Hi All,

I was taking tramadol for a year, and my life seemed to just evolve around being inside most of the time , and I had stopped things like swimming etc. I started to really think about this, and looked at the pro and cons of narcotics. I found myself deciding to stop it and go back to Tylenol every four hours. I did this after my rheumy told me about a studying comparing Tylenol to narcotics . Tylenol was more effective with so many less side effects. I found when on the narcotics my head was dull, and I couldn't remember anything. I had less pain, but I had no quality of life. It took me three weeks to go off of it with my doctor's help, and I feel so much better. Do I have more pain, YEAP, but at least I can function, and be participated in life. I was having all this anxiety and it just stopped when I stopped taking them, it was terrible. I am taking more hot baths, and of course my tylenol, and not sleeping as well, but I am free of a drug which was controlling my whole life. I would love too hear from others and their experiences with narcotics.


Take Care,

Janet

the only one i've tried at all was tramadol. and at least at the level i was given it, it really wasn't much better at dulling the pain than tylenol, though to be honest, tylenol was pretty pathetic as a pain reliever as well. neither really did much of anything, but when i started having elevated liver enzymes (actually before, when i started on the zanaflex) decided it was best, for me, to stay away from tylenol, hence the tramadol.

when i was at my worst in a flare, i probably should have been on a short course of something much stronger.

with that said, ice seems like a better pain killer, muscle relaxant, and anti-inflammatory than most things.

and so far, pred knocked back a flare better than anything else i've found to date.

i really flare and then have good spells, so the only time i'd really need a good pain reliever would be when i was so bad that i couldn't do anything anyway. a better pain med than tylenol or tramadol would be nice. and since all i want to do is try to sleep anyway during those days / weeks, it if knocked me out, so much the better. if i had severe pain all the time, of course that would be a different matter all together.

at least i have a doctor now, finally, who i think would give me something if i really needed it. whereas before, i think they really let me suffer in ways that they really shouldn't have. of course if you saw me on my good days, you'd never believe how bad i could get. when you can't even walk from the bed to the bathroom by yourself, without screaming, well, you know.........

the ironic thing is that they wouldn't give me a narcotic for pain that makes one scream, that gives one an ulcer, but when i had a tooth implant done, they prescribed oxycotin without blinking an eye; i was the one who said, due to the LDN to give me tramadol instead, from the recommendations of an ex-pain doc. she thought it would interfere with LDN less.

since i'm on LDN, have to time the drugs so that narcotics and LDN don't interfere with one another. or better yet, some day, a new kind of pain med that works in a unique way.

I wish you luck on your journey. Watch that total Tylenol dose over time and make sure your doc checks your liver function often. Problems can sneak up on you without warning. But it does sound like the narcotic you were taking wasn't the best one for you.

Personally, I'm taking oxycodone 4 times a day (total daily dose 40mg on work days and 30mg on weekends I'm not working) most days and it holds me most of the time. With my pain doc's approval, I can take a 5th dose if I'm having trouble in the middle of the night and unable to get to sleep. (after trying all the other methods to avoid that extra dose--TENS, tizanidine, Voltaren gel, heating pad, etc) Don't think I'll ever be without the narcotics. Enbrel has helped with the morning stiffness and stamina, but not too much with pain. I can live with this.

I am a medical technologist in the laboratory of a major hospital. Narcotics do not mess with my attention span or alertness. I guess I'm lucky. It's worse if my pain is out of control--THAT messes with my ability to do my job.

I have my liver tests done every six weeks with my other meds. I take about 2000mg a day of tylenol. I find most narcotics cause me depression , which I am now told is very common. I would love something else, but I have had so many side effects from drugs, and I am really thinking of clearing my body of drugs. I just don't find they work. I had those days Sue that I couldn't walk to the bathroom, but I seem past that stage of the disease, thank God.I did lots of steroids at that time, but it only gave me maybe a two week improoval. I also had my SI joints injected many times, and my feet injected with steroids once. I now have more pain from the damage that A/S has caused. I don't get so called "flares" I just always have it. You would now know I have A/S because the crook in my neck and the limp from my hips.

Janet

hi janet,

i guess no more flares is a good thing, but more daily constant pain is not of course.

i can see where this could happen. can feel osteo in my knees more and more, have to remember if i squat down, getting up isn't always pretty. and the bone spurs in my neck, well, they ain't gonna get better on their own. the doctor that injected them with cortisone under fluoroscopy (so he could see them) told me at my next visit to talk to one of their surgeons. i won't consider surgery until i have no choice, but its good to know our options. at least my doctors no longer admonish me for my posture, realizing it isn't necessarily my fault, but it is what gives me rib troubles when i flare.

hoping that the more alternative things like the supplements, chiro, and acupuncture can help keep the amount of drugs to a minimum. we'll see, i keep adding in new supplements as it makes sense, and the acupuncture is only a month in. we'll see.

i know what you mean about hating drug side effects. i have a few drugs that don't cause side effects, but if any influence my mental functioning, i agree, what's the point. i've had a few make me really tired or fuzzy headed: celebrex and mobic come to mind. i just couldn't do that. or the flexeril, like a zombie. i guess its a delicate balance between pain management for quality of life and being clear headed for quality of life.

sorry you've had to struggle with the depression from the drugs. but glad that is behind you

and glad the tylenol helps. and the thing i learned about the liver, which you probably already know: if the liver enzymes start going up, if you stop the culprit, the liver is pretty good at healing itself, so long as you catch it at the early stages. when my ALT went up, i was very concerned, but over the last year, it went back down, on its own, even without the vit E or alpha lipoic acid that i just added. and there's always milk thistle too if you need it. so long as we monitor, i think that's the important point, and you're doing that, even more often than i am.

Always glad to hear when fellow AS'er is doing so well and can have quality of life without the use of narcotics. On the other hand it's upsetting when those who really need that help have trouble finding real pain relief. It's all about options and quality of life. Many in their desperation for relief, skip over the OTC pain meds and head straight for the big guns.
I went through 25 years of trying everything on the market and was on vertually every NSAID and finally had to stop it all when these meds started eating my stomach and intestinal track. All those meds made me sick, sleepy, depressed and left me without proper pain relief. Without the Oxycotin and Oxycodone I am on for 6 years now, I would not be able to function at all and probably would have given up years ago. These meds have been a God's send for me and helping me hold on to some quality of life. It took me years to come to terms with the fact that I will be taking these meds for the rest of my life, but knowing I would be bed ridden without them makes taking them easier. I have 0 side effects from these meds and a much better outlook on life. You will probably get a lot of different points of view here but for you and many others, it's great to know you can find enough relief with over the counter pain meds.
Good luck, I hope it continues to work well for you

Cindy

I am with Cindy and Rumble,
I went many years with everything but narcotics until I was bedridden for many more years. I can now function with the Oxycodone with no side effects but a better quality of life. I tried a few until we found that Oxycodone worked the best. I hope you can get by with just the Tylenol. That would be great Janet! At least you know that you have options and that is a great comfort to us who suffer.

I tried tramadol because I thought it would be stronger than the codeine I was taking, but really didn't get on with it. It actually didn't do a lot for pain, gave me withdrawals if I tried to vary the dose, and I think it affected me psychologically as well. unfortunately because I'm not on any regular anti-inflammatory of any kind I do still need something a lot stronger than tylenol so I went back on codeine and it suits me a whole lot better with no noticeable side effects - mentally or physically. If you did find you needed something more than just the tylenol (or if it starts affecting your liver), I'd suggest to try a different narcotic type drug - they don't all have the same effects. While you are coping without that though, I think its wonderful, and long may it last for you.

I think that is wonderful if you can function without narcotics and it seems you are being very responsible about the amount versus liver tests.

I think since I have had this for going on 20 years now that the diswase has progressed to the point where I must have spots that are so damaged thats why I am in pain 24/7. I know my SI joints, hips, right knee, right shoulder, right jaw give me the most trouble and I can not get thru the days without the drugs. I have to take quite a bit just to be able to get up and function in the mornings and then I have to take more at night to help me sleep or I would be in too much pain during the night.

Its wonderful to hear of some that can function with minimal or no narcotics.

Lisa

I started taking Ultram in the late 80's when I started getting symptom of IBD. My GP had me stop taking any ant-inflammatory meds because he thought that they were causing my GI problems. Later, when we learned I had UC, he started giving me Vicoden when the Ultram wasn't enough. I started taking Norco in 2006 when I had my knees replaced. I learned to adjust my pain meds according to how much pain I am in. On a really good day, I can get away with just a few Ultrams. Other days, I might break the Norcos in half. On those really bad times, I might take 5-6 Norcos plus some Ultrams in between. I find that as long as I keep the pain under control, I function so much better. If I am in pain, I just sit in my recliner with ice packs and heating pads. So far, the only time I had a problem was when I started taking Humira, I felt so goo, I forgot to take any pain meds at all. I got very shaky until I figured out that I had to taper off the pain meds. It took just 1/2 a Norco to get me back on track again.

Now I have a referral to see the pain doc. My Rheumy wants me to get shots in my SI.