Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you do for pain control

I guess that can be a personal question? I was just curious what has point black worked for you. Do you grin and bear it? Does a TNF work by itself for you? NSD? Anti inflamms? Narcotics?

I am tired of the rollercoaster ride I have been on lately. I am a 12 year auto mechanic, that also works on my own car projects and family/friends cars too. I was diagnosed about 3-4 years ago with AS. Also have bad gastro issues, and lots of tendonitis according to the rheum dr. I am 30, and symptoms set in heavy starting about 22 or so. My pain has been pretty ridiculous lately. I am currently on Remicade, Arthrotec, and Oxycodone.

I have noticed the remicade working. Just not the pain free feeling I was hoping for. Anti inflamms seem to do nothing?

Long story short, I know the Oxy's are not a fix, but a short vacation stay away from the pain land. I am starting to rely upon them more than I would like to admit. I have an awesome rheumy dr! He doesn't mind prescribing them, but we have talked about my use and he and myself are working on a plan to cut most of them out. I have been completely honest with him, and my whole family about the use.

As most of you know it's he%% going off of them. Even tapered. I'll get fed up with my behavior quit for 2 weeks or more, but will wind up calling the dr after a bad pain day. I am taking 2-3 more pills a day than I should, so I run out a little sooner than I should.

I know my job is terrible for me, and is on my mind constantly. I am married with 2 young children and I am the only paycheck and health insurance so there is a lot riding on me to be around and be consistent. My rheumy suggested I am progressing at a rate fast enough that I should start my disability paperwork, but I need money now too?

I guess I am rambling, but open to any and all suggestions. Thanks, Jason.

sorr yto hear of the pain your in I was diagnosed in 2009 and now the pain is getting rediculus my doc wants to start me on enbrell hope fully that will work you could ask your doc about it as far controlling the pain right now I take 2alieve with a 7.5 oxcodone and it work thank goodness untill I started my job back I was off for aweek but my job has me walking around on concreet for about 7-8 miles every day so im goig toask for a transfer hope you and your doc can find somthing that works by the way this disees sucks have a great pain free day o I wish that would happen

hi jason

first i hear you about the job. 2 years ago, my husband and i were very concerned as to whether or not i would be able to keep working. he called my benefits office to find out about my short term and long term disability. good news is that i've got good coverage, should i need it. i was on sabbatical at the time and kinda lied and told my colleagues i was working from home; other than keeping my research group going, i was basically off of work for 3 months, and driving very little for 6 months total (those last 3 months was finally getting some work done at home). anyway,

i share this with you because i am the bread winner in my family. long ago i was the one who wanted the faculty position and that's what i do. the flexible work environment is great, but the long long hours and the meetings i can't get out of really rot. my husband made the conscious decision that he did not want that sort of career and hated sitting at the computer to work (terrible for his back as well), so prior to my tenure, he worked 1/2 time, and once i got tenure, he quit his job and now paints, and we know very few people can make ends meet as a noncommercial artist.

so, if i can't work, we'd have to sell the house, move to another state, and he'd have to work full time. it would be a major lifestyle change for the two of us. but if it comes to that, then that is what we will do.

what i guess i'm getting at, is that even though we spouses have one plan for our lives, sometimes life throws us a curveball, and we have to revamp that plan. the person who was going to work, might be the person who can't. and the person who was going to stay home (and rasise the family) might be the one who has to go out into the working world. though you didn't ask this, maybe you and your wife need to talk if you haven't already about her thinking about a career and getting trained now before you can no longer work? it sounds like that was not your original plan, but i guess we gotta do what we gotta do. i'm lucky i have a spouse that would do that for me, if it came to that. just like i was the kind of spouse that encouraged him to quit his day job to focus on his art. i think flexibility is key.

or maybe there is something less physically demanding that you can do?

as for pain?

i've often wondered why i've never been offered pain meds, but in hindsight maybe glad i haven't been. i was finally offered tramadol, but only on the same day i was allowed to try LDN, and those two are not compatible with one another.

i've found ice and heat, but mostly ice to give me more relief than just about anything else.

PT and now a chiro have been a big part of my life since this started when i was 35, in 1998.

one of my biggest problem has been the tendons; enthesitis. i've had lots of tendonitises, pulled tendons, torn tendons and ligaments over the years since this all started. PT, ice (then ice and heat and stretching to prevent scar tissue), rest would help, but it wasn't til i started LDN that they didn't get injured quite so badly and they healed up a lot faster. i've had cortisone twice, once in my dq tendon to help the tendonitis heal. and once in my ulnar wrist to help with the healing of a torn ligament.

the physiastrist also gave me a muscle relaxant, zanaflex in 2001, and i was surprised that that helped the tendonitises. my current rheumy said something the other day that i sorta thought, that although the muscles are tight due to the inflamed joints, the tight muscles pull on the tendons, making them worse. so by relaxing the muscles with the zanaflex, it allows the tendons to relax a bit as well. to further this effect, the rheumy wanted me to try coQ; not sure its doing much, but didn't hurt to try it.

for my SI joint, the big secret for that has been the flector patch. prior to that it was a constant battle and PT or chiro would help, ultrasound would help, ice would help. but only once i put an nsaid patch over it 24/7 did it finally give me relief. it still flares a few times a year, but that's so much better than it was, and it heals in a week or two vs several months when i do have a flare. the only other thing that ever gave my SI joint any relief was aleve. but it gives me edema and gastritis so i can't take it. none of the other nsaids either worked or could be tolerated long enough to see how effective they were (same for cox 2 inhibitors).

for my upper back, triggerpoint injections from the physiatrist helped. but i think i was a special case because i tore something in the rhomboid area of my back from a quick motion with tight muscles and it never healed right, instead it formed adhesions and triggerpoints that had to be worked out (first with ultrasound, then the injections (just a little lidocaine, no steroids).

another way for me to "treat the pain" is to try to avoid it in the first place. so i wear flip flops in the shower to help the PF and achilles heel pain. i'm very particular about my shoes to prevent PF. i'm very particular about chairs, cars, travel, etc etc. all these things essential. when i travel by plane i use various pillows and cushions and take a muscle relaxant. i do the same thing anytime i go to the dentist, for scans, etc.

more recently i've also been given prednisone. it's nothing short of miraculous, but i've used it judiciously. only once so far when i was desperate.

and now my doctors have me on various supplements. some are supposed to help the arthritis directly (3000 mg fish oil, 1000 mg vitamin C) and some indirectly (the probiotics).

not sure the fish oil or C are doing much directly, but maybe they are supporting my immune system so i'm better between flares.

and the probiotics have been nothing short of miraculous for my GI issues. i had a colonoscopy that showed inflammation and small "crohn's-like ulcers" in my illeum. and i was unexplainably constipated during the summer months the last few years. additionally stool sample testing showed that despite eating stoneyfield yogurt every day, i had no lactobacilli. so i'm on a lactobacillus probiotics that has been shown to be good for healing intestinal inflammation.

maybe probiotics are something you could talk to a doctor about? have you had a colonoscopy? stool sample testing? wondering what your GI issues are?

i also was fluctuating with loose bowels. but i think its mostly severe pain that brings that on. i also deal with gastritis, though mostly control that through diet and prilosec (and when in a flare, mylanta too especially at night).

i also had blood work done to determine food sensitivities (through a naturpath doctor). i'm supposedly sensitive to dairy and eggs so have largely given them up. if one believes in the leaky gut theory, that our inflamed guts are allowing food particles to get through to the blood stream and our bodies are reacting to that through inflammation, then this is an avenue to explore. since i developed the GI issues 5-6 years prior to the arthritis issues, makes sense to me.

though your issues started much earlier in life than mine did, so much of what you describe sounds so familiar. for the longest time no doctor seemed to sense what was really wrong with me, so over time i just learned a lot of coping mechanisms, hence the long laundry list of what i do and take.

some days i really wish there was a magic pill they would give me to just let me get on with life. i get the impression that the biologics can be that for some people.

others seem to be able to control things through diet. i am on the LSD because its good for my metabolic syndrome, but i've never noticed a change in my diet to affect the arthritis.

i think the secret to pain control is inflammation control. i was supposed to try SSZ, but until the liver settles down, that's been put on hold.

for me, its kinda a lot of things i do together to get through it. and i am a lot better in between flares. but i'm still flaring, so i still have work to do.

the latest theory by my rheumy is that seasonal allergies could be a trigger as well......always something new to explore.

Hi Jason,
No it is too hard to grin and bear it. I went with muscle relaxer's for awhile but they gave me restless leg syndrome which turned into restless body syndrome.
I tried 15 different types of arthritis med's, pain patches, gel's, etc. I came out of remission 7 year's ago and it has been a nightmare trying to get anything to work. I knew that I had tried everything that the Dr.s threw at me.
After being bedridden for several year's I found 2 pain specialist at 2 separate pain clinic's. One give's me injection's and now has moved on to giving me Rhizotomy's for longer relief. The other pain clinic gives me narcotic's that I take as needed. I take Percocet for quick flares but the relief is short term. I am also on Morphine and sometimes Oxycotin. The Morphine work's the best but I can't take it around the clock as it gives me migraine's. The Oxycotin make's my face feel congested so I don't like it as well. None of these medication's make me completely pain free but do take it from a 10 level of pain to a 7. I live at an 8 most day's. I tolerate this medication's well and am also on Prednisone right now. They don't make me sleepy or woozy or high or anything else. I am thankful for them or I would not want to live anymore. I am so progressed. Waiting to start Humira soon.
We take what we need with this disease and don't feel bad about it. We have to have some quality of life to make it through.
I wish you the best and hope they find something that help's you soon.

Pea

I used to take Toradol for Pain, Its in the NSAID family but was described to me as "synthetic codeine" and it worked pretty good with no side effects... until it stopped working (after 12 years of off and on use)
Tramacet/Tramadol is my current pain killer. Am not on anything else other than stool softener (cause the tramadol has THAT side effect unfortunately) and liquid iron and my list of supplements to deal with Fibromyalgia.
I have to keep ahead of pain or its worse. So i take more than I would like to it works out to be 3-4 a day (i have been given 2 different dosages to chose from) and i do feel like i have just had a big glass of wine when i take it but otherwise i am pailess
As long as i dont do too much with my right shoulder/arm/wrist- but it helps with the SI pain that is pretty intense and distracting right now.

EXERCISE! That, along with laying on my front for 20 minutes at a time, ice and heat and NSAIDS. I do a gentle martial art called Boabom or Seamm Jasani. Look it up! It's great. Usually 2 times a day I spend about 30 minutes meditating and doing a routine and it has helped to some degree. Sorry about the pain brother but you have to do what you can to control the beast. Good luck!

Ice helps me the most. I use a flector patch on my SI and that helps, bur does not eliminate the pain. I have been taking Norco. I went in to see my GP to ask for something stronger then Norco and he said to try a short course of Pred first. If that didn't help, he would give me a script for something else. In the past, the Pred usually will stop a flare fairly quickly.

Wow Jason sounds like you have it bad and working on cars is even harder , i love to tinker on my cars when i feel good but every day would kill me. I am on Embrel and NSD and doing good and i am at 0 pain at the moment hope to get 1 mounth out of a shot with diet.I hate to take any meds but some must to suvive and still work . But every one reacts diferent to drugs i am learning on this site . All i can say is maybe talk to your doc about a difernt TFN blocker and LDN to help get off the dream pills . Hang in there. Kurt

Hi Jason,

Welcome to KA, and nice to meet you.

You are doing many of the things that a large number of KA members do to help with the pain, so you can rest easy that you have a doctor who is helping you take all the right pharmaceutical steps. Of course, as I'm sure you've already read here at KA, there are plenty of non-drug routes to take to reduce pain too, and I would definitely recommend exploring all of those as well. At the top of the list is the no-starch diet, which many members have had great success with. Additional steps can include massage, biofeedback, acupuncture, etc.

I did want to specifically address your mention of oxydocone and the your worries about how you use it. I know you're concerned about using and becoming addicted to a narcotic, especially one as strong as oxy, and of course that is a valid concern to have. However, I can tell you that I myself have been on oxycodone for well over 10 years now, and, frankly, without it, I would be in far, far worse shape than I am now. First off, the drug allowed me to keep working for at least 5 years longer than I would have been able to without it. Oxy, combined with the anti-TNF drugs, kept my pain at a very manageable level and allowed me to keep working at my job in the publishing industry. I did end up taking full disability retirement in 2007, but that was after working for 21 years with very severe AS; as I said, without the oxy, I likely would have been out of work at least 5 years before that.

Until recently, I was on the extended release form of oxy, taking 80mg twice a day. Unfortunately, there has been some big mess involving the generic version of the extended release that started about 6 months ago, which forced me to switch to the instant release form of the drug. With the IR, I take 1-2 30mg pills every 3-4 hours, or at least that's the level that is prescribed. If I play my cards right, which I do most days, I take 2 pills in the morning and then don't take another dose of 2 pills for at least 8 hours. Now, if I was still working, I would probably not be able to last that long in between doses, so I do realize that in your tough line of work, you would likely need to stay right on your dosing schedule and would not be lucky enough to stretch things out like I do.

Even if that's the case, to that I say this: Big deal. In fact, big freakin' deal. Yes, there is the real concern that you can become addicted to any narcotic pain med, especially one as strong as oxycodone, but for me and most others here, the bottom line with opioids has always been this: If you suffer from a disease that causes chronic pain that likely will never totally go away, then you absolutely should take ANY pain medication that helps make that pain better, including opioids. Doctors are so afraid of their patients becoming addicted to these meds, but if that patient is ALWAYS going to experience moderate to severe pain from their disease, then why in the world should they not be allowed to use every medicine at their disposal to manage that pain? That seems to be a very common sense statement, I know, but unfortunately the climate here in the U.S. is incredibly negative when it comes to narcotic pain meds. The reason for that, of course, is all those great folks who have decided to use oxy recreationally to get high, thus demonizing the drug in the eyes of both the DEA and large segments of the public. I do understand that drug addiction is a disease and I do have compassion for those who become addicted to oxy, but at the same time I can't help but be very angry with those folks who abuse oxy because they have made it very difficult--in some cases impossible--for people with AS and other similar chronic illnesses to receive the adequate pain medication they should be entitled to.

One point that I've made before here on KA that I will make again because of your real concerns about becoming addicted yourself is this: It is VITALLY important that you realize that there are TWO types of addiction when it comes to opioid pain medication. The first type is the kind that EVERY person who takes such meds experiences, and that is a physical addiction to the medication. All this means is that, because of the nature of the drug, your body will come to expect that it will be delivered on a regular basis due to the chemical and physical dependencies the drug creates in the body. Being physically dependent on a drug simply means that you need to a) make sure you deliver it on a regular schedule every day; and b) that you NEVER stop the drug cold-turkey, but instead, if you do have to stop taking it, you taper off it by slowly reducing your dosage level while under a physician's care. As long as you do those two things, you will be able to manage the physical dependence without too much trouble.

The other type of addiction is the kind that is far, far worse than the physical addiction and is actually the type of addiction that the vast majority of people are referring to when they say someone has become a drug addict. That type of addiction is, of course, the mental addiction that can occur while taking narcotic pain meds. This form of addiction is insidious and very dangerous because it can cause you to start taking more and more of the drug and ultimately cause you to become what we call a drug addict. With a mental addiction, your brain tells you that you need more of the drug even though your pain is either under control or even completely gone. This can happen because your mind is playing tricks on you and telling you that the pain is still there and is getting worse, when in fact it isn't, or it can happen because the drug can definitely cause the feelings of euphoria and pleasure that we associate with street narcotics and prescription opioid meds. Even folks with chronic pain can experience that high feeling, and if they do, of course they are a human being like any other and they might have trouble fighting off the urge to take more and more of the drugs to keep experiencing that high. This kind of addiction is driven by the mental craving you experience as you try to recapture that high, but it is important to note that the more you take the drug for the sake of getting high, the more dangerous the physical addiction becomes as well.

Now, of course an AS patient can become mentally addicted to a drug like oxy and can turn into a drug abuser who is no different than someone without chronic pain who abuses the drug. However, if you were to take a poll of every member of KA who has used oxy or one of the other opioid pain meds, I don't know if you would find even one person who did become an addict in the common sense of the word. This could be for many reasons, but I think my experience with oxy could point to a common reason: Quite frankly, I have never once experienced that high feeling from my oxy, not even the first time I took it. In my mind, this is because the drug did what it was supposed to do--it reduced the chronic pain I was experiencing every single day. I think if there is severe pain present like that experienced by AS patients, it's far less likely that someone will become high off an opioid because the drug has a job to do and, when it does it, wears off before any kind of stoned feeling can occur.

Obviously I'm not a doctor or a medical professional of any kind, so this is just my personal feeling on this, but I do know one thing for sure: Many, many people here at KA have ended up using oxy or other opioid medications, and as far as I know, there have been very few, if any, incidents where people became addicted to the drug in the sense that they were taking it strictly to become high. To me, what this means for you is this: You say the drug is working for you, yet you've been talking with your doctor about totally cutting it out of your treatment program. Every time you've tried to do this in the past, your pain levels have shot through the roof again. Doesn't that tell you something? Instead of cutting the drugs completely out of your treatment program, maybe it makes more sense to keep doing what you've been doing: work with your doctor to oversee your dose level and to make sure you don't start taking more and more of the drug. You mention how, right now, you've run into situations where you've had terrible pain days and ended up taking two or three extra pain pills, meaning you ran out of your script earlier than you should have. Now, that kind of behavior CAN be a red flag that you are starting to become too dependent on the drug. However, it can also mean something completely different: Perhaps you just haven't found the dosage level that works best for you, that is, the level that adequately controls your pain and does so well enough that you don't feel the urge to take two or three extra pills on "bad" days. I know that's what happened with me, and honestly, it's to be expected when you start taking opioids. In fact, a responsible doctor will tell you from the start that the goal is to start at the lowest dose possible and then from there, increase the dosage as needed until you reach the point where you feel your pain is under control. When I started taking oxy, after the first three months I was still in a great deal of pain, so I talked to my doctor and we bumped the dose up one level. That's all it took for me--after that, I only needed to up my dosage one more time over the next 10-plus years.

When you do approach your pain management in this way, there is always a chance that your pain is so severe (or your body does not react well to the pain meds) that you might never reach a dosage level that provides as much pain relief as you were hoping for. Again, this is where a responsible doctor comes into play, as your doctor will know when he's reached the point where he can no longer increase your dosage and remain at a safe level. If that happens, options include trying another med, or, unfortunately, realizing that opioid meds do not work well for you and thus perhaps should not be part of your treatment regimen. Based on what you've said here, that certainly does not seem to be the case, as it sounds like you have definitely received relief from the meds.

To wrap things up, I would just say that perhaps you need to reconsider your plan to totally cut the oxy out of your treatment plan. If there are things going on that you didn't feel comfortable mentioning here--for example, perhaps the meds are impairing your mental abilities and making it dangerous to perform your type of work, which I could definitely seen happening--then I can certainly understand why you want to stop taking them and I would encourage you to do just that. However, IF the meds ARE working for you without any severe side effects, and IF you feel like your pain would be under good control if you could just take a slightly higher dose of the oxy, then I do think you should reconsider your decision to stop taking it. Talk to your doctor openly and tell him how well the med can reduce your pain, and explain that you think if you can just work together to find the right dosage level, the med could be an important tool for your pain management. Let your doc know that you're very willing to see a pain management specialist to explore other avenues for pain relief--this will send a clear signal to your doc that you are not in ANY way simply seeking a way to get your hands on more and more oxy. (It sounds as if you do have a good relationship with your rheumy, which is SO important when it comes to pain meds.)

Anyhow, I hope all this made sense and gave you perhaps another perspective on how oxy might not be a bad drug for you after all. Feel free to send me a private message here at KA if you want to talk about this further.

Good luck,

Brad

I was taking Norco and managing okay up till June when I had surgery on some wayward toes. Switched to oxycodone immediately post-op. Since I've been unable to continue on usual pre-op arthritis meds, I have been unable to manage my pain without oxy. Pain doc is okay with this and hasn't hassled me about it. Hope this helps.