How does one find a doctor that will listen?

Top 34. Sep 25, 1998 8:27 AM

» lasaluv - Barb Takeda Marcella, I as well as Dan am astounded that you

Barb Takeda

Marcella, I as well as Dan am astounded that your dr's reply was so blase. Time for a new one???

I know dr's can be frustrating. Before I was diagnosed, I went to over 10 doctors, who all told me I was under too much stress and that there was absolutely nothing wrong with me. I'm finding it hard to accept FMS for what it is - a real physical problem - and not something in my head. I guess I was told it was in my head for too long, so every time I try to convince myself that it is real that little though that it isn't always pops up.

I must share a little story - approximately 2 years ago during a flare up I made an appointment with a physio therapy clinic for therapy. After the initial assessment, the therapist booked me in 3 times a week. On my first visit, she immediately came in with a sheet of exercises that I was start in the clinic. She said and I quote, "These exercises are designed to fix the problem and get you back on your feet, I have found that like TMJ, FMS is just a fad, it will fade out soon enough." You think you went ballistic at your doctors, I was so mad I could even think straight.

I got up to walk out and said to her, "I'm so excited to hear that FMS is a fad, that means all the suffering that I've had over the past 6 years is only temporary and I can look forward to being pain free when this fad is no longer in fashion."

Can you believe that!!!!

-- posted by lasaluv

Top 35. Sep 25, 1998 11:46 AM

» AmberW_2 - Cynthia, I'm glad to hear about your biopsy. That news probably

Cynthia, I'm glad to hear about your biopsy. That news probably helped your FMS since I'm sure it reduced your stress.

Have to tell you about the wonderful day I had yesterday. After trying to see a 1st year resident for the third time (1st time I went into a reaction (I'm insulin-dependent) when it was time to leave for the doctor, 2nd time I was rear-ended 500 yds from the dr's office!), I finally made it. I love this man!

Even though he's a 1st year resident, he knows about us! He put me on ultram and nortriptyline (Pamelor), agreed that people with chronic pain don't get addicted, and approved of my vitamins and ginko. He promised me the side effects were less likely with the nortriptyline than with amatriptyline. He also said to try the ultram and if I'm not helped, we'll try something else. And, come back in a month.

One other thing that happened this past week. One of the local TV stations did a piece on FMS. The piece directly confronted the issue of "just because we look okay doesn't mean we feel okay." I wish I had taped it.

Here's hoping every one of us finds a doctor like the one I just found!

-- posted by AmberW_2

Top 36. Sep 25, 1998 5:02 PM

» rayleenl - Cynthia I'm so pleased about your biopsy, w

Cynthia I'm so pleased about your biopsy, what a releif it must have been. Barb I can't imagine how angry that thoughtless stupid person made you. I was a patient on a psych unit in a general hospital when I was diagnosed with FMS but they still treated me like I was imagining the symptoms, I ended up firing my doctor and leaving the hospital. I had a GP who wouldn't help me get home help because if I got it someone who really needed it wouldn't. I was so angry and scared because I couldn't do much those days. I fired her also. I went to physio at another office it was in the basement with very steep stairs and no elevator or even a washroom in the basement. Oh I could write a book. now after 5 years I have a wonderful family doctor who helps me in any way she can, I saw a rhumetologist (?) but he felt I was doing very well but is there if I need him. I guess the old saying is true for doctors as well as men we have to kiss a lot of toads before we find our prince or princess whatever the case may be. Thanks for your time.

-- posted by rayleenl

Top 37. Sep 28, 1998 1:03 AM

» ______MarcellaGM - Barb, Daniel, I believe I will be firing my doctor. I felt hes

Barb, Daniel, I believe I will be firing my doctor. I felt hesitant because we have had him so long but I find that he has a tendancy to disregard my feelings in so many ways. He is a great doctor for my husband but forget his bedside manner when it comes to women. I am an intelligent, creative, woman but he treats me like an idiot or a whinner. Whinning when you are in real pain is perfectly legit and I find his attitude about my illness appaling. Now I have to begin the search. It will probaly not be easy. Marcella
Pacific Northwest Garden

-- posted by ______MarcellaGM

Top 38. Sep 28, 1998 8:59 AM

» TvBabe - Marcella contact the FM Network located at http://www.fmnetnews.

Marcella contact the FM Network located at http://www.fmnetnews.com. They have complied a doctor's list of doctors that are knowledgeable about working with FM patients. This list has been developed by the assitance of other FM patients who have recommended their doctors to the FM Network, I think you'd find this a great jumping off point smile

Just drop them an email with your city and state and they can provide you with a short list for your area. Even if that short list only has a doctor 90 miles away, call that doctor, he might have heard of supportive doctors in your area that he might be able to refer you to.

Michelle

Contributing Suite101 Editor : Disabilities

-- posted by TvBabe

Top 39. Sep 28, 1998 11:58 PM

» Jausten - Marcella, Michelle is right. With FMS, we need doctors who n

Marcella,

Michelle is right. With FMS, we need doctors who not only understand the condition, but also know how to feel empathy, and I'm thinking of writing an article about the good, the bad, and the ugly doctors. Dan, you'll love it..*g....

Marcella, I just scrolled up and noticed that you live in Eugene. Dr. Rob Bennett is in Portland. He is one of the top researchers of FMS and his web site is one of my top 5 picks. I can also suggest another doctor in Portland if you want to make the 2 hour drive. Eugene is big enough, and I recall a newspaper article from the Register Guard which I believe is located in Eugene that did a story about a woman who had fibromyalgia. Email me if you need some information.

Thanks everyone for adding to this discussion and I do believe that empowering ourselves is one of the keys to being listened to and understood. Firing a doctor isn't a bad thing. I've done it a couple of times in the past, and I recently told my GP that since he was younger than me, he had to outlive me and never move. When we get a great doctor, we don't want to lose them, but when we have an awful doctor, we need to lose them.

Cynthia

Jausten

Suite 101 Contributing Editor: Fibromyalgia

-- posted by Jausten

Top 40. Sep 29, 1998 7:21 PM

» ______MarcellaGM - Thanks Michelle and Cynthia. I will get right on this. I just

Thanks Michelle and Cynthia. I will get right on this. I just found out that a very good friend of mine, who I have not seen for awhile, may have Fibromyalgia. She is looking for a doctor as well. Her present dotor just gives her the run-aroound and basically acts like my friend is a nuisance with her complaints.Marcella
Pacific Northwest Garden

-- posted by ______MarcellaGM

Top 41. Oct 2, 1998 8:41 AM

» lasaluv - Barb Takeda Amber, I was reading your notice in this discuss

Barb Takeda

Amber, I was reading your notice in this discussion about the anti-depressant you are taking. You mentioned that the one the dr. gave you had less side effects. What side effects in particular are you referring to from amatriptyline. The side effects that I suffer from are dry mouth (I think I need to have a direct connection to a faucet somewhere) and I have gained about 30 pounds over the course of 4 years. I started out taking 10mg and am presently up to 100-150 mg per night depending on how bad the pain is or how poorly my sleep the night before was.

Maybe I need to change, I never feel like I had a good sleep when I wake up in the morning, plus my husband says I flop around like fish out of water, so I'm interrupting his sleep as well. Barb

-- posted by lasaluv

Top 42. Oct 2, 1998 3:35 PM

» Jausten - Barb, My specialist has recently started me on Soma, which is

Barb,

My specialist has recently started me on Soma, which is a recommended medication for people with FMS by Dr. David Nye. I only take 350 mg now, but my sleep has improved since using it. Hope this helps.

Cynthia

Jausten

Suite 101 Contributing Editor: Fibromyalgia

-- posted by Jausten