Who benefits from pain meds? PLS READ! THX.

Discussion in 'Fibromyalgia Main Forum' started by outraged, May 13, 2003.

  1. outraged

    outraged New Member

    Hello everyone!
    Along with the current research I am conducting regarding FMS/CFS, I would like to add additional information with respect to undermanaged pain. Thus, I would like to know how many of you benefit from pain medication, what kinds of pain medication, whether or not your dosages are sufficient (be realistic, would you benefit from a higher dose and why), how successful have you been at attaining these medications, and finally, how have you been treated by doctors, pharmacists, etc., just for asking for pain medications.
    I want to compile info from people who suffer from chronic, non-malignant, pain from throughout the entire world. I think this would have more of an impact and hopefully keep the ball rolling that you all have so graciously and effectively started.

    Thanks and God Bless,

  2. klutzo

    klutzo New Member

    I'll try to be as brief as possible.
    I have Xanax and Tylenol. For really bad times I have Restoril and Phenergan. The only pain med in there is the Tylenol! Tylenol is horrible for your kidneys and liver. I would love to take more Xanax, so I could stop taking Tylenol, but most docs don't even want me to take the small amt. of Xanax I am taking already, let alone give me more. I think it is criminal to make someone ruin their liver due to fear of addiction. I am already dependent on Xanax, but have been on it for 17 yrs. and am not addicted (I take less now than I did 17 yrs. ago) so I can't see why I should not take enough to eliminate the need for the Tylenol.
    When I used to have migraines, before menopause blessedly put an end to them, I was given Restoril and Phenergan for that too. It kept the edge off so I didn't have a stroke from the way the pain raised my blood pressure, but it didn't really knock out the headache, so they would last for 3 days and I would become nauseous from posioning myself with all those doses of inadequate meds. When I was a teenager, docs used to give me migraine meds that actually worked, and with only one dose! I would take Phenergan and one Seconal, and that was it, goodbye migraine!
    The junkies have ruined it for those of us with legitimate pain problems. Yet another case of the few who abuse taking away the freedom for the many.
  3. ForeverFlaring

    ForeverFlaring New Member

    For pain I take Sudlinac..an anti-inflammatory. It does absolutely nothing for the muscular pain and aches, however it does seem to help my joints when they feel particulary swollen. If I were to rate my pain relief from zero being the worst to ten being the most adequate pain relief, I would give this a three.
  4. achy

    achy New Member

    I had started wiht the usual dosage of ultram and skelaxin. That just took the edge off. I tried everything in the book and finally started on oxycontin, percocet for breakthru, soma, xanax and zoloft.My pain was much better from a 10 to a 6-7. Unfortunaely I was also vomiting, so I had to take something else for that...the zoloft depleted my dopamine, so I had to take something else for that...then came the migranes...and another prescrip0tion!! I was also meaner than a rattlesnake. Even though my doc said it wasn't the meds I stopped taking the oxy..lo and behold the neausea and vomiting stopped too. After a month the anger/temper was gone.
    So here I am. wiht a new doc..starting from scratch.
    Back on ultram...takes the edge off, but not enough.
    He will not rX anything else for fibro.
    This doc WILL NOT prescribe soma, even though I slept like a baby, wiht no side effects. He only allows flexeril..so i have morning hangover htat lasts for hours. And im back to waking 3-4 times a night.

    I wish they would come up wiht a consistent treatment for this DD. Do I have enough pain control,, heck no. I don'
    t know what it's like not to hurt. And thre docs just say..this is a lifetime illness..you'll just have to learn to deal wiht it. Yeah right.

  5. KayL

    KayL New Member

    I take Lortab 10/500 and Soma 350mg, usually 3 times a day. I've actually had some better days recently where I only took it twice in a day, but I've also had some really bad days in between where I took it 4, and even 5 times a day on one occasion.

    I personally don't want to move to anything stronger, because I've got a lot of years (hopefully! LOL) left to deal with this, and want options down the road if I need them. Most of the time the Lortab and Soma give me at least some relief, and sometimes a lot of relief.

    It took me several years to find a good doctor who believes, will diagnose, and prescribe. So far I've had no problem with my meds and my doc. He only writes enough to last until the next visit. Of course, I do have that fear that he will one day suddenly decide he's not comfortable prescribing them, as I've read so many others post about. But for now this seems to be a workable situation.

  6. layinglow

    layinglow New Member

    My pain is being managed well. I take ultram for mild to moderate pain, and Vicodin when the pain becomes stronger. I also take klonopin for nerve pain.

    This wasn't always so, and it took me a great deal of time and effort to find a good doctor to manage my CFS/FMS pain.

  7. outraged

    outraged New Member

    Sounds too familiar. Hey, I'll trade you my soma for your oxycontin lmao...just kiddin moderator, pls. don't get mad at me. :) What gets me is that different things work for different people but the doctors want everyone to fit into a nice and neat little package. What gives? Every other disease has the same dynamics as far as the myriad of medications that work for different people. Why is this disease so different?
  8. outraged

    outraged New Member

    Hi Layinglow,

    I was wondering if you describe your nerve pain. What caused your nerve pain, where is it located, and how does the Klonopin (sp) help?
    I had a presacral neurectomy a few years ago and as a result, I have a couple of "dead" nerves that were discovered during an "emg" (nerve function test). So I'm just curious.


  9. kmelodyg

    kmelodyg New Member


    I have tried soooo many different meds (Ultram, Ultracet, Flexeril, Vicoden, Vicoprofen, Lortab, Percocet, Oxycontin), and currently I am on 10 mg. Percocet 3 times a day with nothing for breakthrough pain. It is supposed to last me 6 hours and of course it dosen't. This morning I had to take 2 instead of one. My doc has been told time and time again that it's not enough, but he's not listening to me. I am currently looking for a new doc. I am soooo sick of suffering!! I can hardly walk anymore. My doc is so worried about me becoming addicted instead of just treating the pain. He is trying to pass me off to a Neurosurgeon who can't see me until October. Mabye someday I will be pain free and functional. One can only hope and dream.

  10. layinglow

    layinglow New Member

    Yes, I can describe it---it is an electrifying, Zapping, sharp, pain--horrendous. It originates in the back of my neck, and shoots across my right shoulder and down my right arm. For awhile it reached my fingers, but then it settled in my forearm, and the top of my forearm feels as if its burning. My neurologist said I had the neck of an 80 yr. old woman (I'm 45), after looking at my cervical xrays, and MRI. I have arthritis, and stenosis. I was in a head on car wreck (a drunk plowed into me) 13 years ago.
    During the time I was seeing the neurologist--I was taking Vicodin--and it did not phase this type of pain. Once I began seeing another doctor, and was put on klonopin for myclonic jerking, sensory overload, and restless leg syndrome, the nerve pain diminished.

    [This Message was Edited on 05/15/2003]
  11. outraged

    outraged New Member

    Laying...thanks for the info on nerve pain!

    All of you who are responding...thanks!!! Your answers are helping immensly! I am considering a criminal and/or civil action against the DEA, the Board of Pharmacy, the Board of Medicine, and other agencies involved in making the decisions about prescribing practices. I think we are ALL entitled to live as pain free as possible and as functionally as possible without having to be made feel like some kind of "junkie", "drug seeker", and/or some type of street thug! The lack of treatment and total disregard for our repeated requests for sufficient pain relief, not to mention, at the very least, the lack of respect that we've all encountered by physicians, nurses, and pharmacists is simply NOT acceptable to me any longer!
    I would like to have your thoughts on this issue,as well. I know some of you have already responded specifically to this issue, however, I would like to hear more. I would like to know how you feel about my plans of criminal and/or civil action. Would you be supportive of something like this? Would you help with letters describing your experiences with respect to these specific issues, etc?

    Thanks! You all are so wonderful!!

  12. lorgirls

    lorgirls New Member

    I take 200mg 3x a day of Neurontin for nerve pain. ********
    was taking 100mg Zoloft ( worked great ) new ins dosent cove it so now Im taking 12.5mg paxil works so so ( think I need to up the dose )I take soma for muscle spasms. Have tried others but soma works the best for me.Usualy 1 at bed time. For probs during the day I take 1/2.*****************
    I take darvacet for pain. Most of the time I only take 1 for unbarable pain I take 2. I too take as little as posible as I have maney yrs ahead.with this DD. I dont take my med to totaly get rid of pain just to be able to function. Have 3 kids so cant be all doped up.
  13. Meerkat60

    Meerkat60 New Member

    I was in pain for some time before I was dx with FMS. It was excruciating but I had no way to get meds. I did have some Percocet left over from when I had neck surgery so when the pain got so bad that I didn't think I could stand it one minute longer, I would take one of those. I didn't have many though so I hoarded them and worried about running out. I even thought I might have to risk arrest and try to buy some from someone. Fortunately, I found a good doctor who dx me with FMS.

    In the beginning I was alternating between Darvocet and Codeine. I took Davocet mainly during my period because since I've had FMS my periods are so painful. They last 4 days and my cycle has shortened to about 22 days so for every 4 out of 22 days I feel like I'm in hell (well, a lower hell than I'm normally in). For some reason the Darvocet worked better for that pain than the Codeine. Although the Codeine took the edge off, I was still in a lot of pain. My doctor told me to try taking 1 and 1/2 or even 2 Codeine at the time, but I couldn't do it because of stomach problems (pain, IBS, acid reflux). A few months ago, he pushed for me to try Vicodin. I've always worried about being totally honest about the pain because I'm afraid I'll be perceived as trying to get pain medicine (which IS what I'm trying to do but I'm sure you know what I mean). I've been without it completely and I don't want to go back there when I'm still in pain. I tried the Vicodin and it helped a lot. I usually take 3 or four a day. When I have good days (rarely) I don't take it at all and just use Codeine if I need it.

    I also take Flexoril for muscle cramps and Ambien for sleep. I have trouble with panic attacks occasionally and have Xanax for those (maybe 3 or 4 times a month). I also have migraines once or twice a week and take Mepergan Fortis for that (skipping the Vicodin when I take this). My other medicines include Prilosec for acid reflux and Accolate and an albuterol inhaler for asthma.

    My doctor support system is good right now so I'm not having any trouble getting my medications. No negativity from the pharmacist either.

    BTW, someone mentioned the Duragesic patch, I think it was aaronkatie but I'm not sure. Anyway, I'd like to know more about it because that's what I was planning to go on when I have insurance again. I can't right now because I can't afford it and 100 Vicodin (generic) only costs about $17. I was really looking forward to the day when I could try the patch but evidently some people have had negative experiences with it. That's depressing for me.

  14. RedB

    RedB New Member

    Am currently taking 200 mgs of Neurontin a day. It helps cut the edge with the nerve pain, but doesn't help with the muscle pain. Luckily, my muscle pain is something I can handle. I also take Ativan, an anti-anxiety medicine.

    I have tried others that did nothing for my pain:

    Muscle relaxers: Zanaflex and Flexeril (Flexeril does help me sleep)

    Others: 800 mgs Tylenol, Vioxx, Celebrex, Ultram, Vicodin

  15. jeniwren

    jeniwren New Member

    Hi, I don't recognise most of what people have posted as I'm from OZ so I reckon you won't recognise our meds either so I'll add in the ingredients.

    I take panadiene daily which is 500mg paracetamol with 8 mg codeine and on a really bad day or during periods when I have a flare-up I take Panadiene Forte which is 500 mg paracetamol with 30 mg codeine. They both control the pain to "managable" levels...(read I'm not quite climbing the walls).

    Thanks, Jeni
  16. outraged

    outraged New Member


    Please don't be upset by the negative comments about the Duragesic Fetanyl Patch. As you know, many people react differently to many medications. If your doctor thinks (or if you think) the patch is indicated and might work for you, give it a try, you might be pleasantly surprised.
    I tried the patch about 2 years ago and although it didn't totally relieve my pain, it did help alot.
    I hope the patch works out for you! Let me know.

    God Bless,

  17. outraged

    outraged New Member

    Hiya Jeni!

    Thanks for responding to my post.
    You're right, I've not heard of the medication(s) you are currently taking, nor the ingredients for that matter. I will research these medications further so that I can have a better understanding of how they work.
    It's nice to meet you. Here's wishing you as little pain as possible,

  18. Lox

    Lox New Member


    I am from Oz too and get so frustrated when i read about all the different meds and supplements that are mentioned on the board here and are not available in Oz. However one must expect that I guess, though it doesn't sit well with me and shows just how behind we are here!

    At the moment I take Nurofen Plus - contains Ibuprofen 200mg and Codeine 12.8mg. It doesn't do all that much but takes the edge off, sometimes.

    Getting anything stronger out of my GP is like getting blood out of a stone.


    Lauren :)
  19. Dara

    Dara New Member

    using the Duragesic Patch (25), and Vicodin 5/500 for break thru pain. Xanax, Zanaflex, and Ambien for sleeping. Am I pain free?? No, I am not. When they put me on the patch I honestly thought I wouldn't have to take anything else, but I was wrong. My mornings are still extremely painful. The most relief I have seen since starting on the patch is in the early to late afternoons. My best time is usually from 1:00pm to about 4 or 4:30, then it's just like it was before. Also, you asked about nerve pain. I also have nerve pain in my hand, it starts about where my wrist ends and goes down the length of one of my fingers. It is absolutely the very worse pain I have ever felt, thankfully it usually only lasts for seconds. It's the type of pain where when you have it you just freeze, waiting for it to stop.

  20. outraged

    outraged New Member

    hiya Lox!

    First let me say that it's very nice to meet you! I've always wanted to visit OZ. Maybe when I start getting the treatment I need.
    Anyway, I hear what you are saying. Getting sufficient pain relief is difficult worldwide it seems. I have started to purchase Vicodin online to help get me through the more difficult times.
    I look forward to chatting with ya more in the future. Thanks for responding to my post!