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efantauzzi

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Aug 13, 2013
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3
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00/0000
Country
CA
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Alberta
Hello everyone!
My name is Emilia. I was only diagnosed last week but have spent countless years in and out of hospitals to only hear that "it is in your head", "see a psychiatrist", "you must be a drug addict". I am a nurse and never put two and two together. I spent years of hospital visits telling me I'm a drug addict due to the fact that I know what pain killers worked for me. I thought I was suffering from costochondritis and have been on muscle relaxants and tramadol for about a year. Spending months on end crippled in bed I even started thinking it was in my head. I was embarrassed to tell my boyfriend and doctor that the pain in my hands that wad in my hands had moved to my elbows, shoulders, neck, back, hips, thighs, Knesset, calves, and feet. It sounded crazy in my head...what were people going to think? It sounds crazy to say that barely any bone or muscle in my body wasn't in pain. I called my doctor to find she had moved to a new clinic. Upset, I saw a new doctor and he opened my eyes. Years of GI tests and medication and finally I saw some light! Sorry about the verbose post but for once I can see a little light. I have so many questions and am so hopeful that I can take ease in a group like this! Thank for reading!
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Welcome to the forum. We have all been put on the spot or made fun of by doctors and family members. The pain of fibro is non-ending without the use of meds, but it is often doctors themselves that start patients on addictive drugs and then make issues about a person being a drug addict. But to tell a nurse that she is one, because of having that knowledge due to your work is a little over the top. I am sorry you had that happen to you.

I was told that I must have had a fight with my husband or it was all in my head, or what a great imagination you have. I became depressed because no one believed me, and so that gave them the excuse oh well your just depressed. It did not matter to them that the pain and other odd symptoms come long before the depression shows up.

But I am glad to hear with your new doctor you are doing much better and at least know what is wrong. I hope you will enjoy time spent on the forum and hopefully find answers to your many questions. See you around the forum. :)
 

Little Bev

Active member
Joined
Aug 4, 2013
Messages
62
Diagnosis
08/2013
Country
US
State
Florida
Does anyones scalp feel like it's burning and can't scratch it because of the pain? It seems the pain moves around. I was having most of the burning on my neck, shoulders and back, but now seems to have moved up to my scalp. Is that possible?
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
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Little Bev,
Anything is possible with fibro. I have had the burning pain, as well as, sharp ongoing pain in my head. And nothing including using cold cloths seems to help.

Just be sure that this burning pain is not being caused by an allergic reaction to medication. I once had a severe reaction and had terrible burning feelings on my face and chest, neck and back. You can look up Steven Johnson Syndrome, through a web search, and then compare the symptoms. If it is caused by meds the pain moves around but causes a burning of your muscus membranes through-out your body.

I am not saying this is your problem but if the pain gets worse see your family doctor. Otherwise lay down and put cool wet cloths on your painful burning pain spots. And try to relax. :)
 

Little Bev

Active member
Joined
Aug 4, 2013
Messages
62
Diagnosis
08/2013
Country
US
State
Florida
1sweed, I looked up steven johnson syndrome and I dont have any of those symptoms. Thanks for the advice. Im wondering if the gabapentin could be causing it along with my hair loss. Ive been on a low dose for several years. I have a feeling if I ask my dr, he will say no.we'll see.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
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I have been on gabapentin for over 25 years and do not have any hair loss, in fact I have very thick hair.

The head pain can be related to migraines, just coming in a different form. Glad to hear you checked out SJS, and do not have those symptoms.
I would say cold cloths and don't lay flat in bed, but use two pillows to support your head. Keep your bedroom dark and relax as best you can.
One time I had these pains very bad and was told it was from a viral infection.

Things doctor's say when they can not think of a reason for your pain. Hope you feel better soon. :)
 

cinderr

Senior member
Joined
Jul 31, 2013
Messages
213
Diagnosis
02/2008
Country
US
State
WI
It's true, the darn stuff, the pain, moves! One day I complain of hip and back pain, the next day it extends to my legs and arms. Somedays every part of me hurts but at least now, I am smart enough to rest between activities. Not that its a choice, you must sit down when you hurt to much to stand. You must go to bed when you hurt too much to sit. I'm sure tired of it.
Today,I thought a truck might t-bone me and I thought, "So what?" I'm not given to depression but sometimes....
 

cinderr

Senior member
Joined
Jul 31, 2013
Messages
213
Diagnosis
02/2008
Country
US
State
WI
I once had a cocky doctor say, "anything else?" Well darn it, if you have tons of symptoms, which do you leave out? Incidentally, I don't go to him anymore. Not that any of them have floated my boat!
 

KateUK

New member
Joined
Sep 3, 2013
Messages
5
Diagnosis
02/2010
Country
UK
State
Scotland
Hi - I used to get the burning feeling a lot in my ribs, made it impossible to sit, stand or lie...not that I can do any of these things for any length of time anyway, but the pain seemed to magnify with the burning! I also, quite often get the burning feeling in my face, which make it too tender to touch with anything, when it's my face though, the feeling is more like a "crawling" sensation which is painful to the touch.

I know the feeling of being stared at by doctors as if I'm making things up, I was sent to "talk" to a Psychiatrist, which I thought was extremely insulting but I figured I would need to play the game to the DR's rules, so to speak, so after "mental" issues being ruled out as the cause of all my pain, I was told that it was because of my weight and then the other favourite for a doctor who just can't be bothered looking into the problems...my smoking! I have now, finally, after years of searching, found a GP that actually believes in my pain and has helped a lot.
 

momwhite

New member
Joined
Sep 23, 2013
Messages
6
Diagnosis
00/0000
Country
US
State
IA
Wow, I can really relate to all of the above posts. It seems I have had many if not all of these symptoms and had all of the funny looks like, "are you serious-yesterday you said you hurt somewhere else..." It is so maddening! I feel good one day and think it was all a mistake and so I do something I used to do and bam, now I can't move without crying...I am really having a hard time accepting this and I just want my life back! I will be going to the Mayo Clinic in 2 weeks for any insight they can give me. Has anyone else been to the Fibro and Pain Clinic?
 
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