View Full Version : mine sounds like a common story, but i'm really worried

03-25-2008, 03:45 PM
i'll try to make this brief:
I have been watching this site for the past month and it helped me get up to courage to have an appointment with a rheum.
when i was 15 (now 22) I complained of awful knee pain, my reg doc ran an ANA which came back positive, sent me to juvenile rhem specialist at a renown children's hospital. I had no other symptoms only bad pain. the chief of the hospital personally told me to go home and that nothing is wrong. they gave me a diagnosis of "benign joint disorder" to shut me up. other specialists like neurologists told me there is nothing wrong, the undertone was that it's all in my head.
as of 2 years ago the joint pain spread to wrists and elbows, i'm exhausted, cant get out of bed, everything feels heavy, i cant button shirts or type for long time, too tired to concentrate. in December i started having trouble breathing went to ER which said chest/lungs sounds perfect, again nothing wrong. in February i got a sore in my mouth and google led me find to lupus info, it started my research and led me to this site. i wanted to ignore it, i didnt want to go through the "nothing is wrong" fiasco again even though now i have more symptoms. yesterday i went to my doc bc i REALLY could not take a full breath of air to save my life- and bless his heart he prescribed me xanax of all things... see i have my rheum appointment in a few days and this new "in your head, anxiety" explanation for phantom symptoms makes me so... well i dont want to have lupus but i want to have something to call this thing which made me quit my job and jeopardize my 4.9 gpa because i can't get up to go to class.
by doc ran an ana months ago when i came to him thinking maybe its fibromalaygia it was 1:320, after my doc appointment yesterday i asked his office for files from when i went to juvenile rhem and that was my ana then too (1:320)! so it's not like my bloodwork makes me look sicker now- those files also said "borderline positive" for anti-smith25 & anti-RNP but "does not fill criteria for sle" so no diagnosis. i know i have more symptoms now, like morning stiffness that's crippling, sores in mouth and throat, exhaustion/fatigue, difficulty concentrating, swelling.
i just want someone here to tell me this run around is common and that even if the doc says the retched "everything looks normal" there's still a chance i will get some sort of diagnosis. my husband is wonderful but he doesn't understand why not being diagnosed is so scary to me. i just need something to explain to myself why i feel this way, and to others why ive had to sort of downsize my life and activities for the past months.

*this was soo not brief, but i really hope someone replies*
EDIT: i reread this post after to my surprise and reassurance that two wonderful members replied to me! so i fixed all the typos bc i posted this so fast (it's the third time i've written a post and never had guts to submit) lol
thank you~

03-25-2008, 04:12 PM
Hi roslyn

Welcome :) sometimes ignorace is bliss. Not knowing and not suspecting. But it is impacting your life...and I'm glad you got the courage up to follow up on it.

There are alot of treatments available. I like to think they improve the quality of life over all. I'm stuggling at the moment to find out what's going on with me. I have a rhuemy who doesn't accept lupus. She's not runny blood works on me...she's not answering my questions. She completely blind sided me.

My mother had lupus and went undiagnosed and untreated. My sister has lupus and is remission. I've had some symptoms since I was a small child but nothing waving a flag. Untill over a year ago. Now it's just finding someone who know's what they are doing and is willing to run the tests.

I hope your doctors are supportive. Know that lupus has many ways of manifesting it's self. You can drive yourself crazy trying to figure out all the information...so take a deep breath and know that this site is very supportive and friendly. Ask what ever questions you may have.

I'm sure the others will be along to welcome you :)

sick n tired
03-25-2008, 04:49 PM
Hey Roslyn,

Boy is it common...for at least 11 years I have been told that it was all in my head. Not in so many words....but you know what they mean...

I started to believe that it was and I was just imagining everything...As my rheumy would say...where there is smoke there is often fire...your ana is not normal and was not normal when you were experiencing all that pain. So something is wrong. I can't diagnose you but it sure seems like many of the symptoms.

It is hard to get a diagnosis, however. Sometimes it takes many years. The blood tests results can fluctuate with a lupie and that can be confusing.

Welcome to this family.


03-26-2008, 10:09 PM
Hi Roslyn;
Yes, unfortunately, it is quite common for us to get the "run-around" from doctors who want to tell us that our symptoms are all in our heads. Too many of us have had to have this fight with our doctors to insist that they take our symptoms seriously, that they treat our symptoms and that they give us some sort of diagnosis so that we can assure ourselves that we are not losing our minds!
As Sick-n-tired stated, it is very difficult to get a Lupus diagnosis and the process can sometimes take up to a year. Lupus is a disease whose symptoms mimic other diseases. Therefore, part of the diagnostic process is a process of elimination. Doctors will run various tests to eliminate other possibilities. Also, Lupus can develop slowly; symptoms come and go and new ones appear or old ones disappear. Blood work that is positive today can be negative next month and vice versa.
You are smart to keep a copy of your medical records so that you can track your symptoms and your blood work. This will help you to have informed conversations with your doctor and will help you to make informed decisions about your treatment.
Everyone here understands the need to finally have a diagnosis. Just to be able to put a name to the things that are happening to you is a relief. People who do not suffer the numerous symptoms that Lupus wreaks upon us do not understand this need to have a diagnosis. You are not alone and we truly understand.
Please let us know how your appointment goes. Remember, arm yourself with information - take along a journal of your symptoms (how they feel, when they occur etc.) and insist that you be taken seriously.

Peace and Blessings

03-31-2008, 06:10 PM
You've already received excellent advice, so I will simply offer a welcome home. This is a safe place to ask questions, to vent and to learn. I hope you find the answers you are looking for.

I wish you peace and health.


03-31-2008, 09:58 PM
Hi Roslyn,

Welcome to our family forum. No, it's definately not all in your head. So many on this forum have heard this; and refused to give up like yourself. Also, a diagnosis is not just based on labs, but on aches and pains also and your symptoms.

Keep a daily record of all your symptoms and submit to your rhuemy with copies of all your labs. Take your running tally of aches and pains and ask that it be placed in your medical records.


05-21-2008, 07:34 PM

Hey you, wondering how are? The site was done and thought perhaps you got lost in the change. I am hoping you have your thread tagged for a reply email..

How did your appointment go? Gosh, that was almost 2 months ago...

Have you received a diagnose? If yea or nay are they treating your systems...or are you still on the merry-go-round?

I know it took you awhile to post, as you mentioned but come post again...no guts needed, you're among friends...

We're thinking about you..hoping to see you soon.


06-17-2008, 06:27 AM
:morning: You are among friends who do understand what you are going through. Been there, still there. This helped me get the courage to
speak out and not feel like i'm a freak. Our friends and family support us and try to understand but this sight has come through for me. Now have a new family online! How do feel now that you've spoke up out loud here?
Consider me as a new friend. Bless you- hang in there.

Love, Confused 55