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

[SamiCooper]

i actually love learning, what i hated was being forced to, or having to do things by a certain time. i also love reading which i do a lot of, and im always looking things up that i dont understand. i dont really have a sore throat ora burning sensation. i had a really sore throat the first 3 or so weeks i had it, but then that went away and my cough didnt. my coughing is the worst when i first wake up and get something to eat or drink, ill end up coughing for like 30 mins or so. its also really bad around strong smells (smoke, food, candles, hairspray, ect.). like, for instance, my mom used hairspray this morning and i coughed for like 10/15 mins straight before i just went outside (it was soo cold this morning).

im actually pretty lucky as i dont really get pimples, never really did, but i do have this rash on my upper arms, thighs, back and parts of my chest and stomach. theyre not painful but they do itch a lot. there little bumps, some are red and some you csnt see but can feel. at first they thought it was allergies so we changed the soaps and stuff and it went away for awhile but is now coming back. i also have eczema really bad in my hands and its been going on since i was a baby. it breaks out a lot and if i go too long without using lotion they will crack and bleed. it took me awhile to find a kind of soap that wouldnt make them worse but i finally did a few years ago.

i do have a question though, can you have lupus and the inflammation just doesnt show up until later? because thats the only reason i wasnt diagnosed with that.

the same for lyme because although they havent thought about it its another inflammation thing.

i wish you all well and thank you for the support, and information.

[SSJane]

I have Sjogren's Syndrome and can relate to some of the symptoms listed. The problem with all of these "syndromes" and "autoimmune diseases" is that we all share the same symptoms. I know my daughter has fibro and I think she is sicker than I am, although my ANA titer is over 5,000 and her ANA titer is 1:180. She has muscle weakness, cognitive problems, insomnia and widespread pain.

One consideration is getting tested for lyme disease. Unfortunately lymers also have many autoimmune symptoms.

I will keep you, Sami, in my thoughts and prayers. And as they said, "do your research!" There is so much information, including new information out there on autoimmune problems.

[PlateletGal]

Hi !  Do you think it is lupus ? I didn't mention lupus because the poster doesn't have any inflammation, rashes or swelling. But then on the other hand... sometimes it takes awhile before lab results are positive. (we both know that one!)  Like you, I can also relate to Sami's symptoms .. because her symptoms could certainly fall into the lyme, fibromyalgia and CFS category. 29.3% of fibromyalgia patients have a high ANA titer and it is usually a low titer.

The treatment I'm on is based off of Dr. Nicolson's (and others) research. This treatment is covering all of these Th1 inflammatory diseases.. autoimmune & syndromes. Some of this research was recently presented at the 2008 International Congress on Autoimmunity.. held in Portugal.

[karajo]

Actually, your ANA is high enough.  These drs. just are reluctant to give a lupus dx.  They are kinda giving you some time to make sure you have long term insurance and life insurance.  Not that you are going to kill over anytime soon, but it is imposible to get life insurance after a dx of lupus.  Last winter when I thought I was dyeing, I purchased some life insurance.  It actually was harder than I thought it was going to be, but I wanted my husband and children cared for if I didn't make it.  I'm so glad I went ahead and bought it.  

I knew I had read something about the swallow mechanism being affected with lupus.  I read it in a book called "The Lupus Book".  It says persistent sore throats are common in SLE along with esophageal problems.  There are two types of esophogeal problems.  Those related to muscle dysfunction and symptoms related to reflux, or heartburn.  Patients with certain rheumatic diseases such as inflammatory myositis, dermatomyositis or polymyositis have a high incidence of dysphagia (or difficulty swallowing).  These people seem to tolerate solid food quite well, but liquids may come up through the nose and are sometimes aspirated into the lungs.  

I know you didn't really want to do school today, but you are getting a crash course in anatomy...your body is the subject.  The coughing could be caused by acid reflux.  Do you ever have that burning sensation down in your throat?  Or do you have trouble swallowing?  Let you dr. know.  Even the small things that you think are insignificant.  I get what I call erruptions on my body,  but especially on my face.  Of course, you are at that age where you get plenty of things like that, but these are different.  They never form into a head like a pimple.  They just are really sore and go away pretty quickly.  That is if I don't mess with them.  I also get sores in my ears and in my mouth.  Some people get sores on their head.  Lupus can affect everypart of your body in every way.  I am cold all of the time (extremely cold), but occasionally I have a hot flash.  And yes, lupus is causing both.  Becuase it can affect the vascular system, constricting the vessels.  Just think of all the biology you are getting...compliments of lupus.  I know, pretty corny, but you have to look at this a little wierd or you'll sink with this stuff.  I know I'm rambling, but horrible headaches are also part of lupus.  They are different than other headaches.  They seem deep and wave like.  I can't describ them.  If you have them you'll know what I'm talking about.

Sweetie, we want to be here for you in every way.  If you don't understand anything, there are websites where you can look up medical terms.  That's how you will learn.  If you do have lupus, you will definitely need to learn and be attentive to your body's signals.  You might not have any major problems, but serious things can crop up very quickly and you are going to need to know what to do.  I personally haven't had any emergencies.  Hope I don't ever.  Read all you can about this.

[SamiCooper]

i kind of wish my ANA would be higher so they couldnt say it didnt mean anything as they dont consider mine high enough, and i guess its not comapared to yours but it is still there. i will look into this and see where it leads as im too tired to understand half of what im reading, darn cold kept me up all night.

im happy to hear that the treatment is working although i wish it was easier for you, but at least it is working. i wish you luck on the test, and thanks for the info.

[karajo]

Could you tell me what herxing is?  Forgive me if it's something everyone else knows but me.  He He.

Yes, I thought 640 was getting on up there, but I honestly was knocking my head against the wall with these doctors.  The last count was 2,560.  So no one could say it could be something else beside an autoimmune disorder.

I am interested in what all you have tried that didn't work so well and what you have tried that has worked.  If you don't mind....Thanks.