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Shinyperson

New member
Joined
Aug 5, 2015
Messages
4
Reason
DX FIBRO
Diagnosis
07/2012
Country
US
State
OR
Hi all, glad to find you! I am 46 and feel like I am dying. On some does I wonder if I will. It terrifies me. I don't want to leave my 3 1/2 year old...not yet.

I was diagnosed 3 years ago and have tried every med out there. Currently I am on Oxy and ambien at night. I get about 40% relief from my pain which is not enough. Some days are better than others. I am also GF and eat very helathy. No energy to excercise let alone the pain assocaited with it.

I need to find an EXPERT doctor. I am in Portland, OR and am willing (and desperate) to travel. Does anyone know of a great doctor who can help me?

I also was thinking or trying the new Fibro test. It;s $700 and my insurance doesn't cover it. Has anyone done this test. They say it's 93% accurate.

Glad to be with my peeps and thank you for having me.
 
Welcome to the forum.

First you can not die from fibromyalgia or the other things associated with it.

thinking like that is just stressing you out and causing you unnecessary pain.

deal with the fatigue that you have. there are many things you can do to reduce your pains.

get on the meds that block the signals to the brain.(nerve blockers) they will reduce the number of signals that the brain
receives to send pain everywhere in your body. they are not pain killers. your brain is getting over worked. your nerves are getting over worked
causing you move pain as the signals travel through the nerves to the brain.

learn about fibro. under general discussions find my post called " what is fibromyalgia" also see my post "starting a daily logbook and why it helps"
you will learn from those posts. do what they say. also post within them so it can be moved to the top of the threads.

i have not heard of a test for fibroymalgia outside of the tender points test.(free online)

sounds like you do not believe you have it. you must first come to terms with accepting that you have it.

Spending $700 on a test to confirm that you have it sounds ridiculous to me. there is reason your insurance wont pay for it.

Put the $700 in a college fund for your 3 year old.

call your local hospital and ask for the case worker. they can give you a referral to a doctor that believes in fibromyalgia.
if you have tried the meds like you say. then you have a good doctor that is willing to help you. why change doctors?

Ive never seen or heard of an Expert doctor for Fibro.

The experts are here in this forum. the folks that live with it everyday.

knowledge is your key to reduced pain.

You said "I am also GF and eat very healthy. No energy to exercise let alone the pain associated with it.

You need to find the foods that affect your fibro. eating healthy is not eating for the Fibro body.

If you dont have the energy to exercise, then you should find the things that will help you get energy.

You need to pace yourself with exercise. the key is just keep moving. dancing is a great exercise.
the music will relax you as well. it will help to get your mind off the pain. dwelling on the pain only makes it worse.

ask us questions so you can learn.
 
Welcome ,and I can't agree more with what cmetryme has said.u can't die from fibro but yes u can feel like u are.
Nerve blockers are a must .i take amitriopline and that helps me sleep. The better sleep u get the less pain u will have.
I've heard of the fibro test but that's a lot of money to be told u got what u got.and your still be in pain.
No one wants this rotten illness.and u sound like I was for years. In denial and hoping it was something else .but when u think of the alternatives we are very lucky.
Your grieving for your old life and abit lost about this new one.stick around here and learn from others .your not alone my friend I can promise you that.
 
Just what they say, they dumb down the nerves to help get less pain.
 
they block the number of signals that the brain receives to process pain. nothing else.
our brains are receiving so many signals to send pain through out our bodies, that it cant keep up.
the signals are sent through the nerves to the brain. they are geting over worked as well, causing us more pain and numbness.

they are not pain killers. they dont make the pain stop.

They were designed for reducing seizures. the meds are Lyrica, cymbalta, gabapentin and another one that the FDA has aproved.
 
(Fibro test? 700.00? I'll be asking g my gp. Next time I see her. Carefull about gimmicks.
 
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