Great article; thank you for bringing this up. I would also like to add that I believe there is a problem with age discrimination when it comes to the prescribing of narcotic pain meds. Although diseases like RA and other disorders that cause chronic pain can happen to people of any age, I think doctors often assume that younger patients just want to get high.
Doctors are more willing to give pain meds for short-term injuries rather than long-term, chronic conditions. But, responsible use of pain medicine can mean a better quality of life for those with chronic conditions. I have RA with spinal involvement and/or psoriatic arthritis (my RA factor was positive, but I also have back pain, which is supposed to be unlikely in RA; I also have psoriasis, and psoriatic arthritis does cause back pain, so my diagnosis is a bit up in the air at this point. An MRI also showed moderate osteoarthritis in my facet joints). Anyway, though ibuprofen helps with my joint pain, it doesn't do anything for my back. Sometimes I need to take an oxycodone just to get through work, or to get rid of the pain so I can go to sleep.
The last couple of times I was prescribed oxycodone was for back injuries. What happens when I run out? Do I lie and say I fell or lifted something heavy again? If I say it helps the arthritis in my back, they're just going to tell me to take more ibuprofen, which is useless, and taking loads of ibuprofen will kill my liver alot faster than just taking one oxycodone. Besides, the last prescription I had lasted A YEAR. There are times when I have to take one or two per day, but then I may go weeks without one. That is certainly not addictive behavior.
Our drug-phobic culture marginalizes and demonizes those who live with pain. Sometimes I wish the doctors would spend one week in my body during a back flare, and then try to tell me that I don't need pain meds.
Sweetie… Ibuprofen is on the very lowest rung of the pain management ladder. No wonder you're not getting proper pain control! You need to talk to your doctor about getting better pain meds, either anti-inflammatories or opioids. If your rheumatologist or family doctor will not give you the medication you need, ask for a referral to a pain management specialist. Are you on any medication for your RA? If you are, how is it working? One of the best tools for treating pain is to get your RA suppressed.
They say that RA doesn't involve back pain, but my spine is a mass of solidified vertebrae and hurts a lot when my RA is not well managed. Has your doctor talked to you about ankylosing spondylitis? It's a type of inflammatory arthritis that affects the spine. I'm not saying you have it, but if one of your primary symptoms is back pain, it may be worth having a conversation with your rheumatologist about it.
If your RA affects your work, you may also want to talk to your boss about ways to accommodate you in your job. Employers are legally required to accommodate workers with disabilities or chronic illnesses, so that may be worth having in the back that for the future. Check out my post on working with RA for more information.
thanks so much for your comment!
I have a tolerance for pain meds because I have been on Fentanyl patches and Vicoprofin for 4 years so I have had problems with being labeled "drug seeking' and ignored, especially after surgical procedures. An example: I experienced an unusual amount of pain in my newly replaced knee after I went home. I compared the pain to my experience with a first knee replacement 6 months earlier. I called the orthopedic group because I thought something was wrong and finally had to break through the system and contact the nurse case manager who handled all of my admission needs after the phone "nurse" (a certified sports trainer) told me flat out that I was only calling because I was a drug seeker, even after my PT had called and told them my knee was so swollen she could not initiate therapy. The real culprit was an accumulation of blood on the knee caused by the drain being accidentally removed too early but they would not listen to what I was trying to tell them. I then spent 11 hours in ER to get this diagnosis only to be told there was nothing that could be done about it After I switched pain phyicians, my new doc told me that he was unsure whether he could continue to prescribe my oral med because the three randon drug tests I had over the last 4 months showed none of the pain med in my system. He then went on to insinuate that I must be giving my pain meds to someone else. Only after I vehemently discussed how this was a false assumption on his part did he agree to prescribe the drug after all. Likely I have been taking less than required because I am afraid of being labeled. I am also quite overweight and the dose is likely too small for my size.
that's one of the problems with drug test - it's so easy to "fail" them and be labeled or even fired from your pain doctor. As you found out, it's really important to make sure you take the medication as prescribed to avoid questions about why you have less medication in your system that you should.
I spoke to a Canadian pain specialist about this issue a while ago and he said that he never used test that measure how much medication was in someone's system, but rather how many different drugs were used. One of the reasons that he doesn't do this is because he acknowledged that pain varies - some days are good, some days are bad.
The next time you see your pain doctor, you may want to bring in the list of questions about how to deal with this issue to establish a trust relationship between the two of you. For tips on which kind of questions to ask, see Karen Lee Richard's excellent post on treatment agreements. We also have a good post on what to do if your doctor terminates you. Speaking with your pain doctor about different issues and scenarios should hopefully prevent any situation that could lead to termination, but it's good information to have.
Thanks so much for your comment!
I suppose I was in that 1% of people who got addicted. I took my pain meds as my pain doctor ordered. Oxycontin and hydrocodone. I did not know that these opiates create their own pain. I was practically catatonic and had no life. When I asked my pain doctor when I could get off, he looked at me and asked why I would want to be in pain. I fired the man. Getting off opiates was one of the hardest things I ever did. I am very fortunate to live in a state where medical marijuana is available. When I am in pain, I can use it and instantly be relieved. More important, I can function. Cannabis works differently than opiates, where cannabis works with the endocannabinoid system in the body, it works quickly and effectively and is not addictive.
the best way to bring up this topic is to be honest. You have a good reason to express concerns and being forthright about it by asking his opinion about the issue is the only way to go. Explain your concerns and ask your doctor for his opinion. He is a rheumatologist and therefore presumably not an expert in being HPC positive. Perhaps it'd be best to first have a conversation with the doctor who addresses that aspect of your health to get their input on the risks acetaminophen poses to you. Once you have that information in hand, you have a basis for talking to your rheumatologist. You may also suggest that the two doctors connect to discuss the best options for treating your pain - as Mr. Lessin mentioned in my interview with him, collaborative relationships between the different doctors who treat you can be an essential part of getting proper pain management.
Self advocacy skills are important when you have a chronic illness, but when you're sitting in front of your doctor, it can be a bit intimidating. Coming prepared with a list of questions based on research you've done is a good way to start. Having a list gives you something to hold onto, ensures that you don't forget any of your questions and also very subtly shifts in control of the meeting to you - the person with a piece of paper often sets the agenda. This can be an effective way to start shifting your relationship to being that of a collaborative team rather than the more traditional or authoritarian doctor-patient relationship.
good luck! Please keep us posted on what happens?
Great arctcle. When I went to my Rhemy for my 1st visit of 2012 I was given a contract to sign that I was not going to go to any other dr and ask for pain medication and what pharmacy I would only to fill my precription for Hydroco/Apap at first I thought it was me, but the nurse stated it was everyone had to do it.
Because of the increased pressure on pain specialists and other doctors who prescribe narcotics for pain, more and more of them require their patients to sign treatment agreements. It can be a bit of a shock to the system, but it protects your doctor allowing them to keep practicing. As long as it is used with compassion and collaboration, it can work for both of you.
Thanks a lot for your comment!
I love this article and the comments. I am lucky to be given hydrocodone by my rheumatologist, who never questions my use of it. I will admit, even if I have some on hand I still call for a refill because of the same thing that one of you mentioned, that they check to see if you use it or not. I hate doing that, but I don't really have a choice. I don't refill each month and I only use one pharmacy, which is on file with each physician. I firmly believe if the pharmacies and physicians had a DB of who bought what and where and ordered by whom, run by an independent agency, they would not have to worry about people abusing...of course, that is my uneducated, humble opinion only. Thanks for a great article, Ms. Lene, and a great "discussion".
do you have a treatment agreement with your doctor and get drug tests? If not or if your prescription says "as needed," you should be OK. it's best to be open with your doctor and to talk to them about the fact that your pain levels very and you don't always need to take the meds. Them knowing how the medication works best for you will help them give you better care in the long run. Unfortunately, some people feel they can't be that open with their doctor because of their perspective and attitude towards narcotics. I hope yours is a reasonable one.
Hi Lene,
It's Susan Noel. Do you remember me? I am living in New York now. Just got back from 3 months in a rehab center where I got off all pain meds. I had been on them for 8 years, was having a terrible time using them correctly, and was worried about my mind. When I first got off them, it did feel great to be clear minded. But now, after 3 months, I am in close to unbearable pain, and don't know what to do. I see a new doctor in a few days, but am sure she will not want to give me anything for pain. I am so afriad that I have made a crucial mistake -- for exactly the reasons that you note in your article.
I'm very down now -- can't go out at all, it is painful even to get out of bed, and I can't get even comfortable.
Anyway, sorry to be so down, would love to be back in touch, as I still don't know anyone else with RA -- except my first love and longtime dear friend Jim, who died from complications from Embrel. (Am still rufusing the bio drugs after both Humira and Embrel made me so sick that life did not seem worth it.)
Hope youre doing well.
Susan Noel
glad to see your name on the site again, Susan! However, sorry to hear that you've been having such a rough time.
The first thing to remember is that you have a right to effective pain control. It doesn't matter if you have had a problem with addiction in the past, whether it was with painkillers or any other substance. You still have a significant medical issue that needs addressing. In fact, as was mentioned in this article in the one I wrote last year, not treating your pain is the biggest risk factor for a relapse that you can have.
When you see your doctor, when you print out of this post and the one I wrote last year about the issue. If your doctor appears to be a reasonable person, share the information with them. If it doesn't seem like a good idea, leave them in your bag to offer invisible support. If your doctor is not comfortable prescribing pain medication for you, ask for a referral to a pain specialist, preferably somebody who treats pain from a multidisciplinary perspective - effective thing control is not just about medication, but a lot of other techniques.
Earlier today, I saw my doctor's NP, whispering the words in addiction and I asked if she had any suggestions. She did recommend seeing a pain specialist and to talk to them about methadone. She also said that when you're treating pain long-term (i.e., for the rest of your life) in people who have had addiction issues, methadone can be a really effective alternative in treating pain and leaving your mind clear. She did say that it can take a couple of months to get to the right dose, but that it can make a huge difference in your ability to get back to living your life again.
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This is a great article, Lene. We need to talk about and expand our understanding of this "elephant in the room". People are afraid to ask for pain relief meds because they don't want to be branded a "drug seeker" which can be put on a medical record and stay there forever. I had an RD who thought I was a drug seeker...the first RD I ever saw. Had he not made me so angry and so marginalized, I might have pursed treatment more doggedly. I might not have had the permanent damage I live with today, because I am seronegative. I have learned and moved ony, but your article may help prevent this to happening to someone else. I really appreciate what you do, Lene!
V
Is one of the things that makes me really angry, this suspicion with which the medical profession treats people in chronic pain. I know that part of it is that the War on Drugs has essentially failed and has become applied to areas that should have been exempt, such as pain management. I talked to pain management specialist who described being under constant intense scrutiny by government agencies, making it really difficult for them to practice. I know of pain management specialists who are being forced out of their practice by such scrutiny, leaving countless people without any options. And I could go on…
However, I think, doctors have a responsibility to challenge their assumptions, just as Mr. Lessin did, and look at the reality of who they're treating. If more doctors didn't assume they knew everything, then people like you might not have permanent damage. It's shameful.
Thanks for getting me ranting today.
Oh, Lene,
Didn't mean to get you upset, but I totally understand, because it is outrageous. RA patients go to doctors, pay a big bill, only to be made to feel as though they are drug seeking and malingering. I was so devastated by this man, the first RD, that I was in tears when I left his office, and didn't seek treatment again until I could barely move and was in so much pain I was in tears. We can help others by sharing our stories and providing the most up-to-date information for people seeking a good RD and treatment. We can curse the dreaded disease, but we can also light a candle of hope and validation....once we get thru with our rants!
V
Lene,
Again, Great article!
Thanks for sharing!
Regarding this intense scrutiny that you describe Pain Management Specialists being under by government agencies - Because they are government agencies, there is no way around it, is there?
Therefore, the PMSs will continue to be afraid to do their jobs and will not prescribe the needed medications out of fear of these agencies, correct?
My PMS that I recently started seeing has said to me, "I am not going to continue prescribing these narcotics!" and I have only seen him only twice. I suffer from injuries to 3 of the discs in my neck. I have had several knee surgeries that were from injuries and from prior botched surgeries, and now I suffer from osteoarthritis of the knees. I was told that one of them needs to be replaced. I also suffer from arthritis of the lower back due to old injuries.
My quality of life is not very good without pain medication, but I function very well with the medication. I cannot take NSAIDs because I have suffered from a large ulcer that was caused by taking NSAIDs.
Do you have any suggestions about what I should do?
Thanks!
Pete
no worries, V - I love a good rant.
There's ranting about in politics and then there is the sadness comes when you know that someone you care about was treated badly and is continuing to pay for someone else's ignorance. You put a face and a fate on why it is so important to beat back the myths that surround pain management. Someday, I'd love to put you in front of Congress (and then on TV) to tell your story.
Hi Pete,
You essentially hit the nail right on the head. Most pain management specialists are very committed and dedicated physicians who know the importance of the treatment may offer. Unfortunately, the scrutiny and pressure that is brought to bear on them sometimes make good doctors go specialize in something else.
You illustrate the importance of proper pain management - with it you can be productive and participate in your life. Without it, you can't. Is your pain management specialist offering any alternatives to narcotics? If not, my best suggestion to you is to find another doctor, preferably somebody who treats pain from a multidisciplinary perspective. This includes medication, meditation, physical therapy, biofeedback, etc. If your PMS doesn't offer alternatives to narcotics, then he doesn't seem to understand the reality in which his patients live. If you don't have the option of finding another doctor perhaps this could be an opportunity for you to exercise your self advocacy skills and engage in a conversation with your doctor about the difference pain medication makes in your life - be specific, tell him how it enables you to work, to be with your family, to not be depressed and so on. Continue the discussion to ask about his concerns, get specifics, talk about how to manage these concerns. Perhaps a treatment agreement would make him feel more comfortable. It could be that having a constructive collaborative conversation would increase the level of trust, both in you and him and therefore lead to better treatment.
Additionally, I would suggest that you start sharing your story in different ways. For instance, write a SharePost on this site or our Chronic Pain site that we can push out through our social media channels to help raise awareness of pain, in becoming involved with the Chronic Pain Association or by writing your elected representatives telling them about what these myths are doing to the lives of people who live with chronic pain. Becoming an advocate by sharing your story won't reduce your pain today, but may help change regulations and therefore get you and others better treatment in the future. Besides, I'm a big fan of using righteous indignation constructively.
Lene,
Thanks so much for the very detailed response and links!
My Pain Management Specialist has not discussed options other than narcotics with me, at least not yet. I’ve only seen him twice so far.
I will have a discussion with my PMS when I see him in a few days. I’ll tell him exactly what you told me about the difference pain medication makes in my life, and also about his concerns and how to manage them. I already have a treatment agreement with him. It’s a requirement for everyone.
I’m also considering your suggestions for sharing my story. I’m not sure which way(s) I’ll do it yet, but I will share the story and possibly become involved with the Chronic Pain Assoc.
I appreciate your time and thoughts about my predicament! Thanks again!
Pete
Thanks, Lene. Ya know, since I am no longer working, and after I take some time to get my house and my life straight, I am going to look into advocacy for RA patients. I want to investigate what I could do to help educate the public, and our elected representatives. I will probably start with a letter writing campaing of sorts. IDK exactly, but I will find some way to help.
Hugs and Blessings, Lene.
V