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Old 12-12-2016, 04:24 PM
JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
JoannaP79 JoannaP79 is offline
Member
 
Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
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Quote:
Originally Posted by heb1212 View Post
JoannaP79 - My heart aches for you because I know what you're going through. I could have written this post. I have extreme nerve pain, burning and paresthesia every place you have described, including my face, nose and teeth. Most recently I've experienced severe pain shooting down both my arms and through the carpal tunnel area into my hands and fingers. I too am terrified that I'm moving from just horrific pain to becoming paralyzed. I don't know if the pain is what is incapacitating me or if there's now a truly neuromuscular manifestation of some sort and that my condition is progressing. It's so horrendous that last weekend I just sat rocking and whimpering. I barely hang in there, just like you. My strength is found in my children's faces. Also, like you, there's very little in the way of a true diagnosis, except post-viral central sensitization. I say in my head daily that I can't believe anyone has to live like this. I have very little in the way of advice except to find medications that can at least take the edge off the pain. I live in a state where medical marijuana has been approved, and I intend on seeking this out next. It's very easy to drift into a very dark place having to cope every day. I force myself to stay busy the best I can - working, taking care of my children, maintaining my house, visiting with friends here and there, though my standard in every area of life has been greatly diminished. I struggle with resentment and grief, especially in that this is invisible to anyone around me. So I'll end this where I started - that's my heart aches for you. Consider this a hug
Thank you for your lovely message. You said some things that rang so true with me. I now spend most days talking to myself about the fact I have acquired the most bizarre misunderstood and painful thing you could have. And like you I am now crippled with resentment. I spend time with friends and get out alot with my son. For that I'm grateful and it lifts my spirits alot. But, I have to present a front that is significantly far removed from the truth. No one truly understands what's happening or even what I have. I have learnt it is best to keep it away from relationships with others as best I can. But, that makes me feel so disconnected from everyone I know. I offload to a counsellor now so I can keep this from damaging friendships. When I see everyone living a life like I had and just thinking about and doing normal things I can feel really sad and resentful inside.
I stopped working as I don't know how I'd manage it, but I'm desperate for something. Financial and housing stress have made things significantly worse over the past few months.
I'm sorry you have to suffer it in every place too. And the not knowing. I have heard of pain centralization but it doesn't really explain a thing.
Thank you again for your message
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"Thanks for this!" says:
Littlepaw (12-14-2016)