Aa
many problems, no answers
okay so i know ive posted this before but ive found some new symptoms and thought id repost it all.
im 17 and have lived in texas for the past 15years. im hardly ever sick, in fact the last time i was sick was probably when i was 13. im a little on the thin side but ive also lost 15lbs. in the last 7months. all my problems started when i was 10. i had really bad knee pain. all the docs i went to said that it was growing pain and it would go away, its been 7years now and my problems have only multiplied.
about 2years ago i developed this really bad cough. it was a deep, barking cough, my mom said it reminded her of a croupy cough. i had a reallly sore throat when i first got it for 2-3weeks, the sore throats gone but my cough is still here. i had some tests done, x-rays and a tube stuck down my nose, but all they could tell me was that i coughed everytime i swallowed something. (it was really fun going through airports, lol). im sensitive to smoke or other strong smells, it makes me cough a lot, and i also get really short of breath when i do . ive been on multiple different cough meds but nothing helped
all my problems really started about a year and a half ago--
- headaches
- dizziness
- problems remembering and concentrating
- some balance problems
- really light headed when i stand up(my vision will go black and ill fall over sometimes)
- ringing in my ears
- bright lights and loud noises bother me
- weakness
-numbness and tingling in arms and legs sometimes
- my hands and feet always feel cold
- my feet turn a purply color sometimes
- i believe i have high blood pressure
- heart races and pounds a lot(feels as if its going to jump out of my chest sometimes). my pulse also is normally between 90-140, though it does sometimes go lower and higher
- chest pain usually around my heart on my left side but occasionally on my right, and i can sometimes feel sharp pains in my back
- short of breath, sometimes hard to breathe
- stiff and extremely painful joints, except jaw
- NO inflammation or swelling in ANY joint
- problems sleeping
- always tired
- cold makes me hurt a lot worse, but the heat makes me irritable
- and in the last week ive started having bright red blood in my stool everytime i go, im not constipated though, and it seems like quite a bit
ive been to 10+ docs in the past 2years and have no answers yet, all they seem to do is throw out something plausible, give me some pills and tell me to deal with it, or at least thats what ends up happening. although i did have this one doc that suggested i see a psycologist as he thought i was depressed (though im not) and needed help. ive been on numerous different meds with no relief. aleve worked the longest for about 2years but by then i was taking 4-8+ a day by then(i was 14). the last thing i was on was neurontin and lortab with tylenol. i was taking up to 15 or more pills a day and all that did was give me a slight headache. they said the next step up was morphine but that they werent willing to try that. im not taking any meds right now as nothing seems to work for me.
ive also had many tests done, x-rays, blood work. all they showed was i had a positive, homogenous ANA titer of 1:160, and am anemic as in my red blood cells are slightly bigger than they should be. they also said that it cant be arthritis because my joints arent deformed and with as long as this has been going on they should be and that i dont have any inflammation or swelling.
theres a family history of high BP and diabetes. my mom and three brothers also have fabry disease. they said i dont have it but they only tested for one mutation so the next time i go to the doc their going to test my full DNA for it because some of my symptoms could be explained by it and it runs in the family. my great aunt also has a form of lupus though they dont think i have that either.
ive tried physical therapy and that only made it worse. ive also tried to ignore the pain but thats easier said than done. im now trying yoga because a few people have said it helped them and so far it hasnt helped but then ive only been doing it for a few weeks and im sure it will take longer. right now it only hurts, but then everything i do does. im also trying to push my self past my limits as im hoping that the normal pain i have will be easier to deal with.
ive tried everything i can think of and nothing seems to help me. i remember days where i just wanted to scream, and in the last week ive cried most everyday because its been so bad and theres no relief. ive bit my lip so hard that its bled, and ive left bruises from squeezing my arms or my legs so hard just trying to make some of the pain stop. the pain wakes me up, it stops me from going to sleep, and it isolates me in a way, because no one that i know knows what dealing with this never-ending, excruciating pain feels like.
i had to drop out of school because i couldnt take it any more. im now stuck at home all day because i cant go anywhere or do anything most days. i cant get in to the doc for a few more weeks atleast, and i know i need help. any info or help anyone can offer would be appreciated.
chryssa
im 17 and have lived in texas for the past 15years. im hardly ever sick, in fact the last time i was sick was probably when i was 13. im a little on the thin side but ive also lost 15lbs. in the last 7months. all my problems started when i was 10. i had really bad knee pain. all the docs i went to said that it was growing pain and it would go away, its been 7years now and my problems have only multiplied.
about 2years ago i developed this really bad cough. it was a deep, barking cough, my mom said it reminded her of a croupy cough. i had a reallly sore throat when i first got it for 2-3weeks, the sore throats gone but my cough is still here. i had some tests done, x-rays and a tube stuck down my nose, but all they could tell me was that i coughed everytime i swallowed something. (it was really fun going through airports, lol). im sensitive to smoke or other strong smells, it makes me cough a lot, and i also get really short of breath when i do . ive been on multiple different cough meds but nothing helped
all my problems really started about a year and a half ago--
- headaches
- dizziness
- problems remembering and concentrating
- some balance problems
- really light headed when i stand up(my vision will go black and ill fall over sometimes)
- ringing in my ears
- bright lights and loud noises bother me
- weakness
-numbness and tingling in arms and legs sometimes
- my hands and feet always feel cold
- my feet turn a purply color sometimes
- i believe i have high blood pressure
- heart races and pounds a lot(feels as if its going to jump out of my chest sometimes). my pulse also is normally between 90-140, though it does sometimes go lower and higher
- chest pain usually around my heart on my left side but occasionally on my right, and i can sometimes feel sharp pains in my back
- short of breath, sometimes hard to breathe
- stiff and extremely painful joints, except jaw
- NO inflammation or swelling in ANY joint
- problems sleeping
- always tired
- cold makes me hurt a lot worse, but the heat makes me irritable
- and in the last week ive started having bright red blood in my stool everytime i go, im not constipated though, and it seems like quite a bit
ive been to 10+ docs in the past 2years and have no answers yet, all they seem to do is throw out something plausible, give me some pills and tell me to deal with it, or at least thats what ends up happening. although i did have this one doc that suggested i see a psycologist as he thought i was depressed (though im not) and needed help. ive been on numerous different meds with no relief. aleve worked the longest for about 2years but by then i was taking 4-8+ a day by then(i was 14). the last thing i was on was neurontin and lortab with tylenol. i was taking up to 15 or more pills a day and all that did was give me a slight headache. they said the next step up was morphine but that they werent willing to try that. im not taking any meds right now as nothing seems to work for me.
ive also had many tests done, x-rays, blood work. all they showed was i had a positive, homogenous ANA titer of 1:160, and am anemic as in my red blood cells are slightly bigger than they should be. they also said that it cant be arthritis because my joints arent deformed and with as long as this has been going on they should be and that i dont have any inflammation or swelling.
theres a family history of high BP and diabetes. my mom and three brothers also have fabry disease. they said i dont have it but they only tested for one mutation so the next time i go to the doc their going to test my full DNA for it because some of my symptoms could be explained by it and it runs in the family. my great aunt also has a form of lupus though they dont think i have that either.
ive tried physical therapy and that only made it worse. ive also tried to ignore the pain but thats easier said than done. im now trying yoga because a few people have said it helped them and so far it hasnt helped but then ive only been doing it for a few weeks and im sure it will take longer. right now it only hurts, but then everything i do does. im also trying to push my self past my limits as im hoping that the normal pain i have will be easier to deal with.
ive tried everything i can think of and nothing seems to help me. i remember days where i just wanted to scream, and in the last week ive cried most everyday because its been so bad and theres no relief. ive bit my lip so hard that its bled, and ive left bruises from squeezing my arms or my legs so hard just trying to make some of the pain stop. the pain wakes me up, it stops me from going to sleep, and it isolates me in a way, because no one that i know knows what dealing with this never-ending, excruciating pain feels like.
i had to drop out of school because i couldnt take it any more. im now stuck at home all day because i cant go anywhere or do anything most days. i cant get in to the doc for a few more weeks atleast, and i know i need help. any info or help anyone can offer would be appreciated.
chryssa
Hi
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Do not go outside unless you are wearing charcoal mask and all is covered by snow..Look for pesticide damage on evergreens such as white pine,white cedar,spruce,boxwood.Pesticide damage can be identified by browning of needles and leaves on DOWNWIND SIDE.If you want to be sure look at picture Bhopal India and Seveto Italy pesticide damage on trees.DO NOT TOUCH DAMAGE PLANTS.
fibro may be what i have but the way the doc made it sound when he suggested it was like it was a catch all, he gave me no proof as to that being it just that nothing else fit. i believe having a name to put to this would help, i just want it to be the right name.
all i had when i took the prednisone was the cough and some of the joint pain, well thats all i remember anyway, could it be that whatever i have just wasnt bad enough yet for it to take effect or would it not have mattered?
i think pretty much anything can make it worse. the weather, the temp. the way i sit or lay, standing, walking, staying in the same position for to long, moving in general. they all seem to trigger something, though thankfully not all the time. i do have knee braces though that help me. they keep the heat in and make my joints less stiff and i think the pressure contributes some too. warm baths and heating pads also sometimes help.
everyday is different for me. some if i dont move ill hurt worse, and some if i do. i never know what another day will be i may not even hurt at all. i dont know when ill hurt as somedays it will be when ive always hurt before but this time i wont. i dont know why either its confusing to me.
all i had when i took the prednisone was the cough and some of the joint pain, well thats all i remember anyway, could it be that whatever i have just wasnt bad enough yet for it to take effect or would it not have mattered?
i think pretty much anything can make it worse. the weather, the temp. the way i sit or lay, standing, walking, staying in the same position for to long, moving in general. they all seem to trigger something, though thankfully not all the time. i do have knee braces though that help me. they keep the heat in and make my joints less stiff and i think the pressure contributes some too. warm baths and heating pads also sometimes help.
everyday is different for me. some if i dont move ill hurt worse, and some if i do. i never know what another day will be i may not even hurt at all. i dont know when ill hurt as somedays it will be when ive always hurt before but this time i wont. i dont know why either its confusing to me.
Well, ANA is just one clue in diagnosis. They may not be dismissing it, but rather the differential may not have panned out. One thing that is against it though is that if it's autoimmune, the Prednisone should have helped. Is there anything that does help? And is there anything that makes it worse (activities, times of day, etc)?
Also with that spectrum of symptoms I'd also be asking about fibromyalgia. It's probably a spectrum of things rather than just one, but I found having *something* to call some of my stuff a definate relief.
they shouldnt rule out the ANA without doing more tests though should they. i mean im no doctor or anything and dont know nearly as much as they do, but if the test doesnt come back normal shouldnt it be looked into further rather than saying its nothing?
yea ive been on prednisone 2 seperate times within a few months a little over a year ago, ive also been on a couple other kinds but i cant remember their names, they didnt help me at all, though not much seems to anymore.
im not sure if my feet dothat or not as im usually always wearing socks, i just notice that they are usually purple/blue when theyre cold, and theyll be a more normal color if they heat up.
yea ive been on prednisone 2 seperate times within a few months a little over a year ago, ive also been on a couple other kinds but i cant remember their names, they didnt help me at all, though not much seems to anymore.
im not sure if my feet dothat or not as im usually always wearing socks, i just notice that they are usually purple/blue when theyre cold, and theyll be a more normal color if they heat up.
Yes, Raynaud's is what I was thinking too. Raynaud's Phenomenon typically has a sequence of white, then blue, then red. It's often triggered by the cold.
From my understanding, the higher the second number in an ANA titer the more antibodies are present. Positive ANA is considered anything greater than 1:80 but a positive test isn't specific enough to diagnose connective tissue disease on its own; there are more titers that rule out/rule in specific conditions.
Have you ever been given steroids such as Prednisone?
From my understanding, the higher the second number in an ANA titer the more antibodies are present. Positive ANA is considered anything greater than 1:80 but a positive test isn't specific enough to diagnose connective tissue disease on its own; there are more titers that rule out/rule in specific conditions.
Have you ever been given steroids such as Prednisone?
the doc said that the ANA wasnt high enough to matter, though i dont buy that because if its not normal it has to mean something. ive been to at least 4 different rheumatologists since i was 12 and the only things they came up with were growing pains, which it cant be, and saying that they didnt know what i had and giving me more useless pills to mask the symptoms.
as to my feet, they will just turn that color. im not sure what causes it, i guess its the cold though because when my feet warm up theyll turn a more normal color . ive had some people suggest raynauds and something else that i cant remember the name of and im planning on asking the doc about them when i go next, though im not sure when that will be. im actually in the process of finding a new one.
chryssa
as to my feet, they will just turn that color. im not sure what causes it, i guess its the cold though because when my feet warm up theyll turn a more normal color . ive had some people suggest raynauds and something else that i cant remember the name of and im planning on asking the doc about them when i go next, though im not sure when that will be. im actually in the process of finding a new one.
chryssa
Hi Chryssa,
What did your doctor think of the ANA titer? This is associated with autoimmune diseases, some of which can cause quite a spectrum of symptoms. Is there a Rheumatologist involved?
And what do you mean by your feet turn purple? Is it like a rash? Do they change colors or turn multiple colors?
What did your doctor think of the ANA titer? This is associated with autoimmune diseases, some of which can cause quite a spectrum of symptoms. Is there a Rheumatologist involved?
And what do you mean by your feet turn purple? Is it like a rash? Do they change colors or turn multiple colors?
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