I am disabled with serious RA, and have recently moved from Colorado (which I loved) to Vermont, because Vermont has great health care, and here I can get the extensive care I need for free. So it was a necessary move. But now I am having a problem with my new doctor, and I wonder if anyone can advise me on this. She's a wonderful person, generous and kind, a good doctor. But we are struggling about my pain meds, always (in my experience) such a contested and difficult area. I am really discouraged and depressed, and honestly scared about it. I have been on pain meds now for 6 years. I take them daily. I cannot begin to imagine life without them. My pain is extremely high. I can't walk much, and the pain wakes me up every night. It drains all my energy, and controls everything I can or can't (more can't) do. The meds make it possible for my daily life to be closer to normal. It makes the pain more maneagable (doesn't take it completely away and I wouldn't expect it to). After six years, I get absoutely no feeling of being drugged or even sleepy. In fact, I have more energy and my mind is clearer, because I can think of things other than surviving the pain. But also, after 6 years, my tolerance has gone up, and it seems reasonable to me that I should need slightly more now, not less. Isn't this called titration? But my new doctor keeps cutting my dose, forcing me lower and lower, just as the pain gets worse as I wait to schedule a hip replacement surgery. She recently cut me back to 4 pills a day, which is just not enough, without discussing it with me first, and not responding to my request to talk to her about it. Is there some way to make her understand that needing slightly more after 6 years, enough to get through the day (I take them on a schedule, but 4 doesn't make it, and doesn't leave me one for night when the pain wakes me up), does not mean I am doing anything wrong? I am exhausted from struggling with this, and being made to feel that I am somehow a problem patient, when I'm just asking for adequate pain treatment so I can live my life. I would be so grateful for any help, perhaps reference to something I could show my doctor -- or word from one of the doctors on this site? Thank you so much. Susan Noel.
I'm sorry you're still having trouble getting the pain relief you need. We are planning a post from a pain specialist in the next month or two, but that's not going to help you now.
I have three suggestions. First, read (and print out) three articles from our Chronic Pain site on opiates and dependence versus addiction, how pain management suffers due to fears of prescription drug abuse and a post about a review showing that under the right circumstances, opiates relieve pain without addiction. Second, also print out this question that you've submitted, plus potentially the answers and show it to your doctor. What you wrote in the question so clearly outlines your situation and perhaps it is time for you and your doctor to have an honest conversation about your needs and her reasons for hesitating to give you the pain relief you ask for. Bring the articles mentioned in the beginning of this paragraph and discuss the issue with her. It is a sad fact that due to a few, doctors are put in a situation where prescribing opiates puts them at risk. Perhaps if you and your doctor hand an in-depth discussion about the issues, you would come to a clearer understanding of each other's position. Which brings me to the third suggestion: ask for a referral to a pain clinic/pain specialist. I have severe joint damage, as well and understand the pain you're in. However given that your doctor has issues with prescribing the opiates, seeing a pain specialist who will use a multidisciplinary approach to addressing your pain may address not just your doctor's concerns, but also your pain.
Lastly, may I (gently) suggest that you perhaps look into getting a mobility aid, like a scooter or wheelchair? Part of your pain is no doubt coming from weight-bearing and it requires a lot of energy to still be ambulatory with the amount of damage you have. Perhaps a mobility aid for longer distances (e.g., to go shopping) could ease the stress on your joints and therefore ease your pain. You may also want to look into getting some form of home care, that can help you with routine household task, e.g., light housekeeping, meal prep, etc., which could again perhaps ease the demands on your body, therefore giving you less pain, as well as leaving more energy for other things.
I work in a physician's office and the "drug seekers" take away any confidence in any patients that need the pain meds. Have you tried a pain clinic? Try another physician. Try anything that you have to do. Take drug tests, sign a pain contract, do whatever it takes to make your physician listen. Try a new doctor. The patients that really need the meds get the shaft because of all the drug seekers. Try a heart to heart with your doctor. If this doesn't work, try getting into a pain clinic or whatever is available in your area. Don't give up.
Hi Calamity Jane....I know exactly what you're going through! The same thing has happened to me over the years. I have to totally agree with the previous person's answer about "Drug Seekers." I have been battling doctors for years to try and prove that I am NOT a drug seeker. It's so hard to do when you have a lot of people coming into a doctors office needing drugs for pain only because they NEED to get high on them. That leaves people like you and I in a very tough place.
I live in Montana now, but I have lived in the East for most of my years. Back then, I didn't have to argue or try to prove anything with many of my doctors about pain medications, as they knew me well enough to know that I had a lot of true pain issues. They knew me well enough to know that I wasn't using these pain meds for all the wrong reasons. Times have changed though, and so have a lot of doctors "views" on pain medications.
A lot of the pain meds WE need, have been so badly abused by people who want them for recreational use, etc. So we suffer needlessly, and are somewhat punished for others who use them carelessly, and become dependent on them.
I would suggest you try and find another doctor who really understands what sort of pain you are in. It's probably easy said than done though, as I believe the doctors today have steered clear of giving their patients strong pain meds-period. I suppose they don't want their patients strung out on drugs. Not to mean you or I would be in that class of people, but somehow doctors are "weird" even at the mere mention of "Pain management" let alone, medications.
Nevertheless, I suspect most doctors will probably refer you to a pain clinic. Believe me, I've been that route too, and the strongest pain medication he would give me was "Tramadol." I kind of chuckled to myself about that because I could take 3-4 of those pills and still be in a lot of pain. I tried the fentanyl patch which was one of the stronger ones but it just barely dulled the pain. I developed a allergic reaction to it and couldn't take it any longer.
My luck is nothing but bad luck, being I'm allergic to just about all pain medications but can tolerate an older one called Talwin NX. It's hard to cope knowing there are better and stronger medications out there, but I have to be allergic to almost all of them.
It's true that we build up a tolerance to the dosage of pain meds. As time goes by you'll need more and more of the same drug to get the same effect you did when you first starting taking them. That's a given, and can't be helped. I think that's why doctors don't like giving them out in the first place, because they know we'll need more and more sooner or later, and most of the time this just can't be helped!
So, when you start to think you're alone, remember your not. You're never the only one in the boat! I wish you the best of luck in your quest in finding an understanding doctor. I believe they are far and few between! I know it's scary to think about not being able to take your usual dosage of meds, but please don't give up! I believe that everything happens for a reason!
*Scryingeyes* (Suzie)
i completely agree with everything you are saying. i have come to the solution that suicide is the only way to get anybody to listen to what i have to say. my name is Tim , i was in a car accident in '94. as a result i have 1 plate and 8 screws in my l upper arm, 1 plate and 6 screws in my r forearm. 2 plates 16 screws in my pelvis. 2 screws in my r elbow. 2 screws in my l ankle nerve damage and drop foot to my r leg. total hip replacement to the r hip. i had bruised brain , rupture spleen bruised lungs and my back was broke in 3 places. i have been on pain meds for the last 8-9 years and now my doc. had to stop practicing because of cancer and the dr i was sent to doesnt want to do anything for me. i go see a new dr. in 4 days. i just dont know what to do because i cant deal with the pain. and i am not going to anymore. all i want is to just find a doctor that really cares.
Its sad that there's always those who do the wrong thing & make trouble for everyone else. I live with RA pain but am also allergic to the preservatives in most meds so I do find it tough at times. However, I have also seen it from another perspective. My father was at one stage on so many meds, injections, pain killers etc that he just became this dopey lethergic old man unable to care for himself. His doctor just gave him far too many drugs yet he still suffered horrible pain. In the end he had to go into a nursing home where they cut back most of his medications, keeping him on a strick diet, gentle exercise/hydrotherapy/physiotherapy and some natural therapies. We were all shocked! He started to be able to talk clearly again, get himself up & walk around & could think for himself without getting confused. He became mentally alert again instead of totally out of it. So while he will always suffer pain, he also has a better life now too. I think its important to try to find some sort of balance if possible to control pain yet not allow doctors to overprescibe drugs.
Your absolutely right Sally! Your father sounds like the other side of the coin. Some doctors do put their patients on too many medications, to where they can't function! I have seen this happen a lot. Then like I was trying to say, some doctors won't give you the proper amount of mediation. It's finding the grey area that's important. Not too medicated, but medicated enough to put a dent in the pain. It's just a fine balancing act isn't it?
I'm so glad your father was able to get off a lot of his meds. He probably couldn't "feel" anymore. That's sad. I wouldn't want to go down that road. I would rather be in mild pain than not being able to function from day to day!
hello cj : i don't have any answers for you but i can tell you that you are not alone. where it VT are you? I am in Gray Maine.
any way, after years of being on a moderate dose of medication. moderate - as was once considered to be but not these days,
i used the patch for long acting. but after many many yrs of pain my doc got me up to 2 30mg tabs every 4 hrs a day and it was a pretty decent amount. i was at that amount for about 5 or 6 yrs and before a severe auto accident which injured my lumbar back. ontop of my dozen maladies i received as genetic gifts from both sides of my family.
suddenly my doc who had always treated me as a friend and a patient. he got me to put my guard down... any way, he decided the meds weren't helping me any more because i was depressed and still having flares - mostly at night which i said could reach a 6 or 7 on pain scale.
so, he cut be back from 12 to 9 and i thought it would end there. but nope, i went in for my next OV and he gave me just 88 pills to last a month when i was use to 360 a month and said it would be my last prescription and he wouldn't give me a rx for the patches!!
i am suffering so much. i am a kind and good person but lately i have had some aweful thoughts about what i want to do to this "doc". i don't care that the dea is come'n down on pain docs. i think he should have stood up for me. or at the least not have dropped me like a rock in the middle of the lake w/not so much as a floating log to happen by. sadest part is that my poor mom w/alzhiemers has the same doc who just hurt me. and she's got to keep seeing him until i can get her out'a there. she's constantly in fear that he will do the same thing to her.
i would quietly look for a different doctor. but honestly from what i have read and heard i do not think it's gonna get much better any other place and you may end up in a worse case senerio. maybe your doc would feel better increasing the dosage rather than the number?? best of luck to you. i know how much you hurt and bad you feel. seconds go by like days when it flares, huh? i'm just praying for better days.
be well - hugs of hope for you!
To Everyone who has written here:
Thanks so much. It does help to know that I'm not alone. Things have gotten a little better for me since I posted this. My doctor and I have communicated better. But I also finally saw my new rheumatologist, and she was great, and said these amazing words, "If anyone ever gives you trouble about pain meds, just send them to me."
I gently repeated this to my general care doctor, and she is now prescribing a more reasonable dose of pain meds for me. Also, I am about to see a surgeon about hip replacement surgery. This could be very exciting -- it might happen in May (I'll let you all know), and then it's really possible that I could be walking much easier, and in a lot less pain.
Even if that happens (and I'm hopeful), I'm worried about reducing and perhaps being asked to get off the pain meds. This is hard to admit and I don't know how much sympathy there is for this fear -- but I've been on them for so long, and to be honest I know that there is an emotional as well as physical dependance now. It is hard for me to imagine daily life without the meds. I think it's important that none of us pretend that pain meds have no emotional effect, because they do. It's been years since I felt anything that could be contrued as being "high" on these meds -- no dizziness, no euphoria, none of that stuff. But they do make me feel calmer, and give me energy. Is this just because they give me a way to somewhat control the pain? I hope so. Perhaps I'll need the support of therapy to get off of them. Perhaps I won't be asked to get completely off of them. (And yes it would be great to need less and take less. My dream is to be able to not take them every day.)
Anyway, for the moment, things are better. I have enough pain meds, at least until surgery. I'm in good communication with all my doctors. (Still keeping in mind a pain doc if necessary.) And Lene, I will consider a skooter if my walking does not improve. I'm in New York right now for a few weeks, and cannot even get down the stairs and go two short blocks to the store without my hip seizing up and screaming -- I do admit that I just can't keep trying to walk in this shape. We'll see if surgery helps. Even a little would be great of course.
My mental state is better right now, which helps everything so much. I struggle with depression and mood swings so much, but for a little while now have been feeling stable (getting the correct dose of pain meds helped!), basically happy, okay every day, all day. This is like heaven for me. The mind is so important when dealing with pain. When I feel stable, not depressed, not having panic attacks or anything like that, everything, even pain, is easier.
So: alert the media. For once, I do not feel like I am in crises. It's a very, very good way to feel, and rare for me. I wish the same for all of you out there who have been so kind to me. You've all done more than you know in helping me to know I'm not alone. (And Lene -- let's get back in touch. Sorry I've been so absent. The move was just killing, I'm still recovering.)
all best to all of you,
Susan (Calamity Jane, currently not in Calamity!)
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Thank you so much. Yes, I have a hard time not really hating the people who abuse these meds, because it makes life so hard for those of us who truly need them. I am so exhausted most of the time that it's hard to muster the energy to think of finding another doctor. I'm still new in Vermont, but I'll see if I can find a pain clinic in the area. That does seem like a good idea -- I'd love to be able to talk to a doctor who at least had experience working with chronic pain, and didn't have this automatic working assumption that pain meds are just "bad." I've had several doctors over the years, and they all seem to have that. And the minute I try to discuss pain meds with them, I can see the look in their eyes. Their opinion of me changes. It's really hard. I find myself wanting to tell them, "Look, I am a good person, an honest person. These meds help me live my life, and without them I can't do anything but suffer." But they don't know, having never lived that way themselves. Sometimes I think the best thing would be to find a doctor who lived with pain -- maybe then they would understand. Anyway, thanks for your encouragement. I'll keep trying, because I have to.