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WhistleDixie 01-28-2014 09:20 AM

Hello Everyone,

I had my long-anticipated consult with a Pain Management doctor yesterday (Monday 1/27) It went reasonably well, though as expected we both have HEAVY accents, with his being Egyptian and my being SOUTHERN=) We had some issues understanding each other, but nothing we can't work through. I was "happy" to find that I had nothing to prove to him because my pain is well documented (partly due to my OCD) through my medical records and subsequent reports on various treatments. He had no interest in repeating any of the modalities that I have already tried with no success. That, too was well documented, including but not limited to Injections, PT, TENS, Biofeedback, Cognitive Therapy, Psychotherapy (counseling). He seemed "baffled" that I am "still standing" with the extensive problems that I have. He said it was most helpful that I have seen specialists in all fields of expertise pertaining to my pain, to rule out the need for further surgeries and treatments.

Now, we go forward with pain management. There is an IRONY here. I have finally found a doctor who will help me to "manage" my pain through medication. However, as of January 2014 my insurance will not cover medication. Believe me, I'm not complaining, as I realize I am fortunate to have insurance period, in today's environment. It just horrifies me to know that I cannot afford most of the medications that a PMD would prescribe for me.

He has no problem prescribing the Fentanyl patch for me, with my gastric/absorption issues. However, without further research into a generic option (which will still be expensive) I don't feel that I can afford that. I used the patch successfully in 2005-2006, but I had excellent insurance with $25 script co-pay. We discussed that Morphine has helped me, but he says that, too is extremely expensive. He suggests Methadone for not only its similarities to Morphine, but also its steady release once established. I must confess I freaked out (just a teeny bit) because I asked him if that was like the drug on "Breaking Bad". Yea...He thought I was silly, too. He chuckled and said "Funny you think I prescribe that".

He suggests that if I can't afford the patch (I can't :eek:) then let's try the Methadone, starting with 5 mg twice daily with the option to increase if necessary. He wants to try one medication at a time (I agree) so that he can determine it's effectiveness vs. multiple meds causing multiple side effects. He explained that he will work with me until I can achieve an acceptable level of pain relief, by seeing me once per month. WHEN, not IF...say hallelujah...we reach success, he will start seeing me every 3 months. I can certainly do THAT.

I have concerns before filling the Methadone script and starting to take it. I'm hopeful that some of you may be able to share your experience. Is it effective for pain relief? Is it sedating or is it mood-elevating? I cannot cope with sedative effects because my career is demanding that I am alert and on my game at all times. I could benefit from my "mood" being elevated, as these past months of "fighting" for help have really dragged me through the depths of Hell. I take medication for anxiety and depression, but they're not magic pills...I guess I will always battle those demons. I just want to be very selective and careful to avoid any pain medication that may exacerbate my emotional issues. Any thoughts or suggestions?

I am SO VERY GRATEFUL to finally have the opportunity to be treated by a doctor who's at the very least "willing" to try to help me get back some semblance of a quality of life. I have to say that I had let my fears get the best of me, with all that I've read regarding the "new world of PM". He was kind to me and concerned for my suffering=) I want to thank everyone for your prayers and/or encouragement and I will continue to pay it forward.

Whynowthis 01-28-2014 12:57 PM

It's funny you asked about the "Breaking Bad" drug. But that was methamphetamine, NOT methadone. Methadone has a bad rap, but its been a miracle for me. It has worked very well for me, even better than when I was on morphine. I started the methadone because I had no insurance, and I needed something cheap. when I got insurance again, I asked to go back on the morphine. My doctor gave me a rx for morphine for that month, and that month was hell for me. I couldn't believe the difference in the medications, and how much better the methadone managed my pain! Of course meds work differently for everyone, but I am a success story for the methadone!! It DOES make me tired, but I'm on a much higher dose. If you do get tired, you might find that symptom going away as your body gets used to the medication. It is not "mood-elevating". I'm not quite sure what you mean by that, but it wont get you high if that's what you mean. It blocks the opiate receptors so you won't feel high, and if you take other break-thru meds they will work for pain, but probably won't get you high either, it really depends on how much methadone you have in your system. But that's a good thing, because it takes away any craving you might have to get high in the first place. For pain relief, its one of the best in my opinion. I think its a good direction for you. You could at least try it for a month and see what relief you get. Good luck!

WhistleDixie 01-28-2014 02:28 PM

Thank you WNT, for the much-needed reassurance=) Yes, the doctor found the BB comment amusing, too, much to my chagrin. We had a very frank discussion about potential meds, based not only on efficacy, but also affordability as my current insurance w/o prescription coverage is my "new normal". It was yet another wake up call for me on the financial side of things. I remain blessed with the coverage I do have, but it's hard not to be bitter. I digress.

Do you still take Morphine or did you switch back to Methadone for its relief properties? If you can say, how many mgs of Methadone were you taking? Did you remain lethargic and tired even after your initial adjustment period? Was your pain relief substantial enough to compensate for the tiredness? No, no, no...I am not looking for a "high". I was simply asking if this med is a "depressant" or "downer" as I cannot take that chance of spiraling DEEPER into a lifetime of severe depression. I must say I certainly would not mind, though, if the pain relief brought by this drug were to serve as a "mood elevator". Lord knows...untreated pain for decades can drag the happiest person down into the bowels of Hell. I reside there. I NEED help for chronic severe pain, period. I must now, as always, weigh the benefits against the risks of (intolerable) side effects. If depression is one, I MUST run like the wind (if I could actually run=)

The PM doctor was encouraging in that he thinks this may soothe my colon issues as well. The doctor says it will be trial and error, as I know. I now have to focus on the "trial" part, with an open mind. Forgive my cynicism, but I still prefer to hear the experiences of you all who have taken this for pain. Please don't hold back your negative thoughts regarding Methadone because I prefer to be as well-informed as possible.

Again, thank you WNT...I don't have to ask the meaning of your username. I often ask God that same question.

galalena 01-28-2014 06:33 PM

You all know I take methadone. It has nothing to do with breaking bad, which I loved, but people have a very negative reaction to hearing the word methadone. That is just too bad, and typical of our culture that is quick to judge without understanding. And that includes doctors. Well, that is their problem, not mine.

I was a bit confused when my PM doc suggested methadone, but I am not in the position to make demands. I think it is fine. If anything, i think my dosage is a bit too low but i am not going to complain. I was tired in the beginning, but not so much now. People who like oxycodone sometimes say they like the energy it provides. Is that part of the high people want? I have no idea as i have been in too much pain to even think that way. But methadone, while providing pain relief, does not provide an energetic high. I also found that it does not slow up the bowels like other narcotics. At least for me.
There are times when i am still in pain, but often i realize that hey, i have not thought about my pain for a couple hours. My PM doc is super super conservative and i have not had the courage to ask for an increase. Maybe after I see my surgeon in a couple weeks.
As for cost, my goodness, OTC is more expensive. My month script is $17 cash, $7 with insurance. Give it a try.

BB07 01-28-2014 07:34 PM

Hi whistledixie

-proceed with caution-and try and stay as low dose as possible

good luck

tortoisegirl 01-28-2014 07:54 PM

If money was no object, then sure, there are probably better meds to start on. However, I can say I've tried them all and methadone is the only one that works (at reasonable doses at least). Oddly enough its the first long acting pain med I was tried on, and I ended up circling back to it. Everyone is different though.

Methadone does have slightly higher risks and side effects than other meds. Especially at higher doses, its a good idea to have an ECG and sleep study done, to rule out it isn't doing harm. Don't be afraid of the bad rap with it, as when taken as prescribed, it is safe. Folks get in trouble with it when they are looking to get high from it (not possible) and keep taking more, as it builds in the system for several days.

It can also be more sedating than other meds. Given some time, it goes away for a lot of folks. One of the good things is that it is less likely to cause any euphoria, although most of us with chronic pain haven't really ever experienced that with the pain meds. Its the only long acting med a lot of cash pay folks can afford. My high dose prescription at an expensive pharmacy is still under $100/month. I think Fentanyl patches start in the hundreds of dollars a month, but you'd have to check. MS Contin and Fentanyl patches might run about the same price.

Sounds like there is some promise with this doctor. 5mg twice a day is a good starting dose on the Methadone. I'd start it on the weekend and not plan to do anything or drive for a few days, until you know how your body will handle it, as I would do for any new pain med. I do get a lot of sedation from it, but I'm also at a high dose, and have compounding factors.

Especially at first you can get "the nods" feel fine, then start nodding off. It can go away over time, but be very careful if you drive. Its really a calculated risk on any pain med. That said, I do it.

Keep in mind it will take some time for the med to build up in your system, and to find the ideal dose, frequency, and likely breakthrough med. If you have been without any good pain relief though, any improvement will be a big one. Did the doctor have any non-narcotic ideas? Or just that he saw how bad off you were and wanted to get a stronger opiate pain med on board first? So glad he is willing to work with you. Good luck! Best wishes.

PhilliesFan20 01-28-2014 08:24 PM

Whistledixie - I know you have had awful encounters with physicians over the last year, if not longer, so I'm thrilled to read that you have finally found a doctor who seems to "get it!"

I've found methadone to offer me the best pain relief of any the longer lasting medications, and I think I've tried them all (opana, exaglo, fentanyl,and a number of generic variations.). It [I]was[/I] extremely sedating at first. I tended to "nod out" when I was sitting still reading or watching TV. The pain relief was so great I decided to stick with it and was fine after a few weeks. I do occasionally feel fuzzy headed, but can't tell if that's from the methadone, my break-through meds, or age. :-(

gmak 01-28-2014 08:32 PM

Hi dixie. There are some medications that shouldnt be taken concomittantly with methadone & i think several more than with other narcotics. Im not familiar with all of them so if i were you i would be sure to have a consultation with my pharmacist & let him check all of my other medicines just to make sure there was no problem & get a list of them to keep for future reference in case any medicines are added or changed. Im so happy for you that everything went well at the dr appt & some pain relief is in your future!

WhistleDixie 01-28-2014 09:48 PM

Thanks everyone, for your thoughts on Methadone and your encouragement. I'm feeling more positive about starting this new med, in hopes of some long-awaited relief. As for the Fentanyl patch, my gastric anatomy is such that transdermal delivery is most effective for complete absorption. That was the PM doctor's first suggestion, considering my failure to tolerate oral meds long-term. I just can't see how I can afford, since my insurance does not offer prescription coverage (at all) as of January 2014.

This doctor is inundated with volumes of my medical records over a 30 year span. His most recent reports/findings are from 4 GYNOs, 1 GASTRO, I ORTHO, 1 NEURO and 1 URO plus my PCP. It's painfully obvious, no pun intended, that I need PM. I think he can provide that for me by starting at a low dosage of Methadone until we can see how I tolerate it. He actually thinks it can help my chronic colon pain as well. We will discuss either increasing dosage through small increments or perhaps adding a breakthrough med, on as "as needed" basis.

I am happy to hear that this has been an effective medicine for some of my fellow chronic pain sufferers...even those not on a budget. As I said...I will be happy to get relief without added depression.

Again, thank all of y'all for your posts of support. I promise to pay it forward as best I can. Meanwhile, I wish for all of you a restful night with ease of pain=)

Whynowthis 01-28-2014 11:17 PM

No, I do not take the morphine anymore, I switched back to methadone because the morphine just didn't give me the pain relief I needed. It did initially make me very fatigued, but now if I'm being active, I'm fine. If I sit down to watch a movie, forget it. I'll fall asleep! And I never used to fall asleep to movies because I love watching movies. For me the pain relief is definitely worth the fatigue!! I have times where I go for hours forgetting about my pain. I actually feel "normal" for a little while. Also, since you mentioned your colon issues, I remembered something else I found interesting. I've suffered from IBS for years. I was so frustrated I couldn't get relief, as was my family doctor, as was my GI doctor. Since I've been on the methadone, my IBS is GONE!!!! I've had maybe three incidents in 5 years. Before my methadone I would have 3 incidents a DAY at least. It is a miracle it has helped it. But keep in mind it may not do that for everyone. Also, like Gmak stated, there are a lot of medications that interact with methadone. I've had problems where I've had UTI, or sinus infection, and when i go to fill my script at he pharmacy, the pharmacist tells me the meds my family dr wrote for me interact and we've had to call my dr back to find a new med that will work. A little bit of a hassle, but if you are aware going in you can speak with your dr to make sure any meds prescribed won't interact.
Good luck!

WhistleDixie 01-29-2014 09:01 AM

Hello WNT...The fact that you "choose" Methadone as the "better" pain reliever for your needs speaks volumes. I am also happy to hear that it has eased your IBS symptoms. My colon issues have really been "ramped" for the past several days to the point I'm in agony, digestively. It's a tough balance. I am SO VERY DOWN also, wanting only to retreat to bed, close the shutters, and curl into a fetal position. I am definitely going to try the Methadone, as I will get it filled at noon. I'm still afraid that it's going to increase my desire to sleep. I don't think I have enough "fight" left in me to "fight" off the feelings of "RETREAT!"

Since you've taken this for a number of years, can you tell me if you've had to substantially increase your dose over time? Have you experienced weight gain? Also, can you share what type of pain you are treating with Methadone? Thanks=)

LadyBassPlayer 01-29-2014 07:49 PM

Dear Whistle D....
I haven't tried Methadone (but will be seeing a new and more experienced pm soon and doing a med change to get off Opana) so I am reading all of this with great interest. I will definitely ask my new pm about methadone)
But,the main purpose for me posting was just to tell you how happy I am that your initial appointment went so well! I prayed for you, that you would experience acceptance and understanding, as well as expertise, and that you and the new pm would "click". Sounds like that all happened and I am happy and thankful for you.
Best wishes and God bless, and I will read with interest your future posts.

WhistleDixie 01-29-2014 08:35 PM

Hey Lady...Thank you for your prayers. I certainly believe in the power of prayer, though my faith is often tested. How are you feeling tonight?

As for starting Methadone, I still have questions not only about the "fatigue", but the potential for weight gain? I just wish I knew more before having the script filled and beginning this medicine. I've taken low dose Neurontin for about 6 weeks. I'm stopping that because I feel like an inflated balloon. My weight stays steady, but has increased by 10 lbs. in the past 6 weeks=( I won't trade my healthy weight for a medication that causes me to get "fluffy". Vanity? maybe, but I didn't have gastric bypass in 1987 (successful loss/kept off) just to end up heavy again.

A chronic pain sufferer has so much to consider when starting a new med. While pain relief is key, we shouldn't have to sacrifice our self image or sense of self with unwanted side effects. We've lost so much of ourselves through long-suffering already.

I must decide soon to fill the prescription or take it back to him and discuss other options. Meanwhile, I hope you have a restful evening=)

LadyBassPlayer 01-29-2014 09:35 PM

Hi Whistle D,
Thanks so much for the hug and kind words... that really lifted my spirits when I read your post! I'm actually feeling kinda lousy tonight...typical fibro flare up with all-over achy pain, no energy, stiff - you know. I missed going to our small group Bible study which we have 3 out of 4 weeks per month because I just needed to be on the couch. My hubby had to go because he was leading/ facilitating for the last session of a 10 week series. Wow, I really am rambling!
Anyway, I will be interested to know, when you find out, about whether the Methodone causes weight gain and other s/e.
Best wishes, God bless and I look forward to learning more from your posts!

WhistleDixie 01-29-2014 10:26 PM

Sorry you're having a rough time with Fibro...Yes, it's hard when you have to miss BS on Wednesday nights. It's good to have the fellowship, but sometimes we have to take the couch=( No...never think you're rambling. I'm always happy to listen and to offer support. Sleep well and feel better tomorrow!

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