Saturday, May 1, 2010

Porphyria Article

This is an article I found while beginning my research on Porphyria. I printed it, underlined in red the parts that related to my story and symptoms, and have even brought it to numerous doctors to help inform them on this condition. The article is written about AIP - Acute Intermittent Porphyria. I do not have this type, but it is very similar to what I believe I have. AIP does not include light sensitivity, which I do experience, but only has acute attacks, also something I have.

"Insomnia, leg cramps, muscle spasms, constipation, broken blood vessels on your cheeks, tiny pin-sized red dots on the trunk of your body, abdominal pain. Does this sound familiar? [yes] These are common symptoms of AIP: Acute Intermittent Porphyria. My mother describes it as the intense pain you feel when you slam your finger in the door. Only it's not just your finger, it's your whole body. Can anyone relate?"

With just this first paragraph, I was yelling out loud "Yes, this is me! I can relate!" So I continue...

"Porphyria is difficult to diagnose. You can't just call the doctor and complain of one symptom. Not only does your stomach hurt, you probably have a headache and you may even be experiencing mental confusion. This sends most physicians into a tailspin. They will do a sonogram. Then a CAT scan, maybe even a spiral scan. If you still have your appendix, you won't for long. Just ask someone with Porphyria and they will most likely tell you that was the first thing the docs took!

Muscle weakness may occur during a severe attack due to the fact that all symptoms of AIP appear to result from effects on peripheral nerves, the nerves in the abdomen, or the central nervous system. Leg cramps, muscle spasms, and stomach cramps usually originate from this area. All the spasms may bring on another little symptom: petechia. Petechia are tiny strawberry red blood dots. These are most common on the trunk of the body and usually caused by all the stress from the spasms in the abdominal area."

Hmmm.... petechia rash on cheeks and trunk of the body. That sounds familiar. See my trunk pictures in past posts.

"What's so insidious about AIP [and all other acute Porphyrias] is that it is truly intermittent. You may be fine for months, then WHAM, a severe attack will hit you. Or you may slowly slide into the symptoms until one day you just can't get out of bed. Everyone differs. Since more women than men inherit AIP it is common for other women family members who don't even know about AIP share these symptoms. A lot of women simply put it off as PMS."

The article continues to talk about what porphyria is, the different types, what can cause an acute attack, skin sensitivity, testing, and passing the porphyria gene onto children. If you would like a copy, please email me and I'll be happy to send it to you.


  1. Jan,
    I have had a diagnosis of Fibromyalgia and Depression for over 2 year now. Recently, I've had the skin rashes you show and describe. I thought I might be reacting to the brush or spiders around the home I've been living in for a year so I began looking for rash photos on the web and found this blog. Not only does it explain all of the symptoms that have been attributed to Fibro, Endometriosis, Irritable Bowel Syndrome, and more; it explains all of the symptoms that they still can't explain!

    I've been referred to one of the top Rheumatologists in the Country because I have a lot of symptoms that cannot be explained by Fibromyalgia. I have almost ALL of the things listed above. Could you please send me the article you're referring to and anything else you have? I would GREATLY appreciate it! I see the Rheumy again on Wednesday for the results from the latest round of tests.

    FYI: I've also written about my journey over the last 4 years and was also referred to the "Mental Health Unit." I decided to try it just to be sure. After 10 days, I was released with a diagnosis of....Fibromyalgia and Depression! The same diagnosis I had before my Dr. Asshole suggested it was a psychiatric disorder. I also fired Dr. Asshole.

    My website is listed below and my email is

    Thanks SO much for posting this! I simply cannot believe this may be the answer for me!!

  2. Wow this sounds like me and have been diagnosed with fibromyalgia for about 10 years but have had symptoms for as long as I can remember. Thank you for sharing.

  3. Hi. Could you please send me the article too? Thank you very much.

  4. Hi. I am in a fight with my own body right now and would love a copy as well. I not only have Fibro, but IBS, GAD, CFS, and depression, I have Lupus (SLE).

  5. I would be interested in receiving your article. diagnosed 10 years ago with fibro, depression and ptsd. I have IBS and have had the red dots on my trunk (not many) and sensitive skin. Thank you Marty R....

  6. I would really love a copy of the article too. I have a host f the symptoms described as well... Thanks!

  7. Hi..i also would love a copy of your appendix burst when i was only 12 years of age. I'm now 44 and diagnosed with fibro/CFS/IBS and chronic depression/anxiety. The AIP does describe some of the other un explained symptoms I have..very interesting indeed. Look forward to hearing from you..Thank

  8. Hello, I would really love a copy of your article too. I have been diagnosed with Fibro, Chronic cervical and lumbar diagnoses', gastroparesis , depression and other health issues. But the more I look at your symptoms, the more I think I have been undiagnosed or misdiagnosed in some ways. Thank you for your for putting your help and awareness out there.

  9. I was diagnosed with Fibro about 10 years ago, however I have spondylitis, degenerative disk disease, foot drop from a peripheral nerve in my back to my foot and I am a Type II diabetic. I have constant pain on the bottom of my feet, in both legs and hips. I have noticed the red dots on my upper check and bust area. Half the time I am wondering if these problems are side effects from medications. Please, please send me a copy to Thank you for sharing.

  10. Hello, I would love a copy of your article too. I have been diagnosed with Fibro, PTSD IBS Depression/Anxiety. I also have quite afew red blood spots on my arms and bust Ishowed them to the doctor and he says nothing about them. Thank you in advance. My email is

  11. thanks for this article.i would really like your article.i have fibro for 25 years now and still looking for help!

  12. Hi..sorry to ask again but i never received the article. Could you please send me a copy to Thank you look forward to receiving it.
    JULIA x

  13. Hubby was just diagnosed today. Thus us our 3rd extended hospital stay and he can't even get out of bed by himself. He is basically an invalid and all the drs were scratching their heads until we mentioned Porohyria to them.
    Please send this article.

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