Discussions By Condition: I cannot get a diagnosis.

NOT FIBROMYALGIA!!! Desperatly need help!!!

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: NOT Fibro!!!
  • January 2, 2010
  • 08:28 PM

Hi, my names John and for the past 3 - 4 years ive had bad medical problems

Im 15 turning 16 soon, Male.

My family has a history of: Cancer, Blood disorders (my moms dad had a blood disorder where his blood wouldnt clot) and Arthritis

So 3 - 4 years ago I started to have symptoms:

Stomach pain

Joint pain all over the body

Muscle pain

Bone Pain

EXTREME insomnia and sleep deprivation (wont sleep for 4 - 5 days at a time)

mysterious swelling that only lasts seconds but is very painful (wrists sometimes will swell to the size of a soda can but will only stay liek that for max 30 seconds)

Purple marks under my skin in my thighs and kness (A LOT of them, not one or two, but over 20 id say)

Very fast heart rate, that almost never slows down (110 - 130 BPM)

Shortness of breath

Constant headaches

Feeling as if my neck isnt supporting my head

constant stiff/sore neck

lower right side abdomen pain (feeling like somebody is putting pressure on the area)

Extremely bad memory loss (cant remember something that happened 5 minutes ago, cant remember what day it is, sometimes I wake up at 8 pm and think its 8 am)"



and the reason im posting here today, my new symptoms:

3 days ago I took a bath and when I got out I noticed that my feet were BRIGHT red, and my toes were red but turning a purple hue

that only happens when my feet touch WATER. the water wasnt to cold, it wasn't to hot, I even tested it with my hands and got my mom to test it. it deffinatly was NOT to hot or cold.

it was luke warm

Then, the next day I stood in some water in the kitchen, because snow got in from the door being open. the water was warm, again. it was warm because the heater was on and it had been sitting there for at least 2 hours

so when i stepped in it my feet INSTANTLY became swolen, bright red, purple hue to the toes

again, I got people in my family to touch the water to see if it was freezing or extremely hot. It wasnt, it was warm

the next thing that happened was I was doing calligraphy homework, and i got ink on my hand

So I went to wash it, set the tap to warm and when I started to wash my hands, they became numb, slightly swollen, but VERY tingly



this is very concerning to me because I thought Fibromyalgia wasn't supose to progress as other illnesses do. I thought the symptoms you get is what stays unless you have complications

So in my eyes, Fibromyalgia is off the table now (and yes I was offically diagnosed with Fibro roughly 2 years ago at Sick Childrends hospital)

I have NEVER thought it was Fibro but this is the proof

theres something nuerological going on here, which explains the heart, my shortness of breath, and everything else


EDIT:

have been tested for:

Lyme disease, several times

Lupus

ANA blood panal

Blood count

stool sample for parasites

urine test for calcium ect..

multiple blood tests for cancer markers

countless blood tests looking for inflamation

countless blood tests looking for ANYTHING out of the norm

3 MRI's of the head over the years

Xrays of my entire body

ultrasound of my heart (showing my valves pumping like they are on steroids, opening but not closing completely which was a concern to the tech guy doing the ultrasound)

heart monitor test showing arrythmia

ALL NEGATIVE (besides the heart altrasound and a EKG + heart monitor test showing arrythmia)

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13 Replies:

  • Anyone have any thoughts? the feeling in my hands and feet when they touch water is moving up my legs and arms every time it happens now
    NOT Fibro!!! 9 Replies
    • January 3, 2010
    • 11:34 PM
    • 0
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  • Anyone have any thoughts? the feeling in my hands and feet when they touch water is moving up my legs and arms every time it happens nowHi.Can you describe what the Purple marks look like?Do they look like in the picture below or are they more like stretchmark looking in appearance or something else?http://www.lichenplanus.com/app/images/lichen_planus_10655-bef-9may08-large.jpghttp://images.google.com.au/imgres?imgurl=http://dermatology.cdlib.org/127/case_presentations/blashkoid/3.jpg&imgrefurl=http://dermatology.cdlib.org/127/case_presentations/blashkoid/klein.html&usg=__oa-J_9HYOlfesOQw5xBfDHwzTII=&h=864&w=648&sz=42&hl=en&start=4&um=1&tbnid=13hH9YUMmQKNgM:&tbnh=145&tbnw=109&prev=/images%3Fq%3Dlichen%2Bplanus%2Blegs%26hl%3Den%26client%3Dfirefox-a%26rlz%3D1R1GGGL_en___AU313%26sa%3DG%26um%3D1
    Anonymous 42789 Replies
    • January 4, 2010
    • 00:28 AM
    • 0
    Flag this Response
  • Hi.Can you describe what the Purple marks look like?Do they look like in the picture below or are they more like stretchmark looking in appearance or something else? http://www.lichenplanus.com/app/images/lichen_planus_10655-bef-9may08-large.jpghttp://images.google.com.au/imgres?imgurl=http://dermatology.cdlib.org/127/case_presentations/blashkoid/3.jpg&imgrefurl=http://dermatology.cdlib.org/127/case_presentations/blashkoid/klein.html&usg=__oa-J_9HYOlfesOQw5xBfDHwzTII=&h=864&w=648&sz=42&hl=en&start=4&um=1&tbnid=13hH9YUMmQKNgM:&tbnh=145&tbnw=109&prev=/images%3Fq%3Dlichen%2Bplanus%2Blegs%26hl%3Den%26client%3Dfirefox-a%26rlz%3D1R1GGGL_en___AU313%26sa%3DG%26um%3D1 They are the same color as those but they are inside the skin, they arent like dumps.
    NOT Fibro!!! 9 Replies
    • January 4, 2010
    • 03:05 AM
    • 0
    Flag this Response
  • Hi.Can you describe what the Purple marks look like?Do they look like in the picture below or are they more like stretchmark looking in appearance or something else? http://www.lichenplanus.com/app/images/lichen_planus_10655-bef-9may08-large.jpghttp://images.google.com.au/imgres?imgurl=http://dermatology.cdlib.org/127/case_presentations/blashkoid/3.jpg&imgrefurl=http://dermatology.cdlib.org/127/case_presentations/blashkoid/klein.html&usg=__oa-J_9HYOlfesOQw5xBfDHwzTII=&h=864&w=648&sz=42&hl=en&start=4&um=1&tbnid=13hH9YUMmQKNgM:&tbnh=145&tbnw=109&prev=/images%3Fq%3Dlichen%2Bplanus%2Blegs%26hl%3Den%26client%3Dfirefox-a%26rlz%3D1R1GGGL_en___AU313%26sa%3DG%26um%3D1 They are like those besides the fact that they are inside the skin, not like bumps.
    NOT Fibro!!! 9 Replies
    • January 4, 2010
    • 05:54 AM
    • 0
    Flag this Response
  • Hey, sorry last time i checked it didnt post my response but now it seems to have posted it 2 times :eek: anyway I woke up today and decided to cut my toe nails when i took off my sock 2 of my toes were extremely swollen at the tip and very red i have a history of heart problems so im concerned that this is clubbing and an early sign of heart disease... anybody know what this could be?
    NOT Fibro!!! 9 Replies
    • January 6, 2010
    • 07:20 PM
    • 0
    Flag this Response
  • Just really curious, what are your eating habits?:eek::mad::confused: Even when we get something as simple as the Flu or Cold, our body, internally is fighting off what is going on internally. Think about it, our whole internal system is on it's own, we don't tell our heart to pump or our liver & kidneys to filter things in our body. we don't tell on Thyroid & Spleen what to do. Our internal system is very smart! It wants to be happy & healthy but we have to make sure the fuel is good fuel! Just like our cars, if the gas has water, in it, our car does not run well. You need to journal your eating. When I was diagnoised with Hypoglycemia, I was eating foods that I thought were healthy for me but because my body was so depleted of Nutrition, those foods were really stressing out my pancreas, I could eat a banana and within 1-3 hours I would get a high heart throbbing, falling to sleep, headache. I didn't sleep well at night but during the day I would fall asleep! I know it sounds crazy but I knew right after I ate my supper meal, I would sits down & falls to sleep!!! I would wake up the next morning feeling really tire. I could go in the other room & come back to be reminded what I had been doing before I left the room. SOme call it brain fog. I definately felt in a fog. Just wanted to mention, we are a chip off of the old block. IF, your parents weren't healthy. This doesn't mean that we can't change the course of our direction with health concerns. Just like a job an a career, we can stop and change directions at any time. No body said it would be easy to do! Sincerely,AdenoSurvivor Hi, my names John and for the past 3 - 4 years ive had bad medical problems Im 15 turning 16 soon, Male. My family has a history of: Cancer, Blood disorders (my moms dad had a blood disorder where his blood wouldnt clot) and Arthritis So 3 - 4 years ago I started to have symptoms: Stomach pain Joint pain all over the body Muscle pain Bone Pain EXTREME insomnia and sleep deprivation (wont sleep for 4 - 5 days at a time) mysterious swelling that only lasts seconds but is very painful (wrists sometimes will swell to the size of a soda can but will only stay liek that for max 30 seconds) Purple marks under my skin in my thighs and kness (A LOT of them, not one or two, but over 20 id say) Very fast heart rate, that almost never slows down (110 - 130 BPM) Shortness of breath Constant headaches Feeling as if my neck isnt supporting my head constant stiff/sore neck lower right side abdomen pain (feeling like somebody is putting pressure on the area) Extremely bad memory loss (cant remember something that happened 5 minutes ago, cant remember what day it is, sometimes I wake up at 8 pm and think its 8 am)" and the reason im posting here today, my new symptoms: 3 days ago I took a bath and when I got out I noticed that my feet were BRIGHT red, and my toes were red but turning a purple hue that only happens when my feet touch WATER. the water wasnt to cold, it wasn't to hot, I even tested it with my hands and got my mom to test it. it deffinatly was NOT to hot or cold. it was luke warm Then, the next day I stood in some water in the kitchen, because snow got in from the door being open. the water was warm, again. it was warm because the heater was on and it had been sitting there for at least 2 hours so when i stepped in it my feet INSTANTLY became swolen, bright red, purple hue to the toes again, I got people in my family to touch the water to see if it was freezing or extremely hot. It wasnt, it was warm the next thing that happened was I was doing calligraphy homework, and i got ink on my hand So I went to wash it, set the tap to warm and when I started to wash my hands, they became numb, slightly swollen, but VERY tingly this is very concerning to me because I thought Fibromyalgia wasn't supose to progress as other illnesses do. I thought the symptoms you get is what stays unless you have complications So in my eyes, Fibromyalgia is off the table now (and yes I was offically diagnosed with Fibro roughly 2 years ago at Sick Childrends hospital) I have NEVER thought it was Fibro but this is the proof theres something nuerological going on here, which explains the heart, my shortness of breath, and everything else EDIT: have been tested for: Lyme disease, several times Lupus ANA blood panal Blood count stool sample for parasites urine test for calcium ect.. multiple blood tests for cancer markers countless blood tests looking for inflamation countless blood tests looking for ANYTHING out of the norm 3 MRI's of the head over the years Xrays of my entire body ultrasound of my heart (showing my valves pumping like they are on steroids, opening but not closing completely which was a concern to the tech guy doing the ultrasound) heart monitor test showing arrythmia ALL NEGATIVE (besides the heart altrasound and a EKG + heart monitor test showing arrythmia)
    AdenoSurvivor 7 Replies
    • January 7, 2010
    • 00:00 AM
    • 0
    Flag this Response
  • Just really curious, what are your eating habits?:eek::mad::confused: Even when we get something as simple as the Flu or Cold, our body, internally is fighting off what is going on internally. Think about it, our whole internal system is on it's own, we don't tell our heart to pump or our liver & kidneys to filter things in our body. we don't tell on Thyroid & Spleen what to do. Our internal system is very smart! It wants to be happy & healthy but we have to make sure the fuel is good fuel! Just like our cars, if the gas has water, in it, our car does not run well. You need to journal your eating. When I was diagnoised with Hypoglycemia, I was eating foods that I thought were healthy for me but because my body was so depleted of Nutrition, those foods were really stressing out my pancreas, I could eat a banana and within 1-3 hours I would get a high heart throbbing, falling to sleep, headache. I didn't sleep well at night but during the day I would fall asleep! I know it sounds crazy but I knew right after I ate my supper meal, I would sits down & falls to sleep!!! I would wake up the next morning feeling really tire. I could go in the other room & come back to be reminded what I had been doing before I left the room. SOme call it brain fog. I definately felt in a fog. Just wanted to mention, we are a chip off of the old block. IF, your parents weren't healthy. This doesn't mean that we can't change the course of our direction with health concerns. Just like a job an a career, we can stop and change directions at any time. No body said it would be easy to do! Sincerely,AdenoSurvivor I eat very well usually, healthy food, good balance of meat and greens, fruits Sometimes i go on junk food sprees tho like ill eat mcdonalds for 2 days straight then go back to regular food (i rarely do that though)
    NOT Fibro!!! 9 Replies
    • January 7, 2010
    • 03:30 AM
    • 0
    Flag this Response
  • My Dad is a Diabetic, his feet used to get really cold & also a friend of their had feet turning blue......your feet sound like their feet. Do you have circulation issues or Diabetic issues, like my Dad? Do you drink Diet drinks? Do you stay away from MSG? It's in chips, crackers, etc. sometimes listed as flavorings. I get palipatations & HandsSwollen :) from to much salt & MSG in foods. Also, I think when I have a little bit of my gums inflammed, I have gotten palipatations. What Nutritional & Cleansing are you doing to support your body? I found, when I was Diagonoised with my cancer, my body was really Nutritionally lacking. I've found that Nutrition & Cleansing, I have a program that I like to do, it is important for me to do today for staying on a pro-active lifestyle. I drink Reverse Osmosis Water. Do you drink water to help flush out stuff? Sincerely,AdenoSurvivor:) I eat very well usually, healthy food, good balance of meat and greens, fruits Sometimes i go on junk food sprees tho like ill eat mcdonalds for 2 days straight then go back to regular food (i rarely do that though)
    AdenoSurvivor 7 Replies
    • January 7, 2010
    • 05:50 AM
    • 0
    Flag this Response
  • Hi,It sounds like you have a case of severe fight-or-flight overload. If you went to a doctor of oriental medicine, they'd probably work with the "Triple Warmer" meridian, which governs fight-or-flight. When triple-warmer is over-active, nothing else works right. It seems that you're basically allergic to everything, and this is strongly related to Triple Warmer.Look up how to sedate triple warmer, and that'll be a good start.Also, Energy Psychology - "acupressure for the emotions" - helps with all conditions. EFT will help you resolve the secondary gain (attention?) that you get from having an undiagnosable condition. -James Knochel
    JamesKnochel 12 Replies
    • January 8, 2010
    • 08:23 AM
    • 0
    Flag this Response
  • I saw a show about these symptoms on (I think) Bravo channel under "Medical Mysteries". It was man who had suffered from these same symptoms for years. Review those shows and see what comes up. I particularly remember he had problems with his feet, face,extremities turning bright red. They did find out the reason. I hope this helps.Hi, my names John and for the past 3 - 4 years ive had bad medical problems Im 15 turning 16 soon, Male. My family has a history of: Cancer, Blood disorders (my moms dad had a blood disorder where his blood wouldnt clot) and Arthritis So 3 - 4 years ago I started to have symptoms: Stomach pain Joint pain all over the body Muscle pain Bone Pain EXTREME insomnia and sleep deprivation (wont sleep for 4 - 5 days at a time) mysterious swelling that only lasts seconds but is very painful (wrists sometimes will swell to the size of a soda can but will only stay liek that for max 30 seconds) Purple marks under my skin in my thighs and kness (A LOT of them, not one or two, but over 20 id say) Very fast heart rate, that almost never slows down (110 - 130 BPM) Shortness of breath Constant headaches Feeling as if my neck isnt supporting my head constant stiff/sore neck lower right side abdomen pain (feeling like somebody is putting pressure on the area) Extremely bad memory loss (cant remember something that happened 5 minutes ago, cant remember what day it is, sometimes I wake up at 8 pm and think its 8 am)" and the reason im posting here today, my new symptoms: 3 days ago I took a bath and when I got out I noticed that my feet were BRIGHT red, and my toes were red but turning a purple hue that only happens when my feet touch WATER. the water wasnt to cold, it wasn't to hot, I even tested it with my hands and got my mom to test it. it deffinatly was NOT to hot or cold. it was luke warm Then, the next day I stood in some water in the kitchen, because snow got in from the door being open. the water was warm, again. it was warm because the heater was on and it had been sitting there for at least 2 hours so when i stepped in it my feet INSTANTLY became swolen, bright red, purple hue to the toes again, I got people in my family to touch the water to see if it was freezing or extremely hot. It wasnt, it was warm the next thing that happened was I was doing calligraphy homework, and i got ink on my hand So I went to wash it, set the tap to warm and when I started to wash my hands, they became numb, slightly swollen, but VERY tingly this is very concerning to me because I thought Fibromyalgia wasn't supose to progress as other illnesses do. I thought the symptoms you get is what stays unless you have complications So in my eyes, Fibromyalgia is off the table now (and yes I was offically diagnosed with Fibro roughly 2 years ago at Sick Childrends hospital) I have NEVER thought it was Fibro but this is the proof theres something nuerological going on here, which explains the heart, my shortness of breath, and everything else EDIT: have been tested for: Lyme disease, several times Lupus ANA blood panal Blood count stool sample for parasites urine test for calcium ect.. multiple blood tests for cancer markers countless blood tests looking for inflamation countless blood tests looking for ANYTHING out of the norm 3 MRI's of the head over the years Xrays of my entire body ultrasound of my heart (showing my valves pumping like they are on steroids, opening but not closing completely which was a concern to the tech guy doing the ultrasound) heart monitor test showing arrythmia ALL NEGATIVE (besides the heart altrasound and a EKG + heart monitor test showing arrythmia)
    Anonymous 42789 Replies
    • January 9, 2010
    • 06:14 PM
    • 0
    Flag this Response
  • I saw a show about these symptoms on (I think) Bravo channel under "Medical Mysteries". It was man who had suffered from these same symptoms for years. Review those shows and see what comes up. I particularly remember he had problems with his feet, face,extremities turning bright red. They did find out the reason. I hope this helps. Hey all, I haven't been able to come back and responde for awhile because My toes started swelling and turning black So atm I am taking antibiotics but it isnt helping so im getting worried that I either have a drug resistant infection or a clot... anyway This post particularly caught my interest, because I watch these types of shows all the time to see if i fidn nay1 with my symptoms on there, So ill be sure to check it out Anyway Ill be back to add more and responde to everybody elses posts
    NOT Fibro!!! 9 Replies
    • January 10, 2010
    • 00:15 PM
    • 0
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  • check for:1. Vitamain/mineral deficiency- namely B-12, Folate2. Yeast (in stool) or blood3.MTHFR gene ( you can buy it online) 4. Check Homocyseine level- when stressed
    Anonymous 42789 Replies
    • January 11, 2010
    • 10:50 PM
    • 0
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  • 24 hour urine test for cathecholomines (excessive) would drive heart to beat fastcheck for hyperthyroid check allergys to food and molds
    Anonymous 42789 Replies
    • January 11, 2010
    • 10:57 PM
    • 0
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