Discussion in 'Fibromyalgia Main Forum' started by hartogold, Apr 20, 2006.

  1. hartogold

    hartogold New Member

    I was diagnosed with FMS about 4 years ago, but have had it for a lot longer. I was referred to a doctor who specializes in pain management. She is also an anesthesiologist.

    My docs have tried numerous on me and nothing seems to work. Of course I judge them only if they take my pain away completely and now I realize that that will never happen. The best I can expect is to get under a 5 and that's only when we find the right "cocktail" for me.

    I've been on Fentanyl patches for months (150mg every 72 hours)and Lyrica. I was recently put on methadone 10mg, 3 X per day. I also take magnesium citramate. I have a high threshold for pain meds and always have.

    Just curious what folks are taking or if there is something new I should know about and who better to ask then my family here? :)

    Here's to spring and summer and warm sunshine.
  2. tinypillar

    tinypillar New Member

    Effexor (low dose, it's in the other room and I don't want to get up)

    Piroxicam 20mg - NSAID, anti-inflamitory

    Night before bed:

    Cyclobenzaprine 10mg - generic for flexeril, a muscle relaxant. I sometimes take this when I get home from work if I'm feeling really achy, instead of waiting until later in the night.

    Ambien (low dose, also in the other room) - sleeping pill. If I'm having bad days and I realize it's from not sleeping well (we never really sleep well, at least I don't), or if I'm having problems going to sleep I take it. I don't take this everynight anymore, I did for a few weeks and now my body seems to fall asleep on it's own. The main problem I have with sleep is I either can't fall asleep, or I wake up several times during the night.

    I don't take anything specifically for pain, but I'm considering asking for something on my next dr. visit. My symptoms have changed somewhat the past few months, on this current program I have a decent amount of energy (considering I used to sleep all day on a regular basis), but I feel my pain level is either good, or a lot worse. When I feel bad (like worse than my "normal") I usually deal with it by going to sleep early (knocking myself out on the sleeping pill).
  3. Crispangel66

    Crispangel66 New Member

    I have had fms a long time also, as for me I take:

    Vicodin 7.5/750mg-4x a day (for Pain)

    Soma 350 mg-4 x a day (for Muscle spasms)

    Xanax 1mg-3x a day (helps with pain and anxiety)

    Trazadone 100mg-bedtime (for sleep)

    I have been on all of these for years I am going to ask my dr to increase the dose on everything except for my Soma, b/c I have been on these same doses for five years or more.

    Godd luck to you I hope you can find some pain meds that help you.


  4. NyroFan

    NyroFan New Member

    I take Percocet, Ultram and Klonopin. Like you, the pain is always there, but the meds decrease it enough so I can move around a little better. Remember: Fibromyalgia is a disease characterized by severe pain.

  5. jakeg

    jakeg New Member


    I take 2 pain meds and that's all, and they are oxycontin 10mg 2 x a day and vicodin 5/500every 4 hrs as needed for break through.

    I used to take neurontin until I developed a severe shin rash because of it. It seemed to be helping a lot with the pain.

  6. 1sweetie

    1sweetie New Member

    I take Oxycontin (20 mg) 3 times daily with Percocet 10/325 for breakthrough pain and yes there is still pain but it helps a great deal (except my feet). To get the relief I need, I have to add long soaks in the tub with either Epsom salt or Dead Sea Salt. I buy it 60 lbs at a time. Massage is a God send if I can get one. I use someone that is very knowledgeable with CFS/FM and my body cries for one at least every 2 weeks. I use to go every week but between $$$, transportation , and sometimes just being too sick, I don't get to go and it shows in my body. I have also worked hard to make my bed as comfortable as possible and use a recliner when not in bed. Magnesium and malic acid also help with pain and I can tell when I do not use those supplements.

    I could not get the pain in my feet under control with anything. A few weeks ago I had to have a tooth pulled because of an abscess. The oral surgeon added 4 600 mg Ibuprofen and an antibiotic to my normal meds. I was quite surprised and happy that the pain in my feet was bearable. I had tried everything from wax baths, massage, and foot soaks to only get short term relief and all I needed was to add something so simple as Ibuprofen and possibly the antibiotic to help the other meds.

    I would like to ask you a question please. My husband is on Fentanyl is help control his pain from disc problems. I have seen warnings about the patch and they scare me. My doctor was going to put me on that in lieu of Oxycontin but I use those long baths for pain relief and was afraid to use the patch and I was not familiar with it at all at that time. I know that you are suppose to limit hot showers, hot tubs, etc. to keep the med from releasing at once. Do you know if physical activity such as mowing a yard while it is hot outside will do the same??? I was going to start a thread to find out more about the patch but I saw that you use it and may know the answer.

    I hope you find relief soon. I just don't think that we will be able to find total relief in medication. We just have to keep trying new things and maybe we can find a place that will make it bearable.

    I read your profile and you too have been through a great deal of trauma. I understand that. I have not finished writing mine, it was so tiring and bringing back lots of memories that I need to leave behind.

    You should be proud of what you have done for yourself. I admire you for what you have done to help your health and self esteem.

  7. hartogold

    hartogold New Member

    You definitely are a sweetie. Thanks for your support.

    I'm not an expert with the patches. I've been on them since November so this will be my first experience wearing them in hot weather. I've never had problems in hot baths or showers.

    I don't notice any side effects at all. They seem to have just become part of my body. I can only imagine what my pain would be like without them. 150mg is a large dosage too.

    I'm afraid that's all I can tell you. You know how differently we all react to different meds. God I pray they figure this stuff out soon. Best of luck to you and your husband.

  8. Hope4Sofia

    Hope4Sofia New Member

    I tend to get nauseaous on everything. I haven't tried Neurontin yet - does that make anyone else nauseous?

    I tried tramadol low dose - supposed to be very mild - couldn't get out of bed all day I was so sick. Same with Vicodin, percocet, demerol, imitrex, fioricet, cafergot.....

    I'm just plain scared to take anything now.

    I'm actually very frustrated with my pain right now is none of my natural remedies seem to be doing the trick either.

    I'd love to hear more input from others. Something has to help.

    Wish I could help you more.


  9. starmom

    starmom New Member

    i am so thankful and relieved to have a bunch of other people who need high level pain meds. around here people think that if you need darvocet you are a druggie. One doc saw me ONE time and put in the chart no more appts -- drug addict!!! I could barely walk and was only on Aleve and prilosec and imitrex!!

    I take:

    Xanax .5 mg prn
    Darvocet prn (doesn't do anythoiing so I stopped it)
    Soma (only muscle relaxer that works and I have tried everything listed anywhere I could find anything on MRs)
    My doc will let me have 40 per month. Period.

    Lortab 7.5/650 works a little. Again oonly 40 per month.

    Lopressor to prevent migraines
    Estrogen - had hysterectomy at 32
    Imitrex 100 mg as needed

    I am scheduled to see a rheumy who treat FMS primarily on May 10. My doc only gave me lortab b/c I have this appt.

    I have a very high tolerance for pain meds and they make me itch. At least they stop the diarrhea from IBS.

    Why do the docs always act like I am a druggie? My doc before we moved gave me as much soma and lortab or hydrocodone as I needed. I was a lto better then, but he NEVER made me feel like a druggie.

    Planning to ask for better pain meds at the rheumy appt. Have had every NSAID, can't take them anymore. get rashes. Same for Cox-2 inhibitors. Even OTC muscle rubs iwth aspirin derivatives make me break out.

    I have an Epi-Pen in case I get a worse reaction from an accidental exposure to NSAIDS or aspirin.

    Tylenol is useless.

  10. marilynb

    marilynb New Member

    Upon awakening, everyday, I take
    a Norco (Hydrocodone) 10/325 & a Methocarbamo (Robaxin)500
    I was allowed 5 a day of Norco & 3 a day of Robaxin but on my last visit to the pain clinic, they wrote for a max of 4 a day of Norco & 2 a day of Robaxin. So far, I have not complied, so I need to go back in & let them know, I still need the 5 & 3. I hope they will agree, otherwise I am going to be out & then have nothing. I am so afraid they will stop seeing me If I do not comply, but I really need this to function because I do work 30 hours a week.

    I also take a multivitamin & viactiv calcium chews.

    At bedtime, I take Zoloft 100mg & Aciphex 20mg &
    Alprazolam (Xanax) 0.5mg
    I usually also will have to take a Norco at bedtime. That is the 5th one that I need to try to stop taking.
    I also have to take a hormone replacement Triest 2.5mg.

    I sure hope you find what works for you. I have not tried the patches, so I don't know if they would work for me or not. None of my Drs have mentioned that to me.

    Good luck,
    [This Message was Edited on 04/21/2006]
  11. hartogold

    hartogold New Member

    What horrible experiences you have had. Thank God my docs are pretty good about my meds and believe there is such has CPS/FMS.

    It's still been a nightmare trying to find the right one/s.
    I've had to same medical doc for 4 years, the same psychiatrist for 8 years and my pain doc for only 3 months.
    Actually I was referred to the pain doc by my primary care physician.

    Some othere things that has put a snag in my search for pain relief is I had gastric bypass surgery in 04 and I can't take most NSAIDS, and have to chew a lot of my meds so they'll have a chance to dissolve in my stomach. I don't know if I can even remember everything they've tried.

    Then in January, I had major shoulder surgery so that kind of confused docs with my pain.
    Here are just the ones I remember:

    Morphine Sulfate
    Liquid Morphine
    Plus numerous sleeping and anti anxiety meds (I'm bi-polar as well).

    The ones I'm on now (which I just started this week) seem to be helping a little. I've not had my pain level below a 5 for months and now it's been running a 5-6 instead of an 8-10.

    I don't get high on any of them. I can function just function and sleep a little better.

    I'm suprised my hubby can stand me, but he loves and supports me as I do him.

    It's so hard trying to live on SSDI and pay living expenses...especially with Mr. Bush's changes in Medi-care.
    I've always enjoyed working in the yard and doing home improvement. Now I can only do the minimum. There's so much that needs to be done around the house but we can afford to pay anyone to do it.

    I'm sorry I'm going on, but you know how it is when you find someone like you who understands. Please feel free to email me if you like. I'd like to stay in contact to compare notes and sob stories :).

    Take care and gentle hugs,
  12. millennia

    millennia New Member

    I tried what seemed like a million things before mifrapex. Nothing worked. I was nervous because some people said that the side effects were hell. In fact most did. But my doc put me on a really low dose, gradually raising it. My legs feel better than they have in years! I have hours of time with no pain and I haven't had a day where I was in so much pain I could vomit in over a month! I think that is a record!
  13. mildred623

    mildred623 New Member

    The best thing I found for the pain was Methadone, 20 mg. 3 times a day. Unfortunatley I no longer see that doc and my new doc wont RX it.

    Right now I take the following

    Vicodan 2 pills 4 times a day
    Xanax 1 mg 3 times a day
    Requip 1 pill at bedtime
    Flexeril 1 pill at bedtime
  14. claudiaw

    claudiaw New Member

    Zanaflex in the morning

    Darvocet if needed in afternoon

    Valium if needed in afternoon if still feeling tight

    flexerial at night

    darvocet if needed

    Valium if needed

    I try not to take darvocet more than 1 x a day at most,I don't want to build up tolerance(seemed to have anyway).

    I don't take valium(5mg) everyday, only when extra muscle relaxing is needed or for sleep.

    I take 4 darvocet and 20mg valium when I get migraine, it's the only thing that help's. Now it is not helping like it used to. Don't know what I'm going to do.

    Migraine med's just raise my BP, do nothing for migraine, because it start's as a tension headache.

    best wishes,

  15. tandy

    tandy New Member

    You guys are gettin the goods!!!

    Don't move to NY cause you'll get notta!!

    stinkin ultram!~
    oh,..and Lyrica. If you can get by the side effects of that one your doing better than I.
    They make ya suffer unless your terminally ill.
    I use to get darvecet untill a doc. thought that me taking/needing 3 a day was too much. (!!!! yea. go figure!)?? obviously this dr. does'nt have a clue what FM can feel like.
    I basically have nothing but OTC meds for this hellish pain of FM.
    Its been 13 yrs.
    Even a pain specialist could only offer me MORE ultram.
    (and zanaflex for evening hrs)
    I think I need to move out of state.

    hugs and better days ahead for us all :)
    better days,... ?? sounds like a dreamland.
    I think its called heaven~
  16. millennia

    millennia New Member

    I live in NY and my doctor has never prescribed me a pain killer, even though I'm in there all the time literally crying about how much pain I'm in. It never occured to me that my location could have something to do with it. I'm glad that he's not just trying to mask the symptoms, but find something that stops the pain, but some days I just want a little rest from it!

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