Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Going to ask for pain meds

When I was first diagnosed, I really couldn't function due to the pain. Over the last few years I've learned to function despite the constant pain. I've learned to get by, but getting by is just about all I do. The pain has never gone away or gotten better. Its worse now than it was then and I'm turning into a person I don't like. I have trouble getting stuff done because of the constant pain. And then I have the problem of appearing to be someone who always complains or looking lazy because people think I'm fine and I just don't do stuff. On top of that, I really don't have a social life or friends anymore because I can barely make it through the workday, let alone going out after work.

I'm at a point that I really think I need to have my pain treated. I'm just not sure how to go about it. My rheumatologist doesn't like treating pain, I guess I should ask him though, or get a referral from him to someone who will treat pain.

Next weekend I'm suppose to go up to Long Island to see my extended family. I really want to see them, but I've been dreading spending 12 hours in a car, I really don't think I can do it. I mentioned this to my parents and its caused all sorts of problems. Turns out I'm supposed to share the driving with my sister, and if I don't go, she won't go which means my family won't get to see my niece and nephew. So I don't really have a choice now.

I know I've gotten a bit off-topic, but I don't want to be in a position where I can't do stuff due to the extra pain it'll put me in.

hi jeffrey,

my physiatrist "doesn't do pain meds" she says. so i've decided that if i feel like i did in march when i asked her about it and got that reply, i'd go to a pain specialist: some physiatrists fall under that category, some anastesiologists fall under that heading. there are pain clinics, pain centers. i think if i was desperate, my physiatrist would comply, but i don't want to force her into it if its not something she likes doing.

my old physiatrist (in another state before i moved here) put me on a muscle relaxant the first appointment she saw me. that was a lifesaver. when i had my first big SI event under her care, she prescribed a narcotic, but i couldn't get it from the pharmacy as i was in another state when it occurred. then i popped myself back in as she instructed over the phone, and my back stopped clenching everytime i moved. she was much freer with giving out pain meds.

some doctors are afraid we will abuse drugs, some are more concerned with out pain. find a doctor that is most concerned with your pain and trusts you not to abuse the drugs. funny thing is, when they've studied the issue, most pain patients undermedicate themselves. i know for me that's true, and given a choice, i'd be drug free if i could be.

as for the travel thing. i do not drive anywhere that is more than 2-3 hours tops, and even that requires a break half way in between for over an hour. and only if i'm driving my car, as every other car seat since the mid 90s seems just absolutely evil to me. if i can fly there within an hour or two, i'll do that, and that's even a little easier because i can take drugs that will put me out (my muscle relaxant zanaflex); not a good idea if driving

this lack of travel has definitely put a wedge between my family and me. they (parents, brother, sister, in-laws) definitely do not understand, and have even resorted to snide comments. yes, it hurts, but at the same time, i have to just not care. i mean, i do care on some level, but i care about myself more. taking care of myself is my number one priority. don't get me wrong, i'm not a selfish person, and i think that was the problem. i was always the one going out of my way for everyone else. now its their turn, and if they can't return the favor, as much as it could bother me, i just choose to not let it. we talk on the phone, we act pleasant toward one another. i do love them. but, they could come visit me. do they? not much.

so i ask you....could they come visit you and your sister instead?

or, could you take the train? i see you are in D.C. and going to Long Island.
i know that part of the country well. lived up and down the east coast.
you could get a sleeper car and take the night train?
even if its day travel, it would be easier than a car, you could get up and walk and stretch as needed. i always do well with train travel.

or can you fly?

or can you be the passenger in your sister's car? ride laying down? laying back?

and finally, don't let them guilt you into this. "if you don't go, your sister won't go", that is not your responsibility.

i speak of this from a lot of experience with the family not getting it.....
10 years. hubby gets it, and i've decided he's the only one that has to get it.
but come on people, don't be so selfish and self centered; bend for us, just a little. we need you to meet us more than half way now. we were always the ones that compromised, now its your turn. i've suggested this to my family, but there's always excuses. so now i don't waste my breathe.

just wish people could think outside the box and do things a bit less traditional if that is what was logical.

ok (takes a deep breath). sorry, got a little carried away.
i guess it does bother me when i think about it.
so, most of the times its placed into the far reaches of my mind.
life's too short.

sue

Hi sue,

The travel thing really is bothering me. My aunt is 85 and can't travel much anymore, so having her come down to us isn't really an option. We are all going up for her birthday, and I really would like to be there. Originally, I was going up as a passenger in my parent's car, but my brother-in-law is being sent down to Florida on a last minute assignment. So that leaves my sister going up alone with a 3 year old and a 1 year old. So everyone just assumed I'd ride shotgun and share the driving. I didn't find out about this until I mentioned that I may not go.

The biggest problem I have is that people don't understand how painful AS is because it doesn't "look" painful. My mom has co-workers with RA and she comments about how her hands look and how much pain they must be in. But with AS if you don't say anything, no one knows and if I do say something, they think its a bad day because I didn't complain yesterday. My family says I just need to ignore the pain a go on, but its hard to ignore when everything hurts.

When I started with my rheumatologist four years ago, I asked about Methadone and he said I don't want to go down that path. I've avoided bringing it up again, but using different TNF's hasn't helped and increasing the dosages hasn't helped. He says that the medicine is working since I used to get painful ulcers in my mouth and they've stopped, but it doesn't help the muscle-skeletal pain, so I think its time to go down that path.

Jeff

Jeffery,

If your rheumatologist is not treating your pain you have a few options you could consider. You could make an appointment with your PCP and tell them you have reached the point where you can no longer handle the daily pain and need something to help you get through your days. Asking for methadone will probably get the same results as it did before. You need to let them make the suggestion. You could also ask your doctor to send you to a spine center that has doctors who specilize in diseases of the spine which is the best option. They normally have rheumatologist, nuerologist and nuerosurgeons who work together to come up with the best plan to treat your symptoms. The next options is getting a referral to a pain clinic with doctors who specialize in the treating long term pain. Pain clinics work with you using different medications until they find the right combination to lower your pain levels.

Brent

of course you will do what you think is best. and making your family happy may be the most important thing to you. but if i were in your shoes, i'd ask myself, "do I want to go?" if the answer is yes, then i'd ask myself, "how do i want to get there?" (drive, fly, train?) we have to look out for ourselves, if we don't, no one else will. it does hurt me when family don't understand, but i figure, if i hang tough, they will slowly come to accept my limitations. if i always cave in to what others want, then the next time they will just think, "well, if you could do it before....." actions speak louder than words. by not doing what others want or expect, our actions show that we simply can't. or something like that.

i think we can all understand your description about silent pain. its like a catch 22; if we don't complain, we can't be too bad. if we do complain, we're complainers, but still not too bad. we don't look bad, therefore we must not be. i've on occasion given descriptions where someone will say, "my, that does sound painful." but i get tired of justifying myself this way. empathy is not in great supply it seems. my brother told me, "you've used up your sympathy." (ouch!) my mother told me, "if you would just not focus so much on your pain and think happy thoughts, you would feel better." (great mom, i'll get right on that) can't remember the other useless advice i've gotten; thankgoodness.

i will tell you, when i first had my stomach problems, my parents were very supportive, coming down to my place for christmas because i was too sick to go up there. but when the musculoskelatal stuff went on for years and i was inconveniencing them by not traveling.....well, fairweather empathy is not really empathy at all.

its tough. i'll give you that.

whatever you decide, do what you want to do.
be happy with your decision.
if you go, go because you want to, not out of guilt.
people have to learn to respect others' decisions.

and if you feel like you need your pain managed better, do talk to doctors about it, either your rheumy (probably the first step) and/or pain specialists. find out the different options. for example. since a lot of my pain comes from muscle spasms, muscle relaxants help a lot. of course that's just treating the symptom instead of the disease, but its better than nothing.

sue

I agree with Sue. My family get "tired" of hearing about it. Then they'll say, work through it. I now ignore and laugh at them. I know that sounds mean, but being treated like I'm lazy or worse really makes me angry. I also don't tell them anything. If I have a bad day I just don't say anything. One of my younger sisters actually looked up this disease and said she was sorry for thinking the worse. She has offered to come out next year to help with anything. As for the pain management/meds. I take the minimum I can. If I have to go anywhere I don't take them. I know thats wrong also but I am terrified of driving with meds in me. Good luck in whatever you decide. But know one else is going to take care of you. When you get to the relatives house you don't want to be in so much pain you can enjoy the visit. Even a low dose med might be enough to take the edge off. I say that because it sounds like you have been forced to accept the pain.

Hi Jeffrey,

Very sorry to hear you are hurting so much! The constant pain that often comes along with AS can easily be one of the most draining, challenging parts of the disease, both mentally and physically. Anyone who has never experienced chronic pain has no idea just how debilitating it can be. In fact, I saw something interesting on a CME show on the Discovery Health Channel this morning: A recent report by the World Health Organization stated that severe migraine headaches were the most disabling medical condition there is. While I know we are talking about an entirely different kind of pain here, the reason I mention it is because it clearly demonstrates how pain, all by itself, can leave a person disabled. Think about that--our society almost always associates disability with some kind of traumatic injury or damage to the musculoskeletal system that prevents a person from walking, or using his/her arms. Sure, they know disabled people also experience a great deal of pain in most cases, but they never view the pain as the thing that caused the person to become disabled, they view it as an unpleasant "side effect" of the disability.

Well, most of us in KA, along with many other people who suffer from chronic pain, know all too well how horrible pain can be all by itself. That's why I was bothered by one sentence in particular in your post:

Quote:

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My rheumatologist doesn't like treating pain, I guess I should ask him though, or get a referral from him to someone who will treat pain.

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Well gee, I'm just SO sorry that your rheumy doesn't like treating pain! I mean, god forbid his patients should bother him with their pain complaints when he's so busy making everyone's joints better and working to find a cure for every form of arthritis! (Was the sarcasm laid on thick enough there? I think so....) I hate to break this too him, but his patients like HAVING pain one he** of a lot less than he dislikes treating it--not even a comparison, really. Too often here in KA we have read those exact words, or ones very close to them, as many, many doctors still seem reluctant to treat pain. I fully understand that the fact that most doctors work to treat the underlying cause of the pain and thus hope to make the pain go away in that manner, but that isn't always possible. Last time I checked, there was no cure for any form of arthritis, certainly not AS, which means that many, many arthritis patients will be left in pain no matter what treatment options their doctor selects. I guess that's why I get so worked up when I hear doctors say things like your doc told you. Too many doctors in the U.S. are still reluctant to treat pain as aggressively as it should be treated, either because they are not educated enough about opiods and addiction in people with chronic pain and thus think only terminal patients should receive opiods, or because they are too scared of the DEA and won't stand up for their rights to treat their patients with opiods when the situation calls for it.

Jeffrey, if your rheumy simply will not help you with your pain, then yes, by all means ask him to send you to someone who will. This might be a pain clinic or other specialist, but whoever it is, you are entitled to medical care that treats all of your ailments, including chronic pain. Don't give up on this--eventually you will find someone who will help you, although I hope you don't have to jump through hoops to get to that person!

Good luck!

Brad

Hi Sue,

If I think of it in the next couple days, I'm going to search the WHO site and see if I can find out more about the report they issued so I can find out if the quote about migraines was used in the right context, etc. I can't remember the exact wording they used, but on that show, they did provide a little bit of WHO's rationale for reaching that conclusion: I think they said most disabling because, with the absolute worst migraines, a person's ability to think clearly goes out the window, meaning they can't really do anything , let alone work, take care of your kids, etc. They specifically mentioned that many people are unable to do anything but lay down in a darkened room for the duration of the migraine, rendering them "disabled."

My memory is a little fuzzier on this part, but they also compared the level of disability caused by a migraine to that of a parapalegic; I believe this is just an extension of the "lie down in a dark room" idea, but I do remember that there was a little bit more related to this idea too. Wish I could remember it better, but I wasn't totally awake at the time it came on!

I've never had a migraine myself, so I can't personally comment on how severe the pain is or how disabling they are or are not. My ex got them a few times a year, and I do remember that the worst ones did bring her world to a total halt--she definitely fell into that "lie down in a dark room and do nothing" group. In fact, often she would lay there with tears streaming down her face, desperately trying to keep from really crying because it would simply add to the pain.

Like you, I thought it was a surprising conclusion, but based on my ex-wife's experiences, it did not seem like an outrageous claim to me in the grand scheme of things. However, I was glad I happened to hear that this morning because it was a perfect example to use to illustrate my point in my original post--that too often doctors overlook treating pain because they get so caught up in treating the disease as a whole or trying to resolve individual symptoms (symptoms are often what cause the pain, sure, but hey, here's an idea--treat the pain while you're waitng for the symptoms to go away instead of just telling the patient, "soon that pain will be gone!")

Brad

The article quote said more disabling, not more painful....I don't suffer from migraines but I know two people that do and trust me, everything comes to a halt when they get one because they get nausea, light sensitivity and overwhelming sensitivity to noise and smell. But I don't take "more disabling" to mean "more painful", my joint pain is excruciating much of the time and I have spinal fusion and the whole nine yards and Tylenol won't touch my pain....but I try not to get into a "my pain is worse than your pain" discussion ever, it's counterproductive and can cause hurt feelings, so I figure why go there...and I'm sure some people out there do have disabling migraines.