Quote:
Originally Posted by canagirl
I am in excruciating pain head to toe. I can't even describe it . Every neuropathy symptom u can have, I have. All over. It never atops or let's up not for a second. I can't lie down bc my bck and head go insane. I can't lie on my front bc my legs go insane ( more than the usual 10 score). I know I don have a formal diagnosis but my pm dr agrees it's sfn just waiting for test. My neuro on the other hand thinks I have bfs an depression... But when I ask her about the excruciating pain she doesn't even reapond.
I have been on noetriptiline for about two weeks and not even an inkling of relief.
I want to live for my baby so bad, but I don't know how. Everyday is a major struggle and I don't even get relief by sleeping bc there is no sleeping.
U r right, I don't know if I will need meds forever. But I can't see how this will get any better. This started a year ago and got worse fast ( mind u I think acupuncture caused this extreme pain, I had all the other symptoms before bit not this pain).
In case I do need meds forever, I want to be smart about it( haven't seen many people posting recovery from sfn except glen)
I understand people may think it's not as bad am I am saying but hinest to god it is. I am a strong person always have been. I have a wonderful husband ,we both have great careers, comfortable financially. Wonderful ( more than u know parents ) everything in my life is perfect. I am not depressed ( sorry, I am but bc of the pain not life)
I just need relief fast. Soo desperate but need to be smart about the path I take to get it.
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Canagirl,
I know its as bad as you say. I know that the pain and lack of sleep is like living hell. I can just tell you from my experience that as this neuropathy/illness/autoimmunity- whatever the heck this is slowly crept up on me and then hit me like wildfire, I was unrecognizable to myself.
I thought I was invincible. I was a happy mom, wife, and holistic health counselor- and the picture of health. I was loving life!
and then...it all fell apart.
I just want to tell you that this pain and suffering and lack of sleep turned me into someone else. I became depressed and anxious. It only made everything worse. I was so sad. I can't play my guitar. I can't spend hours in the kitchen creating recipes for the book I was working on. I was fixated on the future and what would happen.
I went through 4 months that I couldn't drive. I couldn't turn the steering wheel. I was so disoriented that I felt drunk all the time and had a hard time following conversations and comprehending things. I couldn't read because there were missing spots in my vision. The pain was crippling.
I can drive now. My cognitive function is improving (still not normal) and I don't feel as drunk as often. I have a lot of pain, stinging, pulsing, shooting, stabbing, breathing, burning, muscle spasms- but its not as intense and constant as before.
I feel that something is shifting very slowly in a positive direction. I am coming out of the depression and meditation is helping.
When that doesn't help and I need a break from the muscle spasms and nerve pain I take 1/2 oxycodone and 1/2 valium together. It gives me about a 2-3 hour break and resets my pain threshold. I don't want to become dependent on it and I want it to work when I'm desperate so I only take it a few times a week when absolutely necessary.
I hope that helps. I hope you get through this acute phase and that it calms down. I am thinking of you
