joint pain

[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 ago. icouldnt 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.

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 but i really need help.

please help me,
chryssa
                                                    

[SamiCooper]

it might be what i have and they have suggested it, but theyve also suggested other things that fit like lupus and fabrys and until they can prove that i have it im going to keep searching because i just dont feel that its what i have. on another note does fibro take years to develop or is it just there because i used to only have knee pain(started when i was 10 or 11), and just just within the last 2 years it has kind of exploded into everything else. but anyway thanks and any info would be appreciated.

[Lady_Baglady]

That kind of sounds like fibromyalgia? It sounds very similar to the symptoms my aunt was having right before she was diagnosed with it.

[SamiCooper]

i have not had that test, though i dont think thats it i will look into it. no i dont take vitamins either but i have a kind of healthy diet. as for my heart today i was just walking and it felt like i had run a marathon my BP was138/88 and my pulse was 134 im not sure whats up but im pretty sure thats not normal, for me anyway because i used to run all the time.thanks for responding and i hope all goes well with you.

[Encephalomalcia]

Have you had a bone density test?  My hips hurt extremely bad and I had a bone density test which showed I had low bone density which is osteopenia.  Supposedly this does not hurt, but my hips hurt so bad I could not sleep.  Once I start calcium chewables the pain subsided.  I ache all over like you do also.  I have rigid bones and fibroids along my spine and everywhere else.  I have pain everyday some days worse than others and when it's damp and cold I hurt bad.  Aleve usually helps me and I only take it when the pain is extremely bad.  Do you take a multiple vitamin?  Sometimes a chiropractor can help if your bones are out of alignment.  When the ribs are out of alignment it hurts to breath in and out in the front and in your back.   I am wondering if you are getting any B vitamins as these vitamins are needed for your nerves.  As far as your heart, I have heard a lot of young people have heart symptoms and rapid heartbeat.  My daughter did and she had an echocardiogram and everythings was okay.  The cardiologist said that children and young people sometimes have heart symptoms which get better as they get older.