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Talking to Your Doctor About Fibromyalgia

  [ 46 votes ]   [ 6 Comments ]
By Dawn A. Marcus, MD • www.ProHealth.com • January 16, 2013


Talking to Your Doctor About FibromyalgiaDawn Marcus, MD, is a neurologist and professor at the University of Pittsburgh, where she has focused her career on holistic chronic pain management, with a special interest in fibromyalgia, migraines, and women's health issues. Dr. Marcus has written over 15 books, including The Woman's Fibromyalgia Toolkit: Manage Your Symptoms and Take Control of Your Life , a comprehensive guide to understanding what fibromyalgia is, what causes it, how to treat the symptoms, and strategies for effectively communicating with healthcare providers. You can follow her work through her blog at www.DawnMarcusMD.com.

The following is an excerpt* from The Woman's Fibromyalgia Toolkit: Manage Your Symptoms and Take Control of Your Life , by Dawn A. Marcus, MD, and Atul Deodhar, MD.
_______________________________

Talking to Your Doctor About Fibromyalgia 

People with fibromyalgia have two problems that can make a conversation with their physicians difficult: first, most doctor visits are short; and second, your doctor may not understand how disabling fibromyalgia can be. Organizing the time you have with your doctor and helping him by prioritizing the issues you want to discuss during each visit can make your time together more productive. If you feel as if your doctor is rushing you through your appointment and out the door, you’re not alone. The average doctor’s visit now lasts only about 20 minutes. While this may be enough time to review how to manage blood pressure, it’s probably too short to handle several health issues adequately. If you try to talk about pain, poor sleep, and bowel issues, your doctor will probably become a bit uncomfortable, knowing there’s not enough time to cover everything. It’s not just the American system that’s to blame—the average doctor visit in Europe lasts 10 minutes, and in Japan, only 6 minutes.

Do most physicians consider fibromyalgia a significant medical condition? When you try to talk to your doctor about your symptoms, do you get the sense that he’s really not listening and would rather hear about something else? This reaction is not just because of you—and unfortunately it’s not unique to your doctor. In a recent study, doctors were asked to rank the status they gave to 38 common medical conditions, including fibromyalgia, based on the standing they believed that each held among doctors. The health issues awarded the highest status included myocardial infarction, leukemia, spleen rupture, brain tumor, pulmonary embolism, testicular cancer, and angina. Fibromyalgia was last on the list of 38. So, you may be right if you think your doctor does not understand that fibromyalgia is important. As a person who has the disease, you are an important resource in helping to educate your doctor about the significant impact that fibromyalgia can have. If she is not comfortable managing your fibromyalgia, look for someone who is.

BE AN EFFECTIVE COMMUNICATOR

You probably can’t make your visit last longer, but you can use your time effectively. Become an effective communicator to help inform and educate your doctor about the importance of fibromyalgia and your symptoms. Become your own best advocate: Make sure that your concerns are heard, your needs are being addressed, and you understand the recommended treatments. In most cases, your doctor will be a good resource for managing your fibromyalgia. In some cases, you may need to ask for a referral to a specialist. Most doctors are open to getting a second opinion. Seeing another physician is not a sign of failure for you or your doctor. If he suggests that you should see someone else, you shouldn’t feel abandoned or think he won’t treat your other health problems. Fibromyalgia can be frustrating for patients and their doctors. Sometimes your doctor may seem disinterested when, in fact, he has run out of ideas. This is a great time for a fresh look. The communication techniques described in this chapter can be helpful for sharing information with your doctor and talking about where to turn when you hit a stumbling block.

Develop Good Communication Skills

The 18th century theologian, philosopher, and scientist Joseph Priestley is credited with having said, “The more elaborate our means of communication, the less we communicate.” In today’s age of smartphones, teleconferencing, electronic media, and the Internet, this statement seems quite modern. Despite all the communication tools available, we still have trouble during conversations with our health care providers. The good news is that you can improve communications with your health care provider—even if she is a poor communicator. By using effective communication strategies yourself, you can vastly improve the exchange of information during your typical doctor visits. Plus, when you use effective communication strategies, it actually teaches your health care provider how to communicate more effectively with you and her other patients.

Make a Written List

It’s easy to get sidetracked or feel rushed during appointments and forget to share important information or ask key questions. Lists are terrific memory aides. As you prepare for a doctor visit, make a list of the information you want to share—your most troublesome symptoms, any medications and other treatments you have tried and those you’re still using, and any other key concerns. Be sure to include non-prescription medications and supplements in your list of medications, and note the dose for each. Also, include a list of questions that need to be answered and concerns you want addressed.

Prioritize Your Symptoms—Be Prepared

Franklin Delano Roosevelt perhaps said it best: “Be sincere; be brief; be seated.” When you have a complicated problem such as fibromyalgia, with lots of bothersome symptoms, you would need several hours to completely address all of your concerns. Unfortunately, you’ll probably only have the usual 20 minutes, so use this time wisely and get your most important questions answered first. If you really want complete and thoughtful answers from your doctors, start your conversations with this statement: “There are three things I’d like to talk to you about today.”

Don’t expect to get everything addressed during one visit. Before your visit, decide what your three most pressing concerns are, and limit yourself to asking questions about them. Once your doctor knows that you only want to discuss three issues, you’ll probably get more informative answers. Save less pressing questions for a later visit.

Ask Direct Questions and Say What You Mean

If you want to get a clear answer, ask a direct question. When men listen to women talking, they often conclude that women spend a lot of time talking around issues, hoping to gently lead listeners to a question, rather than just blurting it out. Men often ask, “Why can’t women just say what they mean?” (Or, as Henry Higgins says in My Fair Lady, “Why can’t a woman be more like a man?”) When dealing with your health care provider—male or female—this is often good advice.

Doctors have a much easier time answering pointed questions. For example, if you’re wondering why your doctor prescribed an antidepressant for your fibromyalgia after you just told him your mood was fine, don’t vaguely ask, “Do you really think this will help?” He’s bound to say, “Yes. See you in 3 weeks!” before bounding out the door and leaving you still baffled. Be direct and say, “I don’t understand why you’re suggesting an antidepressant. I don’t feel depressed. Do you think I have a mental disorder?” Your doctor might look startled, but then he will probably explain which symptoms he’s hoping will improve with the medication.

Speak Up and Share What's Really Bothering You 

Doctors aren’t mind readers; they don’t know what your concerns are if you don’t tell them. If you answer “no” when your doctor asks if you have any unanswered questions or concerns, he really believes that you don’t have any outstanding issues. If you doctor asks about your concerns, open up and share them. If he doesn’t ask, bring up issues yourself. You can say things like, “Before you leave, doctor, I’m really worried about . . . .”

If you’re especially worried about something, be sure to ask:

  • “Do you think my symptoms could be caused by cancer?” 

  • “My sister thinks no one can possibly have as many problems as I do and that I’m probably just making them up. What do you think?” 

  • “Will I still be able to work with fibromyalgia?” 

  • “How can I keep up with everything I need to do around the house when I’m so exhausted?” 

  • “I think that new medication you started me on is making me sick.”

 Be a Good Reflector—Restate What You Hear for Clarification

A good way to make sure that you understand what your health care provider tells you is to rephrase what he says in order to be certain you heard it right; for example:

  • “You’re saying the pain, fatigue, bouts of diarrhea, and feeling like I’m in a fog are all part of fibromyalgia, and not caused by something serious, such as cancer or infection, right?” 

  • “When you say to take this pill every day for fibromyalgia do you mean to take it every single day or only on those days where my symptoms are especially bad?”

These questions help clarify what your doctor tells you, and what you need to do to improve your health.

QUESTIONS TO ASK AT EVERY VISIT—UNDERSTAND YOUR SYMPTOMS AND HOW TO TREAT THEM

When you leave each appointment, make sure you can answer all of these questions:

  • Which of my symptoms are caused by fibromyalgia? 

  • What non-drug treatments do I need to focus on? 

  • How should I take my medication?

  • How long should the medicine take to work? 

  • What side effects should I watch for? 

  • When is my next office visit?

Don’t be afraid to say you don’t understand why something was prescribed for you. If you don’t understand why a treatment is prescribed, you probably won’t use it carefully or consistently. Your doctor should be able to clearly explain the reason for a specific treatment. Also, if you’re interested in hearing about a specific therapy and maybe trying it, ask whether it might be appropriate for you. Most doctors are eager to consider every treatment that might help you get better, so don’t feel as if you might be embarrassing her by asking about different treatments.

UNDERSTAND YOUR TREATMENT OPTIONS

Fibromyalgia treatment is often complicated. You may need to take more than one medication. You may also be prescribed non-drug treatments, changes in your sleep habits and diet, and an exercise program. Doctors often start treatments in stages—giving you one or two new things to try at each visit, rather than starting too many options at once. Some physicians will have a nurse explain the medication instructions. Feel free to ask for written instructions. Also, ask your pharmacist to clarify any questions that weren’t asked or answered in the doctor’s office.
 


* This article is excerpted with kind permission from Chapter 12 of The Woman's Fibromyalgia Toolkit: Manage Your Symptoms and Take Control of Your Life by Dawn A. Marcus, MD, and Atul Deodhar, MD. © 2012 Dawn A. Marcus, MD, and Atul Deodhar, MD.  All rights reserved.



Please Discuss This Article:   Post a Comment 

REALLY?!!!!!!! You're kidding?
Posted by: kjwest
Jan 16, 2013
I apologize for sounding rude, but your article was written like a doctor that doesn't have a clue about what fibro sufferers have to deal with in the doctor's office.

First of all, I barely have enough energy to get myself out of bed (after a long painful night of insomnia), shower, dress, and drive to the doctor's office, let alone sit for an hour or more past my scheduled appointment in a hot, stuffy waiting room, and then have to deal with a physician who is ignorant about fibromyalgia AND has a stinkin' attitude towards me, to boot!!

I am sorry, Dr. Marcus, but I don't have the time, money, or energy anymore to go from doctor to doctor to doctor trying to find that one worthwhile doc who will give me a few precious minutes of his/her time and whose eyes don't glaze over when I show up with severe chronic pain, foggy brain and trying to form my thoughts and words into something coherent within a 15-20 minute visit.

I have suffered with fibromyalgia for more than 15 years! Yes, that's right!!! My search for a worthwhile doctor has been going on for 15 long years. I have used most of your "great ideas" and I am sorry to tell you most don't work.

So, you have got to be kidding with these "great ideas".

You make it sound so easy that if we just "do this" or "say that" THEN the visit will be more satisfying.

We should NOT have to be doing all this over-the-top, jumping-through-hoops preparation to get the proper respect and treatments that we are paying for.

If doctors would get their noses out of their laptops and actually look at us and listen when we speak, maybe the visit would be a more satisfying visit for both of us.

Fibromyalgia is a much more common muscle pain disorder. Pharmaceutical companies are peddling their drugs to us via television every single day!! So, there is no excuse for any doctor not to know about fibromyalgia.

Doctors should know about it and be prepared for why we are there to see them, because when we make an appointment we are ALWAYS asked by the receptionist why we need to see the doctor. So, do YOUR preparations for US before seeing us!!

Since fibromyalgia is more common, why are most doctors still in the dark??!!

I am not a lowly, ignorant, malingerer just looking for sympathy and drugs. I am looking for a physician who will show a little interest and offer a little compassion and hope.

Doctors, if you are not interested in treating people with fibro or don't know anything about fibro, then please tell your receptionist so we don't waste our time and money making an appointment to see you.

Dr. Marcus, you are trying to teach the wrong people about preparing for a satisfactory office visit!! Instead of telling US how to prepare for our office visit, why don't you teach your COLLEAGUES about fibromyalgia and how to respect and care for those of us who come to them for help??

Fibro sufferers don't need to be taught how to behave in a doctor's office. We behave just fine. It's the doctor who is not behaving properly!

We need an advocate, Dr. Marcus!! May I suggest that YOU get in there and be our fibromyalgia advocate to your colleagues. YOU do the work for us, because I am sure most of us are too tired and in pain to do anymore work.

Thank you!
Reply Reply

 
OH NO YOU DIDN'T
Posted by: kjwest
Jan 19, 2013
P.S. And I can't EVEN believe you would dare quote Henry Higgins words "Why can't a woman be more like a man." !!!!!!

What an insulting thing to say to your readers, who are probably predominantly women.

As a female physician, you should be ashamed of yourself with that comment.

WOW!! No wonder women aren't taken seriously!!!

 


Doc Visits
Posted by: slowdreamer
Jan 17, 2013
Yes I concur with the above poster..When energy is limited it really is a negative experience to go play the DOc visit game when the person with all the status and bits of paper has no respect for the condition. Went to a doc t'other day .It was empowering because he knew all about CFS..

It was like he had been on my planet.
I asked him why he got it and he said he had a friend with CFS.

He also said
"There are many things we don't know and only the ignorant are dogmatic.
Altogether quite refreshing...no real teatments etc but I felt strongger for the visit.
Reply Reply

I went thru the most scarey event last month
Posted by: rosemarie
Jan 21, 2013
I went thru the most terrifiing evente last month just days before christmas. I woke up wiht a minor cough and a head ache and by that night I had been treated for heart problems, given meds to slow down my heart and they left me aching badly and no one could or would tell me if the adesine that I was given twice in diffdrent dose's could make hte pain from my fibro worse and cause me more pain.

After many tests I was dx'ed with Septic Penumonia and spent the night in the ICU and was terried that I was going to die and that it was really my heart not my lungs htat were the cause. Not once even when I asked "What is Septic Penumonia? How did I get it and why did it hit me so fast.?
after living with fibro for some 15 yrs having my ribs hurt is not some thing I stress over but this pain in my ribs were so bad htat I was struggleing to get a breathe. I ws pout on 02 and my hearwt rate went back to normal before I was told that I was in supraventrical Tachicardia and that was when I was given the adesnine that terrified me as I thought I was dying and no one could expian to me that it was the effect of the medication that was making me feel that way. NOw I am terrified that the septic penumonia could end up giving me a heart problems the kind htat you need a heart transplant for .

I have since been told that my heart is fine and will have no lasting problems but each time it races I get so scared and worry.
Doctors askled me why didn't I come in sooner and I said that I Live with fibro , It gives me bad rib pain and makes my chest ache and hurt and some times it is hard to breathe but this has been wasy for many years when I get penumonia or bronchitis. I alsways ache all over and have extreme fatique and exhustion so how am I to tell when I am really sick and not just having a flare? Theuy felt the same to me. The only resason I went to the ER was because when I coughed I was coughing up straight blood and could taste is in my slaiva so I spit it out and it was bright red blood.
I really didn't think I was sick but I was almost at deaths door if I understood the doctors correctly. IF I had not come in when I did I could have ended up on a ventilator and coudl have cuased my self perement lung damage.
NOw when I go in to my rehumy I don't know how to discuss this with him as he does not act like I really mean any thing to him as a patient, I dont' think he cares abot what happened to me. I get the feeling that the only reson he ever thinks of me is when I get my pain meds refilled. HOw do I ask him abot perement lung damgmae ooor could this septic penumonia cause me to have haert problmes that make my heart weak ? AS yo said in your article I only have less htan 20 minutes with him and that is not long enough for me to ask these questoins and for him to answer me and understand that these are really bothering me and upsetting me.
I spent a night and close to 20 hours in ICU and the rest of the time in teh medical unit with a heart monitor on and constant oxygen. I got to go home with home 02 and spent abot 9 days with constant ooooxygen and nthen another two weeks with 02 at night. I have had my sats checked twice since then and they are above 90+ each time. I have so many qustions that have not been answered and I was so terrified during this entire hospital stay and I still am worried about heart problmes cuased by penumopnia and i am afraid that it will come back. I have been wearing a mask each time I leave my houes so I don't pick up any other illness and i will keep wearing a new one every trip to town and around aot of people as I was told that I PIcked up htis type of penumopnia from the genreal population Please tell me how to ask abot the fears I have and what I cn do aobut knowing if I am really sick or just flaring?
CONSTANTLY WORRIED NOW>
rosemarie
Reply Reply

Response to Dr.Marcus's article and kjwest response to it
Posted by: jg216
Jan 21, 2013
I totally agree kjwest (REALLY?!!!!!You're kidding?)
This article is the worst advice I've ever read for Fibro sufferers and CFIDS as well. The doctors are supposed to be trained to know what this disease is and what the terrible, debilitating symptoms are. They should realize what it takes just for us to get to an appointment and we get 10-15 minutes if we are lucky. Most of the time it's see you next month Ms. So and nothing changes; but rudeness is unacceptable as well as ignorance.What did the so-called doctors go to school for anyway. i always carry a list of what I want to ask and things I need to get taken care of but it does no good most of the time anyway. I've also been to way too many doctors to count , trying to find one who really understands and is willing to help.i know there isn't any magic cure pill or treatment but there has to be some kind of help to at least have a some-what of a quality of life without PAIN, Pain,Pain. It will drive you crazy!Even animals are treated more humanely than humans when they are suffering, and they can't talk and ask for help.
Reply Reply

 
I agree........but there's more as we all have our story
Posted by: Scooter50
Feb 25, 2013
I'm a 50 yr old male who's had CFS/fibro for 13 yrs and unable to work since 2005. Out of 47 different doctors I've only been to one that understood CFS. She was Dr Laura Black who pratices under DR. Charles Lapp at the Hunter Hopkins Center in Charlotte NC. I took all my records & test from 7 years worth of Seeking help. At that point I had been tested for everything under the sun. I had to be carried to see her and I laid on the floor/chair/table etc for 5 hrs as she went thru each record. The 1st visit was 5hrs @$350/hr cash ($1750 total) The 2nd follow up visit was was 3.5 hrs an cost me $1175. The final visit was a 1 hr phone call to check in on me costing another $250. Finally, she diaganosed me with severe CFS & Fibromyalgia. They did not take insurance and my total out of pocket cost was over $3100 for 2 1/2 visits. Insurance companies will not pay their rates as they are high per patient and they treat "outside the box". Dr Charles Lapp's office is highly respected in the diaganosis of CFS and I feel that without their written support I would have never been awarded my Total Disablity from Social Security which took 3 years. She prescribed me to give myself a potent B12 shot every other day (3000ug)which did help for a while.I thank God that I was blessed enough to afford to go see them at the time. She also connected me with a Holistic Pharmicst in Mt Pleasant NC who understood CFS. He listened as well as Dr Black and did a few unusal test to see what supplements might be able to help me. On average the supplements (made in NC by Natural Creations) and the B12 shots cost me about $250/month for the next 2-3 yrs.(these things are not covered by insurance) All in all I do think they did help me a little bit but eventually her prescriptions ran out and so did my ability to pay for them. I could not afford to go back so I'm back where I started with extreme pain/suffering and sickness.
I spend 80-90% of my time in bed too sick and too weak to get up and do anything. My current family doctor is a sweet lady who listens well and seems to be very compassionate but, has no clue how to help me. She does write my pain Medication and every month but,it is a fight with the receptionist to get it refilled on time. Often I feel like I'm being treated by the office staff as a drug seeking abuser but, that is far from the truth. In my opinion all my doctor actually does for me is fill out my paperwork to keep my life insurance premuims paid since I'm disabled and she does all my paper work required by my employer to maintain my long term financial benefits from the company and write out my medications. Concering the financial benefits I feel extremely blessed because they permit me to support myself, stay in my own home and often pay others to run my errands and help me maintain the home.
HOWEVER.......THE GREATEST BLESSING would be for me to find a good doctor who understands the seriousness of CFS/fibrmyalgia and who would take the time to try and help me and be covered by my insurance. My experience is that once you get diagnosed as having CFS/fibromyalgia you are then labeled as one with an imaginary illness and you are left on your own to find your own cure. Some say that the sooner you get the CFS diagnosis the better off you are towards getting treatment and help. THAT IS NOT TRUE because their is no REAL treatment. The harder you work to find a cure or a doctor who understands the more exhausted and isloted you get. I lost my job...my friends slowly left one by one....even the wife cut my assets in half and she left. I was once very involved in a so called pentecostal faith filled church that believed in devine healing and I believed they cared for me and understood what I was going thru. I used to be one of the few that visited the hospitals and checked on the sick folk and I tried to look out for the ones who were hurting However, when I got too sick to attend church I soon learned that I was in a fight for my life and I was all alone. The only ones that ever call are the ones who are still depending on me for something.
HERE'S MY CONCLUSION.........CHRONIC FATIGUE SYNDROME sounds like a joke and all to often people see it that way! It is a real disease that destroys to lives of it's victims and it needs to be recognised as such. People suffering with this disease can no longer be over looked! Much research is needed to better understand it and hopefully oneday a cure will be discovered. Until then the word needs to out that people with CFS/Fibromyalgia are indeed fighting for their lives they once knew while dealing with extreme chronic sickness and pain that few will ever understand. MAY GOD SHINE DOWN HIS FACE ON US AND GIVE US THE GRACE TO KEEP FIGHTING because when we recover we will teach the World to be a better place.

 



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