Have you ever had a totally disappointing experience seeing a specialist for help with chronic pain/fibromyalgia? I certainly have… many times. Fellow pain sufferers, we are fighting an uphill battle to be taken seriously.
I found this article today written by a rheumatologist on why he doesn’t want to treat fibromyalgia patients any longer. He basically sounds like a jerk… but a smart jerk. I’m posting the link to what he wrote because it provides a look into what some of these doctors are thinking while they’re brushing us off.
The article is by Dr. John Luetkemeyer, a rheumatologist in Florida who tries to “weed” fibromyalgia patients out of his practice as quickly as he can, unless they have proven “they are willing to do the things that might be successful in improving their quality of life.”
I’ve never met Dr. Luetkemeyer, but I might as well have. I feel like this letter could have been written by any one of the many unsympathetic doctors I’ve seen over the years. Unfortunately, I’ve gotten this kind of response from people in multiple specialties, including pain management, the specialty he suggests ought to be responsible for fibromyalgia patients. He makes a good point though, that pain specialists might be more effective “if only we could get them to put their needles down long enough to actually treat the pain and the patient.”
*****
There is a great rebuttal at the end of the piece, written by Dr. Murray Sokolof. I’ve obviously never met him either, but he sounds like my kind of doctor. He writes, “I found many of Dr Luetkemeyer’s remarks and opinions quite disturbing and even offensive. He certainly does not speak for me.” Right on, Dr. S.
The most interesting part of the whole piece, I thought, was Dr. Sokolof’s reference to opioid pain medications. He says,
“It has occurred to me that if I were not able to use opioids in the management of fibromyalgia, then I, too, would lose interest in taking care of these patients. Opioids are to fibromyalgia what corticosteroids are to rheumatoid arthritis. We try to avoid them if possible, but when they are necessary—which is often—we should employ them. Maybe, just maybe, Dr Luetkemeyer refuses to give these patients opioids for whatever reason. If that is the case, I could understand his frustration and his decision not to treat these patients.”
Yes. That summarizes my thoughts on opioids exactly. They definitely have their drawbacks, but when you are in extreme pain, there is simply nothing that will compare to them, or take their place. I do not take them on a regular basis, but they were a godsend when I hurt my back a few years ago.
The reason I am sharing this article with you is that most doctors, in my opinion, think like Dr. Leutkemeyer. They might be a little bit nicer than him, but I think most of them think that there are simple lifestyle changes that fibromyalgia patients need to make, like exercising more or sleeping better, and that all of their symptoms will get better if they make those changes. He writes,
“If fibromyalgia is the label to be used, it is my belief that ‘a jog around the block or 20 laps in the pool can make a dent’ in the low pain threshold and poor sleep pattern hypothesized in fibromyalgia. I also stress the importance of patients being responsible for their therapy (exercise, stress reduction) and not to rely on my prescription pad.”
I mean, exercise and adequate sleep are both great, but for many people, it is never that simple.
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I found this article interesting simply because it’s best to know what you’re up against. Know your enemy, they say. Don’t feel bad about yourself, or take it personally if a doctor gives you the brush off. He had already made up his mind about fibromyalgia sufferers long before you walked in the door.
Does this article remind you of any doctors you’ve met in your own life? Were they helpful/not helpful? Let me know what you think!
**Update: I think some readers might be having trouble with the link. If you’re getting stuck on a log-in screen, try Googling “Rheumatologists should not deal with fibromyalgia” (the title of the article). Medscape is so weird sometimes, it’s like you can gain access if you come from a search engine, but not from a direct link. Why that is, I wish I knew.
**The photo I chose for this post made me laugh. I believe “Know Your Enemy” comes from Sun Tzu’s “The Art of War.” Thanks to Bob Massa on Flickr for making the photo available through Creative Commons.**
Sammi
February 17, 2013 at 11:33 pmI think a lot of these same things can be said for physicians and neurologists treating headaches and migraine. Many just find simple resolutions in drugs and brush patients away, until they build an immunity to those drugs and need to find new solutions.
sunlight in winter
February 17, 2013 at 11:49 pmYes. Once you’re dealing with something that doesn’t show up in an X-ray, or an MRI, or in blood tests, it seems like you’re in the gray area that a lot of doctors don’t want to deal with.
Sammi
February 17, 2013 at 11:33 pmI think a lot of these same things can be said for physicians and neurologists treating headaches and migraine. Many just find simple resolutions in drugs and brush patients away, until they build an immunity to those drugs and need to find new solutions.
sunlight in winter
February 17, 2013 at 11:49 pmYes. Once you’re dealing with something that doesn’t show up in an X-ray, or an MRI, or in blood tests, it seems like you’re in the gray area that a lot of doctors don’t want to deal with.
Becky
February 17, 2013 at 11:40 pmA jog around the block. A JOG AROUND THE BLOCK. HAHAHAHAHAHAHAHAHAHAHAHA!
If I could jog around the block I wouldn’t need a rheumatologist or opioid pain medication. Because I would not be in pain. 20 laps of the pool? Buddy, I’m 38 years old, and I’m lucky to make it through a water arthritis class, walking back and forth in the pool with women twice my age. Maybe there is the occasional patient who can’t be bothered to try to help themselves. And maybe some of us are so worn down by pain and fatigue, and the depression cause by pain and fatigue, that we can’t face the possibility of making changes until something, somewhere improves. Most of us are trying things in addition to the drugs to feel better. And we’re all doing the best we can with what we’ve got in the moment. It would be a lot easier if the professionals we went to for help would, yanno, help us.
sunlight in winter
February 17, 2013 at 11:52 pmMy thoughts exactly. I think I’ve given the same speech a number of times (to my mom in the car on the way home, that is!)
Becky
February 17, 2013 at 11:40 pmA jog around the block. A JOG AROUND THE BLOCK. HAHAHAHAHAHAHAHAHAHAHAHA!
If I could jog around the block I wouldn’t need a rheumatologist or opioid pain medication. Because I would not be in pain. 20 laps of the pool? Buddy, I’m 38 years old, and I’m lucky to make it through a water arthritis class, walking back and forth in the pool with women twice my age. Maybe there is the occasional patient who can’t be bothered to try to help themselves. And maybe some of us are so worn down by pain and fatigue, and the depression cause by pain and fatigue, that we can’t face the possibility of making changes until something, somewhere improves. Most of us are trying things in addition to the drugs to feel better. And we’re all doing the best we can with what we’ve got in the moment. It would be a lot easier if the professionals we went to for help would, yanno, help us.
sunlight in winter
February 17, 2013 at 11:52 pmMy thoughts exactly. I think I’ve given the same speech a number of times (to my mom in the car on the way home, that is!)
lucybythesea
February 18, 2013 at 7:22 amyes, i know these kind of doctors all too well. They give you some booklet which basically says do graded exercise and practise sleep hygeine – and if that doesnt work then tough. Useless. The only real help and understanding ive had was from a physio. its no wonder people with chronic pain have to try complementary therapists aswell -they get so poorly treated in mainstream practise. Just because we cant instantly feed the doctors ego by being ‘cured’ with one prescription.
lucybythesea
February 18, 2013 at 7:24 amBtw Dr Leutkemaer can kiss my ass – lol.
🙂
sunlight in winter
February 18, 2013 at 8:50 amHahaha… mine too.
lucybythesea
February 18, 2013 at 7:22 amyes, i know these kind of doctors all too well. They give you some booklet which basically says do graded exercise and practise sleep hygeine – and if that doesnt work then tough. Useless. The only real help and understanding ive had was from a physio. its no wonder people with chronic pain have to try complementary therapists aswell -they get so poorly treated in mainstream practise. Just because we cant instantly feed the doctors ego by being ‘cured’ with one prescription.
lucybythesea
February 18, 2013 at 7:24 amBtw Dr Leutkemaer can kiss my ass – lol.
🙂
sunlight in winter
February 18, 2013 at 8:50 amHahaha… mine too.
Favorite Posts from My First Year of Blogging: Part One | Sunlight in Winter
February 27, 2014 at 5:22 pm[…] Know Your Enemy—I stumbled across an opinion piece on Medscape.com written by a rheumatologist who says he intentionally “weeds” fibromyalgia patients out of his practice because they do not “interest” him. […]
Favorite Posts from My First Year of Blogging: Part One | Sunlight in Winter
February 27, 2014 at 5:22 pm[…] Know Your Enemy—I stumbled across an opinion piece on Medscape.com written by a rheumatologist who says he intentionally “weeds” fibromyalgia patients out of his practice because they do not “interest” him. […]