I, too, was told that I was very descriptive. As a nurse, I thought the more descriptive I could be with what the symptoms FELT like, that I might finally one day say the right thing causing one of the handful of doctors that I was seeing to have an epiphany leading to a diagnosis. Instead, I was told that I was hyperbolus, but here it goes....over about 45% of my body, I feel like I have been doused in gasoline and set on fire, then dropped into a colony of fire ants up to about my knee area, arms & legs feel like they are full of lead. I get the squeezing vice sensation in my legs from my thigh to my ankle, but thankfully only in one leg at a time. I get a horrible sensation of someone taking serrated steak knives and sawing on my gums in between the gaps of my teeth and let me not forget the sensation of feeling like I have skidded across asphalt on the palms of my hands. I get waves of goosebumps starting on the left side of my head that move down to my toes and oddly, at the same time, I get the electrical buzzing sensation on the right side. Some mornings, I awaken to what feels like dozens of papercuts to my gums. The feeling of having a pumice stone for a L eyeball is more fun than anyone deserves to have which seems to go along with the muscles on my L side of my face doing one of two things, 1) the appearance of a unilateral facelift, or 2) a unilateral droopy face. Other than the syncope episodes, the only other symptoms I can add is eating just enough to keep a bird alive but feeling (and looking) like I just finished off 2 Thanksgiving dinners. I can go from a flat stomach to looking 7 months pregnant in about 10-15 minutes after eating. I actually welcome the numbness b/c anything is better than the burning! Geesh, I left out one...the yawn attacks which precede the syncope. I will yawn so much that I can barely get a word out between the yawns. When this happens, I know I'm about to pass out.
The ONLY thing that gets rid of my pain is taking Lyrica and Vicodin at the SAME time. Either on their own (for me) are ineffective, but together I am a pain free zombie, but at least I get moments of being pain free.
R.j. Stoll said:
Have any pain medicine recommendations. IVIG now is not working and even seems to be making me worse as each time I now take it my symptoms seem toget worse. Have been taking IVIG g now for over two years I wonder if any one has gone off without getting worse. Looked u under peripheral neuropathy foundation seems to be a cat agony of simply periphrastic neuropathy of unknown cause.
It’s ddinately NOT just you and your descriptions are spot on!