I'm just a few days away from my first appointment with a new primary care doctor. I'm trying not to be too hopeful or too pessimistic, but I keep going back and forth between the extremes.
Most people with fibromyalgia or chronic fatigue syndrome will know exactly why. Like most of you, I'm worried about:
- Whether she'll take my illness seriously,
- How she'll react to my long-running narcotics prescription,
- How she'll feel about my lengthy list of supplements,
- Whether she'll support my choice of treatment options,
- Whether my list of current problems will overwhelm her or make her think I'm a hypochondriac.
The pessimistic side tells me that I'm overdue for a problem doctor, since I've been incredibly lucky so far. I really don't want to lose my painkillers, though, and the thoughts of that happening make me pretty nervous. I've been on the same dosage for 6.5 years without ever asking for an increase or an early refill (unless I had extenuating circumstances, like a dislocated knee cap.) Those factors should work in my favor, but you just never know how a doctor will view long-term opioid use.
My hopeful side tells me that I can trust my clinic to hire great people, which is why I've had good experiences thus far. Also, I had my choice of 3 new doctors, and I specifically chose this one because she listed women's health and chronic-disease management as her primary areas of interest. Those are good signs.
If I could just go in for a standard introductory appointment, I probably wouldn't be too worried. But it's never that easy for us, is it? Even though my fibromyalgia is in remission, I have several issues to discuss. I quite certain my thyroid meds need to be upped. I've got a new-ish problem with excruciating pain in my tail bone. I'd really like a tens unit for my muscles that refuse to relax. I've had 3 sebaceous cysts lately. And sometimes when I stand up, I get an odd pressure on the back of my neck that causes my hearing to cut in and out in time with my heart beat. Yeah ... not exactly your typical first meeting.
What I try to do in these situations, and it's worked so far, is be really matter-of-fact about things. I make sure not to whine or sound emotional. I slip in a bit of medical terminology - enough to let them know I'm educated, but not enough to sound like I think I know everything. I listen attentively to their treatment/management suggestions and calmly explain why I made my choices. And I tell myself that if I'm being treated badly, it's OK to just walk out and go complain to the boss.
Anyway, wish me luck. I know I'll be increasingly on pins and needles until the appointment is over!
What have your new-doctor experiences been like? How do you approach an introductory appointment? What concerns do you have when seeing someone new? Leave your comments below!
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I just started with a new PCP last week and it went surprisingly well. This sounds kinda brown-nose-y but it works… Use the phrase “What do you think about—”
It appeals to the doctor’s ego and it also lets you know where they stand on issues that concern you.
If they have a blank expression on their face, it’s not a good sign. When I was asking my rheumatologist about substance P and excitoxins, he couldn’t answer any of my questions. He finally admitted his specialty is RA and he doesn’t keep up with fibromyalgia studies.
This new doctor told me right off the bat that he knows I know way more about fibro than he ever will, but he is willing to work with me.
COOL!
My experiences are similar to most; and I often do what Shawna speaks of (“What do you think about ____ ). Playing dumb gives me lots of info about what doctors think.
Best of luck, Adrienne!
Hi Adrienne!
Have you considered a “pain contract”? I’ve had CFIDS/ME/fibro since 1975, not diagnosed until the late ’80′s. My neurologist eventually put me (as well as a few other patients) on a pain contract. Since that time the pain contract has followed me through several doctors over the many decades. Doctors love it as do patients. I recently wrote about it on my blog.
Good luck with your new PCP! They are so very important in our lives!
Irene
My description of the “pain contract” can be read at http://laughingfrommysickbed.blogspot.com/2012/07/the-pain-contract.html
I hope this helps!
Irene
I am seeing a new GP, through no fault of my own. I have learned not talk about my ME/CFS/FM. I say it once and watch their reaction, which is usually a roll of the eye’s or no response at all. I have been sick since 1985 and have seen ALOT of Dr’s. Stay strong..there are no answer’s right now. We are not crazy…we are very sick.
Hi A, You can get a tens unit without a prescription. You can get one on ebay. Karen
I know how you feel. I went to a new pcp this year and she said she was overwhelmed. The medchek is close to my house and two Drs. there have fibro. I have a back up. lol Also my heartbeat is in my ears every day. Some one out there know how to treat it? The docs don’t know; I asked.
hello,
yes, i do know how you feel. i’ve had to move several times since losing my job & home, to live with people who will take me in. so, i’ve had many new dr appts. what helps me is this: i always take a spiral notebook (that’s to every appt) and i write down the date and dr name, appt info etc.,. then i write down what i want to be sure the dr knows about me. just like you, i have a laundry list of medical issues. i don’t think well on my feet. i did this same thing when i went to my disability hearing, and it worked like a charm. i don’t try to come of as a know it all, but i sure don’t play it dumb. i am a professional patient, have been for 17 yrs., and no dr will ever know my case as intimately as i do. i explain the meds i have been on (and they are narcotic) and how they work. i write down the questions i have for them as well. such as how they handle the routine of getting monthly narc scripts. i find that if i take the time and organize my thoughts in good notes, along with different conditions i have, list of meds, past drs and the phone #’s, etc, than i can go to the appt much calmer. a calm patient who knows what she needs and EXPECTS is more appealing to a dr than a nervous wreck. that is what i used to be b4 the spiral notebook routine. and just for the future, another thing that has helped me very much, especially with my teflon brain is: as i said earlier, i kept a running notebook of every dr appt and test. that way i can be jotting down in advance things i want to bring up at my next appt and the answers is get. i can keep track of meds i try and why they did or didn’t work. i write down my vitals at every visit, too. this kind of info has come in very handy and no one has ever had a problem with me saying ‘just a minute-i have to write down what you said cuz i’ll forget’. good luck and God bless, kathy
p.s. let us know how it goes. bye
For Shawna,
Your doctor sounds just like mine, I laughed when I read your post: Mine also deals more with arthris, and does not know a lot about FM/CFS…… I am going to a new Rhuemy doctor next month who is suppose to be great…. hears hopeing!
I went to a new PCP because my beloved Dr of 12 years stopped helping me. He said he’s working 16hr days and doesn’t know what to do for me.I couldn’t get him to do referrals, etc. He didn’t refuse, he just would drop the ball…over and over.This is SO bizarre. I can’t figure it out. He always hugged me when I came in the office. My friends think he’s going through something.
So I went in to see a new Dr and he was completely overwhelmed and immediately said “I don’t treat pain”. He focused on my BP, Cholestrol, etc. But I’ve been back twice and he’s now saying he’s getting to know me and is referring me to a Pain Dr and a Rheumatologist. So, it’s not perfect, but working out ok. I cried in his office, and he seemed to believe me!
Adrienne, it is SO stressful going through that, best of luck
Your article is perfect timing for me! I have been considering changing Primary Care Physician for many months. Mine is the leading authority on ME/CFS; BUT she still keeps paper files and her staff is deplorable! Plus she is 30 miles from my house. I have filed for Soc Sec Disability – this Dr has been my worst enemy due to her lack of keeping my Medical Records up to date. I have to stick with her until the Disability battle is over. I appreciate the comments from others on saying to the new Dr, “What do you think ……?”. Good luck to you and keep us informed!
Not a new doctor, but had to go back to a spine doctor who thinks all my pain is related to FMS rather than documented deterioration in my joints. At my appt., he glanced through my file, pointed out that his role was to diagnose and that maybe I’d be better off with a pain specialist (although I find this confusing because he does injections for pain) and then started to say some thing that started with, “With all the things in your file, the depression, the fibromyalgia, some people might think it’s all in your head…”.
Since I know he is skeptical about FMS from previous work with him, I interrupted him, and said, “Well, I’m glad you’re not one of them, because the fact that all my chronic shoulder and neck pain were relieved four months ago with my shoulder surgery for an impingement, even though many doctors and specialists attributed it to FMS for years, should make it clear that there can be more going on than meets the eye.”
He did lighten up after he considered this, but also slipped in a comment to the effect of “Since you say the surgery relieved your pain…” Wouldn’t I know?
I had been very tense before this appt., but helped prepare by thinking of what to say to him in advance should stupid stuff like that come out of his mouth. I wish there was someone else on my health plan who deals with multi-site impingement problems.
I bought a tens unit online for about $40, with no prescription. Google it and hopefully you can find one cheap enough.
I’ve been on the same dosage for many years, too. I get my refills on time & when I have good days, weeks, months… I save some back foe very bad days. My pcp’s nurse said he never gives so many Lortab in a month. I told her that it’s what I had when we moved back from FL.
God bless you all
I’ve just begun seeing a neurologist. The tests he asked for have been exhaustive. I am so worn out today! Do not make your appt. the last one on a Friday. I was too tired and so was he.
I did find out a lot about myself, and am using braces on my wrists again, however I’ve been scared all week long. Cists on my kidney, really got me crazy.
Now he is a dahling man, and I will see him again. But this last week was much too hard. Blood, MRI, and sonograms. The whole woiks. Thank G-d I’m normal for my age. A little this and that. Arthritis, stenosis, cists, all regular stuff.
It’s a good idea to have a neurologist on my side, just in case something should get worse. He has a map of my normal health with fibro.
Best of luck with your new PCP. I can relate based on my own feelings of anxiety when seeing a new doctor. I started seeing a new PCP earlier this year and was pleasantly surprised. I also started seeing a physiatrist this year for dealing with pain, and found him more knowledgeable about CFS/Fibro than the pain management doctors I have seen.
Could it be that the medical community is finally starting to gravitate away from the “all in your imagination mentality”? It should help that the FDA recently said that it considers ME/CFS to be a serious or life threatening condition.
You would think since FMS/CFS is a dis-ease with a long history that someone would have come up with some kind of resource guide for patients and doctors. What questions to ask, who to see first. I know there are alot of websites for this and that but nothing consistent. Maybe there is, does anyone know of something like this?
I can’t even go to my insurance company and specifically search for a fibro specialist.
Why did you become a doctor if you are not going to believe me? We should be able to vett our doctors.
Off the soap-box, for now. Good luck!
I lost my longtime nurse practitioner to her career change a few years ago, and was very very worried. I had earned her trust with all medications, I trusted her to go research what I had just learned, to keep learning with me.
When I had to see the new provider I made that appointment the same week I had my last appointment with my NP. That way there were no refills I had to ask for. Even thought I was going to be seen in the same practice still, I did get copies of my last 12 months of records to have on hand, more for myself and knowing I had my story in hand in case I needed to look elsewhere.
I made the appointment more of an interview/get to know you session. I asked what experience she had with fibromyalgia, what treatments she had recommended, her experience with other modalities of care (such as acupuncture) as a supplement to the primary care, and how she felt about narcotic pain management.
It was all laid out on the table. We talked through each of my medications, how long I had been on it, how it was working, she made a few suggestions for us to explore down the road, and promised that she would keep learning with me.
My biggest worry, as is likely for many of you, was my narcotics. I showed her my history, and my pain contract, as well as her having access to provider notes in the system. She said that she has no worries about managing pain for people who use their medication appropriately, and are having a good response from them. Her goal was to keep me functional, not loopy on meds, but said “I am easy to work with”. And she has been very respectful, honest, open and gentle.
It has been a great relationship. If I ever have to change providers again, I will manage it exact.y the same way. I think that appointment with no refills or issues to address gave us the time to start a good foundation of working together. I also gave myself time with adequate medication to find someone else if it didn’t work , so there was not that time stress on me.
I think it is a shame that we as very ill patients have to worry about our MD’s egos instead of what treatment options are best for us. I too spend a lot of my very precious energy worrying about how to approach the doctor, how to educate them on CFS (most are amazingly ignorant!), and how to get what I know that I need from them, all without offending their delicate egos.
It should be the other way around, that the MD is concerned about whether he/she knows enough about our condition and how to treat it and are concerned that they can successfully help their patient.
We moved, so last Sept. I found a young (early 30′s?) hip PCP & made an appointment for Dec. When sh saw my diagnosis of CFS/FM & a list of 10 supplements she said “Find another dr. I’m not the doctor for you!”
I appreciated her honesty & now the search begins anew!
I hope that you have better luck!
I’ve totally given up on doctors. Their ignorance of information that is available on m.e./fibro (despite having a patient in need), their breathtaking arrogance and ego, their wish to use me as a lab-rat despite obvious fragile health, and their inability to LISTEN, have made me much more ill than I might have been had I avoided them in the first place. I tried all the approaches from knowledgeable to brown-nosing, searching for someone who will just ‘hold my hand’ and keep proper records, while I suffer through all this wierdness, but no. That type of doc is as much a myth as the happily-ever-after in fairy tales. It is a very hard fact to accept. The fracturing of a belief system. I did finally come to accept the illness, the decline in health, the loss of an active life (more than 25 years, now), the isolation – but the doctor thing….. I still feel so betrayed…. Now, I’d rather jump in front of a train than have anything to do with a doctor! My life’s ‘work’ now is totally about ‘comfort’, MY comfort. And doctors only cause dis-comfort on every level – physical, mental, emotional and spiritual.
Aaaaah! That feels soooo good! A public rant now and then in a very ‘healthy’ thing to do. I’m having a moment of feeling good! Yes!
At last after several years of numerous visits to my unsympathetic doctor who would only entertain one symptom at a time ,making me feel like a hypochondriac , a meeting with a rumatologist who diagnosed me with fibro within the first 5 mins ,I wanted to break down and cry .Its not all in my head .I might want to hit my doctor next time i see him except it would really hurt my hand . Now to find some real help advice and sanity and not feel guilty if i have to go bed and sleep .I don’t think our British doctors know so much as the American docs on the real problems of fibromyalgia .( Just what help can i get ) ? or does one have to research every thing for them self’s? comments or feed back welcome ,thank you fellow sufferers
I recall the first time I met the Peterborough(cambridgeshire) CFS/ME Team. Getting my thoughts together and thinking about what I might be asked and how I should respond, was an important aspect. I was there an hour and met two Doctors, one more specialised in ME than the other but both knowledgeable.
Probably best to prepare yourself which ever way possible, then you won’t be disappointed, often you will find that these individuals are “investigating” the illness and how it effects each individual, but until a proven clinical treatment on prescription is available, all one can wish for is HOPE.
My doctor appointment are not as lucky as yours, unfortunately I have gotten the bottom of the barrel when it comes to a primary physician, who ever goes to a VA knows what I mean. Doctors come and doctors go, I hate it. Have you ever heard of the story of the horse and the carrot? where you have to bribe the horse with a carrot to get them to do what you want! Well this is what the last two doctors I have had have done to me! If I want my opioid medication for the unbearable pain do as I say or I will cut you off! I am so stressed out by this unethical practice that I can not take it, so I left one doctor I had, who was just medically neglect. She said, she did not expect to see me for 2 years from the last visit! I have Chronic Fatigue, Fibromyalgia and Hashimoto’s Thyroiditis. I need to have test run periodically to monitor my thyroid, but she did not care, then when I confronted her about it and not being able to get an appointment to see her as my thyroid and other issues were bothering me, she accused me of something that I have never done, just to take the focus off of her and put it on me. She accused me of getting my opioid medication outside the VA hospital, which I never did and I can prove it. For all who are on opioid their is a data base with the medication you had been prescribed, so if you get you opioid from different doctor you will get caught. This also proved that I did not get my medication outside the VA hospital! So it can work for you too!
I do not want to worry about not getting my pain killers as I can not function, without them. I HAVE HAD IT WITH LOUSY DOCTORS WHO DO NOT HAVE A CLUE! I just want to find a good doctor that understands these illnesses! Yesterday I fired my doctor, as she traumatized me! It is apparent she does not trust me as she wanted to start doing random street drug screenings, I was insulted! She knows I do not have a history of street drugs.
I’ve never had a good experience. Every doctor I’ve been to seems to think I’m exaggerating my pain to get to be prescribed pain killers. Funny thing is I’ve never been prescribed pain killers for fibro, ever. I don’t know if it’s because I am only 26 years old but I’ve had fibro since my teenage years. I’m at a stand still with my treatment. No one wants to seem to listen.
Good luck getting narcotics, I don’t often require them but when I do I find that most doctors refuse to prescribe them. Due to the fact that other people either lie about their pain and sell or abuse the narcotic pain meds t has made it difficult for folks with real pain issues to get proper pain management. I have been stuck with some many freakin needles all of which are of little or no help and often more painful than helpful. I’m tired of apathetic Doctors that look at me as if I’m drug seeking because I have a little bit of medical knowledge and know what works for me and what doesn’t. Signed, FED THE HELL UP!!
Try not to give up there are good doctors out there. But it is scary to change doctors good luck to you.
These are always difficult, trying to get as much information across to someone new in a short space of time puts you under a lot of pressure at a time when you’re at your weakest. My advice is to role play the scenario with a loved one, go through it several times and feed them the difficult questions that you kow will come up and some that would hold fear for you. Go through the conversation over and over, when your partner is getting bored, you’re getting there. By the time you sit down with your Doctor you’ll be in the driving seat and no matter how bad you’re feeling will be able to concisely answer each question, you won’t get emotional or be thrown because you’ll be working from your own script. Good Luck.
The right location!