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leaf
01-30-2009, 08:05 PM
Hi all...Right now I am alone and scared. My doctor is so hurtful....because I am a complicated patient it is near impossible to find a new one.. I have done a lot of research and feel I have lupus...have anemia, so tired my body sleeps whether i want it to or not...pain rash, etc etc etc...
leaf

Tootles
01-30-2009, 09:20 PM
Hello Leaf,

I know how feel about being alone and frustrated with your doctor. You do not have to feel alone anymore, this site has helped me and I have only been here for a few days. After reading the posts, I know it is not in my head anymore.

I changed my rheumy a few months ago because I did not feel comfortable with him or the staff. My new one is so much better. I did realize that you have to micro-manage everything to make sure tests and things do not get missed.

You will be in my thoughts and prayers.

Be Strong,

Deb

sits_inthe_corner
01-31-2009, 03:21 AM
Gentle hugs to ya leaf and welcome

We all know how hard it is to convince a reluctant doctor to work with you to get to the source of what's wrong.

I'm still having that struggle myself. Be persistant. Keep going back till they run the tests even if it's just to shut you up.

Are you on any medications? What sort of symptoms are you dealing with?

Bama
01-31-2009, 11:31 AM
I completely understand how you feel. I just finally got an official diagnosis after 13 years of visiting doctors. Doctors can be very hurtful when they don't understand what is wrong with a patient. I broke down in tears when I was finally diagnosed. The doctor thought I was scared and upset at the diagnosis and I told him no, I'm relieved because I was treated like a hypochondriac for so many years. He apologized and said there are lots of people who make appointments and explain bizarre problems just to get attention and sometimes a few complicated patients get wrongly categorized. Keep researching your problems and stay on top of them, because your doctors might let things slide until they recognize you are not one of those patients abusing the system. Its' ok to see other doctors, I ended up seeing over 7 rheumatologists before I found one that could put all my pieces together. Research doctor's interests and find one that best fits your problems.

iseedeadmonkeys
01-31-2009, 01:39 PM
hello leaf :)

your not alone here

come tell us anything you want to, we are not here to judge

rant and rave as much as you like

hugs
ISDM
x

leaf
02-01-2009, 11:02 AM
Well I will tackle medication first...i react so much of the time and am allergic to aspirin and tylenol, tested for both....antiinflammatories make me throw up...

symptoms: dry mouth, double vision, pain (lots of it everywhere), anemia, pericarditis, inflammed chest wall and rib cage, red rash keeps appearing and disappearing across my face along with a low grade fever, on one of these episodes I lost hair but it finally grew back, took months though...i have a scaly rash thing at the bridge of my nose...i have a worse one on each side of my lips that has left welts, my fingers have white marks when it is cold, of and on swollen glands, ulcers in my mouth, swelling under the eyes on top of cheek bone along with pain...the things on my face get worse with sun...pain in my chest wall and rib cage...and what is really trying my patience is I am so exhausted feeling...swear if i find that truck lol...this is all i can think of for now...but i have had times few in between and seem to fight with the above where my face paralized and things go flying out of my hand...been diagnosed with fibromyalgia and rheumatoid arthritis but nurse with lupus feels i have been misdiagnosed or something eslse is going on....fibromyalgia group leader a nurse feels more is going on than fibro and that i don't fit...so ...i went to bed last night at 7:30 and never woke up till this morning for church and i still feel like ill....this episode started just before christmas
leaf

frekkuls
02-02-2009, 06:17 PM
Leaf, Welcome!
It's not all in our heads!! LOL
This group is the absolute best for providing you with knowledgable advocates!! I learned way more here to help myself feel better than I ever learned from my Rhuemy....and I actually have a really good one!!!
The people here are living Lupus lives and are always willing to help!
Frekkuls

sick n tired
02-02-2009, 07:56 PM
Hey leaf,

I had a doctor who insinuated it was all in my head. It was like I was making it up so I must be depressed so take this anti-depression med. That would have been fine and good if he could tell me what was wrong, he never did other tests. That was for 10 years...I refused to take the depression meds because he could not give a reasonable diagnosis.

No it is not all in your head

This forum has many who will be with you every step of the way.

Angel Oliver
02-03-2009, 07:40 AM
Oh i so understand what you feel. Keep going back and keep fighting them until they listen.Im doing that right now. Yes and ive had the 'its all in the head'' rant. Alls i can say is ''I am ill'' and will keep going back to doctors until they listen to me. You are NOT alone. I now imagine all the people here stood behind me with their banners saying '' we have lupus so listen to us and help us''. This gives me the confidence i need. If it was'nt for the people on here i would have left it.Instead i have written to my doctors and am waiting for a reply. I am sick and feel crap and IT'S NOT IN MY HEAD''. Ahhhh feel better now lol :)

You keep strong.I understand you!!

Love
Angel.xxxx

sick n tired
02-03-2009, 11:42 AM
Angel is right...it does make you feel better, at least inside, to be able to say it and know it is true and not in your head. That gets my blood boiling to hear someone insinuate or flat out say it.
I had a doctor say he liked to refer to my complaint as "Crazy woman's illness" "you think it hurts and it makes you crazy" ha, ha, ha... here take this anti depressants so you will feel better...he he he...only I wasn't laughing. I cried the whole way home.

If you are ill, you know it...they can't feel it. I have many anomalies with my blood work and temperature but I finally found someone who would listen and really take a look.
I know if you keep being your best advocate you will too...keep looking.