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treshayc

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Joined
Jul 2, 2015
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5
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Undiagnosed
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00/0000
Country
NC
State
NC
I don't really know where to post this. I guess I'm just venting about my worries so I'm putting it in here.

I've been in pain and dealing with fibro symptoms for almost 3 years now (I know many of you have suffered much longer). My psychiatrist (who also does primary care) has diagnosed me with Fibro using the tender points touch. That was at the beginning of all of this. But I doubted her at the time and sought out a new PCP.

I need to get in with a specialist, but have no idea what kind of specialist to see.

And honestly - I'm SOO afraid they'll say it's not Fibro. I'm not as worried that they'll say it's something more serious - I'm actually more afraid that they'll say it's nothing. All in my head...psychosomatic.

I've dealt with pain my entire life. Mental, physical and sexual abuse as a child, no one knew about it and still the pain I carry from that is invisible to the world. I've always felt very misunderstood because I had such deep mental pain from what I've been through but no one knows and I'm dealing with it alone.

Now I'm dealing with this pain, fatigue - some days I literally can't stay awake,"buzzing" feeling throughout my body. I try to explain what it's like and all I can think of is restless leg syndrome throughout my entire body. I also have mild jerking issues. I'll be sitting watching tv and trying to relax and that's when I get the twitches. I'm embarrassed about it so I always just act like I was moving my arm or leg.

I would love it if these symptoms all disappeared and I could go on living a "normal" life but they aren't going anywhere, they are getting worst.

Now my biggest concern is that I'll finally find a specialist and they'll say there is nothing wrong with me. I need to know what this is. I need it to have a name, I'm sick of not being able to participate in things and no one understanding why. When I say I'm too tired people think that means I need to get out and do more.

My mom says I need to stay positive and not focus on the pain. I'm going on vacation next week and worried I won't be able to keep up. I think it's a legitimate concern but my mom said if I think that way I will bring it on myself.

That makes me so mad. I wasn't thinking about being in all this pain when it started.

So, what if it's not Fibro? What if they say it's all in my head? I know it's not, my psychiatrist and psychologist feel that it's Fibro and before I ever brought it up my psychiatrist was diagnosing me with it so I know I'm not just making it up.

I just want to know what it is so I can tell people when they ask why I can't do certain things anymore.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
treshayc,

Welcome.

knowing and accepting that you have fibro is the first step.

explaining it to others is not going to make it better, its going to make it worse.

the fatigue you have will cause you lots of pain too.

the nerves are really causing you pain.

the twitching is your muscles sending so many messages to the brain to send pain that it gets overworked and starts to do that.

learn about fibro by reviewing my post "what is fibromyalgia"

then my post "starting a daily log book and why it helps"
the book will give the doctors the proof they need to help you.

the other things instead of fibro, you really dont want them at all.

do only as you can on the vacation. do stretching and mediation each night and morning.

you dont need to explain yourself and how you feel to anyone. especially your family.

venting helps to reduce pain levels. keep coming here for support.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,529
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome, it's true u don't need to explain anything to friends and family.but it's in our very nature to do so. U can easy find web pages to print out on what Fibro is.
Or just send them here to read up what ppl are saying x
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
good advise forget!
 

brahmatorry

Active member
Joined
Mar 4, 2015
Messages
75
Reason
DX FIBRO
Diagnosis
06/2012
Country
ind
State
sumatera selatan
If it is not fibro. Maybe osteoarthritis or multiple sclerosis or spinal stenosis or cancer or blah blah. Accept yourself if you have fibro. I need 2 year accepting that i have fibro inside me. We are fighting the pain everyday to live.
 

mash0825

New member
Joined
Oct 15, 2015
Messages
7
Reason
DX FIBRO
Diagnosis
01/2015
Country
US
State
CA
Hi treshayc,

I know how you feel. Every time I get a new symptom I think "what if it's cancer/diabetes/etc". I don't really feel like my doctors have done sufficient testing to properly diagnose me.

That being said, today I saw a new primary care physician (my last one asked me how long I've been a hypochondriac. Needless to say I'm no longer going to her!). He said that trauma (someone dying, abuse, an accident, etc) can trigger fibro. If your doctor says it's all in your head then find a new doctor. I have seen 6 different doctors and the one today is the first one to take the time to listen and try to figure out how to properly manage my fibro.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
A rheumatologist usually diagnosis fibromyalgia in the UK. I diagnosed myself first from all the tender points and the way the pain evolved bit by bit over about a year. It first affected my feet then left leg knee and shoulder and arm.

It followed emotional stress over an extended period and then slipping off a step falling onto concrete breaking a foot.

For ages i tried to convince myself it must have been the fall and i had injured bits of me although it didn't hurt at the time.

Then one day i was in a supermarket picking regular things off the shelves and my right arm started to ache out of the blue....then my bottom legs neck etc started hurting when i was driving....it drove me nuts i thought i was going crazy.

I would go clothes shopping and my back would ache carrying clothes to the changing room and i just wanted to get home and crawl into bed with a hot water bottle and my legs would hurt so much i would be limping back to the car after being out.

This illness just creeps up until you can't deny it anymore...as much as we hope we are wrong!

Personally i would want my family to know what it's like and to be informed about what this illness can do so that they are as patient and supportive as possible.

Again we are all different.

However tips I have picked up from this forum is don't go on about the pain in too much detail too often to your loved ones. I have made that mistake...they don't want to know all the time'

Look after yourself as a priority and you will learn to manage and have good days. Good Luck oh and i have the buzzing sensation...i call it vibrating with burning pain
 
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