Fibromyalgia Community

Laura,

Just as I read these words with your heavy heart...and I hear it though those the words have no tone....this is how I would go to her.

I would just be honest, as honest as these words are. "I thought you believed in me? Ithought you understood that years of pain is what has changed me into this. How can you dobt all the literature on this issue I face" Share how you are hurt.

I am sorry you are in such a low place, don't you wish you never read it? At times I wish I never found things out. At times I am "shared" things that are hurtful and IT a person no good to have that knowledge.

If she cares for you in other ways well...then maybe just keep this negative to yourself. It will not be helpful to open this box...

You have to decide if you really want to have this conversaion and hear what she really has in her. Good luck, Nancy B

Hello....MiMi in NC...I just wanted to tell you that *NO ONE understands what *you* (we, fmers) face each and every day....they do not have a *CLUE*....only when and IF a person can *walk in your shoes* would they completely understand where we are in our journey with this illness....I am sorry but I will also tell you that I have tried to talk myself into not feeling the pain that I have....in the beginning I actually did NOT believe that what was going on was real....that it was something I could over look...this is NOT TRUE...

We, FMers, have to learn to deal with the wrath of the dragon....and as Nana B says....learn to *dance with the dragon, instead of draggin it*....but this is indeed a very hard thing to accomplish...

I guess I do not exactly understand since you said you got your SSD back in 2009....perhaps you need to get another doctor who truly understands FM and knows how to treat it...as you are probably aware there are still a lot of doctors who still DO NOT BELIEVE IN FM....perhaps she is one of them.

If this were me...well...I would not even waste my time...

Take care and good luck.


MiMi

Hi Hun... I am so sorry this has happened to you... It also happened to me and to me it was for the best... I had always felt that there was something missing between me and this certain dr... She always came up short on certain subjects and when I read her report I knew why...

I have multiple problems to deal with which mean multiple drs... One thing I have learned is they all have to believe in me... Not just half of what is going on with me... all of me... Which means they all have to believe in FM and what my pain is doing to me... I have been told by my drs that no dr can treat me as a whole picture if they don't... And even tho each dr takes care of their little section of me they each treat me as a whole... for everything I have effects the other... So if my dr doesn't believe in me and my pain... or me and my MS... etc... I release them... and find one that does...

I say yes confront her with papers in hand... Ask her how she can treat you and not believe in you at the same time... Maybe by now she has changed her mind and does believe differently... Maybe talking to her can get her to see things differently... Be honest and upfront with your feelings about this to her... And be open as to how you see things differently... This is the only way she can treat you as a whole... We too need to be open and honest with drs to allow them a chance to accept and treat us...

I wish you luck and hope for a good outcome... If this is your choice to follow... It is just what I practice for I learned that dealing with drs that didn't totally believe in me only got me half of what I desearved...

Take care and I hope you can come back more often to write... I too have bad hands especially since now I have Parkinson's disease too and it takes me forever to write but it is worth the pain I just take my time and correct lots lol...

love... Jan/Dakota

I know the feeling. However my doctor did it in a more compassionate manner in person.

He told me with all sincerity, "don't give into it".

I took it to heart because he said it with compassion and sincerity.

I haven't given into it yet but it has not been easy.

One thought: maybe at the time she knew that your ssd would be more easily approved from that point of view. Only this year did criteria for FM get established for disability.

You said it just right Nancy, I wished I had thrown those away as I planned it was just so much shredding.

I do plan on talking to her my next visit....my first idea was to never go back, but I hate starting over.

laurab

Thank you all,

I just needed it out to ones who would understand how it feels as pain is so silent.

Yes it did help with me winning my SSD and she is always compassionate, but I need to find out if she believes the pain is real.

laurab

Hello Ib707,
Because you seem pleased with this doctor in other ways, I feel it's best that you discuss this issue with her. It's hard to find a good doctor. I think you will feel better in hearing what she has to say.

Giving your doctor the benefit of the doubt along with all other people who don't live with chronic pain, it's really hard to understand just how one suffers, especially so with Fibro as it involves so many symptoms, many of which are strange. Prior to your acquiring this condition, could you have imagined the pain (& the many other symptoms that go along with Fibro) that you now endure? I know I could not & therefore, I give others a bit of a break when it comes to relating & understanding the condition. That's not to say that those who care for us (including doctors) can't feel compassion towards us.

Your doctor helped you in being awarded SSDI & that indeed is a sign that she has your best interests in mind.

Please let us know the outcome.

georgia

Laura...I am so glad to hear from you..I was just thinking of you and wondering how you are doing..

So sorry you are going through this..Glad you got some good advice..as I wouldn't know what to do..

I have been struggling with fm lately too..and I have made an appointment to see my doc for my yearly check up and talk to her..I know she will suggest going back on the meds, and I don't really want to do that, but not sure what else to do...

Hang in there..
cece

Cece,

Sorry to hear you are not so good, just be glad you have been off meds for awhile. I don't miss you guys so much because I read. I even read when you got meet Rozz pretty interesting.

laurab

Oh you two.....when I saw this post written to cece I thought "dang brain"...I thought thatw as Laura? OMG how embarassing . BUT it was two old buddies talking to eachother.

Laura it has been a long time since we have seen you, please stay and post for the others you are so valuable.

I also think sitting and talking to your PMD is also so valuable. A relationship is something to cherish...good luck. Hugs nancy

Nancy, Nancy, Nancy

You made me laugh, yes I started the post and even replied to you. I am so glad we all understand the fibro fog.

Laura

Hi from the Chronic Pain Support Community.

My bff has Fibro so we both read both communities together.

I have read the responses and have much of the same thoughts as the others, but did not see mentioned that the note was 3 years ago.

Maybe she didn't know you and your your illness as much as she does now.

I would also suggest that the MDs know the "buzz words" to get us approved for disability.

Best to you,

Beth (and Debby, the friend )

I, too, received a troubling response from my new rheumatologist. Before going to him, all i had to back up my disability claim for fibro was my pcp. My new doc seemed to really understand me. But after only two visits, he filled out a form stating i could do light, medium or sedentary work 8 hours a day! That's just not possible! Now what am i supposed to do?