getting scared, please help me

[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 sometimes. 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 130 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 positive 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 worksanymore.

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

somthing i forgot to mention is i get really light headed when i stand up, its like all the blood is rushing to my head or something and my vision will usually go out of focus for a few seconds. it doesnt matter whether i was laying down or sitting before that (though its worse if i was laying down), and with that feeling i also tend to fall or i have to grab hold of something before i do. it only lasts a few seconds to a minute but its really annoying me.

another thing yesterday i was walking through the grocery store with my mom (i had probably been walking 15-20minutes) and i felt like i had run a marathon. i was short of breath, my heart was pounding, and i stopped at one of those blood pressure machines and it was 138/88 and my pulse was 134. i used to run all the time and it scares me when that happens because it makes me think i have something more serious going on. i was also in pain at the time but it only ever feels like that when im in pain so bad i just want to scream, but it was no where near it that time it was more like the normal pain im starting to get more used too. a few times that its happened i felt like i was going to faint. one time that it happened i guess it looked that i was going to because some lady came up and asked me if i was ok or if i needed help. and right now ive been laying on the couch for the past 2 hours or so but my hearts pounding and my pulse is 129.

im  scared because what if i do pass out the next time it happens and theres no one around. ive asked my mom to schedule a doctors appt. but im not sure when i can get in and the doctors so far have said my high blood pressure and pulse are related to the pain im in but i think its something more.

[SamiCooper]

ive taken more than i wouldve liked but i dont think it affected me badly. i will ask about that also.

thanks for responding

[Jerry_NJ]

Good to read you haven't taken a dangerous level of pain relief.  The same goes for the Aspirin-based as they are very hard on the stomach, and can cause ulcers, I believe.

At your young age I would not think there is any deterioration in your spinal area, but I think it is something that may be good to check.  Pinching of the many nerves that pass through is a problems for some people, usually people much older than you are.  These are things that will be discussed with knowledge in a forum focused on the subject.

I wish you relief from you pain,
  

[SamiCooper]

i never thought about posting there but i think i will. as for the pills i was taking between 4-8 of the 500mg tylenol a day but im not taking pills of any kind right now and havent for the last month or so because i havent found anything that works, and ive been on at least 15 different kinds of pain meds or things they thought might help in the past year or so.

anyway thanks for the help

[Jerry_NJ]

I am sorry to read you are having such difficult times.  Much of what you are going through are not related to any specific knowledge I have, and that may be the case fo most people on this community.  Perhaps you should do a search for "pain management" or similar to see if you can find a forum/community where there is more experience.

One value I can share:  don't take more Tylonal than what is stated on the bottle.  How many pills that is depends on the concentration of the specific pill.  But I believe the rule is no more than 4000 mg (4 grams) of its active ingredient in a 24 hour period  I think the pill I use is 500 mg, so the limit there would be 8 pills in 24 hours. Taking more than that can cause toxic levels of Acetaminophen, the active ingredient, to accumulate in your system.  I think Tylonal comes in lower doses, which may be the dose you were using when you took up to 15 pills in one 24 hour period.