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21 Responses to “IOM Pain Report Relieving Pain in America Gets Mixed Reviews”

    1. It is pitiful that in the year of 2011 we even have to be having these discussions. I mean really? Look what true research, development and implementation did for Apple over the years. Now why in the world can’t we make better progress with pain management? Perhaps because there are too many hands in the cookie jar? And not only have we made little progress with pain management…not one single thing has changed in my personal treatment of my ra over the past 13 years…not one. Something is just wrong with our system here. Drastically wrong. I am not a pretty simplistic person myself but I can say for sure that I know I can come up with a better 360 degree treatment approach to ra then what is currently offered and that is pretty sad in my book. It is truly time for change.

    2. Marianne Marden says:

      Does my rheumatologist understand my pain? or pain management? NO! He told me 2 1/2 years ago, “I’ll do your pain management”. Started me on MS Contin 15 mg twice day and Vicodin for breakthrough pain. Every visit since then, and especially with changes in my RA med and improved joint swelling, I have been asked, “is it time to get rid of the pain medication?” I also have OA and worsening degenerative joint disease of my entire spine. Just last month, in order to get good pain management, I had to go out of state to a specialist certified in pain medicine and anesthesiology. Best decision I have made yet!

      • Good for you Marianne. Finding someone to treat the pain of RA is a big part of the battle.

        They will look at lessened swelling and assume the pain, weakness, joint instability are all better now too. They honestly do not understand how RA may be affecting all the joint tissues, even when the swelling becomes visually improved. Studies show there is actually synovitis and/or bone edema even when the clinician sees no swelling: http://rawarrior.com/rheumatoid-arthritis-swelling-take-two/

    3. Lene says:

      whether rheumatology was left off the panel for the reasons you state (and I agree with), who knows. But for a specialty that routinely tells patients that they treat inflammation, not pain, well.. I see more and more people with RA who have difficulty getting adequate pain control, the numbers who don’t get their pain treated by their rheumatologist, but how to go to the family doctor or a pain specialist (of which there aren’t many) seen to be increasing.

      as for that quote… “Deal with it”?? I’d like to give that guy just one week of moderate RA pain and see how he dealt with it. That sounds dangerously close to that underlying sentiments that so many doctors throw our way, the one where we are supposed to control our pain with the power of our minds.

      • thanks for the fantastic comments – I can’t say for sure, of course, but when a profession tends to back away from treating something – like pain – and a large percent of pateints go elsewhere – the gp or the pain doc or whatever – and many patients tell us they just wait to get better and do not have relief – then it should NOT be surprising when the specialty is not perceived as pain specialists and included in the panel.

    4. Becky Smith says:

      Don’t know if it is just a VA thing but my rheum would not give me pain meds, had to go to my primary. Of course I couldn’t see my primary for three months but hey that’s the way it goes with the VA.

      Newest twist – I lost my qualification for free care because I made $400.00 over the limit last year. Of course this year my income is the lowest ever but that doesn’t matter. So no more visits for me this year and I have to choose which meds I can afford on my unemployment. Life gets so interesting some times… It’s been like a comedy of errors only I’m not laughing any more! I guess for some reason God wants me to see this side of things so I just have to roll with it, learn what I can and move on. Positive side, I can reapply Jan 1.

    5. Katie says:

      As always, I want to stand up and applaud you in your writings. You are simply amazing.

    6. Bonnie Knight says:

      Went to see my Rheumy yesterday when I discovered that office had a new receptionist who was completely clueless about the patients she was supposed to be helping at the window. I found her to be curt, disrespectful, condescending, and downright rude. She was a pretty young thing – probably just happy to have a job, never considering where she was actually working. There was a sign taped on the window stating that my Dr. was running about 60 minutes late – nothing unusual for him, but that’s a good thing – he listens and lets us talk as long as we need to. I like that. So, I asked the new girl if Dr. N was still running 60 minutes behind since I couldn’t help but notice that the waiting room was nearly empty except for me and, I think, 2 others. Looking at me as if I’d lost my mind, or I was a complete and total moron, she stated that she didn’t know, she’d have to ask his nurse. So I told her the reason I asked and mentioned how few people were in the office, and let her know that logic led me to believe that the 60 minutes behind rule for the day was no longer in effect. And then she seemed to get highly agitated with me for asking – and repeated herself, stating again that she did not know and would have to ask Dr. N’s nurse, her irritation and disgust at my statement plastered all over her pretty young face.

      Another of my Drs. had recently changed me from one med to another which has left me a little foggy brained for the time being. It happens. It’s one of those “wait and see” kinds of things – stay the course, see what happens, if it doesn’t get better we’ll switch back. So I had forgotten if I was supposed to go sit down and wait for them to call me back to the window, as some offices do, or if I was to stand at the window and wait for her to open it up and speak to me – which is what I had done. I’d already written my name on their list outside the window – it being the only name on the list. So new chickie opened the window and said, “Can I help you?” Well, I thought, of course you can – why else would I be here? Dr. N and the rest of the team initiated these laptop type orange things to replace the paper questionnaires we always got before these orange computer things arrived. I actually like them, some folks don’t, but there is one problem with these things, whatever they’re called. They’re heavy as all get out! Hard to hold, hard to carry, particularly if one is having a pain laden hands/fingers/arm/wrists/elbows/shoulders day. So I asked new little cute young chickie for one of the orange things so I could get on it and start answering the many, many questions contained therein. With a look of indignation on her face, along with her obvious disdain for my “utter stupidity”, she asked me what my name was. What? My name, little new chickie, is written on the list right in front of your nose, I thought, but told her anyway. And then she began asking me a lot of questions that were all contained in the orange computer thing already – which kind of ticked me off, in addition to her lousy attitude. But I answered all of her questions – my birth date, my husband’s name, his birth date, my insurance company’s name, etc., etc., etc. Then she asked for and got my driver’s license and insurance info – information also contained in the orange things. Redundancy at its finest – this chickie is not going to make it here, was my internal reaction. Okay, I’ll play the game and answer all of her questions, give her my ID and insurance card and play whatever game she was onto – whatever that was – probably the new kid on the block game, with a large dose of “I work here and know exactly what I am doing and you are just a patient – I know best.” Hahahahaha. Finally, she handed me the heavy orange thing and I found the most comfy seat in which to park myself and begin the task of tapping answers onto the screen. Okay. I got that. But before I was even halfway finished, Dr. N’s nurse, a sweet, cheerful, understanding human of the finest sort, came out the door and called my name, so I hauled myself out of the comfy chair with a little extra effort, and hauled the heavy orange thing with me to exam room 1. Wow – I’d not been enthroned in room 1 in quite a while. I was impressed! He’d made up all of that 60 minutes behind he’d been running and was up to speed again. My logical deduction had been exactly correct – nearly empty waiting room does equal nearly null waiting time. I’m a now also a genius – besides being a pain laden patient who has been “stepped on” by a new receptionist chickie. But I’m okay with it all so far. Not usually very aggressive at all, so I let it slide for the mean time and proceeded to answer more questions from Dr. N’s nurse – most of which I’d already answered on the heavy orange thing. Then, and still before I finished answer all the now annoying questions on the orange thing, Dr. N pops into the “roomette”, sees that I’m still working on these many questions and decides to go down the hall to pop a shot in another customer and come back to me. Still all okay with me. He’s not gone long before he reenters my “roomette” and starts asking me questions – more of the same as on the heavy orange thing and as the nurse asked, but that’s okay – Dr. N is my buddy and takes good care of me. He also is patient with me and my many questions for him, my constant internet searches for answers which create even more questions for him, and my never ending desire to find a better way to handle this RA thing (get it the heck out of my life is more like it, but we all know the answer to that). I tell Dr. N all about the new memory foam mattress topper I just got which makes my nights ever so much better and my mornings much less painful and stiff. I tell him about my left foot still being half numb, especially the toes, and the nodule on my big toe, left foot, that the pedicurist tried to scrub off last time I was there – OUCH! – it’s not a callous – now we know that for certain, at least. I tell him about the above ground pool we bought this summer, mostly for our grandchildren, and how the waffle float is great for relieving back and joint pain if I float around on it for a while. I tell him about the new sneakers I just bought online and how comfy they are, but also that they run a little short and a little narrow and that I should have ordered a 1/2 size bigger and the extra wide rather than the wide, but even so, they are better than what I had and could no longer wear since the RA has enraptured both feet and is loving them both to pieces but gradually ending my love affair with my shoe collection. Most of them are now too narrow and hurt my feet – so very sad to me. I am a shoe freak of the worst sort. I show him the cool little cushion things I found online that slip over the foot and protect the balls of the feet and the rest of that part of the foot, particularly the Morton’s Neuroma part between my 3rd and 4th toes, right foot this time, and tell him how inexpensive they were so I got 5 sets of 3 each. You never know if they’ll still be available next time, so just to be sure, I buy enough to last a year. Works for me. I tell him about the problem I’m having with the back of my left ankle, how it feels like it’s being over-stretched when I walk in my negative heeled shoes (like flip flops, Crocs or Birkenstocks, which are comfy when nothing else is any more) that take the pressure off the front part of my feet where it hurts so much with regular heeled shoes – and certainly not high heels – can’t wear them any more at all. I think he says it’s the flexor tendon that is overstretching with the negative heel shoes and that maybe I need to wear my new sneaks for a while instead. Okay, I can do that – as long as I don’t wear any winter socks with them ’cause if I do they’re going to be too tight and maybe I need to order another pair for winter – 1/2 size longer and the extra wide rather than just the wide so I can wear socks and not freeze my poor aching feet to death when it turns cold. Okay, I can do that, too. I tell him about our visit to the pool place to get more chemicals and ask about winterizing the pool, sigh of sadness at summer’s end, and about the conversation I had with our favorite pool supply gal about the hot tubs and how much better they have made my aching bones feel in the past. I tell him about her suggestion to get an Rx from the doc to see if we can get the insurance company to help pay for a hot tub with a whirlpool thingy in it, since that’s the only kind she’s seen them ever offer to chip in on. And Dr. N, bless his huge, understanding heart, writes me an Rx for a hot tub. (Where we’d put it if I was able to get it is another question entirely – but I have always wanted a deck and have always been told we’d build one – maybe this is my chance at long last to get that deck. So my brain is now going into thinking mode trying to figure out where to put this hot tub of my dreams until that deck materializes (not holding my breath here) and I think – camping tent! Surely that would work for the meantime – why not?) IFF (if and only if), the insurance guys will help me out with that not tub thing – big if there. Huge “if”.

      Dr. N, what a great guy, and I finally wrap up our “conference”, I take my Rx and head to the checkout stand to get my receipt for payment (which I’d already made on the heavy orange thing – which is really neat and cool if you’re into techno stuff, which I am) and there sits little miss new chickie next to miss not new chickie, trying to learn how to check me out. I find myself with a wonderful opportunity to let her know exactly where she is working and how she can best learn to keep her job there, if she wants to, that is. And so I do – when miss not new chickie finishes checking me out, makes my next appointment and hands me my receipt for payment. Little new chickie looks up at me with such a sweet, but phony, smile on her face and I have the nerve, me – of all people, the non-aggressive, formerly too shy to open my mouth person – to open my mouth and speak to her about her attitude and her demeanor. This is a major breakthrough for me, I have to tell you. I don’t usually open my mouth – or haven’t in the past very often. And usually when I do open my mouth, it’s only after I’ve taken all I can possibly take, held it in so very long that it has festered, come to a head, and is now about to explode all over you – and so it usually does. But not this time – I see this as an opportunity to help her learn how to do her new job, which I am now certain is the case since she is being shown how to check me out – a dead giveaway, on top of her lousy attitude at the window upon my arrival. I’m handed all the paperwork along with my next appointment “card” – and I use that term loosely since they no longer use cards, they use thin paper “receipt” type things that pop out of the computer when they finish making the next appointment – automatically generated by their new “system”, as I’ve been told often after voicing my opinion of this little “receipt type” appointment card – which I detest. It has no substance – and it will not stick in the dash of my car very well at all – the most important place to be if they want me to remember to come when I’m supposed to. Otherwise – zip, nada – if it’s not in my permanently etched into my head and not in front of my face on the dash, it’s not happening’. I like appointment cards with substance – those will stick in the dash right in front of my face very nicely. Anyway, I have all my stuff and can now head back to the lab so the blood suckers can take another couple vials for tests, tests and more tests – and I hesitate long enough for little new chickie to ask me if there is anything else I need. The door is now wide open and I can step in, or I can step away. But I’m not stepping away this time – I’m talking to little new chickie about her bad attitude, her obvious opinion that I am a moron of the worst order, and lack of empathy for the people she’s supposed to be helping here in this Rheumatology practice. Thing is, I’m talking to this gal, and I’m not screaming – not even a little bit. But I am thinking and I am choosing my words carefully so as not to make her jump all over me as I am ever so kindly jumping all over her – without her knowledge or consent. I am proud of me! I am not screaming! YAY! But I am thinking, and choosing my words, and telling her this: “Maybe I can help you learn how to do your new job.” She’s surprised that I know she’s new –which I think is funny since it’s so obvious to me. So she says, “Sure – that’d be okay.” And I’m off to the races, so to speak.

      “Let me just say this,” I tell her, “Everyone who comes into this office is in some kind of pain. They don’t like it, they don’t want it, but there it is. What we all need and want is someone who understands that we need hugs, not just physical hugs, but mental hugs as well – ‘cause sometimes hugs hurt. We like it when we know that everyone in this office understands that and treats us with kindness and understanding along with a dose of empathy.” She slowly lowers her head and I can see the blush rising on her face – she knows she was unkind to me – and probably others who came in that day, or other days. I see that right off the bat. She does have a conscious – that’s good – so I continue. “Most of us have a lot of doctors and a lot of meds we have to take so we can keep moving and not get stuck in a wheelchair. That’s the last place we want to be. But to stay out of that wheelchair, we have to come here. And when we do come here, we love it when our nurses, our doctors, our receptionists treat us with kindness and mercy. We like to get the “candy”, not real candy, but I think you know what I mean. Most people we know don’t understand the aches, pains and tiredness we often feel, nor all the meds we have to take to try to keep all that on the shelf as long as possible, so it makes life easier when we come here where everyone knows and understands those things without us having to tell them every single time. I know you want to do a good job, so I thought I’d just try to help you out a little – so you’d better understand where you work and why we are all here.”

      She lifted her head and looked at me with an unspoken apology on her face and said, “I understand.”

      I certainly hope she does – especially if she hopes to keep her new job. I know that I’m not going to let her treat me badly ever again. I may be kind of old now, I may look like older than my years quite often, but I am certainly not stupid, as she seemed to think when I first arrived. But I am sure she realized how “not stupid” I am when I left. And I hope she realizes that her job is not only to check us in and get the info straight, her job is also to give us all some of those non-physical hugs every time she sees us at her window whether we remember to go sit down and wait for her to call us back up there when she wants us or not. We have a lot of stuff on our minds every day, all day – and we often see a lot of different doctors, all with their own favorite office procedures. We can’t remember them all or which does which every single time along with remembering when our appointments are, which meds to take when, which meds to take before or after eating, which ones to take in the morning and which ones to take at other times of the day or night. It gets overwhelming at times and mostly we are doing great to show up when we’re supposed to do that. If only we could all afford to have a secretary to keep up with all these many things for us – then our minds would be free to recall which doctor’s office has which check-in procedure. That would be the easy part. If only…………….

      • Danice says:

        Bonnie, such a beautiful story! In a manner of speaking of course 😉 If only we could all speak like that to all the people we come across that don’t understand or recognize what we go through every second of every day… Thank you for educating one more person (that should’ve known already lol) & you did it quite elegantly!
        Prayers & pain free hugs to you!!

      • madi15 says:

        Such a good story and you handled it so well.We’ve all been treated that way, I think . . . I’ve ignored it, I’ve gotten good and mad about it, but I’m not sure I’ve ever handled it quite that well. Talk about brain fog — I’m not sure I’ve even thought about solving it in the way you have.

        Thank you — I have definitely learned something.

    7. Danice says:

      Pain management and the real issue of pain has always been a “debate” in the medical field-for reasons unknown to us of course- When I was in nursing school for my BSN-RN, we were taught to treat the patient & pain was a major part of that. Unfortunately, throughout my journey with RA I haven’t seen that with the Drs or some of the nurses either- One rheum I went to denied I had pain bc at the time my RA factor was negative (2 yrs after being positive) while SED elevated & he didn’t examine joints or ask if I was in pain. He believed I was a “drug-seeker”, like many in this area do if you claim you are in pain, especially if you can’t see the swelling, deformity, or redness & inflammation. As a matter of fact, any pain clinic in this county will not prescribe any meds stronger than tramadol for example. I have to go to another county to a pain specialist so I can have pain management to get out of bed & hopefully walk to the kitchen each day.
      The main issue with pain management is doctors and hospitals having a prejudice with pain they cannot see & God forbid if you aren’t on an expensive insurance, then they won’t believe you at all. It’s sad & so very heartbreaking for those who can’t afford to go to a different dr. I barely can- I pray for all of you with RA & God bless you again Kelly
      We must keep fighting this stereotype of “the pain is all in your head”!

    8. kmom says:

      Postblog: One more twist. The Rheumatology News piece includes this: “You cannot control pain if the patient does not deal with it,” Dr. Altman agreed. “If a patient doesn’t have an investment and take control of their pain, they are not going to get better.”

      Doesn’t this remind you of “blaming the victim”?! It also is a statement of our culture—we are to take control of our health. Loose weight and exercise and we won’t cost so much! (because our medical expenses are also somehow our own fault!
      How can we not be “invested” (?) in our own pain? We take control of ourselves every single day.

    9. Laurie says:

      I had my rheumy appointment Monday. I have seen the same Dr. Since 2003 and I love her, she is very understanding and treats me a a person (I have been an RN 32 years and i can tell the difference) She has handled all my pain relief to date, ultram for daytime, and percocet for night. I am not a big pill person, so I also use Lidoderm patches,Voltaren gel and Biofreeze before the narcotics. She also manages my fibro with lyric and RX for therapy.
      Starting January 1 we will have to go to a pain management physician at a rehab center for pain meds. I don’t mind, as the Dr. she referred me to someone who is very well known and has a great reputation though both hospital systems in Orlando..
      During the state of FLorida’s crackdown this year of unscrupulous pain management “pill mills’ the state Legislature determined categories of physicians who can order pain narcotics…and rheumatologists are not in that group. Other than surgeons and orthopedic doctors, I cannot think of any group of physicians who treat patients with pain. I am of the group who feels that the more doctors you see, the less they know about you..

    10. Luanne says:

      Dr. G only reluctantly offers pain relief with Lortab. She prefers my PCP take care of it- but Dr. K refuses to give ANY one pain meds.

    11. dave says:

      Well the IOM report is more or less a thinly veiled occupational strategy to promote pain management. Note well how the IOM report indicates they dont believe in cures for pain. Research shows that up to 20% of people with rheumatoid arthritis become disease free and 15% of migraineurs become disease free, as well. With 7 of 19 members of the report from the APS and most of the committee were doctors- the report reflects their interests rather then the public good. And which one of the members of the study has written to the federal government or a state legislature in support of doctors being required to have education in pain care? I can name more then a few IOM committee members who refused to do so. Lets face the facts the IOM is not broken up about the sorry state of affairs in pain care today. It is up to people in pain -and those who care about them to require all doctors to have adequate education in pain care and for their to be an enforced standard of care for people in pain. Until then more and more reoprts will come out about poor pain care-and those reports wont even evoke a yawn from doctors as they arent interested enough in pain care to bother to read the reports.

    12. Dana says:

      Thank you Bonnie Knight for sharing. I laugh and cried while reading what you had to say. Thank you for helping me see I need to speak up for myself in a nice way.

      I have RA,OA,FM and great pain. Dx with JRA at 18 moonths and now 48 yrs old. When I was seeing Rheum, he did not want to give much since I was so young, mostly aspirin and said I would maybe out grow the condition. Also blamed my mom for doing something. Are you and your husband quarreling in front of her? Mom told me she said no. Rheum told her you most be doing something.
      I remember from 4th grade – 6th grade I did not see anyone for JRA. I asked my mom to take me the arthritis dr. when i was in 7th grade. She did, told Rheum been long time and she thought I needed a check up. Rheum told her do not bring her here. I do not need to see her. Then he did blood work, x-rays, look at my joints and gave me a treatment of heat applyed with something like ultra sound wand on my neck and info. how to hold my neck, bone was curved and some day it would give me problems. Neck pain was why I wanted to go to the dr..
      In 1994 I started seeing Rheum as pain so great I need help. Mom told me I would find out what she went through.
      Thank you so much Kelly for all you do.
      Someday when I get a little better and can I want to help make a difference too. Meanwhile Thank you all for making a difference and sharing to help guide my along in this journey, if not had been for you I would not be getting the help I need.

    13. Dorothea Lack says:

      In my opinion, rheumatoid arthritis pain does not meet the criteria of “chronic pain” because it is an ongoing invasive disease process. The term “chronic pain” was intended to encompass conditions that were not progressive and did not involve ongoing disease process. When the disease process is ongoing, the pain involved is “acute” not chronic, and, as such, does not meet the “chronic” criteria.

      • I agree completely. RA is usually an un-ending series of acute situations. The pain seldom remains in the same location, for the same cause, or in the same conditions. Thank you for bringing this up. It is a basic misunderstanding of the actual experience of the disease process. Have you read some of the other posts here on pain studies? If you have time, I look forward to your response.

    14. Susan says:

      Thank you for this blog post….the comment that sent me over the edge was the comment that we are somehow supposed to “take charge of our pain?” OMG…like we are supposed to out on a happy face when we have to crawl to the bathroom in the morning? When we see ourselves losing function and a decent qaulity of life? Just what are they thinking? It is a clever way of blaming the patient rather than them taking responsibity for the very important part of our care…which is pain control. But first they have to realize that we are in that much pain….? We have a long fight ahead of us…making medical professionals understand or get it….thank you Kelly for your fight….and everything you do!

    15. KarlaR says:

      I have huge issue with the idea we have control over our pain. My doctor has tried several times to tell me I should go sswimming.I cannot afford a pool membership as I am a single mom. I cannot go over to the high school at 7:30 at night…after working all day I am in bed by then. They just don’t get it. I will never forget my GP saying I shouldn’t need pain meds because then my doctor wasn’t controlling my disease. I couldn’t believe it! Maybe they left rheumatologists off the panel because they don’t even take us seriously which is really sad.

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