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Layla

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Joined
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4
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Undiagnosed
Diagnosis
00/0000
Country
AU
State
queensland
:grin:
Hi I am 45 yrs old. For at least 10 yrs I have had recurrent throat / sinus infections. The past 5+ years I have been tired but now this exhaustion is ridiculous. I have low iron and have had B12 injections for unexplained anaemia. I have spells when I feel ok but not 'full of energy' but I have times when I have to drag myself to work and all I think about is getting back into bed. My muscles aches, I feel dizzy (as if the inside of my head is shaking), I get headaches and I feel weak. I am stiff and achy in the mornings and couldn't tell you the last time I woke up feeling as if I'd had enough sleep. In particular my knees ache and my thigh muscles tire easily. I have periods of strange confusion for example I will completely forget my card pin no. or will find myself trying keys in a door with no lock. All of the above seems to simmer and flare if that makes sense. When it flares the exhaustion and muscle pain/ache/weakness is worse. I have no energy at all and feel helpless and wonder what on earth is wrong with me.
I have had bloods for lupus but they came back fine with borderline on a few tests but overall nothing to worry about.
My GP is sending to a specialist to rule out lupus but she said it could be fibro.
My main worry is explaining this to work colleagues as I am a therapist and the general consensus is that fibro 'is as a result of trauma' or 'it's all in your head'. I am aware of these stigmas and wonder how people have managed to address this. I may not get a diagnosis but need an explanation for tests and appointments etc..
Any advice greatly appreciated :-D
ps. sorry it's long winded
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome. Hmmm well for me it's simple I have fibro deal with it. But when I was working I printed out a whole host of info for my boss to read.
I had my dr write a little note saying I had this.
Yes it is in your head but not in that way, we have nerves that work overtime and send us signals of pain for no reason. We also don't fire off some signals at all. That's the current thinking , it's very very real .and if someone doesn't understand tell them to explain a headache and prove that have one .U can't . Once u have been told u do have it then there are mess u can try to help.
But it's a bumpy road and takes along time to learn to cope with.
 

Layla

New member
Joined
Jul 25, 2015
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
State
queensland
Thanks for your reply Forgetmenot. I love the headache comment :)
I am at a stage where I need a diagnosis because I am so sick of feeling lethargic and exhausted, not to mention the other symptoms. I see the specialist in 2 weeks so fingers crossed for some positive steps forward.
Layla
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Hello Layla,
I was diagnosed with fibromyalgia in May. So far I have only told a few trusted coworkers. The reactions I have gotten have been supportive.

As far as everyone else knows I have "joint problems". I've been surprised how well people at work have respected my privacy. When I need to ask for help it's enough to say my hands aren't working too well today.

I have only had one person ask me outright. I told him, but I asked him to keep it to himself. I have not found out yet if that was good decision. It seemed better than appearing to be secretive.

It's tricky to figure out what to tell people. Once the information goes out you can't undo it.

I hope the specialist can help you!

PS
I also went through about 10 years of recurrent sinus infections. Eventually someone thought to test my immunoglobulin - it turns out I have the mildest of the genetic immune deficiencies (selective IgA deficiency). Not life threatening but it sure made me miserable. When I take antibiotics I have to take them 50% longer or the illness just comes right back. Now when I feel a sinus infection coming on I rinse my nose with saline. For throat infections I gargle with saline. Your sinus infections may have a totally different cause, but I wanted to share my experience in case it is useful.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
hello Layla,
start by reading my posts in gereral discussions called "what is fbromyalgia" and the other one is " starting a daily log book and why it helps".

accepting that you have fibro is important,. learning all you can about it and how we with it deal with everyday life.

Quality of life is all we have. get whats best for you and work with a doctor that believes in fibro.

Support is what we all need to get through each day. keep coming here and learning. tell us what you have learned so we can learn to.
 

Layla

New member
Joined
Jul 25, 2015
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
State
queensland
Thanks cmetryme.
I am feeling a bit down today. On my 2 lot of antibiotics in 2 weeks and sooo tired. I will definitely check out your posts.

Layla
 
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