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 unbearable 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,
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.
i would also like to know if theirs anyway to control my pain, as i said the pills they tried me on didnt work for long and physical therapy made it worse but is their any other way that might help. thanks.
I am so sorry you are suffering with so many medical problems. And I am sorry that I have no concrete answers for you.
First and foremost is that no 17 year old should consistently or even often have a heart rate above 100. I agree that your elevated B/P and HR can be caused from your pain. Additionally stress and the worry of "what is worn with me" can also elevate those readings. Stress can and does magnify our pain and symptoms.
Physical Therapy will make you hurt more than usual. Movement and strength building is always more painful until your muscles and your overall strength is improved.
If you physicians are unable to find the reasons for your symptoms than you need to see different physicians. Sometimes a new physician can take a fresh look at the symptoms and come up with an answer. Sometimes it takes looking outside the box. At any rate I strongly encourage you to see another group of physicians.
There are so many medical conditions you could be suffering from that it would only be wild guesses if I suggested a few. I wish you the very best. Please keep us posted and let us know how you are doing. I will look forward to your next post. Peace, Tuck
Your such a dear, your also too young to be experiencing these frighful symptoms. I totally agree with Tuckamore and you need a fresh set of eyes. Find a good Internal Doctor. They are more qualified than a family practitioner or just a plain old family Doctor. Keep at the medical community until they find a diagnosis that makes sense to you. Have you have studies of the Brain? or an MRI with contrast of the Brain? I think a test like that is in order if they haven't done so already. Your heart rate is not good for your age. please keep on top of that.
Because I am not a Doctor, I don't have any real medical advise to offer you but what I and the rest of us have is a shoulder to lean on. Don't ever be afraid to ask questions or just chat about how your feeling, it can be scarry, especially at your age. Hang in there honey, I'm sure that some Doctor will eventually get to the bottom of things. Take care and good luck in the future,
hello, i actually dont have a very stressful life. i mean when my HR does that it scares me and when the pain is really bad i believe im more stressed but i pretty much live day to day and dont do much of anything most days because sometimes i just cant or if im having a good day i dont want to ruin it by trying to overdo it. i mean i had to drop out of school so i dont have that stress thing, and a lot of this i leave on my mom.(as much as i hate to do it) i think that she has enough with her and my brothers diagnosis of fabry disease, but i think she will know where to go to next better than me.
as for doctors in the past 2 years ive probably been to 8+ different ones. they dont know what it is so they throw something out and hope it fits, theyre not willing to research it and i dont know where to look. im in the process of looking for a few new ones and have gotten a few recommendations of where to look and who to go to so its pretty much a wait and see thing with them with a lot of hope thrown in.
i dont think ive ever been to an internal doctor as i never thought about going there but i will give it a try. ive wanted an mri and stuff like that done and i was going to have it done until they said i couldnt have fabry and said i didnt need it. it seems like im fightinxg them at every turn and im getting tired of it. i
i do believe theyll find whats wrong with me one day, but its more of a how long and when. im just getting worse and am starting to get fed up with theyre answers. i just hope it doesnt take the 42years it took them to diagnose my mom, im not sure i would last that long as im still finding new symptoms
anyway thanks so much for your support, and help, im so glad i found this website as i feel as if someone outside my family and friends cares. i will keep everyone posted as i find out more.
A CT scan with contrast is a very effective tool. Often it is the first general scan that is used for diagnostic purposes. Sometimes it is the only one.
I am sure your Mom knows more about your symptoms than any of us could and she will point you in the right direction. You may not "feel" the stress but your body is put under stress when you have elevated B/P values and heart rates. Everyone suffers a degree of stress when they have pain and undiagnosed symptoms.
I see an Internal Medicine Physician. I would not see any other type of physician for my PCP with the multiple medical issues that I have. They are the best in my opinion.
Again good luck to you and take care. We will look forward to your updates. Peace, Tuck
im going to ask about having one done the next time i go to the doc. thats true about the stress, though i dont really notice it, and probably more so because i tend to keep things bottled up unless im by my self (bad habit). my moms setting me up an appt. with a cardiologist though and were all going to see an internist, not sure when but im hoping they might find something that might help find out whats going on.
anyway thanks and i will update when i find out more, hope you are well.
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