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shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 4/1/2011 11:21 AM (GMT -6)   
I usually kinda just read all the posts and see where I relate,Dont quite know where Im supposed to be as Ive been told I have fibro,cfs,hashimotos hypothyroid,restless leg syndrome,scholederma,and My tests for lupus always come back positive.Not that I want it,but I would like to know what Im dealing with.3 years ago,I thought I was having a stroke,almost same symptoms....mri showed few gray spots,they told me I have cfs and fibro.Im on cpap,endocrinologist says lupus,pain doc says lupus,general doc says fibro,and rhumy says fibro.Im very swollen..first rhumy gave me shots of methatrexate for all my swollen parts.next rhumy says I just feel swollen.So sick of all this crap.Now rhumy wants to send me to see a guy to give me botox to loosen me up.But she says I dont have scholederma.Shes got me on plaquenil,elavil,tramacet,diazapan for spasm,eltroxin.I told her my eyes hurt so bad and Ive got blisters in my scalp now 3 years old,that feel like cigarette burns.I have bad headaches and my chest hurts and all they say is it sounds clear to me.My sister has lupus real bad.I know somewhat about it,but these guys are so *****footin around,I feel like comin down to the states and seein who I wanna see.Anybuddees take on this mess?I cant take the sun either.so Im in limboland-

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/1/2011 12:07 PM (GMT -6)   
Sounds like no one wants to step forward on a diagnosis. You may have to come to the USA to get a solid Dx.

I'm in limboland, too. I just found out I have a speckled patterned positive ANA with titers of 320. I see the rhumy at the end of the month for further genetic testing to find out which one of possible six I have. :P

Don't you hate limboland? There's no map or GPS to help you find a way out. :(
Joy

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 4/1/2011 1:03 PM (GMT -6)   
ya,I mean these docs arent even communicating!Rhumy says:Ill send you to a pain management doc,maybe get you oon lyrica er cymbalta"I said tried lyrica f0r 18 months..was a zombie and gained 50 pounds...and hey Im not kidding...a fat zombie...yuck!I hold it well,,,but I used to train and Im just a hurtin unit now.oh,then I said I tried cymbalta nad I shook all nite...in fact I tried it twice.She said "oh so youve had all the good stuff".At the time I was stiff suffering from spasm...even now...why couldnt they give me an injrction then?they did for me being swollen....I hate this.ya know I keep thinkin it will get better..Ill lose the weight and my face wont look so tired and swollen ,but Im beginning to lose hope.When I say anything to anyone,they kinda ignore me.And all my friends are gone,dont work out and drink and shop like I used to.Its very hard .I wonder if all the people who are on lyrica or neurotonin gained alot of weight....and do they usually put people who have fibro on plaquenil...are you really weak Tater?what meds are you on?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/1/2011 6:18 PM (GMT -6)   
I'm so new to this I'm not on anything but tylenol and heating pads.
I feel like I've sprained my elbows, wrists, hands, knees, ankles, and feet. :(
Everytime I'm out in the sun my face turns a brighter shade of red. I look like I've been bawling or got extremely hot.
I get so tired. My arms feel like they weight a ton at times (It kind of comes and goes).

I've been on spring break this week and on Monday I go back to a classroom of six and seven year olds. Thank goodness I only have seven weeks left in this year. I'm bushed! :((
Joy

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 4/1/2011 6:35 PM (GMT -6)   
I know exactly what youre talking about Joy.I ache from head to toe,and the weakness is overwhelming,feel like I could faint.And ya know I get this feeling like almost out-of-body thing.Im a Christian so its not like weird ya know.Just feel like a zombie.And the people that suffer from autoimmune issues is staggering!like we're being poisoned er something.I go get this blister-looking thing off my face as its been there 2 months now....who knows what it will be.Maybe lupus...maybe cancer...er maybe just growin a big tater on my temple!heeheh

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/2/2011 9:02 AM (GMT -6)   
tongue   tongue tongue tongue
 
I'm nothing but a big couchtater!
 
Some days you've got to laugh or you'll wind up crying in the corner. yeah cry
Joy
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