'm willing to give it a try.

    They did inform me that I can't have any benzodiazipines in my urine which is odd since my docs have had me on Xanax for years now so it's going to be hard to abruptly stop before my appt. Information is so conflicting at times but I do appreciate each and every one of you for offering your help and advice...I'll keep you guys posted on how things go. I am grateful for this place--I've avoided opening up about my FM for years in a public forum but this place has given me so much hope. Thanks to all of you! Lea
  8. zena01

    zena01 New Member

    Hi Pices/Aries, I'm on methadone. I've been on it for 6 months, with percocet for BTP. When I began, my Dr. told me that I would become physically dependant on the methadone, but that if/when I get well, he would wean me off of it. He said that while it may be tough, it wouldn't be as bad as trying to quit smoking and that he'd get me through. I trusted him, and it has worked very well for me.

    When I first started I was a bit loopy, but after a couple of weeks I did much better and it doesn't really effect anything but the pain anymore.

    I also had the constipation, and had to quit it for a week to get things going again. I had no problems -- but I had only been on it a month at that time. I did notice a large increase in pain when i was off as I found it had especially helped my foot and leg pain, and also my ribs. Once I started back up, the pain again lessened so it does work for me.

    Yes there is a stigma attached to methadone.....I just told my Dr to put on the prescription "as needed for fibromyalgia pain" so I don't get weird looks at the pharmacy and haven't told anyone I am not close to what I take.

    It really does help me, so I will recommend it. If you do try it, please be sure to watch the constipation so you don't get in trouble before you realize it. I have not noticed a weight gain from it.

    Take care and good luck,
    SherriV
    [This Message was Edited on 02/27/2006]
  9. PiscesAries

    PiscesAries New Member

    I'm glad to hear that it's helping you...I'm starting to feel better getting some feedback about this issue = )

    I just hate that I have to go to an actual MMT clinic for this in Mobile, Al. when I live on the coast of Gulfport...I'm situated between New Orleans and Mobile.
    It's ridiculous that pain management clinics here have come under so much scrutiny so they have to really watch what they prescribe--Methadone is one thing that they don't prescribe very much in my area.

    This means having to go out of state to an actual Methadone Clinic (where people go for an actual detox from opiates)...It's really sad that it has to be this way. I don't want a label from this, just relief from SEVERE fibro without all of the adverse damage to my organs--I don't want to be registered as an addict...I just want a safer alternative. Do any of you happen to know why they would tell me that I cannot have Xanax in my system for this? I'm really confused and won't know anymore info until the appt. on March 7th. It's hard to abrubtly stop this type of medication. Will it be out of my system within a week? Sorry for all of the questions but I'm just really concerned about this. Thank you all for your kindness and replies. I appreciate the help so much. Lea
    [This Message was Edited on 02/27/2006]
  10. If you have been on it for YEARS! DO NOT!! I repeat DO NOT!!! try to get it out of your system in ONE WEEK! MY G*D You will be in A G O N Y!

    Not to mention it is MEDICALLY EXTREMELY EXTREMELY DANGEROUS! You WILL end up in the emergency. Not a doubt in my mind about it. What dosage of Xanax have you been on, and how long?

    It will not be out of your system for a while, and quitting cold turkey is terribly dangerous, I cannot stress this enough to you, not to mention, you will be in the worst pain of your life. Withdrawl from benzodiazepines is a nightmare.

    I weaned off of Klonopin at the *direction of my GP* TOO QUICKLY one time, she apparently had no clue how to do this, or just did not care about my well being, at first, I thought that I was just...*losing my mind,* and flaring badly...as the weeks went on, and I went in to full body muscle spasms, sweats, and nearly psychotic episodes, tremors so bad I couldn't hold things, I finally (with the help of my mother..since I couldn't even think straight or make sense) figured out it was the Klonopin withdrawal... that my GP had yanked me off of it wayyyy too quickly..

    I had been on 2-3 mgs, for 3 yrs, and she took me off of it in 2 weeks. I should have been weaned off of it for no LESS than 2 months! From what 2 other doctors had told me, and other people who have been on Klonopin have told me. I went through tremendous he** because of that woman (my GP) and had to be put back on 1mg of it, until I could wean down properly, but before that, went through about 6wks of he**, and suffered pain you cannot imagine. My insides hurt in ways I cannot describe.

    Please, please, please!!! BE CAREFUL! coming off of your Xanax! You really need a doctor's help to do this, and should not do this cold turkey...

    I completely understand the need for pain relief... I'm finally just now getting it myself, after 6 yrs of suffering many illnesses and I wish you the best,

    What are the medications you are on, and will be stopping, when you get to the MMT?

    (Best of Luck to you,)

    Laura
  11. bigmh

    bigmh New Member

    Hi again P/Aries...as I mentioned, I am on methadone, and occasionally have taken xanax, too, for sleep and anxiety. So I don't know why you couldn't be on both.

    Are there pain management doctors in your area? I know how hard it must be to go to a clinic and feel like a druggie!! I see a pain/rehab doctor for my methadone, and it is comfortable. I understand how hard it must be for you. My GP quit prescribing narcotics, so I have switched just the methadone to this new doctor (about 6 months ago). Best of luck to you, and if it helps you with the pain as it has me and others on this thread, it will be worth it!!

    Blessings, Ann
  12. bettydroop

    bettydroop New Member

    I know its hard to decide and its a big step but- if you decide to - you may get the quality of your life back. Maybe make a pro and cons list and compare?

    If you EVER had to go off - you can do what the gal posted about the Subutex, so you dont really have to worry about that. I had never even heard of it before she posted about it to a post that I had... so it really gave me hope.

    I am on it too- have tried alot of other meds from my rhuemy- this works well for me. No weight gain either.

    I really dont understand WHY they would ask you to stop the Xanax before... makes no sense as far as combining the two unless they think "you are taking too much" and you might have too much sedation.

    Oh listen to the post about withdrawl... cant believe that some drs STILL dont pay any attention to helping people decrease safely. Not too mention very possible chance of having a seizure. So please be careful.

    Good luck and try to ignore those people who may look at ya weird and stuff- they clearly dont understand and not worth your time worrying about what they *THINK*. I have to remind myself of this often and I know its hard sometimes but you know what you are going through and they DONT!

    Take care Karen
  13. PiscesAries

    PiscesAries New Member

    Thanks guys...This information is SO helpful for me right now. I'm not sure if I should even go to this MMT clinic just simply because of the Xanax issue.

    My GP has had me on Xanax 1 mg. 4x daily for the past 2 1/2 years and I did try to stop taking it once before and had that same experience---I felt like I was coming out of my body or something...It was horrible. My mother had to help me as well...I twitched, had muscle spasms, shakes, could hardly walk, etc. I'm not doing this very successfully on my own...I've dropped down to just 1 mg. a day and I'm having mood swings, headaches, and have been so grumpy it's unreal!

    The pain management clinic I was going to did not offer enough help and they can only write so many prescriptions for narcotics...Illicit narcotic abuse has been on the rise in our area, especially since Hurricane Katrina so I'm assuming all doc's are being watched. That leads me back to start...My GP has been out sick, I've just stopped going to the pain mgmt. clinic because they are not helping me at all...My GP was the one prescribing my Bupropion SR, Xanax, muscle relaxers, and pain meds before he referred me to pain mgmt. They didn't want to prescribe my Xanax and said go to my GP for that...Well he's out, they are so skiddish about the pain meds and therefore I'm at the end of my rope.

    Everything that was working for me (including injections for the sacroilitis from my Neurologist who is now gone because of the hurricane!) and now suddenly I'm left to fend for myself...This is a nightmare because I had finally learned how to manage my fibro and now I'm left with no real help or support. The Bupropion SR (generic of Wellbutrin SR) has been a life saver in my case...Once my GP started me on 150 mg 1x a day, my flare-ups really dropped dramatically. My GP is a very good doctor but who knows when he's ever coming back...He lost his home too and just had a major surgery--There's a nit-wit filling in for him until IF/WHEN he ever returns!

    I hate to unload on you guys, but this has been the only place I've found where others truly understand what it's like to suffer with Fibromyalgia (and all that it entails!)...Most people just think you're fine because you appear to be on the outside. I went through sheer he** while trying to figure out what was wrong with me! I now have the support and love of my family because I've given them so much literature on the condition so they could really know where I'm coming from. It's just a shame how many doc's are still out there who have misconceptions about FM sufferers. My regimen has been disrupted so this Methadone clinic is a last resort effort---It also happens to be a treatment center for "addicts" so there is a stigma surrounding the place...I've been concerned with the long term effects of pain meds on the organs for quite some time and I've read so many positive stories about the methadone so I thought I would do this on my own because I'm under no guidance whatsover right now.

    It's really unfortunate because this clinic will not treat you with methadone (I'm assuming because it's a "rehab" clinic) if you have any benzodiazipines in your urine??? I'm just lost! I didn't realize it takes a while for the benzo's to clear your system so I have to cancel this appt.
    and figure out where to go from here. I'm trying to stay optimistic but it's hard since the hurricane has basically sent all the doctors running out of the area...So many have just up and left. Thanks for hearing me rant guys--I appreciate all of you for helping me out...It means so much to me to have you guys for advice and as a sounding board. Thanks, Lea = )