How often is too often to use pain meds?

[Wolf]

I am nearly a year into this dreadful illness. Though I go to PT, do stretching and try my best to relax, I have yet to find a way to create a sustainable recovery, meaning, I have good days and bad days, good weeks and bad weeks. My concern and cause for worry is that I have begun to rely on pain meds on a daily basis. On a low pain day it may be 1-2 ultrams. On a bad day it may be a Xanax or a vicodin. My great fear besides being in pain the rest of my life is having to be on pain meds the rest of my life. I know all the literature tells suferers to find a way to get off the drugs and focus on PT and relaxation, but being in constant pain and trying to go to work and raise two kids is simply unbearable. Though I hate that many of the hours I have pain-free are because of a drug, it's better than having none of those hours at all. What are other sufferers feelings about pain meds and their help or hinderance? Thanks.

[scotsman]

I understand what you mean. I'd rather be completely off pain medication but without it my quality of life is too low.

I'm on 4 (200mg) ultram per day - though I do have the odd day when I can get by on 100mg. Initially, say first 12 months or so, I only took 1 (50mg) a day and tried to battle through the pain.

The way I'm looking at it is that the pain medication makes my life workable, and I'm still aggressively attacking the illness with relaxation and physiotherepy/triggerpoint work. Over time (and I'm still ever so slowly improving) I hope to go down to 150mg daily, then down to 100mgs, etc and taper it to nothing.

Lots of people are on long term medication and many drugs have worse side effects than ultram has (which is pretty mild if any).

My advice to you would be to relax about it, accept that for where you are now that pain medication is needed and be positive that in a number of days/weeks/months or years you'll not need them.

Richard.

[latte]

I know how you feel. My doctor gave me tylenol with codeine in very small, highly regulated dosages. He reluctantly renewed by subscription a few times when my chronic prostatitis / chronic pelvic pain syndrome was bad and codeine/ultram are very effective and safe means of reducing the pain. Luckily, after PT and doing Dr. Wise's protocol over time I have been able to live a full life with no pain meds. After about three years and doing the SP I got better. I think time is also on our side, over time I think we do get better. I still do stretching which alleviates the bad pain almost instantly some days. Good luck and know that it will get better.

[Wolf]

Thank you guys so much for your insights. Just having one of those bad weekends. Last weekend I felt great. This one, not so good. Stress is usually what does me in.

[latte]

I have tried to be aware of what triggers the pain from the onset. I can directly relate the pain to stress. For instance, last week I had to go to Orlando for a trade show. Two days before the trip my butt was killing me and on the plane ride there I could hardly sit but once I got there I was pretty much pain free. Saturday I had to go a wedding attended by relatives I hardly knew and put on that smiling face. My butt was killing me again until I went out and played golf. Distractions really help me, that's why I go out on my own away from everyone and go something relaxing. For me, that's golf.

[kenn101]

I am useing oxcodone 20-140mg and oxycontin 20-40mg daily for pain relief, but like Scotman I would rather not use any but it is not an option at this time ( I am not looking forward to the withdraw symtoms again but it is just a fact of life). My GP has been really good about prescribing pain meds since my last cystosopy and hydrodistention as he was my anesthetist and found out how much pain I am in. My pain is bladder related though, like latte my pain is worsened by somethings like stress of acidic food and caffeine and carbonated beverages. As for your question how much is too much answer mine do you just relieve pain or do you feel all spaced out and very happy, if you anwered yes to the latter you are taking too much, I do not know what the limit for ultram, Xanax or vicodin, in looking it up on the web I found out the the limit for oxycodone is 510 mg in a 48 hour period ( please do your own research because I cannot guarantee that the site I looked on is 100 percent reliable)

[CppsDad]

I think this group as a whole tends to feel guilty about a lot of things. I feel tremendous guilt when I take my Xanax (for anxiety). I feel guilt when I have to take Vicodin. I feel guilt when I can't play with my daughter, or drive to a wedding 4 hours away on a bad pain weekend. I don't think I'm alone with this. It's one of the side effects of our condition. But you have to do what you have to do. If it means taking pain medications, take them. I took 1800mg of Ibuprofen a day for 18 months (I'm paying for it now with gastrointenstinal issues), and I took Vicodin for a few months (don't take it much now). I took a Xanax a day for 3-6 months, and now am down to much much less (1 per week or less - I DID go almost 3 months without one!).

The thing that got my through taking the medications was the other stuff I did to get off of it. For example, if I took Vicodin, I focussed on doing my stretching, PT, and relaxation for that day. When I take Xanax, I make sure I re-read my anxiety booklets and do deep breathing. If I at least try to do the things I need to do to stay off of them, I don't feel so guilty when I have to take them.

Keep at it. You will get better one of these days. I'm not near where I want to be, but compared to a year ago, I'd take it without hesitation.

Since you have been doing many of the things we all recommend, and still aren't getting better, would you mind posting your regimen in full detail so we can see what you are trying? Perhaps there's more we can suggest? Or holes in your treatment?

Mike

[Wolf]

Mike,
Reading your response was like reading my own life. Amazing. The best thing about this website is knowing I am not alone in this terrible condition. I agree. Guilt is a killer. The guilt I feel over not getting to be the husband and father I once was is the hardest and something I am dealing with in therapy. I think the struggle I am having now is literally going from a week of feeling better to a week of feeling worse. The unpredictable nature of the illness just throws me for a constant loop.
As to your question about my daily approach to getting better, it basically goes like this. Each day I do my stretching (sometimes in the morning, I have kids, so mornings are busy, but mostly stretching at night). These are stretches from my PT and from the Stanford/Wise-Anderson Protocol. I also try to walk each day which is the one exercise that makes me feel good (except on a REALLY bad day, then walking feels shitty). Besides daily stretching, I go to PT once a week (it's all I can afford) where we alternate between internal and external trigger point work. I have just begun to work with the Theracane at home which has been interesting to say the least. I try to find time to do my relaxation exercises but this is the most difficult to find time to do. I know I need to work on this more. Even though I can get bad flare ups on mellow days, my worst days are days when I am stressed, plain and simple. As for my approach to dealing with pain, as I mentioned before, I alternate between ultram on most days (from 2-4 tabs), Xanax on stress days (.5) and vicodin on really bad days (mostly at night because it makes me sleepy). I have tried a myriad of other drugs, from Elavil to zanaflex, none of which helped my pain. Talk therapy has helped a great deal. So does finding quiet time during the day. To be honest, sometimes the best I feel is just lying in bed watching TV with my wife. Sitting for long periods of time of course sucks. Ejaculation can sometimes lead to wicked pain afterwards for a few days. And urination usually leaves me with some stinging at the tip and pain in the butt. Though my main symptom when this ghastly thing started was frequency, that has amazingly gone away. Now it's all about pain, most of which is centered in my butt and penis tip.

Well, there's my story. I do appreciate all the insights I have gotten on this site. God knows my doctors know nothing.

Thanks,
Steven

[CppsDad]

I don't know how much you are paying for PT, but it sounds like at some point you need to get your wife to do it for you so you don't go broke paying for this condition. That alone can lead to more guilt, anxiety, and angry feelings.

You are doing all the right things. I really hope you can find SOME improvement at some point. Have you ever switched PTs? Do you feel any sort of feedback during the PT session? Have you ever done internal work on yourself (you can usually go slower and be more responsive to your own needs).

Mike

[LightningTree]

Great advice, all throughout this thread, CppsDad.

I know exactly what you mean.

Wolf, keep in mind that on the road to recovery you will have good and bad times. It cycles. You know you are making progress if you can think back 6 months and recognize that the cycles are getting longer. Anyway, this is the advice my brother and mother gave me. I'm not making this up. Everyone in my family have noticed that over 2 years, the pain-free cycles get longer and longer. I think they are right. When you cycles get long enough, and pain flare-up short enough, the condition is no longer a burden and merely becomes an annnoyance. That is a form of victory. I'm there for now.

I have a good feeling about your outcome, Wolf, because the signs are there. (1) Walking makes you feel better, (2) You pain cycles, etc. (I know all about the really bad days when walking doesn't help.)

I am doing great, now, but this last weekend my in-laws converged on my house for a surprise baby shower for my wife's sister. I told myself it would be fun and was really looking forward to seeing every one. Despite this, I had pain while they were in town, which went away two days after they left.

I have to admit that some of the inducing stress is beyond
(1) my ability to directly sense
(2) my ability to immediately control

Learning to control our reaction to that stress, even to feel it, is VERY hard and a long term project (years and years)

So I SHOULD have taken a Klonopin or taken a nap while they were in town and the pain had already started. But I felt GUILTY about not being able to control the pain that implied underlying stress even though I wanted to see them.

Bottom line, in hindsight, is that I should have taken a nap or the anti-anxiety med as an immediate life-quality improver, and then continued to work on the LONG TERM things that I can do to make a difference, stretching, relaxation, etc. Just as Mike said.

I advise not overdoing the meds only because it keeps the sufferer from assuming that the pill is the cure. That assumption can keep people from ever getting around to the necessary physical therapy, stretching, relaxation, life changes, communication changes, attitude adjustments, environmental changes, etc.

I think CppsDad, you Wolf, and me all agree about that and so we should not feel guilty applying our meds judiciously.

Wish I had seen this thread before the in-laws showed up!

[webslave]

I have to admit that some of the inducing stress is beyond
(1) my ability to directly sense
(2) my ability to immediately control

Learning to control our reaction to that stress, even to feel it, is VERY hard and a long term project (years and years)

I'd go further and say that for some (or maybe many!) of us, effective self-control of stress is impossible, and that the best thing we can do is structure our lives so that we are not exposed as much to stress-inducing situations in the first place. You know, hundreds of years ago, a very quiet, simple, low stress lifestyle was very easy to achieve, in fact it was almost the norm. Nowadays, however, we are expected to be sociable and available 24 hours with cell phones buzzing all the time, a million niggling financial pressures, heavy traffic, crowded cities, soulless jobs, mind-numbing commercial-infested television and high density suburban living. It's a nightmare! It amazes me that more people do not have stress-induced illnesses ... or maybe they do.

[MastCells]

Good post, Mark. :thumbup: