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883d

I have Acute Intermittent Porphyria. Anyone else? Also, a chronic pain patient.

    • QTpie7260

      676d

      I have porphyria. Not sure the type yet. I’m just diagnosed but have lots of neurological & organ damage from being undiagnosed all these years. Since I was a kid I’ve had skin issues. The severe abdominal pain, back pains, burning pains in my upper limbs, and chest pain didn’t start until adulthood. I now sleep 20 hours a day everyday. I have narcolepsy too- so I think sometimes the shock from the pain forces me to knock out. I still feel every bit of the pain even when I’m dreaming. I have to used a wheelchair and rollator now to get around. Walked fine up until like age 26. I have a lot of other issues too. Not sure if they’re from porphyria. Do you know a lot about porphyria?

      • skooshy

        621d

        @QTpie7260 if I had to guess I think you have the same as me which is hereditary coprophryia or HCP for short. HCP, I have been told, is the only type that has both skin and neurological symptoms (pain etc). What other issues do you have? HCP can cause anything from depression to paralysis. It really depends on what is causing you to have flair ups. How did you find out you had porphyria and why did they not tell you which type?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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