I initially joined "Patients Like Me" several years ago because I had severe Fibromyalgia. Now, I also have Acute Intermittent Porphyria. From what I have learned so far, it is a rare genetic blood disorder. What it means for me is the worst pain I've ever felt in my life. I though Fibromyalgia flare ups were the worst. They pale in comparison to AIP. I'd just begun to put my life back together from the damage Fibromyalgia had done. My boyfriend of over a decade dropped me like a hot potato. This is the same make who had told me "our relationship is just like we are married". I never bought that. There were so many "red flags" I ignored. Hindsight is 20/20. He'd told me we would be married, but that was clearly a way to have his cake and eat it too as well as keep me hanging on. I am very ashamed of that. I found out who my true friends are and who were acquaintances using me I'm very tenderhearted so I am my own worst enemy, always seeing only the best in people and very gullible. The initial "introduce yourself" was from after my initial diagnosis and experience with Fibromyalgia. Before my diagnosis I didn't know what was wrong with me. I had chronic, extreme pain, beginning with my entire spine and radiating out. I also had other places on my body that felt like I had been beaten with a bat, very tender to the touch, but no bruises. The pain was so bad I could barely turn myself over in bed in the beginning. I went to many specialist receiving the same diagnosis of Fibromyalgia, but hoping with each new specialist to get a diagnosis that came with a cure. I had to stop work (I loved my job and my salary was fabulous) and start a whole new life. I was depressed due to pain, fatigue, discovering which friends were not friends at all, and the loss of income. My social life took a big hit. No one understood. There are no visible signs and, at time I first joined this group, most had never heard of Fibromyalgia. I was told many times that it was a "made up" illness and it was all in my head. Now there are commercials on TV for Lyrica among other prescription medications. I read that it is not a progressive illness, but I discovered that is very much NOT TRUE. Despite all the changes I implemented, i.e. exercise, drinking more water, having a regular bedtime schedule, etc., to improve my health, my condition did get worse. I began a new life that I found very rewarding. I began breeding parrots (my father had been doing this for a long time) and hand feeding the baby parrots, beginning when they reached the age of three weeks, even when it meant waking up throughout the night for feedings, became my favorite thing to do. It brought me so much joy. As they grew, cuddling after feedings was another source of joy. Sadly, through a series of very traumatic events, that came to an end. My father now has the breeder parrots and worse still I no longer have any communication with my father and not by choice. I've lost my mother, brother, sister, aunt, and cousin. Not because of my illness. I've done everything possible my entire life, beginning with my first memories at about three years old, to get my father to be proud of me and love me. I realize that isn't something anyone should have to do. A mother and father should love their children unconditionally. It took me until recently, to realize that no one shouldn't have to work at getting their parents to love them. I have a son of my own and I loved him from the moment I found out I was pregnant. He doesn't have to do anything for me to love him. I love him with all my heart because he is my son and not because of anything he does for me. He is terrific and has always been there for me. Raising him is the most amazing thing I've ever experienced in my life. He was about 10 years old when I was diagnosed. As for my physical condition, I still struggle with sleep. I was hospitalized for 5 weeks with a severe case of shingles. It took years to recover from that. My overall physical condition affected my relationship with the man I loved and lived with for 13 years. He began drinking heavily every day and that escalated to him becoming physically abusive. That only happened one time and I left. I left my own home rather than stay and take any chances. He still lives in the house and I moved back to my home state of Georgia. The stress level before I left became extreme and having been assaulted and nearly killed by my ex-husband 15 years prior proved it was necessary to take this new threat very seriously. When I finally got in to see a pain management specialist here I was told if I stayed on the medications I was on I would be dead in less than ten years. He cut me off cold turkey and going through withdrawal was horrific. I was determined and my stubborn streak served me well. I accomplished my goal of getting off all the pain medication I had been on. It took two months. I have moderate to severe pain every day and I do take Hydrocodone as needed. I also take valium twice a day, as needed, and I only take them when it is truly necessary. I still have difficulty sleeping.
I began having these, what I call attacks, where in a matter of seconds my flat abdomen extends to look like I am six months pregnant. There is no warning and it really does happen in a matter of seconds. The pain in my abdomen cuts through to my back and is unbearable. It feels like someone has held a chainsaw over a fire until it is glowing red and I am being sawed into continuously. I can't suffer this pain without crying out in pain. That is followed by going from constipation to diarrhea. I know this is graphic, but pure liquid is coming out and then I must grab a bucket because I then begin throwing up. This can last for hours until I am dry heaving and there is nothing left to come out the other end. I can't help but notice, when this happens in the evening, that everything I have eaten that day has remained in my stomach, undigested. The pain does not go away and there is no way to get comfortable. I take my pain medication, but it winds up wasted as I throw it up. If, even a drop of water, sipped, it immediately causes more pain and more dry heaving. I am currently searching for a doctor who is educated in Porphyria. In the times I went to the emergency room the doctors admitted they had to "google" porphyria. That doesn't make any difference in my treatment. I am given intravenous fluids and pain medication with anti nausea medication and sent home. The final symptom was the urine specimens given at these ER visits was the color of coca cola. Additionally, and maybe not connected to either Fibromyalgia or Porphyria is that something is definitely very wrong with my lower back on the right side. I do not yet have a diagnosis for that. I only know that sitting up, walking, specifically putting weight on my right leg causes a very sharp pain in that area. I'm having difficulty finding a doctor who specializes in Porphyria. I've found none in Georgia and I'm not sure the information that there is a specialist in Birmingham, AL has not been confirmed. My search continues. For now, my life is at a complete standstill other than the absolute necessities. Those are completed while enduring excruciating pain. I also have a chronic problem feeling like I am going to faint. The large amounts of water I am drinking have not helped this problem as I had hoped. I want a life. Right now, I am only surviving. I may not be able to do everything I want to do, but I do hope for more than being bedridden, flat on my back with my legs elevated to keep all pressure off my lower back. I hope this is not the end of my story, but the beginning of a story with a happy ending.