Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Pain Meds

Seems like a lot of you folks are on regular pain meds. I'm not, but today I'm wondering if I might feel better if I had something for days like today. I think I've gotten used to pain and modified my activity to deal with it. That means I don't do much. Maybe I'd be able to get more done. I have used hydrocodone, but since I'm prone to constipation, I'm not keen on having to deal with that. Ugh, I feel so incoherent and fatigued. Not sure that pain relief would remedy that or not.

Micki,
I have used the big guns a few times, prednizone taper..
but cymbalta lets me deal with it. Unless it is a bigggie, then I go in....
you might give anti-depressants a try, worked for me

for various reasons, mostly i think just the philosophies of the doctors i've had, they've wanted to avoid "pain killers" if possible. with that said, other things do help my pain, a few things have been failures.

1. muscle relaxant (zanaflex): a lot of my "pain" is actually muscle spasms, so taking this really helps. mostly at night before bed because it does lower my blood pressure and makes me drowsy for about an hour or so. but if i need to take it in the day time, then i just time it knowing i'll be drowsy about 45 minutes after i take it and then for about an hour.

2. topical "nsaids" between the flector patches for my SI joint that i wear over my SI joint 24/7 now, since april, just got tired of it being in so much pain, and it works so great i realize i was supposed to change it about 3 hours ago, so as soon as i finish this.......still have some cranky SI days, but nothing like before. my SI had gotten to a point where only cortisone shots were doing the trick, and i didn't want that to start becoming a habit. but these flector patches seem to work amazingly well, so long as i religiously change them every ~12 hours and keep one one almost constantly. we'll see how long this works. and so far, no discernible side effects. and of course it doesn't address the rest of my body.

3. so for the rest of my body. if something is especially inflamed, i rub a little bit of topical nsaid creme on it, KIP gel is the only thing i've found to be strong enough. the voltaren creme was kind of like using hand lotion in its effectiveness. but the triple nsaid KIP really seems to do the trick.

4. since i've been on LDN, i seem to have less pain.

5. since i've been on the LDN and using both the flector patches and KIP gel, i've found the need to take out an ice pack to be less and less often, but its still a nice option when i need it.

6. heat also helps muscle spasms, but only while the heat is being used, ice seems to have a longer memory. but a nice warm bath is good when i just ache all over. or a nice hot shower to start my day when i wake so stiff and sore. or a heating pad on my back set to low while i watch tv or read (usually with ice on my SI); the cold and heat seem to balance one another out

so for me, its not so much pain killers as antiinflammatories and muscle relaxants to try to stop why the pain is there in the first place. and if i were on a better antiinflammatory, that would solve a lot of the issues.

the things i've failed on:

1. i can't take nsaids due to their side effects. same applies to the cox2 inhibitors for me.

2. i can't take narcotics or even tramadol while on the LDN.

3. i tried lyrica. did nothing for my pain, but did give me a nice migraine!

I'm on 80mg of Prozac, so I think I have the anti depressant angle handled. I can't take NSAIDs or I'd pop a few ibuprofen when I have problems. I haven't had a pred taper since my knees swelled way up. But I'm on pred daily. I know my doc is of the mindset that pain comes from inflammation, so get the inflammation down and the pain will go away. My rheumie has been working with me for 14 months and today I would say I've felt worse, but I am definitely not back to "normal".

Micki,

I've been on the prednisone taper as few times starting at 60 mg for ulcerative colitis treatment. Those made me sort of manic, but I got so much heavy yard work done! When I started seeing my rheumy she put me on 10 mg prednisone/day and 50 mg tramadol 3 times/day. This really helped and I didn't feel too bad. So far I no longer need pain pills.

John

My current cocktail is cymbalta daily,shich has substituted for lexapro+doxepin+oxycodone+codiene. Added to the cymbalta I take cyclobenzaprine for severe muscle spasms and clonezapam for starting spasms. I find that if I can catch the spasm in time with 1/2 of a .5mg clonazepam I can usually avoid the cyclo. Good luck to you!

I'm one of those on daily pain management regieme. This was a last resort after 30 years of NSAIDS destroying my digestive system. I was not diagnosed with AS until 25 years of damage had been done and I was already out of options. I would be bed ridden if my docs hadn't talk me into starting regular pain meds 5 years ago. I thank God every day that they convinced me this was the way to go for me. I am currently on 20 mg Oxycotin 3 Xs a day and 5 mg Oxycodone for breakthrough. I consider myself extremely lucky that I have no side effects what so ever from these meds and just curve the constipation with Glycolax every night. I am also on a night cocktail that works wonders for me, 350mg Soma and 50mg Trazadone. For 20 years I never slept more than 4 hours a night and now I am sleeping 7 or 8, what a blessing. Tried the Cymbalta for a year, wasn't helping so I threw that away. I have weeded out a lot of the meds that don't help anymore so I pretty much stick to my pain management and night time stuff. The decision for permanent pain management is tough and not to be rushed into but you and your docs will know when it's time to discuss it.
Cindy

mom2many

I have been on hydrocodone 7.5 325's/6 a day for over a year. I was on a lesser dose prior but had to increase the dosage to get pain levels under control. I seem to function better at this dose but still expierence alot of pain throughout the day, guess that's just how it goes. Otherwise I have trouble walking and will start to shuffle my feet and trip over things. With painkillers I am able to get through a day. I would like nothing more than not having to take them but that has been tried several times. Even with them if I do too much physically I end up paying for it. Work can be really difficult, especially at the end of a 10-12 hour day. Weekends are better pain wise but I end up limiting my activities so I get some things done but not alot.

I think you would need to talk to your doctor and explain how pain impacts your life so he can determine what might work best for you. I wish they were the magic bullet but they're not. I hope you have less painful days than you have been having.

I know when I don't get alot done in a day I feel kind of bummed but I am trying to accept the situation and not feel so guilty. If I am working outside and start to peter out I now come in the house and put some relaxing music on and take a break. Works much better than getting mad at yourself for getting tired..

I didn't get any relief from NSAIDs after the 1st 3 yrs of symptoms (long before a diagnosis). PCP put me on hydrocodone 5.0, then later to 7.5, then 2 yrs ago it was up to 10.0 2 per day as needed. Eventually, I needed them pretty much every day. MTX has helped pare that down some, but each month that goes by, I feel I'm slipping a little more. During a big flare, I asked PCP for more pills per month and he shipped me off to pain management. I'm holding on but it's getting harder each month.

I don't have constipation issues too often. If I do, I can miss one dose of hydrocodone and it causes some diarrhea...takes care of the problem. Otherwise, I keep my opiate receptors happy.

I hate that I've also adjusted my activity (pretty much no activity except for work-much of the time) because of the disease. I hope it gets better as treatment goes along. So good luck with your pursuit of happiness.

I swim with two people who have osteoporosis, and that seems to be more painful than the SpA pain. Swimming is not exactly right, because these two wear the flotation belts and walk gently around in the deep end of the pool for an hour each day. I hope you can find some relief. Pain is rotten!