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Pre-Diagnosis Question

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Fibromyalgia
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sassy4scc
Regular Member
Joined : Jan 2012
Posts : 22
Posted 1/13/2012 12:55 PM (GMT -8)
I'm struggling a lot lately in search of trying to get an answer. My doctor had stated previously that they were going to refer me to a rheumatologist is now not responding to faxes or calls regarding the obtaining of my records. I called my current doctors office to see if they would supply a referral as well as submit all my blood work and test results so that I could be seen by the rheumatologist and I was beraided with questions like " I guess you have pain then?" and " Do you have arthritis or something?". I feel like doctors and friends all feel like I'm crazy. I'm extremely discouraged and maybe even slightly depressed.

Is this a common reaction of doctors and friends? Did you struggle with wondering if you were really just crazy? It's been going on so long with no relief that sometimes I wonder.

I guess I'm just a little down today after being on the phone with 3 doctors all day and I just needed to know that I wasn't the only one who had ever felt this way. Do you have any advice on how to get people to understand or take you seriously?

Thanks for understanding. At least I feel like I can be understood for once in my life by having this forum.
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Sherrine
Forum Moderator
Joined : Apr 2005
Posts : 18427
Posted 1/13/2012 1:46 PM (GMT -8)
I wish I had the answer for you but we have all gone through this.  Since we look just fine, people think we are just fine.  You can't see pain but, trust me, if they had this pain, they would be squawking!  It's flat out ignorance. 

 

You shouldn't be given the third degree when asking for your medical records.  They belong to you and no one else.  They wouldn't have those records if you hadn't paid for all the testing.  Call again and tell them the day you plan on picking up the copies for your rheumatology appointment.  When I was planning on moving, I went personally and got my records with no problem at all.  

 

Your doctors shouldn't be asking if you have pain.  They should know this already.  If they haven't "gotten it" by now, you need new doctors.  You need doctors that treat fibro patients.  You need to ask before you ever make an appointment.  You see, if they don't really believe in this illness and all your tests come back normal (as they usually do with fibro), they think it's all in  your head.  You need a doctor that understands this illness.

 

As far as friends, just learn to tune them out.  Consider their ignorance of fibromyalgia if you have tried to explain this illness to no avail.  I just usually say I suffer from a chronic pain illness and then leave it at that.  If they ask questions, then I can try to teach them about fibro.  If they act stupid, I just ignore them and change the subject.  There is no sense in stressing over this and causing yourself even more pain.  YOU know you have this pain and YOU know you are not crazy, either.  You couldn't possibly make up this illness!  

 

We do understand where you are coming from.  Please don't stress over this.  Take one day at a time...plugging right along...and you will be just fine.  You will find a good doctor that understands this illness and that's half the battle right there.

 

Let us know about your rheumy visit because we really do care about you.

 

Sherrine 

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fibro ?
Regular Member
Joined : Nov 2009
Posts : 76
Posted 1/13/2012 1:59 PM (GMT -8)
Some people are just plain stupid,, dont pay them any mind,, there not worth it,, thres a saying I use all the time,, make sure brain is in gear before moving mouth
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daisy76
Regular Member
Joined : Nov 2011
Posts : 218
Posted 1/13/2012 3:05 PM (GMT -8)
Hi Sassy,
I really empathize with you. It's been an EXTREMELY long and frustrating process for me and I'm still in the midst of finding the right Dr's.
It's been implied and even flat out told to me by more than one Dr that they belived my problems were nothing more than depression.
I have learned that this is a nice way of saying they believe it's in my head.
I'd leave those appointments more depressed and hopeless feeling than ever. I did begin to wonder IS this all in my head? After so long of having Dr's look at me blankly and say they could find nothing wrong, I started doubting myself. But you know your body and you know when something is just not right. Noone who was well would choose to spend their time or money seeing Dr after Dr.
It's just a matter of finding the right one, no matter how exhausting and hard the process is.
What I've learned is alot of Dr's out there still do not believe fibro or CFS are real (which is where I'm at right now trying to find a Dr for CFS)
It's important to find one who not only believes in it, but is knowledgeable about it as well.
Our experiences are varied, so for me, it came down to finding a Dr called a physiatrist (specializes in pain)to finally get a dx of fibro.
That was after a not so good visit to see a Rheumatologist who spent less than 5 minutes with me and did not do the pressure point test.
So just don't give up. Eventually you will get answers.
Sadly, you may have days where you question your sanity or feel down, that's when it's great to come here and comiserate with other's who get it.
Keeping a positive attitude and remaining hopeful are really important.
Wishing you the very best.
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Acheybody
Veteran Member
Joined : Nov 2008
Posts : 6036
Posted 1/13/2012 7:17 PM (GMT -8)
Sassy,

It's so discouraging when no one seems to believe you, but you are definitely not alone! Keep looking for a good doctor!

When I was still trying to find out what the heck was wrong with me, I had one doctor walk into the room, introduce himself, and ask if I had a sexual dysfunction (whaaa?? I had come in for back pain.)

Another advised me to have my husband take me out for Mexican food to clear my sinuses so I'd feel more energetic (gee, thanks!)

A third told me that all my friends probably felt just like I did, but they didn't assume something was wrong with them (um, nope.)

FINALLY I found one who spent 2 hours listening, examining, and reading my big, fat file. He introduced me to the concept of fibro. He happened to be an allergist/internist, and he's still my doctor 20 years later.

Debbie
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sassy4scc
Regular Member
Joined : Jan 2012
Posts : 22
Posted 1/14/2012 8:27 AM (GMT -8)
Thank you everyone I appreciate your words more than you could know.

Good news!! All my information has now been sent and I will be getting a call next week with an appointment time. I've never been more excited for an appointment. I have been able to read a lot of the articles that the doctor I will be seeing has published and I feel extremely hopeful that he may finally be able to help me.

Trying to keep my head up. My body aches and sleep is sparse but hopefully relief will come soon.

Thank you all again. It means so much.
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