What were the first symptoms you noticed? Tell us in the comments!
My pain started quite young at around the age of nine. That was my first inpatient hospital stay. At the time; I was diagnosed with a very severe case of gastroenteritis. I had not been feeling well and ended up with uncontrollable vomiting and severe diarrhea that became so bad that it turned into mostly blood and created enough loss of blood that my parents had a difficult time keeping me awake. While feeling embarrassed because of how severe the symptoms were in the crowded ER waiting room, a physician happened to come in on his way to work. The last thing I remembered until I awoke in a room upstairs, was him yelling to a nurse “this child needs help now!” My current physicians believe this was actually my first attack.
With HCP being so rare, especially in 1977, combined with me having no access to any family history due to being adopted; I was not tested for HCP.
At the age of 10, I was diagnosed with Chondromalacia in my right knee. The cartridge in the joint quickly deteriorated causing me to need my first knee surgery at the age of 12. As time rolled on; my knee would have problems fully healing, resulting in 13 surgeries. In one surgical procedure, they had to make a long incision from the top of my right knee, around the patella and down the length of my shin. They removed my patella, sawed my shin bone in half lengthwise, placed a screw into my shin at the bottom of that cut, chiseled out some of my hip bone and placed it in between the two sections of the shin bone at the top.
In 1991, I was t-boned on the driver’s side of my car causing the top and bottom parts of my body to lunge towards the driver side door and the center portion of my body to jerk towards the passenger side of my vehicle. During this; my left knee slammed into the driver’s side door. Because of the abusive nature of my marriage; I was not allowed to seek treatment for my injuries. This has caused me to not only have significant skeletal/disc/joint pain; but, my left knee joint quickly deteriorated eventually requiring 3 surgeries.
As I grew older; my HCP symptoms became progressively worse resulting in a plethora of inpatient stays. Because of the severity of many of these attacks; I have incurred both significant visceral and peripheral nerve damage.
The nausea/vomiting/dry heaving associated with my HCP is so severe that I formed a large abdominal hernia. My surgeon had to use mesh to repair my hernia. My surgeon told me the mesh contained the MRSA virus from the factory. Seven days post surgery; my abdomen literally exploded open from infection. Because of the MRSA and the mesh migrating; I have gone through three surgeries over six years in an attempt to remove the mesh and reversing the hernia repair and am now diagnosed as a permanent walking MRSA carrier. I also now can feel everything that goes on within my abdomen 24 hours a day, which is not only very painful on its own; but, the amount of adhesions contained within my torso feels as though my organs are constantly being yanked and pulled out of place. Just the result of this alone is excruciatingly painful.
The incessantly chronic nature of not only my HCP, the results of my hernia mesh fiasco and the results of my car wreck and the deterioration of both knee joints and damage to my spine causes me such intense pain that is severe unrelentless that it makes me feel as though I could go insane.
For 20 years, I have been told I need both knees replaced. However; I work really hard with my coping skills in trying to “deal” with the pain because the orthopaedic physicians have told me the artificial joints only last eight to 10 years and can only be replaced once after that because the stability of the bones to withstand having screws placed in them to support the plates that keep the artificial joint in place would be too greatly diminished.
Please allow me to describe to you just the HCP pain alone:
Because of the sustained nerve damage; I have burning, firey electricity on a daily basis that enormously intensifies during an attack to the point of my body jerking off the bed/chair. The lower part of my legs and feet have a greatly reduced sense of touch and my feet feel as though a convoy of semi-trucks are stacked on top of each of them. I can sometimes randomly fall because the bottom of my feet have so little feeling that I have a very difficult time feeling the ground beneath them.
Within my abdomen, where I feel everything my body does, it feels like a combination of my organs being wrung back and forth through a red-hot meat grinder, being stretched and twisted be a very strong person that is angry and being run repeatedly through a chamois roller at DIY car washes.
This feeling is present at most times but, of course, grows much worse during an attack; to the point of being unbearable.
I do sometimes dry heave in between attacks but this symptom is definitely exacerbated during an attack. Many times the lining of my abdomen and my intestines push through my hernia and at times get “stuck” to the point I have to try to straighten out as best I can and push them back where they belong.
I suffer chronic migraines that are horrible enough on their own but during an attack, they feel like a set of jackhammers working to shatter my skull to finally allow my brain to escape.
In total; I have had 29 surgeries, the multitude of inpatient stays previously mentioned, two comas, my kidneys have shut down three times, three mini-strokes, temporarily partially paralyzed twice, and a heart attack.
My physicians say I now need a splenectomy and liver transplant and still need my knee transplants because it is so painful to walk….kneel…use stairs, etc.
I have splenomegaly, colitis, cirrhosis, NASH, seizure disorder, severe anxiety disorder, visceral and peripheral neuropathy, an undiagnosed reduced eye site that needs to be diagnosed by a neuro-ophthalmologist, and almost all of my teeth have cracked and broken off leaving the roots still within my gums. It is very painful when I try to eat, as well as, simply to close my mouth. I am having to set up a GoFundMe account in an effort to raise money for dental implants because my physicians do not want me to have dentures. Both my Aortic and Mitral heart valves have regurge. Doctors tell me with the risk of lesions/infections; caused by dentures, the possibility of further damage to my heart is too great. I would most likely end up needing my heart valves replaced.
In conclusion: I’m sure anyone can see the complexity, consistency, and intensity of the chronic severe pain that, as a patient, I suffer through.
While these are the details of my story… this is much larger than just me.
Because of the current recommendations of the CDC in an attempt to combat what President Trump has referred to as “the opiate epidemic”; there is now an equally tragic epidemic crossing the nation. The epidemic is suicide: due to the mandate for physicians to ignore/refuse to fully and properly treat all the symptoms Porphyria patients; that suffer chronic pain have, out of the fear of the legal/professional negative ramifications that these very CDC guidelines have put forth.
Please understand that our chronic pain is a travesty we are being forced to endure simply because Porphyria has not been placed upon the CDC’s opiate list of excluded diseases/disorders.
Chronic pain, REGARDLESS of its pathology, is REAL!
I am respectfully imploring you to recognize our suffering as victims and to add Porphyria to your opiate list of excluded diseases/disorders.
Thank you for your time and consideration,
What were the first symptoms you noticed? Tell us in the comments!