All negative tests...but have all the symptoms??

Hi everyone, I finally took a moment to join and figured this would be a great way to eleviate stress from always being "sick and never having a diagnosis of what I KNOW I have.
Since I was a child I have had pneumonia, constant kidney and bladder infections, anemia, dizziness, pain in my joints and muscles (was diagnosed with fibromyalgia and chronic fatigue in 2005)...and my feet are ALWAYS cold when my body is warm, to the point that I can't do anything to get them warm...and in the past two years I have been admitted to the hospital with reccurring kidney infections with everything possible in my urine (the ketones and protein just DON'T make sense?!) and the fact they they keep happening so closely together (within a month of each other) is a little strange, and the urologist can't figure out why?! and was also admitted to the hospital with bacterial meningitis when everyone around me only had a common cold but I got a common cold that erupted into meningitis.
I wake up each day (note: I didn't say "morning") and never feel refreshed, but I have 3 year old boy/girl twins and a 7 year old girl that force me to get up at some point no matter how tired I am...and my hands hurt so badly that I can hardly make a cup of coffee, and am so weak I can barely hold the coffee cup. My neck hurts (I am also diagnosed with cervical spondylosis of the spine in my neck) and I am in so much pain all over and it takes me about an hour or 2 to "get going" and after my tramadol kicks in, I am on tramadol and zoloft (because of the pain and fibromyalgia and I just feel "down in the sumps" with being this way...
This summer I went outside with my kids and could barely walk after I got home. I had a hard time functioning, and felt like a wilted flower, and was in bed for the next couple days...there wasn't one single day that we went to the beach or to the park in the sun where I was functioning the next day or by the end of that day.
My blood work always comces back normal, and they send me away and say, "good news, it's not lupus" but my body is getting worse and worse as the months progress...constipation/diarrhea, pain in my stomach along with ruptured hemorrhagic ovarian cysts EVERY MONTH for the last year!!, constant agonizing pain, some of which is consistent with fibro, but the joints don't explain that part of it, hair falling out in clumps in the shower or when I am stressed out, eye sight is SUPER sensitive to light, I have a very hard time driving at night with the other lane's car lights in my view, constant infections of all sorts, the ridiculous amount of kidney infections, an enlarged liver ALL the time which is unexplainable to dr.s, when I am extremely stressed out I have trouble falling asleep and then have insomnia for a few days but can sleep during the day...just too many things to mention and so many things that all show negative blood tests...so I am just tired of being sent away with negative tests, and never getting the definitive answer. I have seen a rheumatologist and a neurologist and they did one series of blood tests and got the answers that were negative and sent me away, (note: I felt good and was having a good day both times).
Has this happened to anyone before? Had all negative tests but knew you had it?!

I am a 30 year old single mother who feels as though I have lost touch with the outside world due to being so sick and in so much pain all the time...I hope this group with help me and hope you all survived reading this LONG post without falling asleep,  :)

I look forward to hearing back your insights and what you went through before being diagnosed, or to hear your responses even if you were not diagnosed yet. My heart goes out to all of you and Big ((((((HUGS))))) to all.

~Marie~

[iris986]

Have they suggested Undifferentiated Connective tissue disease?

[MarieJune]

no, I have never even heard of it...I'll have to look it up and see if it fits...thank you for the question, I will let you know.

[karajo]

I know some don't like for others to mention herbs and such, but Billberry is really great for night vision problems.  I had problems, got to where I wouldn't even drive at night.  And I was in my 30s then.  Hear that the WWII night fighter piolets would each billberry jam before they would go out on their night missions to help them.  It wouldn't hurt to give it a try.

I don't know if you are aware, but chronic fatigue is a very serious illness.  It's symtpoms can be very ferocious.

I would certainly think that after this many years you would have an elevated ANA if you had lupus.  

I'm praying for you and for God to give you wisdom.

[MarieJune]

Hi. Thank you for the reply...I will definitely try it out. I went to the hospital 3 nights ago and was extremely stressed out and I finally got a positive ANA. My rheumatoid factor and WBC were all out of wack, so finally after so many years I received the answer I knew all along...sometimes we just "know" but get sent away with no further testing...But I have my first appt with the rheumatologist who specializes in lupus and rheumatoid arthritis on Wednesday. I hope you are feeling good today, and I will definitely try the bilberry....you are absolutely right, it can never hurt to try, nothing to lose...Thanks so much for replying and talk to you soon. (((((((HUGS))))))