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Old 01-23-2014, 07:46 PM #1
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mary jane mary jane is offline
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mary jane mary jane is offline
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Join Date: Dec 2013
Location: uk
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Default nothing makes sense with a rare disease

I am only 26 and yet for some reason, I have developed neuropathy in my vulva. I have been forced to give up any hope of ever having a boyfriend again or even children.
I can't share my pain with others out of fear they will avoid me or think I'm crazy. not even my own mother understands. Doctors have been useless so far.
I have also been forced to give up on an active life, I can't walk much or else become very tired and my nerves will wake up and start buzzing like they like to do.
I no longer have friends. My life involves going to university for a few hours, then rushing home to rest. I don't know what to do. NOTHING makes sense anymore. I hope to become an accountant but worry I will never get a job with this health problem.
I have very dark thoughts. Nothing makes sense. Not even religion gives me relief. Everything seems like an elaborate nightmare.
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I have...vulval nerve pain
I take...50 mg Elavil/Ami, 150 mg LYRICA
+magnesium oxide (works for me)
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Old 04-12-2014, 07:59 PM #2
boo_♥ boo_♥ is offline
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Post hi, I'm boo

Quote:
Originally Posted by mary jane View Post
I am only 26 and yet for some reason, I have developed neuropathy in my vulva. I have been forced to give up any hope of ever having a boyfriend again or even children.
I can't share my pain with others out of fear they will avoid me or think I'm crazy. not even my own mother understands. Doctors have been useless so far.
I have also been forced to give up on an active life, I can't walk much or else become very tired and my nerves will wake up and start buzzing like they like to do.
I no longer have friends. My life involves going to university for a few hours, then rushing home to rest. I don't know what to do. NOTHING makes sense anymore. I hope to become an accountant but worry I will never get a job with this health problem.
I have very dark thoughts. Nothing makes sense. Not even religion gives me relief. Everything seems like an elaborate nightmare.
I'm sorry to hear of your health issues and how they are affecting your life. I've only posted on these boards a few times and I also know that by everyone ignoring (or appearing to ignore) you and your pain, it only makes it worse. I don't see many posts on this section of the site. You might try reposting in the rare disease or illness forum. Maybe you can find some help there? I don't have the same exact problem as you (I've been diagnosed with pseudotumor cerebrospinal), but i definitely know how it feels for no one to understand or to make light of your health issue. I haven't gotten as much support from this site as I wanted, but maybe you will have better luck than I. Good luck, and if you want to talk to someone, I'll be here.
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