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Joybird56

New member
Joined
Jul 21, 2016
Messages
8
Reason
Undiagnosed
Diagnosis
07/2016
Country
US
State
TX
Yesterday my rheumatologist diagnosed me with fibromyalgia, but I am not sure if this is the correct diagnosis. For the last 12 years my main symptoms have been burning pains in my hands and feet, that can sometimes involve most of my body, that usually start at night, and end when I get up in the morning. Occasionally last all day. I have bad varicose veins and it seems like this painful burning is in my veins. Food allergies - the better I have this under control the better I feel. Very dry eyes, nose, throat - I drink a lot of water. I take B12 and thyroid medicine - without them I have no energy. Sometimes I am very tense and sometimes have problems with my jaw and tongue tensing up and causing a headache.

I have some aches and pains, light sensitivity and headaches, but I do not have painful spots on my body. I have some tiredness, but not to the extent I am seeing in other people's posts.

I was negative for all auto-immune diseases, and negative for inflammation. All the tests were negative.

So is this fibromyalgia if I don't have a lot of muscle pain and painful spots?
The rheumatologist was sure I had Sjogren's Syndrome before all the tests came back negative.
 

SierraTrout

Active member
Joined
Jun 28, 2016
Messages
39
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
CA
I was just diagnosed last month so am now trying to learn as much as I can. Others on this board have had years of experience and hopefully will share their thoughts. Do you know what specifically your rheumatologist based his/her diagnosis of fibro on? Mine based his on my medical history and current complaints; the numerous tests which ruled out other conditions; and the presence of most of the 18 tender points. The most common symptoms are widespread pain (which can move around the body); unrestful sleep; marked fatigue; and brain fog. But, as you will find on this board, there are a multitude of additional conditions or symptoms which can pop up -- everyone seems to be unique in their presentation of fibro. (All this aside, your varicose veins could explain the burning in your legs, but not your hands). I hope you find the answers you're looking for. Good luck and have a good day.
 

Joybird56

New member
Joined
Jul 21, 2016
Messages
8
Reason
Undiagnosed
Diagnosis
07/2016
Country
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State
TX
Thank you SierraTrout. I have been looking around and it looks like some people here do not have the pain spots. I sort of feel like the rheumatologist does not know what to do with me, so he threw me in fibro. I could be wrong though. At least he is taking my symptoms at face value and never gave me weird looks. I have been to 8 different doctors already.

I didn't mention all the weird sensations I have sometimes. Electricity feeling up and down my spine, feeling like bugs are crawling on my skin, feeling like someone just flicked a drop of ice cold water on my arms. I also have pain in my armpits. A tender spot there, but there is no bump like you would expect if it was a lymph node. Also some breast tenderness.

I have MTHFR also and that is why I take B12 shots and other B vitamins. I am currently taking about 300$ worth of supplements a month, and that makes me feel really guilty that I am spending the family's money on myself.

Also I can hardly watch TV anymore because any suspense or tension in the show makes me anxious. I have to watch HGTV, lol. Sometimes I am so physically tense, and then I get the jaw pain and tongue tension and pain from my tongue pressing on the roof of my mouth. I take a lot of 5-HTP and Theanine complex for tension and to help me sleep.

Does any of this sound familiar to anyone?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
My hands hurt to much to type a lot but your symptoms do sound very much like fibromyalgia...all the sensations and the being around tension from the tv and the resulting jaw pain etc

It sounds like you may have it fairly mildly if the burning pain stops in the morning and the rest is some aches and pains but not too debilitating.

Look after yourself well and pace your activities to minimize the fatigue....then if it is fibro you may have lots of good days ahead.
 

Joybird56

New member
Joined
Jul 21, 2016
Messages
8
Reason
Undiagnosed
Diagnosis
07/2016
Country
US
State
TX
Thank you for your kind words Willow. I think if I know for sure what I have, then I will be able to treat it better. I always felt there was some one thing unifying all my symptoms, but figuring it out was really hard!
 
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