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argy 04-27-2007 07:22 AM

What really works for you????
I've tried so many things that don't work and the PA always wants me to do other things instead of just increasing the pain med methadone which does seem to work best. I've tried neurontin, lyrica, trazadone, accupuncture, pool therapy, zanaflex, robaxin, TENS, am now being started on a sequential stimulator. What is working for other people. How high a methadone dose is every one on? I take 20 - 30 - 20mg. I take B12 and a multi mineral and evening primrose oil when I remember. Also I started Cymbalta and am on 75 of effexor for depression. Thanks.

morgyporgy 04-27-2007 02:43 PM

Re: What really works for you????
i only take locet 10/325 4x a day and cymbalta 30 mg. 1 a day. this actually works okay for me but have been on this dose for awhile. but right now i have the flu and the pain med makes me reallllly dizzy. so i have only taken 3 in the last 2 days. :confused: sry i couldn't really help you.

Rrector 04-27-2007 04:32 PM

Re: What really works for you????
I have been taking Methadone for four+ years due to chronic pain. The script is written 60 mg TID (180 mg per day), but with my doctors ok, I take it in smaller doses throughout the day. I find this works better, as I have nothing for BT pain.

I also take Lexapro, Cozaar, Nexium, Zocor, Klonopin, Elavil, and Ambien at night. In addition I take injectable Vitamin B-12 (1 cc) once a month. This is due to gastric surgery I had in 1975 for a perforated Duodenal ulcer. My systems no longer breaks down B-12 naturally or in pill form.

I am on Social Security Disability due to my Chronic Pain and Emphysema. I most likely will not ever go back to work.

Shoreline 04-30-2007 12:09 AM

Re: What really works for you????
Hi Agy, I doubt there is anyone on this forum that just uses opiates and nothing else. The reason why they keep trying other modalities and methods is so that you only method of dealing with pain isn't opiates. What happens in 4 months when you start developing tolerance, Just increase your dose because it gaurentees more relief. What hapenes whe you hit your own ceiling and can't tolerate the side effects of an increase but no longer get relief if you have nothing else to supplement or fall back on.

Unless your terminal, there aren't many docs that can use opiates alone and expect to keep their licence. They all want to find something that adds to the opiates, even if it's only an additional 5% relief. Whether it's self hypnosis,Bio feedback, Guided imagry, Yoga breathing techniques, nerve blocks, trigger point injections, myofacial release, nerve ablation, Botox, Robaxin or lidocaine infusions or any adjunct method of pain relief. Something else will add to the relief opiates give. Not wanting to try anything else or feeling it's not worth trying can be construed by a doc as someone that must not be in that much pain if they aren't willing to try anything and everything to relive that pain.

Even when you have tried everything there is to try, and trust me you haven't. You still have to learn to deal with some degree of pain. Unless your terminal they aren't going to increase your dose everytime you become the slightest bit tolerant and can no longer report low pain scores.

When they implant a morphine pump, a trial or pump is considered succesful if it relieves 50% of your pain. With nothing else to supplement that, 50% is a tough number to live another 40 years with.

I don't think I have met anyone in the last 15 years that takes the exact same dose or combination of meds and uses the exact same adjunct modalities. What works for me doesn't gaurentee relief for anyone else. My dose may kill you and not touch Directors pain or vice versa.I couldn't tolerate more than 120 mgs of meth per day, so what good does it do to know someone out there can take 3 times that? What I take or anyone else takes really has no bearing on what you should try or take.

Alot has to do with expectations. If you expect complete pain relief because you know there are people taking a higher dose or there is a stronger med out there you haven't taken, you will run into the same wall where the meds become more disabling than whatever reason your taking them for. Your taking 6-8 times what Morgy is taking and 1/3 of what Director is taking. What insight does that really give you? Those numbers don't even mean they are getting better relief or less relief. It's what tjey can tolerate, what their docs are willing to prescribe and their all using the adjunct meds that your tired of messing with. There is no majic dose or med that works for everyone.

I've known Director long enough to know it took years to get to the point he's at and he's been around long enough to watch the last 5-7 years of my struggle with chronic pain and that's only half the time I have spent trying to manage it and a fraction of the time Director has been involved in PM. He knows I've been through 3 month long PM boot camps and tried every method I mentioned and the ones you mentioned. The purpose behind trying everything available is to see what works for you, if ity helps, stick withit, if it doesn't you move on to the next thing.

Your PA isn't doing anything that anyone elses doc hasn't tried or done. These are the basics and you should thank god you didn't have to try 30 different methods that didn't work before you were given anything at all for pain. You didn't even mention interventional procedures, surgery or psychological methods to cope with pain that opiates simply can't manage.

There is no secret handshake, short cut or gaurentee that if you take X it will relieve 90% of your pain and still leave you functional, able to pee without a catheter, Function without Viagra, stay awake without amphetamines or walk without bouncing into walls.. It's all trial and error and the meds themself can become more disabling and impairing that the the reason your taking them. That's why docs want to try other methods aside from the gaurenteed relief your assuming can be found if your doc would just give you a higher dose or stronger meds.

Good luck, Dave

Fabrashamx 04-30-2007 11:10 AM

Re: What really works for you????
Hi Argy,

Everyone gave you really good advice, And Shore in particular defined our situation really accurately.
Almost no one cares for the med I take for base, some people are pretty outspoken against it, but it has worked for me for over a decade. although without all my other meds and 'tricks' and exercise, that wouldnt work very well either.
I take tramadol, lortab 7.5, baclofen, lexipro, and 800 mg ibuprophin. I also walk a mile a day and use heat / cold and relaxation techniques.
Like Dave said, I dont think any one of us has ever found a single pill or modality that takes away all or even most of our pain, the trick is to tuck away each new piece of knowledge about what works for you, even a little, and then find a way to combine them all.
Good luck to you and I look forward to reading more of your posts.
Your Friend, Fabby :wave:

argy 04-30-2007 03:24 PM

Re: What really works for you????
thanks guys. well, I didn't mention the 3 back surgeries and 9 epidurals and prednisone 60mg daily. I did try the sequential stimulation and that made me feel worse. I feel as though everything sets off my nerves that is supposed to calm down my nerves. I don't expect to be pain free, but I have been 6 to 8 daily and am up 4-5 times a night. My goal is 4 and waking up only twice. I also started bruising badly with Celebrex even though my bleeding times were normal. :confused:

Shoreline 04-30-2007 10:34 PM

Re: What really works for you????
Hey Argy, Nerve pain is actually the toughest pain to manage, It;s the least resppnsiveto opiates and that's why they keep trying meds from the anti seizure class and meds from anti depressant class.

As far as sleep goes, That's even tougher, I can count on one hand the number of times I have slept through the night since my last of 3 back surgeries in 99. Methadone does have some unique properties that makes it beter suited fornerve pain as far as opiates g, but you can also get those same propertiies from meds Like nemanda and dextromathopahan. It really is trial and error and finding what works best for each person. I have a pump after reaching my limit as far as tolerable side efects with orals, but even with a pump, there are limits as far as tolerable side effects. Spinal cord stims may alsobe worth investigatbg if you hae a lot of nerve pain, but Like I said, what works for one doesn't always work for another and even though someone taking 4 times what you take may only get half the relief you get.

The one thing that I think does hold true for most is trying to stay as active as possible, granted you need to have some level of pain control to do this, but sitting around on the couch and feeling useless is far worse than trying to stay as active as you can and dealing with pain you would experience eanyway. If your going to hurt one way or the other, knowing your doing everything you can do to improve your situation makes coping with pain and the loss of abilty to do what most take for granted easier to deal with.

Keep trying anything that may provide some relief, the more tools you have that add to what opiates can do, the better off you will be.
Take care, Dave

argy 05-01-2007 06:12 AM

Re: What really works for you????
Thanks everyone. I'll keep you posted.

mudbone 05-01-2007 05:33 PM

Re: What really works for you????
I just wanted to add a bit that helps me. I fully agree that you have to push and motivate yourself to try and stretch and exerscice. Even walk a bit. Start out low and slow and try to work yourself up a few more minutes, or one more block of walk. You will find that after a while you are better off than just sitting on the couch. Now I'm sure everyone says -yea but then I pay dearly for doing that. Here is my little helper. My TENS unit. I dont know really how this works, but after a day of my job or just doing things that really make me pay, I use my tens at bedtime and it really helps relax me and I do feel better the next day. Even if I am really hurting, I crank that thing up on high and it sort of hides some of my pain. I mean I feel the tens electricity so I sort of put the knife pain in my back in the shadows so to speak. Just a thought that helps me..Mud

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