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Need advice for finding a new doctor
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chrichie posted:
This is for Dr. P and anyone else who can offer suggestions to make this process easier.

I have been seeing the same doctor since1999 for many different things. He is the one who diagnosed my fm and he is an internist. In the past few years, I have grown increasingly frustrated with the treatment I am receiving from him. At first, I thought it was just the normal frustration that accompanies fm. I don't think so anymore. He has changed the way he runs his practice and I don't think he really has my well being in mind. There is no longer anyone on call at his office after hours, he closes at noon on Friday, he takes 2-3 vacations a year with no one to fill in for him when he is out, he rarely returns my calls with questions, and when I am there he listens but then he shakes his head and says (almost the same everytime) "I don't really have anything else I can do for you." My quality of life is really terrible and something has to change.

What I want to know is: What questions should I ask a potential new doctor so that I know my concerns will be taken seriously? What is the best way to find a doctor who understands fm? Is it reasonable to think that I might be able to find a doctor who can handle not only my fm but also my other issues that include being on blood thinners? What is the best way to approach the subject of pain meds in order to keep the new doctor from assuming I am an addict?

Thank you in advance for any help you can offer.
Chrichie
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rudyandirmouse responded:
Hi Chrichie, wow you really need to get away from your PCP and fast. This guy really doesn't sound interested in you or his practice. I don't have a lot of advice for you but just felt I needed to say that you really need to find another doctor as the one you have doesn't sound so good.

You didn't say if you were living in a small town or large city. If you live in a small town maybe you should look at going to another city for a doctor. When you do make sure you get a Rheumatologist to handle you for fibro treatment. PCP are nice for colds and things, but for fibro you need to be seen and treated by someone who knows about all it's conditions and symptoms and refer you out to stomach, eye, neurologists, etc when needed.

When you find a new doctor make sure you give permission for your medical records to be sent to him from your old dr. He'll need that to get started with you.. so sign those forms at your old dr.'s off and the new one.

As for what to tell your new Rheumy.. give him a list of all the medical symptoms you are having, the medications, scripted or OTC you have used and they have helped or not helped you and treatments or therapies you have had, like water or chiropractic. Talk to him and let him/ her know your suffer from fibro and that you want a doctor who can help you deal with fibro and the flare ups it has.


Please post and let us know what you

Soft hugs going out to you..
Linda R.
 
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chrichie replied to rudyandirmouse's response:
Linda,

Thank you so much for your reply. It helps just to have someone agree that I need to change doctors. For me, I have had so many medical problems for so long that it sometimes seems as if I am imagining it or maybe it's not as bad as I think it is - especially when my dr seems to be blowing me off.

I will make lists of the symptoms and medicines. I think that is an excellent first step.

Thanks for the hugs and soft hugs right back at you.
Chrichie
 
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booch007 responded:
It does sound like he is shutting down. They are human too and need a life and he may have some real things at home going on that he has trimmed his practice so tight. He will lose all patients being so thin.

In looking for a new doc, my hope would be to look at a large teaching facility near you. They have fellows and are on the edge of medical research being done. Go to the largest one in your area. Get into Rheumatology or "Myofascial Work" Neurology......They both can do it for you.

Ask if they help* FM patients. Bring with you your list of symptoms and ALL the things you do to get better. Non Medical as well. And list of meds taking and tried.

It is SO important and I can't tell you enough that the physician see that you are proactive in your care. That you do so much to feel and get better. Even if 5 lbs were removed from your body...put it in there.

I have always been assertive in saying I need help, assertive in asking for assistance and asking for literature to keep me moving. There is always a smile waiting for me.

This is a frustarting disease for the docs to treat, I wouldn't want to be the leader here. We are a trial and ERROR group and it is hard for them, and hard on us.

Keep an eye in the toolbox here to the right in resources to look for other tricks the elders learned over time and post there if you find something else that helps. WE can all keep learning.

I hope this goes well for you. It is scary to feel you don't have a champion physician to lean on , when you are in pain.

P.S.: I am not much for pain management...but it is also a department that treats FM. Best of luck fro me, Nancy B
 
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Mark Pellegrino, MD responded:
Hi Chrichie,

You've gotten some great suggestions so far. I may be slightly biased as I am a physical medicine specialist but I think an ideal specialist to manage fibromyalgia is a physiatrist (physical medicine and rehab specialist). Anyone who understands fibro and is willing to work with you to try different things would be welcomed!

Just because a doctor is a specialist in pain problems (including fibro) does not mean that he/she is automatically interested in treating or managing fibro over time. Some docs do not want to treat our problem and others may provide a one time consult only and not manage it. Every doctor has different views on fibro patients so it would help if you check first if the doctor is fibro-friendly before scheduling an appointment. Simply ask the scheduler if the doctor actually manages FM. That way you can try to best find someone who can help you and answer your questions over the long term, because our fibro does seem committed to us for the long term,right?!

Dr. P
 
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chrichie replied to booch007's response:
Nancy,

Thanks so much for all the great advice. I wish there were a good teaching facility near here but the reality is that the closest one is about 5 hours away. That's one of the difficulties in finding the right doctor is that I live in a somewhat small and kind of isolated place.

Since I posted I have done some research and have come up with a list of 7 doctors to look into.

After reading the lists of what I have tried and what worked and didn't work I can't believe how many things I have tried. I really hope to find a doctor that can help me figure out a good strategy.

Thanks again.
Chrichie
 
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chrichie replied to Mark Pellegrino, MD's response:
Thanks Dr P!

I appreciate the input. In looking back, I think my fibro has always been way out of the comfort zone of my current doctor.

I would have never thought to ask a scheduler about the doctor managing fibro. That's an awesome suggestion.

You are totally right about the fibro being with us for the long term. I only hope at some point in the future there is a better treatment for fibro.

Thanks for the advice.
Chrichie
 
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NeNe_11 replied to chrichie's response:
I am totally in in the same place as you, Chrichie. I currently see a neurologist who says he can no longer help-mind you, he refuses to put me on any pain medication, but have tried all the different meds for fibro and all they do is make me a zombie. I know tramadol helps me because i have used it before. I have become so used to the pain that only take it when my pain is at a 10 & I have somewhere to be & have to actually function. It helps relieve the pain so I can get through the day. Most days I do not function at all.
Looking for a new doc is such a daunting task-I live in a big city with excellent hospitals but they too refuse to treat fibro in the long term-even those who say they are fibro" specialist". As soon as meds no longer help you they give up on you. That has been my experience so now that I need to find a doc, I am discouraged to even start looking. Everyday I spend about an hour going through provider searches on my insurance site and I just become upset & stressed out & give up hope.
After dealing with this monster of an illness for 10 years, I know what I need at this point. I am no longer working & am fighting for disability-I rarely partake in family life-and there are weeks that I do not even leave the house once due to the pain & fatigue. My quality of life is a zero-I live with my boyfriend & dont know how much more he can take. I believe that if a doc would just put me on a pain med I would be able to work again & actually be a part of the human race. After looking for months, I have finally picked a psychologist to talk to about everything & I will call them tomorrow-maybe that is a start.
Im sorry this is so long- I will shut up & hope you post back! I am so relieved to hear that someome else is going through the same thing & I am not alone here. I do hope you find someone to help you too.
Denise
 
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1wareaglefan replied to NeNe_11's response:
I had to reply to your post, Denise, because I feel for you as well as Chrichie. I'm blessed to have my PCP of 20 years treating me. I've branched out to 2 different rheumatologists, and both were a great disappointment to me. The first one was so rude, I knew I couldn't and wouldn't work with him, and the second one only wanted to tackle the sleep aspect.

I tried what they wanted me to, but there was no relief. And like you, so many of the typical fibro drugs have too many side effects for me. They were not willing to go the pain med route. I even went to a pain management doctor, but he mainly wants to do epidural injections. I tried 2 of them, but the relief is short-lived and not without side effects.

So back to my PCP. I finally went to him telling him what all I'd tried, and I was still in too much pain to have a decent quality of life. So he prescribed low dose pain meds for me. I have to tell you, I really felt guilty about taking them at first. But then I realized how much they helped me, and that it was ridiculous to resist help that was out there.

I'm saying all of this to give you the point of view from someone who is greatly helped by pain meds. They take the edge off my pain so that I can simi-function with my life.

I sincerely hope both of you are able to find a doctor who is willing to give you the help you need.

Take care.....Elizabeth
 
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chrichie replied to NeNe_11's response:
Denise-

I am so sorry to hear what you are going through. It sounds so very familiar because most of it is exactly the same as me. The parts that are different is that I am thankfully married to a wonderful man who tries to understand even though he can't and I have 2 beautiful daughters who try to help when they can. I would have given up long ago without them.

I am an pain meds. They do help but I am also filing for disability with the help of an advocate/lawyer. I used to be on lyrica and it worked but I lost my insurance and eventually my job and it's way too expensive.

Talking helps. I have a psychiatrist who has me on meds for depression and bipolar disorder. When those are under control my pain is less.

I would welcome a post from you anytime you need to be reminded that there is someone who gets it. I think we all get it here.

Good luck to you and thanks for your post.
Chrichie
 
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chrichie replied to 1wareaglefan's response:
Elizabeth-

I know your post was mostly dircted to Denise, but I wanted to share that I felt some guilt or maybe shame when I first started taking a regular dose of pain meds everyday. I think there is a stigma about it because so many people get addicted. I know I worried about what others might think. The relief was enough that I got some quality time with my family and I no longer worried as much what people thought.

I am so hopeful that I will find a doctor that works for me. I think the suggestions given will be a big help. Thanks for sharing your struggle. When you go through something like having trouble with doctors believing you or not wanting to treat you, a sort of doubt creeps into your mind (at least it did in mine) that you are making it worse than it is or you are just being a whiner but knowing others exerience it too helps alleviate it.

Thank you again,
Chrichie
 
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Ssd01 replied to chrichie's response:
This is my first post, but I thank you all for your courage in posting your experiences. I too need pain meds to function when the pain is severe. I feel like a loser cause I can no longer just suck it up, and have developed an allergy to NSAID's. I have another chronic disease that complicates the fibromyalgia, but saw a new MD today who couldn't have cared less that I was there. Suggested cognitive therapy and acetaminophen. I'm ok with trying the therapy, but she never even said the word fibromyalgia , but told me I should sleep more. Which is fine, but the pain won't allow it! I still work full time, but feel like crap most days. When I asked her if I had fibromyalgia, she said"oh yes". And she is a rheumatologist . Thanks for listening and for the helpful posts, God Bless
 
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chrichie replied to Ssd01's response:
SSD,

I totally get what you are saying. It is frustrating when you are trying to explain the need for pain meds and have to explain why you can't take certain things and people assume you must be a drug seeker. I can't take NSAIDs either but that is because I am on a blood thinner. Even though most doctors know that I still get suspicious looks when I ask about pain pills. I have the sleep problems too but haven't found anything but ambien that ever worked for me. I can't afford it now because I don't have insurance. You might ask the doc for a sleep aid.

I am fairly new to this group myself but have really found it to be a great comfort and very useful as well.

Good luck to you and God bless you as well.
Chrichie
 
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1wareaglefan replied to chrichie's response:
Hello, Chrichie.....I understand about the guilt of taking the pain pills! In fact, I'm trying to work up courage to go back to my doctor and ask that the dosage be increased.

He's got me on the very lowest dose of hydrocodone, and I think it needs to be increased a bit. I waver back and forth about taking them or not. Sometimes I think I'll just suffer with the pain. It's a terrible way to live, isn't it?

I'm feeling pretty low with my life right now, but it is a comfort to talk to others who understand completely. I sincerely hope you're able to find a good doctor.

Take care......Elizabeth
 
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kswagert replied to 1wareaglefan's response:
Hi I totally get what everyone is saying. I was with my family physician for 21 yrs and then I was diagnosed with fm. He also said he could do no more for me so I had to find a new Dr. I did and he started me on pain meds it was the best thing that ever happened to me. We also starting playing around with different meds until we found what worked for me. Now I also go to pain management and they prescribe my pain meds. I'm on high doses of several different pain meds but I can have a life now. This day in age you should not have to go around in pain for the rest of your life.

GOOD LUCK EVERYONE
KSWAG


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