Long term painkiller use
 

I know this is something I should discuss with my doctor but first I wanted to see what other people with chronic pain think about using painkillers long term.

After getting nerve damage from surgery I have been struggling to keep working but the only thing that gets me though the day is either taking tramadol or hydromorphone multiple times a day. I have tried going off the meds but when I do the pain is so severe that I end up crying at work and not being able to get everything done. I have done PT, tried epidurals, topical cream, CBD/THC, TENS, medication specifically for nerve pain and nothing helps. The painkillers don't even fully get rid of the pain, they just make it bearable and keep me from being miserable.

I don't want to be on drugs for the rest of my life but I feel like my only options are to be on meds or be miserable. Is it safe to take these medications for long term pain management? Does anyone on here have to do this and how has it worked out for you?

i took oxycodone for something called post stroke pain for a few years. it turned out that for the pain i had Neurontin was better. i guess you've tried Neurontin lyrica etc. The thing with the opoids is that it will take more and more over the years to get the same relief in most cases. speak with your doctor about your concerns and also there will be others to answer your question with more knowledge than me on this board. i''m not sure about long term effects on kidneyes, liver etc. others will know good luck.

I wonder if a SCS or pain pump might be able to help with coverage for those areas.
Might be worth asking about.

I have been on pain medication, most of the time, for over 10 years. I am very concerned also and twice I have gotten off all my meds but ended up going back on them both times. I find that I just continually cycle around with all different medications and modalities. I too deal with neuropathy, amongst other pain issues and honestly have found that anything that can help with inflammation benefits me the most. The longest time I was off pain medication was 2.5 yrs. I had done a 3 week program at a holistic type health center that put us on an all raw vegan organic diet, we drank only veg juices and wheatgrass juice and there were many modalities/treatments we used, the most successful for me being an H-wave machine for neuropathy and pain, colonics and various kinds of massages.They believe a person should keep their body in an alkaline state rather than acidic and you accomplish that by diet. I did live this very extreme diet for over 2 yrs but found it was a full time job because I grew so many sprouts and wheatgrass myself and in the winter, it is hard not to have any warm food and never have any type of sugar or wine. I fell off the diet when a family member got ill and I had to travel to lend a hand. I still do it from time to time but find it difficult to do 24/7.

I did ask my pain doc this question and he said the stress on my body if I did NOT take pain meds for chronic pain, he felt would be worse than long term medication use. He said as long as I dealt with issues like constipation and had liver tests, regular physicals, etc. Although he has always supported me when I try to take a medication "holiday".

I also asked him about driving while taking narcotics and he said it was more dangerous to drive in alot of pain. He does however have me refrain from driving every time I start a new med until I am completely accommodated to any side effects.

I did learn, when I was on a very high dose of OxyContin that our brains stopped producing endorphins when we take opiates and that is why it is often hard to get off pain meds....it takes awhile for our bodies to resume making them so the pain more intense until they kick back in and why our pain is so bad when we first stop all pain meds.

I am sorry your pain is so bad it makes you cry. My advice is to just keep reading and researching and seeking out different doctors and modalities. don't just rely on only medicine, try every modality and treatment you can because everyone is different. I tried Hypnosis for pain, Ayervedic, medical type massages, Botox, fentanyl patch, lidocaine patch, accupuncture, cupping, vibracussor massage, meditation, chiropractic, reiki, Thai massage, magnetic therapy, trigger point injections, hyperbaric oxygen treatments, IV glutathione, B12 injections, IV Vit C and mountains of various vitamins and supplements, teas and potions.
Don't give up. Keep up hope because sometimes it takes your own personal "cocktail" of meds and modalities to get relief and it does not sound like you are getting much pain relief. Maybe try changing doctors if you are not getting relief. Definitely use a doc who specializes in pain mgmt.

I wish you the best and hope you find relief.
Take care, Diandra

Hi Diandra, I found your post very interesting. For the past seven years (today is my anniversary :( ), I have been living with terrible pain (TBI, incomplete spinal cord injury, herniated discs, twist injury, etc...) from an MVA. For the first couple of years, I took pain meds, but I developed an ulcer and found they made my foggy brain even foggier.

I came off the meds and have used my unnaturally high pain threshold (along with massage, tens, ice, acupuncture, lymphatic drainage) to battle through.

Sadly, my spine is continuing to deteriorate and the agony is reaching the point where it is overwhelming me. Your post made me think that the price of NOT taking the meds might be worse for my general health than the side effects.

What still concerns me is my PT's warning about "rebound effect" for patients with chronic, lifelong pain. I'd appreciate anything folks can do to help educate me about rebound.

Sorry to hear your spine is getting worse, I know that is difficult to deal with.

While I hate being on medication I have been having the same concerns about going off the meds. From what my doctors have told me and from the medical literature I have read being inactive for long periods of time seems to be one of the worst things for back pain. With my condition no matter what I do I am in pain but I have noticed that when I am able to take walks and do gentle yoga the pain is more bearable. But if the pain is too bad then I'm afraid to exercise. It's frustrating because I feel like I never know what will help me or what will hurt me at any given point.

Thank you so much for sharing your experience, that is very helpful. I just got back from having my 2nd epidural injection which so far has only given me slight pain relief but I was told it could take up to a week for the steroid to be fully effective. I'm not very confidant that the epidural will be effective but my doctor wants me to try one more before giving up on it.

I have found massage to be very helpful but that's not something my insurance will pay for and for $80 a session it's not something I can afford to do even on a monthly basis. I've also spent a good deal on various supplements that haven't seemed to do much at this point but there are still a few I haven't tried that may help.

I am interesting in looking into the diet you mentioned. I already have a very restricted diet due to multiple food allergies so I'm used to making all of my own meals & basically only being able to eat salads at restaurants.

You might find Dr. Tennant's publications & articles informative, particularly The Intractable Pain Patient's Handbook for Survival

He also has many articles on Practical Pain Management

Practical Pain Management Articles by Forest Tennant, MD, DrPH

Doc

for what's it's worth with my post stroke pain and neuropathy from tbi the opioids didn't work as well as the gabapentin does. I guess that makes sense since these injuries caused exaggerated pain responses from damaged neurotransmitters whereas naturally occurring pain would respond to opioids. or I could be wrong lol

Sorry it took me so long to answer. I hope by now the ESI has given you some relief.

To answer your query...I attended a 3 week program at the Hippocrates Health Institute in West Palm Beach Florida and they are the ones who introduced me to the all raw, vegan diet and organic food as you can find and afford it but it was also a total lifestyle change meaning facing the stresses in your life and dealing with them. If you are ill and live in a terrible marriage, that is stress on your system will make it difficult to heal.... or have a job you hate going to every day. You have to address emotional and physical issues. They helped me to do that.. They have written raw vegan cookbooks ...by Anna Marie Clement who is codirector with her husband Brian. I find their cookbooks recipes a bit complex but I still do raw veg juicing every day and you can find easier raw veg recipes all over the Internet. Also, don't kill yourself with raw veg...if you just eat vegetarian along with raw veg and stay away from sugars, booze, breads/pastries/bad carbs and eat good proteins and keep very well hydrated...you are doing well. It can be tough to feel unwell and also shop and cook well but it is doable.

I did this awhile ago, in 2004 and again in 2006. They have now gotten too expensive for me to afford and honestly, as effective as they are, there are some issues of how they run the place I am not comfortable with but in general, the good outweighs the bad. I was desperately searching for answers and when I found them I went out of pure desperation because they are expensive but my husband said, you are suffering so much and no doc seems to help, so what if it is expensive, if it helps it will be worth it, so I went.

You can do the diet yourself and you can tend to your emotional and spiritual needs yourself as well. My suggestion is to find a good naturopath or the best is, an MD who also specializes in homeopathy or naturopathic methods. I was lucky enough to find an MD who got frustrated with treating sick people and instead wanted to keep them healthy so he left his regular practice and was much like an Andrew Weil type doc, integrated medicine.

Please update us with how you are doing.
Be well....it may sound corny but do one joyful thing for yourself everyday, no matter how tiny. If you love flowers, treat yourself to a bouquet at the supermarket or farmers market, call someone you miss and love and have not talked to for awhile, play music from your youth that made you happy, reread a favorite poem....Cheers Diandra

Hi KatLC,

Its so unfair isn't it!
I found that Lyrica had the biggest effect on pain, its designed to help with nerve pain (although I guess all pain is nerve pain) but you know what I mean! There is also Gabapentin which is meant to be very good.
I recently phoned up and cancelled my SCS trial as I wasn't happy with what I was reading, it can cause many problems itself.

My pain is worse in winter and so I slowly reduce my meds in summer to about half and then I get a better pain relief from them when I slowly increase them in autumn/winter.
Doctors will advise but at the end of the day, you know your pain better than they do, I find its so hard to properly explain how the pain feels.

I do hope you find something or someway to help!

Thank you!
 

I just stumbled upon this and it gave me a bit of insight. I have been struggling with pain and surgeries for 6 years and not sure about what medication path to take. It seems like doctors don't fully grasp your pain or emotional state your in. Unfortunately I've been having to go to the er for pain relief and get treated like a drug addict. I feel ashamed and embarrassed. Thank you for all of the input in this thread. I really appreciated it.

Heather,
I am sorry you have to go the ER for pain relief because unfortunately, they do treat you like a drug addict. Like everything else in the pain control universe, a small minority who abuse the system make it bad for all of us.

I was in the ER once with a family member and the person in the next bed was screaming and screaming non-stop at the top of his lungs. When I asked a nurse why the patient was not being tended to, he said that this individual was a known drug seeker who makes the round of ER's weekly to get drugs and they were just waiting for the police to come get him. She told me that people come in screaming non stop thinking the staff will do anything to shut them up.

I am glad you learned from the thread, it is a good one. I hope your circumstances change so you can see a doc who understands because they are out there. Try http://www.partnersagainstpain.com/ and look under finding pain care.
Diandra

Thanks to every contributor to this thread.
Lots of helpful information here.

I had not heard of the H-Wave machine before. sounds very interesting and will be asking my doctor about this machine.

With Gratitude.
DejaVu

I learned about the H-wave machine while at Hippocrates Health Institute...it was part of their treatment protocol for everyone a few times a week, not sure if they still use it.

Anyway, I bought one, which at the time was over $2000 but, I had gotten off all my pain meds while in the program. At the time they also had a trial period.

It looks like a TENS unit and they teach you how to use it and I did use it daily for over 2 yrs. Honestly, if I had to to do it over, I am not sure I would have spent the money because its effectiveness has seemed to peter out, or perhaps my enthusiasm has.

It seems they market more to sports teams and PTs. It was effective but I think it works best in conjunction with all the other protocols utilized while at HHI. If you have all the money in the world, buy it but, If you want to try it out first , I would contact the company and ask which practitioners have they sold to in your area. You really need someone to teach you how to use it.
My best, D,