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QuietLight

New member
Joined
Sep 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
04/2014
Country
USA
State
NY
I am new here and have been diagnosed with Fibromyalgia. Unfortunately, my family and I realized I have had it since childhood on and off, but now in my mid 40's it isn't going away. Nothing is helping it except not doing a thing...and as a woman, we all know that just doesn't cut it...not unless we want to do nothing. For years I had been told by doctors not to lift heavy items, climb stairs, vacuum etc. Little did anyone know that it was chronic, even though I felt it all the time, I got used to it. Then one day this past April, I got what we thought was the flu. We went to the ER to get a diagnosed...instead they said UTI. Treatment began there, then my arms began trembling all the time, my legs getting shocks through them, knees are what I call Junk. Therefore, while shopping or out and about for a long length of time, I have my best friend, my wheelchair to aid me.

I've gone through the first stage of meds, only to have them work briefly, and then not at all. On second round with Lyrica...the pain continues. Something deep inside me says there is something more going on, yet all tests come out clean. It is highly frustrating and I am ready to give up on doctors altogether. The run around is exhausting and almost a full time job. I no longer work. I couldn't last an hour if I tried. So I am researching as much as I can on Fibromyalgia. I am lucky to have a decent Dr. who is sympathetic and understanding of Fibro, but even so, when I leave the office, I know there is no care of what happens until they see me at the next visit. So learning to fight this with my husband and family has become priority.

My husband has a ministry, and he is a great support system, but he is exhausted from having to do most of the housework or constantly drive me around pulling out the wheelchair, putting it back, out again, put it back etc. He is so good to me, so I am very lucky and grateful.

My concern is that I may have something else that no one can find. I feel it in my core, yet test results are always clean. I wonder if Lyme disease is not part of this, yet the 2 blood tests I took are clean as well.

To go from being a very active individual to almost wheelchair bound is quite bothersome. So, I decided to finally join a forum. I have read through so many without joining. I believe it is time to get support and give it as well just to keep the spirits up.

So, here I am, a Wife, a Mother, a friend who struggles with chronic pain in my neck and knees daily...with spurts of attacks all over my body at random times. Who forgets things and shakes a lot. Who wears coats in the summer time while grocery shopping to escape the cold...never works and who dies of heat in the summer. This is my life. Yet I don't cry as much as I could because I know I am not alone and that there are many out there who suffer even greater than I do. So I try to stay positive and laugh a lot. Laughter truly is the best medicine! Hello to all here and I can't wait to get involved.
 

wulfman

Distinguished member
Joined
Jul 27, 2014
Messages
105
Reason
Relative
Diagnosis
00/0000
Country
IN
State
New York
Hello, welcome to the forum. Being positive is key. The mind controls the body. Never lose hope or feel you are defeated.
 

Tharper

Active member
Joined
Aug 13, 2014
Messages
90
Reason
DX FIBRO
Diagnosis
07/2014
Country
USA
State
FL
Welcome, I hope you find the answers you need and I know you will find support here!
 

niiro17

Active member
Joined
Aug 20, 2014
Messages
86
Reason
Diagnosis
00/0000
Country
PH
State
NCR
Hello Quietlight! Welcome to the forum. I hope you enjoy your stay here. Have a nice day.
 

QuietLight

New member
Joined
Sep 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
04/2014
Country
USA
State
NY
Thank you to all who replied! As I learn more about Fibro and all its fun qualities, I am determined to stay positive. And if anyone needs encouragement, feel free to write to me! Have had chronic migraines since early childhood and have put the puzzle together that I've had something going on most of my life. (Now trying to determine if MS is not a factor as have aunts on both sides of my family with MS, and many women on both sides that have fibro as well)

So, being used to pain, sadly, is how I've made it through most of my life thus far. But with age, comes ailments as it is...so either keep grinning and baring it or hide and cry. I used to cry and get depressed on and off in my youth....now I just want to find out exactly what is going on with this crazy body and nip it as fast as I can...IF that is possible! ;)
 

Mead

New member
Joined
Nov 18, 2013
Messages
6
Diagnosis
02/2012
Country
Can
State
Alberta (AB)
Hi wow do I hear you. I am new too and although a very positive person , sometimes it is just so difficult to deal with. Really nice to meet you.
 

QuietLight

New member
Joined
Sep 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
04/2014
Country
USA
State
NY
Yes, it is difficult to deal with. I've had 8 days of a full fledged migraine mixed with insane pains. Lived in bed most of the week and yesterday went out briefly to check out a new outdoors store...in the chair and still felt like the world was spinning and I couldn't handle it. Baaad week. But, within it, I kept/keep my humor up. My faith is enormous and I don't blame my Creator...I find this rather interesting to feel so much happening in my body.
Tomorrow is my neurology appt. I'm going in with fire to demand every test for MS. We shall see.

Mead, hang in there too. Things can make the body feel horribly, but only if we allow it, will the mind be effected. So I always encourage anyone in any bad situation, look outside, look at the sunshine and realize the beauty that surrounds us. Life is still good if we let it be. :-D

Nice to meet you too!
 

PurpleEyes

New member
Joined
Sep 26, 2014
Messages
4
Reason
DX FIBRO
Diagnosis
06/2010
Country
US
State
IL
Yes, hang in there. I get frustrated too at the things I cant do...but I went to being bed bound to now almost normal. Well, you know, functioning and doing things I would never have tried years ago. We all have rough days--my cat decided to bathe with me uninvited today with my pulled muscle. (fun)
I have been out of commission the past four days and I am so mad!
I hate laying in bed!
 

QuietLight

New member
Joined
Sep 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
04/2014
Country
USA
State
NY
Yes, hang in there. I get frustrated too at the things I cant do...but I went to being bed bound to now almost normal. Well, you know, functioning and doing things I would never have tried years ago. We all have rough days--my cat decided to bathe with me uninvited today with my pulled muscle. (fun)
I have been out of commission the past four days and I am so mad!
I hate laying in bed!


I hear you! Still have a headache and tired of being tired! Had my nwurology appt today. I have an MRI scheduled for Wednesday. Sadly, I can't wait to hear the results....good or bad.

I hope you feel better Purple Eyes! Have you tried a sea salt bath? I soak almost daily and it does help some...at least while in the tub the pain seems to subside. After, however soon after, the pains do return in my case.:?

Gentle hugs to you!
 
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