joint pain with positive ANA

[SamiCooper]

im 17 years old. first problems started when i was 10 or 11. my knees were always hurting but the doctors just told me it was growing pains and it would go away, it didnt but i was dealing with it. well i havent grown in a couple of years and my problems have only multiplied. it really all started about a year and a half agoicouldnt do anything with my wrist for about 3-4 weeks, then i got this really deep, barking cough,(still have it), my mom said it reminded her of a croup cough.the only thing the doctors could tell us was that i coughed every time i swallowed something its calmed down a bit but not much. if i cough too much i get really short of breath, and i cant stand any kind of smoke. the cold didnt used too bother me but now it amplifies the pain making it almost unbearable. i get headaches, my joints have started getting really stiff in the last 6+ months which also only makes the pain worse. i have pain in every joint except my jaw but i have NO inflammation or swelling. my joints have started popping every time i move; big loud pops. bright lights and loud noises bother me, i have ringing in my ears. i have problems remembering and concentrating. i get dizzy, and have some balance problems i feel weak sometimes, numbness and tingling in arms and legs sometimes, my feet are cold and will turn a purply color(tried warming my feet up when i can feel the cold and i guess theyve been cold so long that it hurt). im short of breath sometimes, and my breathing is always changing(slow, fast, labored, deep, short normal). i have a heart arrythmia, where my heart will just race im not sure of the last time it was below 80, its usually between 90 and 120 but its gone as high as 160 before(resting rate). my heart will also pound so hard it feels like its going to jump out of my chest somehow. within the last few weeks ive had chest pain it will hurt for a few minutes then go away sometimes it comes back right away but usually not. its a sharp constricting pain, ill get short of breath and hard to breathe deeply. ive also had pain in my ribs where it felt like i broke a few and it hurt to breathe at all(the last time was a few months ago, but im sure it will happen again). im also always tired, and my sleep times are irregular, as in i usually no matter what i do or how tired i am cant fall asleep before 2am and i wont wake up before 11am at least. not very often do i fall asleep before then.

i had to drop out of school about a year ago because i couldnt get around, and for the last 9+ months ive been in the living room on the couch because i cant get up to my bed(i have a bunk bed).  ive been to many doctors had countless tests done, and still have no answers. the only thing the blood tests showed is i have a homogenous ANA titer of 1:160, and am slightly anemic in that my red blood cells are bigger than they should be. they said i dont have lupus, and it cant be arthritis because of how long ive had it, that my joints arent deformed and that i dont have any inflammation or swelling. my mom and 2 brothers have fabry disease but thay tested me and say that i dont have it, we asked them if i could just have a different mutation and they said it was possible but not likely, they wont do the test. the rheumatologist i went toothinks it might be fibrmyalgia, but i dont think thats it and he cant prove that its it. they did an ekg, more blood work and xmore -rays about a month and a half ago and i still dont know the results. they know how to get a hold of us because my mom and brother are at that hospital every 2 weeks for enzyme replacement so i know its not that.

i just dont know what to do anymore, i dont know where to look, and it seems the doctors dont care to look. if they dont know what it is theyll throw out something plausible and tell me to take some pills and deal with it. ive been to physical therapy which only made it hurt more. i took aleve for about a year and a half before they stopped working by then i was taking 4-6 a day, and that was back when it was only my knees. since ive been on muscle relaxers which dont really help, and many other kinds of pills. the last one they gave me was neurontin, and lortab, they had me take three neurontin a day an up to 4 lortab with 1-2 tylenol half  an hour before depending on the pain, well it hurt so bad that i was taking at least 11 pills a day sometimes up to15 it worked for about a month and i took it a few weeks after but it had stopped working. i even stopped it for about a month and tried taking it again didnt work. they said the next step up was morphine and they werent willing to give me that. the pills dont even make me tired or sick, where a couple of tylenol will put my mom out for the night. im not taking any pills right now because nothing theyve given me works.

i want my life back, ive tried to work through the pain and some days i can but others its horrible pain. im a pretty positive person and ill downplay the pain and symtoms to those close to me but i really need help.

please help me,
chryssa

[Supplement_fan]

Hi Chryssa,
Sorry hearing what you suffer for a long time.  I agree w/ kjackson888, the Leaky Gut Syndrome and Systemic Candida Overgrowth would cause many symptoms like that and currently MDoctors do not have a clear diagnose documents to identify this disease.  Many many autism children who got this never get cured because their parents take them to MD doctors.  You might want to see NDoctors (Naturopathic Doctor) to have an official diagnose/examine...
Good luck.

[kjackson888]

Chryssa,
Look up Leaky Gut Syndrome and Systemic Candida Overgrowth.  I have the same symptoms as you and after 39 physicians and 17 speacialists and no diagnosis, other than Fibromyalgia, I have found relief with improvement from treating myself for these 2 diseases.  Candex, Caprylic Acid and Coconut Oil.  You most likely have an autoimmune disorder that is causing all your symptoms.  My symptoms started in 2003 and progressively got worse.  I also take MMS daily.  (Miracle Mineral Solution)  Do your research on these two diseases on Google.  You will be amazed at the connection to all your physical ailments.

[SummerDawn911]

My name is Summer and I'm 21 years old. I know how you feel... I dont say that lightly, because I used to think no one knew how I felt, but this sounds exactly like my situation. My problems started when I was 19. In and out of doctors offices was my live for about a year. I too had an elevated ANA. After countless monthes of dealing with needles, catscan's, and MRI's, I was ready to give up. But about 3 months ago my mother was watching a program on Lyme Disease. She suggested that I be tested because it mimics several other diseases. So, I told my doctor to run the test and sure enought that's what I had. I strongly recommend that you have the test done. My first test came back negative, but most states recommend a second test and if they dont ASK FOR ONE! Thats how they caught mine. Caution: False positives can accure and there are not very many Family doctors that know much about the disease. Not to mention its hard to catch in certain areas of the country, and first round antibiotics dont always work. I am seeking second round treatment at this time. Please have the test done, because if it is Lyme Disease it can be dangerous to your body long term. I wish you the very best of luck, I know its frustrating.

[karajo]

Do you think the test you are referring to is maybe the anti-SM, anti-RNP, anti-SSA, anti-SSB, SCL 70 antibody, JO1 antibody or centromere B antibody?  They have a normal range of 1-120.  
ENA also has a normal range of 120 positive and

[karajo]

PlateletGal: The article I referred to about the allergies was:
www.caringmedical.com/condition_details/cold_agglutinin_disease.htm

The symptoms of Cold Agglutinin Disease may include:
fatigue, anemia (caused by low levels of circulating red blood cells), jaundice, sweating and fingers and/or toes (can affect the ankles and wrists) turning uneven bluish or reddish.
This is different than Raynauds in that Raynauds is caused by vasospasm. A triphasic color change occurs from white to blue to red based.  (sometimes mine just turn white.  It may go through all these colors, I'm usually trying to get them warmed up and are not constantly looking at them)
CAD can accompany mononucleosis, HIV, Cytomegalovirus and the flu.
This is a complex disease and I personally don't know anyone who has/had it.

[karajo]

Chryssa,
I tested possitive for Rocky Mountain, but technically did not run a fever with it.  I normally run a very low temp, but I ran a 99.5 for months until I began to take an herb called Cats Claw.  My pcp also gave me antibiotic for a month.  He wasn't sure if the RMSF was not a false possitvie because of the lupus he suspected.  The Rhematologist said it was not a false positive.  

Maybe PlateletGal can comment on whether fever always accompanies CFD.

Chryssa, have they tested you for the dry eyes?  This goes along with Sjogren's syndrome

In case it might help, here are the 11 criteria for lupus (4 are needed for a dx):
1. malar rash (butterfly pattern)
2. discoid rash (raised patches)
3. photosensitivity (reacts to sun exposure, ex. joints hurt, skin rash i.e. FLARE)
4. oral/nose ulcers
5. arthritis (pain sometime w/ swelling)
6. inflammation of the lining of the lung or heart
7. renal disorder (protein or cast in urine)
8. neurologic disorder (seizures and or psychosis)
9. hematologic (low: RBC, WBC, lymphocytes or platelets)
10. positive ANA
11. positive anti DNA, anti-SM, antiphospholipid, or false positive syphilis test

Did the dr. test the 18 pressure points common in fibromyalgia?
Just know that if a dr. wants to try prednisone, fibromyalgia does not respond to prednisone therapy, but autoimmune diseases do.
www.myalgia.com/lupus.htm  "Do I have lupus or fibromyalgia"