Chronic Pain

[pleasehelp17]

ive been having odd symptoms almost as long as i can remember im a 17 yr old female...

ive had openheart surgery for a 1.7 inch hole in my heart about 6months ago, but my cardiologyst insists my problems are not related aside from v-tach...

my symptoms vary from abdominal to neorological, and are as follows:
..dizziness
..dissoriantation
..numbnesin pointer/thump/right side of left arm accompanied my nerve or muscle(not sure wich)spasms btween thumb/pointer
..syncope w/body tingling upon waking lasting anywhere from 5 seconds to 35 seconds even without excertion
..paleness
..palputations
..floaters in aeys
..trouble finding the right words/speaking and shortterm memory difficulties
..migrains on left side of head and base of head above neck to the point were if i move hear noise or talk im in severe pain
..CONSTANT hand tremors/shaking wich ive had ever since i can remember
..odd sensation on back of head upon touching it(occurs wth the migrains)(numbness)
..left side electric abdominal pain lasting from a few minutes to a few days
..facial twitching in right eye and mouth upon smiling talking etc...
..innability to balance with eyes closed
..cold sensativity
..jerky movements during all activities wich only recently started
..bladder has not grown since 6 months old and kidneys are underdeveloped, incapable to hold urin for more than about a minut frequent uti's and very frequent urination even during night

if u have any answers related to this please help or know what dr's i should see please dont hesitate

[Susanchad]

I understand most of your symptoms.... except the heart pain... and the bladder problems you have....i am not saying you have this disorder but goto www. rsdhope.org and read for yourself and see if the symptoms match what you are feeling... i understand the head pain.... and how talking to loud feels like your yelling in your head....do people tell you that you whisper all the time????? i pass out from pain and I also have incontinece issues as well.... my husband made me a Nerve pain cream and it helps me with my head pain.....if you would like more info please email me at [moderator note: e-mail address has been removed] please keep me posted on how your doing....just worry about other people who hurt....i know what i go thru....and dr's misdiagnoised me 150 times....so don't trust all dr's....they don't know everything...plus they don't live in your body.....that's why dr's have a practice because they haven't learned it yet.....hehehehehe LOL

Susan and Chad
[moderator note: e-mail address has been removed]

[tinytami]

I am a 28 year old woman, who has lived with pain for the last 6 years, I also have the majority of your symptoms, however rather than affecting my hands, it is my legs. Finally after years of doctors, tests, and MRI I saw neurological specialist who diagnosed me with RSD. RSD in a neurological disorder that affects the sympathetic nerves in your spine. It causes constant pain, tremors, migraines (mine are almost always on the left side of my head) vomiting, dizziness and nausea. Mainly because even though you may not realize it, pain in and of itself can cause these symptoms. I undergo bi lateral lumbar blocks, which help with my pain some, but unfortunately the only way I make it through my day is through a diet of pain medication. In between the injections and medicine I am living a relatively normal life, but my daily activities are limited. I am not running and jumping but I am at least doing things I couldn't do before my treatments.

[ekimzus]

Hi there, I am a 45 year old, married man. Please have your parent read this with you, just for the sake of 'an old man' contacting you on the web. It is sad, but many freaks take advantage of situations. Thank you.

wow ... you have a lot of issues. Sounds like your doctor is treating what he/she knows is wrong, and is not looking for other problems.

First, I have a question (you may answer me, but at least answer to yourself or parent).

Have you had a MRI of CAT Scan of your head/brain, and or your back? Also ... have you been seen by a Neurologist?

I am going to 'assume' that you say 'no' to at least one of these two questions. If you do say no, please make an appointment with your regular doctor (not the heart doctor), and let them know you want a Neurologist referral. A Neurologist is by far the most qualified to respond to the pains you are having.

Something for you to research, go to web site: http://www.nfinc.org/

I have many of the same issues as you. I have been diagnosed as having "Neurofibromatosis 1" (NF1). This can involve 'bumps' on your skin, I only have a few that are not seen.

I have non-cancerous tumors on the nerves along my spine. My Neurologist has done MRIs, CAT scans, x-rays, and other tests. My pain involves sciatic pain in both legs; low back, my left eye has the 'flutters' you describe, I cannot walk a straight line (heal to toe-like a DUI test you see on TV), I cannot balance on one foot, some fluttering of my hands when holding objects, occasionally my right foot just doesn't work for just a step .. and I need to catch myself from falling, the back of my head is extra sensitive as you mentioned, Urination more frequent than normal - not to your extent, short term memory, and more.

I list these to show you there is a reason I mention Neurofibromatosis. This may give a Neurologist a starting point, for which they can rule NF in or out.

Also- do you have any ringing in your ears? If you look at your eyes up close, is there any brownish spots in the white of color part of your eyes?

Please feel free to email me, I will respond. If your parents would like to talk, I will provide my number also. IF .. you have NF, it is VERY unlikely to affect your quality of life. Some very basic medications will make most of the pains go away.

Please check into it, and please stay in touch.

Mike Strehl [moderator note: e-mail address has been removed]