Discussion in 'Fibromyalgia Main Forum' started by Janalynn, Nov 3, 2008.

  1. Janalynn

    Janalynn New Member

    Hi there-
    I know what trouble you've been having with your pain medication and getting enough relief. I just wanted to share with you my personal experience. Of course, it's MY experience and as we all know what works for one, does not necessarily work for another.

    I was on Norco for a while. It worked for a good long time. If you're on the 10/325 - your maximum allowable dose of Tylenol is 4000 mg so actually 12 a day would be your max. If the Tylenol in your med was 500 mgs, then you would be allowed 8 per day. Of course, you probably wouldn't want 12 a day everyday, but I thought I'd share that with you. I did a lot of confirming that with my pharmacy and doctors.

    I visited a pain clinic (once) she suggested that percocet - it is stronger than Norco. That may be an option for you. I do not know if it comes in 10/325 strengths.

    I was scared to death to try to longer acting medications. I don't know why, I think because of the stories I'd heard on the news etc., but let me tell you - they make a huge difference!

    Because I am very aware of the amount of Tylenol I am consuming, I opted for a form of Oxycodone (like Percocet) that doesn't have Tylenol in it. I also take Oxycontin. If you take the longer acting meds, you do not notice the sudden drop when your other meds wear off.
    I do not "feel weird" at all on my medication. It is a very gradual feeling of relief. No high, no dizziness, no nothing. Again - that's me. I am glad my doctor recommended it.

    I did notice that the medication without Tylenol does not seem to be as effective sometimes, so if necessary, I'll take a Tylenol with it.

    Also - do you take any muscle relaxers? I can't remember if that's part of your regimen or not. I take Soma which to me works better than Flexiril and some others I've tried.

    It is very normal (unfortunately) for us to have to change our doses. It STINKS. But there are options available to you. I would never have known or even thought about the Percocet if the pain mgmt doctor hadn't brought it up. You may ask to try it to see if it works any better than your Norco.
    Like you, I know my doctor will be there for me when I need help getting off them. I only hope that there's a day that I don't need anything for pain.
    My best to you - you're always in my thoughts.
  2. hermitlady

    hermitlady Member

    Thank you so much for caring about me and my med issues. I know we've posted about this before and you seem to know a lot about these darned meds. Sounds like you've been in pain for a long time, it's exhausting isn't it?

    I know you've mentioned to me about the max on the Tylenol being 4000 per day. The max amt of Norco that my Dr prescribed is 8....so that means I can't get my rx refilled any sooner if I do go up to 12 sometimes and run out before the 30 days are up. I know one time I asked for my refill 5 days before the 30 days were up and the pharmacist wouldn't fill it. I don't know for sure if it was due to drug enforcement rules or insurance rules, probably both.

    Anyway, I'm going to run out early this time and I'm dreading dealing w getting the refill. I'm switching pharmacies anyway because my old pharmacist has commented to me several times that I'm taking too many meds and he makes me feel like a drug addict or something. I don't need to be treated like that, it really bothered me.

    My dr. prescribes all my meds, so I don't know why this pharmacist thinks he needs to be the drug police! I guess that's his job, I know the rules have really tightened up regarding pain meds. But, come on! I take them for pain, not to get high...but he's really gotten me upset a couple of times.

    How do you get the meds refilled early if you have had a bad couple of wks and had to take more than you're allotted on the prescription? I think I only have about 4 more days left and then I will run out, so I need to figure out what to do.

    I took Percocet for 2 wks in August because I had shoulder surgery. I think they were just for every 6 hrs tho, not long acting. It was stronger than the Norco tho, made me feel pretty loopy. And then when I stopped/ran out (they were just for post op pain) I felt really sick, I'm sure it was withdrawals for a couple of days.

    I don't really understand how the dependence and withdrawal thing works, I didn't think that would happen because I was still taking Norco. I had been alternating between the Percocet and Norco. I know some of the narcotics break down into the same compound eventually...my dr said Morphine is like hydrocodone in a way, but the liver doesn't have to process it as much (?)...something like that.

    I do know that the Norco really wears off all of a sudden, then I'm feeling like death. I rarely make it the full 6 hrs between doses (as prescribed) during the day, usually 4-5 hrs. Longer acting, smoother release would be much better. I tried MS Contin for longer acting, but didn't care for it. It made me more tired than I already am and just didn't help much.

    I do take Flexeril at bedtime sometimes. Can't take it during the day unless I want to sleep all day. I tried a couple of other muscle relaxants, but they pretty much put me in a coma. I'm really sensitive to anything that has a side effect of drowsiness.

    What is Oxycontin by "brand name'? I get them mixed up. Is the Percocet you take specifically formulated as an extended release med? I'd like to see info that lists all these types of meds, how long they work, strengths compared, side effects, etc. I guess I could probably find it somewhere thru Google.

    Well, I've managed to write a book here, are you still awake? This issue has been rattling around my brain over and over everyday lately. I just discontinued 2 of my meds I was taking for depression, I never thought they were helping anyway. So that shortened my med list a little, I'll see how I feel after a couple of wks...I just took my last weaning doses tonight.

    You really made my day by posting to me. I so so so appreciate your thoughtfulness. I feel like people avoid me cuz all I seem to do is complain, I've developed a completely different personality since these dds took over my body and my life. You made me feel good and thank you so much.

    I'll see you later......xxxooo Hermit

  3. doxygirl

    doxygirl New Member

    I hope you don't mind me coming in here?:)

    Jana you have been a rock for me through my ordeal with medications.....and I will always remember you for this....and of course I thank you from the bottom of my heart for caring!

    Hermy.....and Jana too, I recently got my life back! "oh I have been through heck and back trying this med and that med.....and just when I found one that worked my ins pulls the plug....

    well....it has been months now that I had to stop taking oxycodone because my ins stopped paying for it and it was too exspensive for me to pay cash....

    My Dr tried his best to give me other things and like you I worry about my liver and kidneys etc.....believe me I was on some pretty strong pain meds...and really all they were doing was maybe taking the edge of my pain off.....

    and it always felt like it was time to take more since they wore off so quickly...
    Iam not sure if you saw my post about the fentanyl patch or not...so I will tell you:........

    Just last week I went for my monthly appt with my pain dr....and he could see that I was giving up.....he could see the pain in my eyes and face and when he asked me what was going on it took me about 3 minutes to compose myself to tell him how badly I was feeling and how much the pain was out of control!

    But when I did gain my composure ( poor Dr ) hahaha....my dr looked at my chart and realized that I needed to be taking a long term pain med.....since my ins robbed me of one that worked we never replaced it!

    But this time we did....he put me on the fentanyl patch...and "yeah" there have been a few hurdles to go over...like nausea...and feeling sleepy...but my family just tonight said to me.....we can tell you are feeling better....your not on edge and your relaxed!

    I myself knew after the first few hours on the patch that I was back in control of my pain and not vise versa!

    This patch has given me my life back I swear!

    and I just wanted to share this with you.....it would make me feel so good to know by telling you this that I was able to help you too....

    there is no reason to suffer or to always have to be on edge when it is time for a refill.....these patches almost make it so you forget you have to change them .......

    now as far as your pharmacy...Iam so upset that it may take me a moment to find words here...........

    "ummmm ok you do not have to put up with this nonsense from your pharmacy at all" the pharmacist's job is to fill your scripts !!!!!!If he/she has a problem he/she needs to address your dr not YOU!!!!!!!!

    I have personally had to change pharmacies many times before finding one that I can trust but more so than that ONE THAT TRUSTS ME!!!!!!!!

    now that is huge....because that is the problem you are having....your pharmacist is not trusting YOU!

    May I suggest you find a pharmacist that will TRUST YOU and keep looking till you find one ok?

    If you cannot find one.....I know of a pharmacy that is like no other...the lady that owns it is like no other that i have ever met......I live over an hour from her and she is willing to do all of the footwork to make sure I get my refills and that I get them on time....

    for example she is closed on weekends ...but one weekend I had a dilemna and she actually went out of her way to drive all the way to her pharmacy from her home to get me my medication...

    now I know not all pharmacies will do this....but if you look hard and long enough you can find one that will TRUST YOU and work WITH YOU and not against you!

    If you want the name and number of my pharmacy I would be happy to share it with you.....this lady works with people as far as montana I kid you not!

    She knows her stuff....she knows our rights as pain patients and because she is educated on our rights and hers she is not afraid to help us!

    I live far from her so almost every month she mails me all of my medications......

    PLEASE let me know if there is anything that I can do to help either of you ok?:) because I do not want you to be hassled or belittled.....

    A good pharmacist will understand how scary it is to even think about running out of your narcotic pain med(s) when you have been taking them for so long and your body is dependent!

    Ok I think I have rambled on long enough.....but like I said if you need me Iam here!:)

    You do not have to go through this nonsense!

    Love you both
  4. Janalynn

    Janalynn New Member

    Hermitlady - you don't ever have to thank me for caring about you! I totally understand where you are. I understand your pain and I understand your frustration. It is not a fun place to be. To say it's exhausting is an understatement!

    Oxycontin (think of "contin" continuous) is the extended release. Oxycodone is the shorter acting - like Percocet. I tried MS Contin and it did nothing for me. Oxycontin is the brand name I believe.

    Because you feel pain as soon as your meds wear off does not mean you're going through withdrawal, it means the pain med wore off. Switching pain meds should also not throw you into withdrawal. You'd know if you were having true withdrawal - your whole body would tell you. I am sure my body is dependent. It's often hard to know whether you feel pain because you think you need your medication or because you feel FM pain, but there have been days that I don't need it for several hours so I can tell the difference. Also, I'll have pain in one leg, not both for instance.

    As far as your pharmacy/pharmacist goes - there is one guy at my pharmacy who is downright mean. What ins. do you have? Some ins. companies won't allow early refills - mine does. So if I have to fill it a couple of days early cause I'm going out of town or something it generally isn't a problem, but my prescriptions have to be picked up every month at the dr's office so I really can't get them too early anyway. Many ins. companies will allow 3 days early.

    When is your next refill due? You're going to have to ration or talk to your dr. You can't be without anything. Is your Dr. pretty understanding? The first dr. I had that prescribed for me was very understanding, I remember telling him how hard it was to be in writhing pain, having something you knew you could take to relieve it, but you couldn't take it (cause you'd be over your allotted amount).

    When do you see your Dr. again? You need some help - to make a change of some kind because what you're taking isn't working. The longer acting meds may make all the difference. If not you may need a stronger shorter acting med. -

    The whole pain med thing gets me down quite often. I wish I didn't need anything. Then somedays I'm just so thankful that I can get some relief. I'm sick to death of this pain.

    DOXY!! So wonderful having you back! We've missed you so. It's so great to hear you've found some relief. That makes me so happy. Talk about having a tough time - you've sure been through it.
    If I ever need a patch I know I'll have to go to another dr. - my doctor isn't comfortable with the whole pain med thing even though she takes care of me now. I hope I have a long time to go before I need to head in that direction. That's my biggest fear. Where do you go when you reach a point where you can't find relief? That scares the daylights out of me.

    BUT - on a light note- it is NICE to see you again!!

    love to you both,
  5. hermitlady

    hermitlady Member


    It's so good to have you back! I'm so glad you're having success w the patch, I've heard they work quite well. I was worried about you when you were gone, glad it was just your lack of computer that kept you away;)

    You're in So CA, right? I'm in Riverside...where is this wonderful pharmacy? I'd be interested in contacting them if I have any more problems. I have Blue Cross HMO, so there are only certain places I can go of course. I've been going to Rite Aid for about 10 yrs, but like I said I'm changing to a CVS that's further from my house. At least CVS has meds in stock, Sometimes it takes RA a week to order them and fill the rx.


    I see my Dr once a month, he gives me a B12 shot and an rx that's not refillable cuz it's a Class 2 drug...it always has to be an original paper rx. It's Dexedrine ER, I've been taking it for almost 2 months to help w fatigue. It also helps a lot w the brain fog/cognitive problems. I go back on the 20th of Nov to see him. I have a new paper rx to get my next refill of Norco, he gives me a total of 6 refills on the same script. Like I said, I'm taking it to a new pharm this time. I had it filled last month on the 14th, so I figure it could be filled around the 12th...since Oct had 31 days. I try to count and ration my pills when I have months like this, but it's so hard sometimes.

    I guess I could call the ins and ask about their refill policy, I've never checked into that. I know one time when I tried to get the refill a bit early, Rite Aid wouldn't do it even if I offered to pay cash for it. Maybe this time I can just say I'm going out of town and need it a few days early. I hate to lie, but I don't do this on a regular basis, this is only the second time in 2 yrs that I've run out early!

    I told my Dr that several times during the night I wake up hurting. He asked if my legs hurt and I told him they do (they always do)...so he said I'm probably "kicking", meaning having withdrawal symptoms from going too many hrs between doses. That was when he gave me the MS Contin to try, but I don't have any now cuz I didn't really care for it. It is hard to tell if it's the FM or the med leaving my system causing withdrawal symptoms, I hate this. I did definitely feel like I was in withdrawal when I stopped the Percocet, I felt so sick all over!

    I just know that during the day when my dose wears off, suddenly I feel so bad and have to lie down and rest. I'll take my next dose then and wait almost an hour for it to kick in. I usually break the pills up into smaller pieces so they dissolve faster in my stomach, don't know if it really makes a difference tho.

    What are some other long acting meds that I could look into? You girls are so helpful, but I know that it's unfortunately due to your own experiences w pain. It's just such an awful way to live, torturous everyday! I don't think I should keep going to something stronger, cuz that's what I've been gradually doing over the last 2 yrs. I just wish it would last longer so I don't have so many peaks and valleys throughout the day.

    Doxy, I felt that I had gotten my life back when I started w Vicodin...it was amazing how much better it made me feel. That's such an awesome feeling after suffering for so long. I sure hope you keep having the best of luck w the Fent Patch.

    I also have Tramadol, but I don't notice any help at all from that. I've been taking 800mg of Ibuprofen 3x a day for my post op shoulder inflammation too, I'm still very sore from the surgery. Also, last wk he gave me Voltaren in a cream form that you rub on the affected area, it's fairly new. That way, the anti-inflammatory absorbs into the area where you need it, it works on areas where the bone is close to the skin. It does seem to help, but I don't always to use it the 3-4 times a day that I'm supposed to. The ortho surgeon shaved bone in a couple of places on my shoulder. There's an area where the collarbone goes into the shoulder joint that is the most painful, that's where he did the majority of the work. It was arthroscopic, so thank goodness for that. This is the second time I've had this done...now both shoulders have been "fixed".

    Well, my kitten boys are harassing me for their Fancy Feast breakfast. You should see them, they're 4.5 months old and bouncing off the walls! We rescued a pregnant feral cat and she had 6 kittens in June...so of course, we had to keep 2 of them and the momcat. They're my sweeties.

    I'll be back later, thank you both so much...

    xxxoooxxxooo Hermit

  6. Janalynn

    Janalynn New Member

    I would ask your Dr. for a long acting med. If you're tried MS Contin with no relief (tell him) I'm sure he'll suggest Oxycontin.
    I know, I hate going up in dose as well. HATE IT. What do you do though? It's a natural body response. You're not on that strong of a med in comparison. I know it seems and feels like it.

    My legs hurt like hell. All the time. I wake up in the middle of the night with such deep aches I almost cry myself back to sleep. I try to take Tylenol PM in the middle of the night.

    When you go to your pharmacist - ask if they'll run it through to see if your ins. will cover it if it's early - that's what I do.

    Tramadol didn't do squat for me - but it helped in a pinch. When do you see your Doctor again? Is it before or after the 14th? I'd make an appt for before if you can and just be honest. I told my dr., I wake up at 4 am. taking pain meds every 4 hrs only takes me til 4 pm which is my worst time of day! It's a terrible juggling act, trying to get through the day. I feel like I'm waiting for days to go by half the time. What a way to live. So much for savoring each day. Gosh that ticks me off!

    One doctor told me never to wait until I'm in terrible pain to take my meds or I'll always be chasing it. Almost take it preventively in the morning. Tried that. Tried waiting til it's bad, to see if the meds worked better - tried it all, like you have, I'm sure.

    I'm scared to death of the horrific pain I feel sometimes - it's that bad. I tell my husband I just don't understand how someone's legs can hurt so badly without something else being wrong.

    Just remember, you have us.
  7. hermitlady

    hermitlady Member


    My next appt is the 20th, that's for my monthly appt w him. I may just have to do that tho and see if I can get in sooner. I'm going to call tomorrow and check.

    I find myself constantly watching the clock everyday. Not only for when to take my meds, but counting down the hrs until I can go back to sleep for the night. I'm just wishing my life away. Tick, tick, tick,.....when will all of this end??? Horrible way to live, huh?


    Glad you came by, but sorry to hear you're suffering too. Why don't you try increasing your daily intake of Norco first? Oh, what am I saying, like I know anything!!!??? Taking 3-4 a day isn't bad, I haven't taken that little for the last yr! Wish I could, goodness knows I've tried cutting back and haven't been successful.

    Hope you ladies have a good night. I'm in bed with my heating pad and my kitten boys, ahhh.
    See you later...H

  8. Janalynn

    Janalynn New Member

    So glad you joined us! In my (humble) opinion you have many more options available between you have to go to a patch. I am holding off on that for as long as possible as I think after that- I don't know where you go.

    You can always up your dosage of Norco, or switch to a stronger med (percocet) etc. Also if the dose of MS Contin does not help you, I'd call him after a couple of days and tell him. That's what I had to do. My doc tried me on that and it did nothing for me so she switched me to Oxycontin. For some reason and heck if I know why, no doctor has ever had a problem with increasing that dose. Maybe the longer acting meds have less chance of abuse? I don't get the draw to it from the "kids" - maybe because of the way they abuse or use it, using it improperly, who knows. I get absolutely no weird feelings whatsover. I can't even tell I've taken it except like I said a very gradual relief of pain.

    On my last visit to my rheumatologist who I see once every 4 months or so -for more of a second opinion, are we treating me properly- type of visit, he assured me that the meds are pretty safe. The danger is in the Tylenol. There should be no danger to the other major organs. Now of course, we don't know what long term use can do. But at least I didn't feel like I was in immediate danger.

    Like we all know, getting our sleep issues under control is important - so make sure that's being addressed. I don't take sleep meds per se. I take Topamax, which helps my headaches and has helped my sleep I'd say 70%. I also have to take a muscle relaxer as well. If you're taking something that is making you feel too sleepy or unable to function see if you can split it in half or get a lower dose until you get used to it. Sometimes my Soma helps my legs immensely (sometimes it doesn't do squat).

    I know from your posts that you're like me - sick of pills, would rather not take one. Believe me, I know. 3 years ago, I was a girl who took Tylenol. The toll that pain takes on our bodies and our minds is too much.

    It's hard to ask for more relief sometimes. I almost think I need to make a slight change, but I'm nervous to. I've been on the same meds for a year. I'd like to hold off on any changes as long as I can. Life has been more stressful than ever for me which I know contributes to my higher pain levels.

    One thing- remember, there are so many people (here on these boards even) who get no relief whatsoever. That just breaks my heart. If they have the same kind of pain I have, I honestly do not know how they make it through the day. When I think of that, I'm only thankful that I have 'relief" and not complain that I "have" to take pills.

    We're all in this together. I wish we could all rub each other's legs (or wherever else we hurt), better yet, we could all be at the spa together having someone else rub our legs! , then enjoying a pedicure and a glass of wine while wearing comfy white robes. Ahhhh to dream.

    Here's to a good night's sleep!!!
  9. hermitlady

    hermitlady Member

    Just checking in. I've been in bed since yesterday afternoon due to a huge crash of fatigue and weakness. Called my dr, and still waiting for a call back. On days like this, it seems that I should be in the hospital since I feel so bad. Not that they could do anything tho.

    Sometimes it seems I should be hooked up to IVs and monitors cuz I feel like I'm about ready to slip into a coma! Seriously, it's really scary.

    I was going to talk to his nurse about a couple of things and let her know I'll be running out of my Norco a few days early. Also doc needs to know how horrible I'm feeling...waiting to have more adrenal testing done (need more paperwork still). I feel like I may be dead before they figure anything out! Things just take so long to get thru the system of insurance approvals, and then waiting for test results and dr appts. It's crazy.

    How did the rest of your day go grammy? Did you set a world's record for the day's trips to the bathroom? I've been trying to drink a lot of water today, but I wonder if there would be any teas that might help me. I've never tried herbal teas as a remedy before, so I have no clue what I'd need. Any ideas?

    I cannot believe you could have lost all that water weight in one day! Seems like your body would go into shock. Hope you're doing ok....Oh, I almost forgot...what is florinef for? Just curious, haven't heard of that one.

    Well, it's after 6 so I guess the nurse is probably gone for the day. I called twice last wk too and never got a return phone call...so frustrating. That's really my only complaint about this dr, takes forever to get to speak to someone unless you go in for an appt. Oh well, here I am, under the covers...at least I'm cozy and warm.:)

    [This Message was Edited on 11/05/2008]