Preparing for a doctor's appointment is important, especially since those of us with fibromyalgia and chronic fatigue syndrome can be so forgetful, and the stress often associated with seeing the doctor can make our brain fog especially bad.
But do your doctor's eyes glaze over when you pull out your list? Does he/she seem to get impatient by the time you get to item 5? A new survey sheds light on doctors' attitudes toward patients with lists, and it's information we can use to improve our doctor-patient relationships.
The good news is that 75% of doctors think appointments are more effective when we bring a list. However, 65% of them associate lists with longer appointments -- and that can pose real problems for them. Many of the doctors thought short lists, of about 3 items, was appropriate.
Most of us would count ourselves lucky to only have 3 problems going on at a time, but limiting ourselves to fewer complaints could really help in several ways, including:
- Identifying our biggest problems
- Focusing on the most important issues
- Not overwhelming our doctors
- Reducing the likelihood that the doctor will label us as whiners
What's been your experience taking lists to appointments? Have they helped you remember what you needed to ask about? How has your doctor reacted? Leave your comments below!
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I generally write up a short summary of what my condition has been since my last visit, and at the end, I give a few bullet points of what specific help I want from my GP.
Example:
* Please renew diazepam prescription
* Could I get a referral to a physical therapist for help with my shoulders?
* I need a doctor’s letter to that states .
I hand him what I’ve written, let him read it over, and then he can go on with questions or advice. He can read it faster than I can tell it, even if I didn’t have brain fog interfering. Plus the things like writing a letter or giving a referral, that he would normally do outside patient time, he now has already written down and doesn’t need to note it for himself. This makes the time at the appointment itself much more productive.
My appointment was yesterday and my rheumatologist who normally spends a decent amount of time with me, was in a hurry to go. I had 5 things on my list and only got to ask about 4. It was a disappointing visit, like there was nothing new that was interesting so he had better things to do. When I asked about my increasing memory problems, he ignored my question about ginkgo biloba and told me to just get more sleep. Yeah, right. He even rushed through the physical part of the exam, which was surprising. I don’t see him again until October. He did mention I should see my primary care physician about any other questions I had. I have already told him I haven’t been able to find a good PCP… I guess the honeymoon is over.
So what do you do when you turn up at the pain clinic only to find the specialists reading the wikipedia page you wrote to find out what on earth your co-disorder is?! – yup, actually happened to me, and I stomped in and got them to look at the authors details
– they took it well enough..
Not only does my doctor encourage lists, he records the whole session and his assistant puts it on a disc for me to take home, which is a tremendous help, since I forget important points. He does not get through my list all the time, but gets to the highlights. My fibrofog is worse at the Dr. office and this helps keep both Dr. and me focused.
I have a good doctor (internal med/alternative med) but most of what he thinks would really help me I can’t afford because they are supplements not RX. He has been treating me since onset 2007 but lately seems to be getting more “new age” and I got the impression he’s beginning to go in the direction of “mind over body”. He also doesn’t like to “disable” anyone because he thinks once thats done person declines forever. Can’t find a good doctor in my area for fibro. Frustrated……
I have only used a list one time in my adult life and it did help at that time. However, I don’t like to use a list in general because I would rather try to remember everything I need to discuss with the doctor. I had to try to make myself do that when my fibro at the time was trying to mess with my memory.
I have had friends tell me that I should keep a list but it doesn’t do me any good now. I do really good if I forget one or two items that I need to mention to them.
Thankfully with my rheumatologist when I have told him some things several visits back that were causing problems he will remember to ask me about them. And he did that at this last visit I had with him in Feb.
I have to always take a list to my doctor. If I don’t, I ususally forget something. I try to make notes a few days before my appointment of what I want to discuss. Sometimes it seems very helpfull to my doctor, and other times it seems like I am over-whellming her. However, I still take a list, because I am single/divorced and always go alone to all my doctor appointments, my tests… etc.. I have an Internal Med. Doctor, a Neurologist, a Psycologist, a Neuro-Psycologist.. etc.. so “I” have to remember what to ask, or tell, etc.. Bottom line, sometimes a list can be helpfull and sometimes a list can be a pain, so to speak to the doctors but I only have “myself” to look after “me”…. Sometimes, my doctors even right things down for me to take with me, so I will remember! Which is very considerate on their part.
I always have to take a list. I see my doctor once a month so sometimes the list isn’t but 1 or 2 things. Other times it may be 15. I’m lucky that my doctor likes for me to bring a list because she knows how bad my memory is. I start making my list as soon as something comes up after I leave her office.
Being able to present my family doctor with a list of three things would be a luxury for me. I live in a small city in Ontario, Canada, having moved here from Toronto a few months ago.
Firstly, I cannot register with a doctor. There is a drastic shortage of doctors here. I did manage to register with a Nurse Practitioner, who knows nothing about Fibromyalgia, and tells me that she doesn’t know any doctors here who do know anything much about it, let alone specialise in treating Fibromyalgia patients.
Secondly, Ontario family practitioners are now only paid by the Provincial government for two issues per patient appointment. This means that if I have a list of several symptoms that I want to discuss, I would have to make several appointments. With parking at $6 a pop, and an income well below the poverty line, I can’t afford to make all those visits.
My previous family doctor spent most appointments going over bloodwork results, and checking my blood pressure, or writing out a prescription. I’m frustrated, to say the least, but with the nurse practitioner, I am going to insist on discussing what I need to discuss.
I have to have my lists, my mind goes on vacation when I need it most (lol). I have a ‘memo pad’ in my phone, and since I don’t leave home without it, I have my list with me (it also helps when I remember something out-of-the-blue).
My PCP laughs when I start looking in my phone because he knows I have another list for him. It does help me, as I go blank when he asks me if there’s anything new or if I have any questions. This is the reason I ‘remembered’ to ask him about my dizziness getting worse, and was Dx’d as having Vertigo (yea, something else to take meds for the rest of my life).
I think that sticking to 3 issues is really the key. As a therapist, I get frustrated when my patients throw 5 topics at me that they want to discuss in the last 5 minutes of the session, so I try to encourage a quick discussion of how many topics we will be covering as soon as the session starts.
I have created a form I take to all my doctors; and they all have really responded to it. It lists my drugs, with notes/questions/the last changes made to the side as well as if I need a script that visit or not. Then it has a short summary area, with what my average pain, fatigue, depression, and ‘other’ symptom levels were like that month. Then I have an area where I write the reason for the visit, a few questions/tasks need done. And lastly, I provide a chart summary of my pain/fatigue/symptom diary from that month (and have the full diary available at the appointment if he wants to look at it). Lastly, there is a blank area for MY notes of what the doctor said/med changes/etc. Because I see so many specialists, each get’s one at every appointment, regardless if its the physiatrist, gp, or even my eye doctor. This way I have a record of all my visits to everyone. I can’t keep it straight otherwise. They are always impressed with my organizational skills, which has backfired a little. They think because I’m organized I’m not having cognitive issues — when it’s the exact opposite — I’m organized BECAUSE I have cognitive issues (fibrofog, etc). I do try to keep it to a minimum of 3; depending on how long I suspect each issue will take. If it’s a big problem, only 1.
And for new doctors, I have created a full health detail. It goes through my entire medical history since this started. It has my work/childhood history, so they can see how it relates to my illness now, a list of all medicines I’ve been on, and their results, list of tests/results, doctors in the past/present and their contact info., and a summary of how the illness has progressed. A detail list of symptoms. And lastly, what’s currently going on and what MY medical goals are. Depending on the doctor, I add handouts from The Fibromyalgia Advocate. Because of length, I send this 2-weeks or more in advance, never just show up with it at an appointment. Your doctor will run. But with how I do it, and the way it’s organized, with table of contents, my doctors all have really appreciated it. They find it easier to read then trying to dig through medical records from 10 year and god knows how many specialist. Sure, it’s 15 pages, but the records are 5 inches thick. Which would you rather read? They can always verify something by looking it up in the actual medical records (of which I also have, in a binder, should some doctor need it — I hate having to call old doctors all the time for records — so I keep my own copy and new doctors can get copies from ME)
It sounds like a lot, but I’ve worked on it for years, and have slowly got a nice system going. It’s become a must, otherwise I forget who I’ve seen, for what, what they said, what meds I’ve tried, why I stopped taking them, etc.
I should have said my doctors respond wonderfully to it…
I also should have said I keep this form/workpage on my computer. It’s set up with macros so when ever I have an appointment, I just open a blank one, and type in the answers and save it with the date/doctor’s name. My GP and pain doctor get copies of worksheets for everyone I go to, per their request.
And as for the medical records, it’s also all on a usb key. Both the records from doctors (scanned in), AND the worksheets I have. I take it with me everywhere, attached to my service dog, so if I have to go to the ER, I have everything they could possibly ever need; no need for them to try to call doctors in the middle of the night, etc.
Rebecca, Can I have a copy of the form you created? I am so impressed with what you have created. I have to change doctors due to change in my insurance. I have no idea what their understanding of Fibro/Chronic Myofacial Pain/Chronic Fatigue/PTSD/Anxiety Disorder is. I like the idea of sending info in advance of the appointment. I am so nervous they will not receive me well if I were to bring a long list with me. However, cannot possibly limit pertinent info to one page. Wish I could.
Appreciate your response as soon as you can
Lori