Last night a flare started and got worse from there. Must of been a 15 on a scale of 1 - 10. I still have the flare and want to give up. I come so close to giving up . I had an appt. with my neurologist this am. I see him every 2 months. It is a JOKE! He doesn’t want to know how I’m doing or what’s been going on so he would be able to help me, instead he ask me 1 question , doesn’t listen to my answer while he writes my scripts and tells me see you in a couple months. He’s out the door. Are there any doctors left that really care? I’ve been putting up with this since 2007 . He believes in fibromyalgia ( he diagnosed me, so i guess he believes) and at least gives the scripts I need . Anytime I’ve told him of what my body is going through he says it’s not from fibro!! All my complaints have been fibro related. It’s crazy and I’m so done!!! I am suppose to see a rheumatologist for the first time at the end of this month. What if this doc is the same way? What if they don’t believe in FMS. I’m so afraid of not making it through this crap! I have always been strong and the type to never give up. It is the ignorance , uncompasioate dr.s and the pain that is taking me down! We go to them so they can try and figure out how to best help us and that’s not what happens. What other choices are there ? Is there a way to find a good doctor that will help? I don’t know… Sorry, just am so done! Thanks for being there. Lisa
So sorry to hear this, he's just paying his rent by filling your script! How abominable!
Yes, the Rheumatologist! I'm so glad you are going! I went to a neurologist before seeing my current Rheumatologist, he was really only good to do the nerve and muscle tests, that's all. He diagnosed me as 'stiff'! Had no clue about the 3 autoimmune diseases. That's right, so the Rheumatologist, my primary and the Chiropractor are who I see now, hopefully I can do everything that needs to be done with these guys!
Lisa, I'm sorry you"re experiencing so much pain, and the person you rely on for help isn't listening. I never had a neurologist, but because of my osteoarthritis i've had a rheumatologist for several years. He was new when I started and very attentive. When I developed fybromyalgia and described pain in different areas, I felt as though he was treating me like a hypochondriac. Before I would see him again, I wrote a letter, forcing him to hear me out without interruptions or a rushed visit. It worked, his office called me to come back and he diagnosed me. Now I blame my insurance for not provining me with the treatment I need. Try sending a letter describing your physical pain, as well as your emotional pain & frustration, about a week before your visit. Best wishes, Annette
Don't give up, Lisa! We believe you! And yes, plenty of docs do believe in fibro, just as many still don't. Those who don't should be ashamed of themselves, as they are doing no service to their patients by not getting educated. No excuse for their laziness on the matter.
Give the rheumy a try. If he stinks, fire him. There's always a good one out there who'll be willing to listen to you and to treat you.
The National Fibromylgia Assoc US provides a provider list:
http://fmaware.org/site/PageServere7aa.html?pagename=resources_hcProviderDirectory
The names of docs came from patient referrals, not the association itself.
That's truly criminal, SK. "Stiff." LOL! Ya think???
Hi Lisa, unfortunately your story is all to familiar, we can’t give up … If it means going to a different dr. Every month for 6 months, 1 year, 2 years, how many ever we need to, until we find one that will listen.
I have learned to come right out and ask if they will you help me figure this out ? The last dr. I saw was a so called fibro specialist … I knew more about fibro than he did, after 2 visits he agreed he had nothing to offer me, more than what i was already doing, and I gave him articles on the latest research on fibro and told him I should be charging him … Lol
They just have no clue what to do with us, and many are to proud to admit that.
You deserve a Dr. That will at least listen to you, so although this one is treating you, and he obviously believes in fibro , I would keep him for those reasons, but I would also keep looking for one that is keeping up with the latest research and takes an interest in pt’s with fibro.
I think going to the rheumy is a good place to look, many are knowledgeable on fibro and have some great ideas and thoughts, sometimes it takes going to several to find the right one.
Hugs & blessing
dee
Hi Lisa - I am so sorry you are going through such a horrible time right now. I think all of us, at one point, wanted to give up because I have always told people on this site - that we seem to spend more time trying to find a good doctor then we do taking care of our Fibro. Please keep your appointment with the rheumy. You will never know if this doctor could really help you otherwise. I am sick of Neurologists. I don't know why I was sent to them in the first place. They deal with the head not with what we have. Mine never really gave me answers. Like your doctor, he would spend maybe 10 minutes with me if I was lucky, and then out the door he would go. I told my nurse, Megan - to never refer me to a Neurologist again, unless it related to my head!! So, I gave up on him a long time ago. How dare that doctor tell you that 'it's not from Fibro!' He doesn't really know anything about it, Lisa. This is just so unfair!! Unfortunately, doctors are NOT what they used to be. My Dad was a doctor, and he was just awesome. But he came from an entirely different era then what we are exposed to, today. Lisa - I do hope you will go ahead with your appointment with the Rheumy. You have all of us to give you support and adivce and I know everyone here will do there best to help you. Love, Laurie
Oh dear Lisa
When the pain is eating away at us when we are in a flare and the doctors you go to are not helpful it is hard to hang on. I was in a bad pain flare a few days ago and the pain almost had me in tears. It does drag you down. But my GP doctor is good. He listens to me, but I have learned that if you make an appointment for one thing that is all my new very young GP wants to hear. One time I phoned for an appointment and I said I have some things to discuss with my doctor so I want to book half an hour and that is what happened so I have learned from that experience.
I agree with SK when she says your doctor is just paying his rent by writing your scripts and that is terrible. I hope you have a better experience with your rheumatologist. Don't be afraid of finding a new doctor if your current one is not really listening to you. He doesn't deserve to be your doctor. So don't keep him. The worst thing that can happen is to go to your doctor's appointment and come away feeling let down. You need to find a doctor who cares about you. That will make a lot of difference in your life, Lisa.
Don't give up trying to find a good doc Lisa, please. It took me years, unfortunately. I have a family doc and a rheumy who are useless. The one good thing my rheumy did was to send me to an internist because she didn't know what was wrong with me.( besides lupus, scrojens, raynauds, etc). Anyway the internist is fantastic. She's the one who diagnosed me with fibro. She listens to me, actually listens. I'm hoping she'll continue to treat me after she gets my meds staightened out. The only thing I don't understand is most of the people here see rheumy's for their fibro, so how come mine didn't know what was wrong? Hang in there, hopefully yours will be great. Hugs, Charlie :)
HI dee - When you mentioned that you knew more than your doctor did - I thought - ''been there, done that!'' I can't tell you how many doctors over the years have completely disappointed me. To know more than your doctor, is NOT a good thing! But, I do like to be informed as much as I can. The secret and sad thing about all this, is we need to be our own Advocate. If it means we have to really study up on the conditions we have - then this is what we need to do. Years ago, when I was growing up, the doctors were just awesome!! I had total trust in them and never had trouble with them at all. Now? It's pretty bad out there. Going to the hospital for surgery didn't scare me at all. Again - it was the fact that the doctors were so good and I trusted them. Going to the hospital nowadays is a pretty scary experience. I try my best to stay out of them!! Love, Laurie