Porphyria Support Group
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). The hepatic porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, seizures, and mental disturbances, including hallucinations, depression, anxiety, and paranoia.
Hello everyone,
I was a fitness coach until I was about 35, when symptoms began to override my ability for any type of consistency. I was diagnosed with AIP at Mayo Clinic in 2012.
Since then I lost my job, gained disability employment, lost my fiancée, then began a now 6yr journey that has brought me nowhere but down.
I’ve got good family support, and my finances are stable. I don’t need to worry about debt...
... but I’m losing it. 6yrs on and I thought I’d have this under control- maybe not cured but at least found a way to live with the symptoms and still be of use to society. That hasn’t happened, and I guess I’m wondering if anyone else is having this hard a time getting well?
i have a specialist and a gp, I have disability insurance and a roof over my head. I’m extremely lucky to basically have no other worries but to get well. But I’m not getting any better.
Its as though my metabolism is a gear shift, amd every time I feel well enough to rev the motor, I get sick from needing to switch gears (higher/lower metabolic activity). I’ve taken panhematin twice but it gave me clots both times, so it’s no longer an option.
My diet is cleaned up, I don’t fast and regularly use carbs to keep symptoms at bay.
Two scenarios keep repeating: 1. I wake up feeling pretty good, and start a regular day. I exercise a little, work a few hours, run some errands, walk the dogs... and I seem ok. But the next day I feel like the worst hangover of my life (I don’t drink alcohol) with gut pain and neuropathy. And I can stay sick for days to weeks.
Or, 2. I wake up feeling worse than when I went to bed. So I stay in bed until scenario 1 presents itself again, and then everything repeats.
Is anyone having a similar experience?
ps I’m on 60-180mg morphine (daily), 7.5-22.5 mg zopiclone (daily), and 4-8mg Ativan (per procedure like needles or airplane rides 1 or 2 per 60 days).
Thanks for listening!
This attack has reminded me to stay on a regular schedule, eat regularly (even if I'm not really hungry), drink lots of water, get enough sleep, look up anything new I plan to put in or on my body, and keep stress down - as much as possible.
I also wonder if my asthma/upper respiratory symptoms are related to porphyria. Anyone?
I’m sorry to hear it... definitely stay well fed and hydrated! I’ve been on a decent streak here for about two weeks after starting new therapy.
Yes, I have almost identical stories. The nerve pain absolutely has gotten worse over the years. I would describe it the same way you are, to a tee. What I would add is hat my hands are just as bad as my feet. It’s affected my ability to play guitar and piano as well. I’m not in a band or anything, but yeah, the progressively worse nerve pain is definitely a thing. Hands, feet, back and gut are the worst.
Do you pay a lot of attention to nutrition? I find my best periods are when my diet mainly consists of rice, sweet potato, unsweetened almond milk, coconut oil... basically one-ingredient items. I may not get sick from having a soda, but if I have a week of off and on take out (as an example) I’ll start to get sick.
That book I recommended for you teaches Porphyria as an environmental illness so I try to just look at my liver as a broken filter, and I don’t ingest anything that makes it harder to filter (like preservatives and food chemicals).
Only when my food intake is on point do I stand a chance of feeling normal, it seems.
I hear you. From 35-40 I aged 20yrs and put on 50lbs!
This October I will have 3 years sobriety from soda. Lol
I think it was the stress, lack of sleep, and not eating regularly that caused this latest one. 20/20 hindsight, I guess.
That’s good to hear you’ve got your nutrition down, I think it’s so important. Your diet sounds a lot like mine except for the yogurt, it makes me incredibly sick. I don’t really eat dairy at all, actually, im pretty sure I’m lactose intolerant.
I think stress has a bigger effect than I ever previously anticipated. There are sometimes that I’m so sensitive I can’t watch a movie. The emotional ride can be overwhelming. It’s super bizarre, lol
Yeah I was a mess, and I found out exactly why:
So one of the things that also happens with the amount and type of rx’s we take, is that it will destroy your hormone profile- everything will be out of balance.
Something I forgot to mention is that I credit this turnaround in the last few months to seeing and endocrinologist and testing my system. They found many many deficiencies (all listed as side effects of the rx’s I’m taking). I had the hormone profile of a 120yr old man. Not even a stretch.
Now, a lady will be looking to balance a different type of profile (you don’t want 100mg of testosterone everyday, I’m sure), BUT I would highly recommend getting an endocrinologist to check your hormone profile. It probably saved my life. I started a new regimen in August and it’s been amazing so far.