.........sorry for the long posts, but I thought the info might help others.
It occurs to me that it might be helpful if we could share tips on how we deal with our doctor(s) about our FM we might be able to better help each other. So, I thought I would post the 3 things that I consciously do that have seemed to make a difference for me in dealing with various doctors.
1. BE PREPARED. I always go to my appts prepared---for his sake on time and for mine regarding fibrofog so I don't forget to mention or ask things and so that I don't inadvertently ramble on taking more of his time than necessary. When I first started doing that I noticed that some doctors seem to react oddly to it. I couldn't figure out why...afterall, we go grocery shopping w/list so why not the doctor? What I think I learned was they reacted that way simply because they aren't used to patients doing it. What changed the dynamic was that now on the first visit or two with a new doctor I make sure by starting off the visit with an introductory statement ...."I realize that your time is very valuable and limited with the number of patients you see in a day so in an effort to keep our visit as brief as possible and still make sure I cover my questions/concerns, I have made a list to keep me on track". They LOVE it when you start out like that.....it shows respect for the biggest demand on their day---TIME, and most melt and respond with expressions of great appreciation and are willing to give you even more of their time.....it is strange, but it works for me so far. I make sure my list is on a 3x5 card with only 3-6 brief talking points----it psychology eases them to see only a small 3x5 card. If necessary I keep further notes on a separate 3x5 card for each issue, but keep those tucked away and bring them out one at a time as each issue is discussed.
2. RESEARCHI research and learn as much as possible about my condition online so that my doctor can see I am seriously trying to help myself get better, and the burden is not all on him. In my situation, my primary care doctor is VERY young and has basic awareness about FM, but he is compassionate, supportive, and seems interested in learning more about FM. I can tell that he must be doing some research on his own as he knows far more now than he did a year ago when I first started seeing him. I researched online to identify the top medical institutions. Well known and respected names are right up there at the top, e.g., Mayo Clinic, John Hopkins, Cleveland Clinic, Stanford, etc. So, as much as possible I use those websites and do my searches through THEIR search engine so it prints out medical information with THEIR logo etc. Then if the information is relevant to what I will be discussing at my office visit I make sure I take courtesy reference copies with me to my appt. All doctors know these are premiere medical learning institutions .....most would have loved to have received their education/training there, but it is cost prohibitive for most. To our doctors those places are sacred temples of knowledge. Most doctors will listen when you are presenting concerns that are validated by any of those sacred institutions.....kinda like the old EF Hutton commercials from years back for those of us old enough to remember those days, lol.
3. Hubby Accompaniment to Office Visits. This one I am might be understandably controversial to some women, and for others not relevant. In my own situation it is both relevant and effective so I am including it. The choice is yours I discovered this quite by accident actually. Until last year I had successfully hidden as much as I could from my husband about my pain and suffering. He knew it was bad since I was unable to work...he just didn't know how bad and for how long I had really been suffering. My husband and I are both 56 and married since we were only 18...so 36 years; no children. He has been very supportive about my illness, but was also in personal denial.....he REALLY needed for me to get well....I had always been the strong one...the one who managed the household, bills, crisis management. The more my condition progressed the less I was able to do and the more everything started shifting to him. He didn't mind the labor part of it all....what he couldn't handle was the emotional part....fears about not knowing anything about this condition, how to help me, would I get worse.....how much worse. After his retirement last year I knew I could no longer hide how bad I was as he would be home all day and see it and see the pain I was in. I printed out information for him to read from the reputable institutions mentioned above, and that helped. When I was initially diagnosed in 1998 I was seeing a Rheumy who later retired. I decided to try care just with my primary care doctor since the other Rheumy at my clinic is just horrible. I have never met anyone who liked the man. Then my primary care doctor relocated necessitating a change to a new primary care doctor. I was really worried about my first visit with him because it was happening during a flare period when my fibrofog was really really bad. So, I asked my husband to actually go into the exam room with me to help bridge the fibrofog so I wouldn't sound like a neurotic hypchondriac headcase. I can't tell you what a difference that made all around for all 3 of us....me, my husband, and my doctor. My husband suddenly felt like he really could do something to help me....be there and having an actual active role helping me with my care .....all understandable male thing....but the surprising difference was that it also made my doctor see things differently...he knew that things must be REALLY bad if my husband took the time and was there with me....that it wasn't 'just me not feeling well and it wasn't just in my head'.....my husband didn't just sit there during the appt...he actively participated expressing his observations about my pain/activities/limitations/effect of lack of sleep....my doctor developed a whole new dimensional perspective (hubby perspective....something my doctor could relate to as he is a hubby himself). I could see it all unfolding. This doctor is primary care physican for both of us, and my husband says now at every appt he has for himself on various thins that our doctor makes sure to ask him how I am doing and also how HE is doing coping with my illness. He told my husband that with both of us there together that first appt ....holding hands...me crying....and hubby supporting me....that it made him think what it must be like for us at home and prayed that his wife never gets anything like this. Now, even though my doctor is young and limited in what he knows about FM....he does know the impact of it and he is willing to learn........that is a start. My hubby still goes with me now to every appt. It helps me to have him there as he sometimes remembers things I forget. It helps him to feel like he is doing something to help me, and I notice it has truly legitimized my situation for him. He now knows this is a legitimate condition where very little is known and treatment is an exploratory mission. It is comforting for me to know that he truly does understand when I happen to overhear him talking on the phone to friends/relatives and hear HIM explain it all to them .....it helps to have that support.
I read on this Board where someone else in another thread posted a recommendation to always get copies of lab test results for home files. I thought that was a GREAT idea so I am now doing that as well. It is important for those of us coping with this illness to really know that in order to get better, we have to take charge of our own healthcare. Doctors just don't know enough about this illness for you to put YOUR healthcare in the hands of any one doctor without your active participation in YOUR healthcare. There are just too many varied medical opinions out there on the cause/treatment of FMS.....get your medical records...get your tests....research...familiarize yourself with the various opinions/treatments.....then seek medical consultations in your area to find a doctor......then design treatment approaches that seem right for YOU and your situation. Our bodies have our own unique chemistries and as such what works for one may not work for another....but don't give up trying. That is what makes Boards such as this so valuable to us.......we can learn from each other.
I would be very interested in reading what others are doing to help with doctor/record management, etc.
Very informative. I enjoyed your read. I should do the card thing. I always leave and half way home remember something I forgot! I do a lot of research and also supply my rhuemy with reports I find from hospitals, reports out of Sweden, I email them. I think my Rheumy is impressed with my knowledge and ability to find these reports.hehe.
As far an my hubby coming to my visits, thats never going to happen unless they take me out of here on a stretcher. My hubby doesnt understand. He resents that Im not working and he thinks if I can get out of bed, Im not dead, I should be able to accomplish everything like the wonder woman I once was. I have 2 kids. I refuse to let this keep me down. I have been sick with this all my life. If I have lived everyday in pain and feeling like I have the flu, getting up and making it through the day is just my reality and I have lived with it so long, I know nop better. The day this keeps me down is the day they will be digging my grave. I get up and move...no matter how I feel. Even just for a few moments. I move, then collapse, but 10 minutes later Im up again. I also believe in 20 minutes of outside activity every day. Walking, gardening, picking up sticks whatever. But because I still have a fire under my butt for living, I will not take fibro lying down. I tell ya, its made me a real ****** with my hubby. Now if hes home on the couch with a cold or the flu. I bust his chops so bad. "Welcome to my world!" is my favorite. I have also stopped catering to him when hes sick. I even refuse to make him a can of soup. I tell him, "No, I want to watch you make it for yourself. I cook full meals when I feel like you so, make your own soup...maybe then youll realize why there are nights we dont have dinner on the table."
Anyway, I supply my docs with copies on disk of certain posts I make on the boards. I edit them down, just as a little insight for them to what exactley Ive been feeling. I seem to be able to express myself better in writing, so when I enter something in the boards I think might be good info for the docs, I copy it into a folder and burn a disk for them befor I go to my visit.
I also keep a health diary during bad flare times. I rate my ills, my pain and my head aches. I use a percentage scale. I also take my temp 3x a day and record my fevers during flares. They copy the journal and I feel this is what gave the docs so much insight to my condition they were able to diagnose just from that. I do keep detailed notes and record every twitch, every reoccuring pain.
Thats my story, Feel well, Felicia
****, just going to the doctor would throw me into a flare. It would take me forever to get ready, in fibrofog. Now it's a lot better. I am not foggie as often and my docs all know me now after 3 years.
Hi Everyone, I am having such flare & fog for the past 2 weeks that I can barely function so I am hoping that my posts have made sense. Anyway, I have another tip to share....something I just created this morning. But first a brief background on what has lead to this creation. About a month ago I was in bad flare period, again, at the time of my regularly scheduled PC doc f/u appt. I was a mess, crying, could barely get dressed....just looked like hell to put it bluntly. He advised that he felt it was time for a permanent disability pursuit as we have been very aggressively pursuing treatment for the past year, and there is no way that I can go back to work. We have done acupuncture, chiropractic, physical therapy, pain meds, massage, TENS unit, yoga, TaiChi, stretching.......I can't imagine there is much else left to try. While these things help to at least get me out of bed to shower, dress, eat....I still can't walk/stand for longer than about 20 min...my husband has to do everything....grocery shopping, cooking, cleaning, laundry, bills, driving me to dr appts.....you get the picture I am sure....I am disabled. Since we are about to undertake that process, my PC care doc has acquiredreferral approval to send me for further evaluation to the Rheumatology Dept of 2 major hospitals here in CA---University of California at San Francisco and University of California at Stanford. It will be very interesting what these places have to say. I am more hopeful about UCSF than Stanford however. I checked out their websites and the Stanford Rheumys are mostly dinosaurs who have been there 30-40 years and should be retired, and likely don't have an interest or an acknowledgment about FM. UCSF has a little younger, hopefully more forward thinking docs, with at least one stating he specializes in FM....I am hoping he will be the one I get to see.
My fog is so intense right now that I am concerned I will go to these appts and forget to report things that could be important. So, this is what I came up with to help me so I can quit worrying about it as the stress of worrying about it I think might be making me worse....ugh.
I realize that these appts will likely be scheduled about 2 months out from the time they call to schedule it---so, I have time to collect about 2 months of current symptom data. To record that data this morning I created a one page Patient Self Report Form. I intend to print out copies of the form, one for each day.....complete it throughout the day noting my symptoms each day. Then, prior to the appts I will sit down and analyze the dailies and from those I hope condense the most significant of the symptoms occurring the most frequently on to ONE form, making it a quick easy reference read for the doctor(s) and yet one that I know will include my most significant symptoms. I intend to put the dailies into a small binder and have them with me at the appts for reference if needed/requested.
The construct of the daily form is as follows (any suggestions to improve the form is VERY welcome & appreciated!!!----I view it as a 1st DRAFT that will be a work-in-progress). I know it will help me, and I feel better already just knowing I have it. I showed it to my husband this morning when he woke up and he is sooooooooooo pleased as he has been begging me to do a daily record of some sort that can help me with my doctor visits. I have been doing the 3x5 card thing as stated in my earlier post on this thread, and that works to keep me on track and not ramble during the time with the doctor, but that was created the day before or the day of the appt, and I would always forget things and was unaware of frequency of reoccuring patterns of symptoms, etc. This form will help me monitor and report those with more accuracy and confidence now.
It is one page very basic PATIENT SELF REPORT FORM; half way down the page there is a horizontal line across the page.
On the top half of the page I typed in:
Date of Birth:_____________
Patient Other Comments/Concerns/Questions:
For me, I then plan to use the back of each daily page for my own personal diary journalling about how I am feeling in general and emotionally on that day.
Then, for visual aids (a picture is worth a thousand words) I taped a copy of small diagrams of the body---front & back--I copied it from Dr. Devin Starlanyl's FM book---but most any FM book has similar diagrams---also online FM websites ----so it is very easy to find them...just print out, cut, and tape to your own form. I decided to remove the tender point designation dots with typing white out. All that is left to do is make multiple copies, one for each day that data is to be recorded, 3-hole punch and put it into a 1/2" binder. As each day's symptoms are rated on the 1-10 scale; they can also be marked and shown on the body diagrams to show the doctor exactly where your symptoms are occurring by making not only an X at that location but adding X-7 or whatever level your pain is at that particular location. For example, you may have X-9 in your back neck area and X-6 at the right hip. For where I have generalized area or all over burning/searing pain I plan to indicate those by either pencil shading the areas or perhaps using different colored highlighters. My plan is to work out a consistent data record plan in advance so that I am consistently following that plan throughout.
If one wanted to get more sophisticated, you can even purchase divider index tabs which could divide the data records by MONTH/DAY. I have some left from my working days so I may use those. But, I don't think if I didn't already have them that I would go and purchase them. At the time I bought these....years ago...they were quite pricey as Month/Day dividers were only available at Office Supply stores. They increase the cost of the project and probably aren't necessary since the dailies are truly just your own personal daily diary journalling.