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

[karajo]

Hi Chryssa,

I printed your first letter out so as not to give you wrong advice.  Your ANA is low, but so was mine at first.  I know now that lupus can be a progressive disease.  Meaning symptoms get worse as the disease progresses.  My first ANA was 160, then 640, then negative.  The lab people were rejoicing.  I might have but I was still feeling pretty bad.  Then I read someone say to spend time in the sun before your lab is done.  That's when the ANA went up to 2,560.  I nearly fell out.  I didn't really have the full blown butterfly rash until just recently.  I was very sick for over a year before a joint begin to swell.  It was so mild I'm not sure I would've noticed it, but it had turned a little red.  Normally the joints don't swell as bad as they do in Rheumatoid Arthritis.  

Reveiwing your case and looking at CFID and lymes symptoms.  You do have symptoms that could match Fibromyalgia, CFID, RMSF and or lymes.  

Lymes:
fever, headache, chills, myalgia (muscle pain), fatigue, nausea, vomiting, rash, cough, lymphadenopathy (pertaining to the lymph system?), arthralgia (neralgic pain in a joint), stiff neck, erythema migrans (?), leukopenia (low WBC), thrombocytopenia (low platelet ?),elevated AST, elevated ALT & anemia

Rocky Mountain Spotted Fever is another possibliity:
all of the above except no stiff neck, noerthema migrans, and no leukopenia.
(I ended up testing possitive to RMSF)  I was a very sick puppy last year.  Fibro, lupus and RMSF

CFID:
fatigue, headache, short-term memory loss, muscle pain, difficulty condentrating, joint pain, depression, abdominal pain, lympoh node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scrathiness in eyes, blurring of vision, double vision, sensitivity to bright lights, munbness or tingling in extremities, fainting spells, light headedness, dissiness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitaions, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.

Fibromyalgia:
muscle pain, morning stiffness, insomnia, musculoskeletal pain, joint pain w/o swelling, fatigue, tingling, pricking or numbness, skin tenderness, light headedness (dizziness), fluid retention, stress or anxiety, poor memory, vocabulary problems, tender points, irritable bowel, chronic headaches, jaw pain, painful menstration, restless leg syndrome
Reported to follow a disturbance in REM sleep.

Print this out and just highlight all of your symptoms and see which one has the majority of your symptoms.  You could even take this list to the dr. and ask him if this is an accurate list.  Most Drs. do want to help.  Some cases are just really tough.

We all care about you and want to see you get well or at least get some help.
Praying for you, Kara

[PlateletGal]

Best of luck to you... please keep us posted. You might also want to ask about that rare disease that can give you Raynard's symptoms.

Hugs,

PlateletGal

[SamiCooper]

raynauds does sound promising, another thing i noticed with it is that when my feet are that purply color if i push on my toes it will turn white for like 30 seconds, odd. i have not been tested for lupus as they threw it out when i had no inflammation or a higher ANA. i do not have a B12 or folic deficiency. and i have been on steroid meds, though i dont remember what type, and did not notice any change.

i am working on getting a new doc. does anybody know of a good internist around san antonio, texas?

raynauds sounds more like what it is, though i do thank you for the websites you always give me as they help.

it means so much too me that yall are willing to help me as i was totally lost as where to go before and now i have so much info that i can give the docs and tell them what i want done or what i belive it is. i dont think id be getting as far without it. thanks

[PlateletGal]

I agree with oncnurse. I actually thought of Raynards, but there is another disease and I couldn't think of the name at the time and I was waiting until it hit me. My brain-fogged memory finally remembered it.  It is called, "Cold Agglutinin Disease" and it is very rare. Why I thought of this illness was because of your Raynard's symptoms, but also your blood cells being abnormal. People with this autoimmune condition have slowing of  blood flow with occlusion of superficial blood vessels by agglutinated RBCs and that can cause Raynard's symptoms, chronic fatigue, weight loss, respiratory infections (due to  M pneumoniae infection) and other symptoms.


http://emedicine.medscape.com/article/135327-overview
http://www.caringmedical.com/conditions/Cold_Agglutinin_Disease.htm


I'm glad that you are still posting. We all are trying to help and are concerned about you. All of us here, I believe, have our own health issues and so you have a wealth of personal experts at your disposal.  ;  ^ )

[OldFatChick]

Another thing they sometimes don't tell you about Lupus is that the symptoms don't always all show up at once.  My ANA was 1:364 when I was first tested and now it is 1:1260. After three years I am just now developing the swollen joints and muscles and the bi-lateral joint pain in wrists, hands, elbows, ankles and knees. I had the hip pain off and on for a while.  I have a diagnosis of Undifferentiated Connective Tissue Disease right now which, from what I understand, is a kind of catch-all diagnosis until you get enough symptoms to definitively diagnose with a specific disease.  If they don't want to run the tests you need, get another doctor.

[onconurse]

Hi, first thing I noticed was about your cold extremities and purplish discoloration. That's a symptom of Raynaud's.

There is more than one test for Lupus, although they might not have been run since your ANA wasn't interpreted as being high. I'm in grad school to be a NP and we were just taught that "if the ANA is consistently low.. then it can't be lupus" I intuitively disagree, simply because of the number of people who wait years to receive the lupus diagnosis and had symptoms without a high ANA.

The anemia is macrocytic. What would be important to know is if it is megaloblastic. Megaloblasts can be seen under microscope, but the MD would need to order a peripheral blood smear and could possibly refer to a hematologist. Your B12 and folate levels should be checked, or you could start by supplementing yourself because if the symptoms improve, that's almost diagnostic.

Were you ever put on any steroid meds?