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I'm out here/ Somatoform disorder

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I'm out here/ Somatoform disorder

Postby Gwenn » Mon Mar 16, 2015 1:08 am

I'm Gwenn um, i exist. I have my story that i want to say aloud for the first time. I have Somatoform disorder. i struggle with anxiety on a daily basis and everyday is a struggle for me. I am a teen and have diagnosed for 8 months but i have had pain for 1 year. A year ago today i couldn't walk and it was the beginning of my somatoform disorder. I just name a weak ago Shadow.
i have to wake up every morning and go to school. I have pain 24-7. i don't have a choice in this. People tell me its not real but for me it is. Its a part of my life. a big one. My therapists tells me that i have had Shadow for 9 years. I grew up up in a double alcoholic for many years. My father worked in Boston and my mother was always drunk. " Its really true." I did whatever i wanted. i did not exist.
I started to get worse. Shadow has been getting on my nerves. I can wake up in the morning and i say out loud, " Today will be a good day." Sometimes it works and i have a good day. I want Shadow to leave but that really is not an option. Today my dads girlfriend tried to compare herself to me and told me that i could turn Shadow off. I said, " No i can't there is no off switch. i can't turn it off i don't have a choice." i say to her. She tried to fight with me.
" Gwenn You did this to yourself you can stop it. Shadow does not exist. it does not real." she says to me.
" No Your an alcoholic and you will always be. I will have Shadow or i will say i had Shadow for a part of my life. Don't tell me it does not exist cause your telling me that i don't exist. Take me home. " i say to her
Is anyone there? Is there someone like me? Please if there is is Please talk to me.
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Re: I'm out here/ Somatoform disorder

Postby twin2jlb » Tue Apr 19, 2016 8:44 pm

Hi Gwenn,

You are not alone. My heart goes out to you. I'm sorry for your struggles at such a young age.
My story is quite different from yours but I also have been looking for somebody who understands what I am talking about. In order to understand the whole story I need to explain...a lot...please bear with me. Unfortunately, I probably can't give you many answers but I hope I at least can lend an ear and give motherly advice. I, on the other hand, would greatly appreciate a young person's perspective because it is difficult for my daughter to articulate what she is going through.
I am a mother to two children and it is my 9-year-old daughter who has just been diagnosed with Somatoform Disorder. It's interesting because the children's hospital told me that it is very common in children yet I have had such a hard time finding anyone of my friends, family or co-workers who have even heard of it. I am well-educated and work as a pediatric occupational therapist (in a school setting). One of my old school acquaintances who is a pediatric OT in a hospital setting was familiar with somatoform disorder and she was the first one to mention the term to me while my daughter was hospitalized the second time.
My daughter began having pain in her joints in September of 2015. After a couple visits to her pediatrician he had her blood work done and she tested (high) positive for antinuclear antibodies (ANA)- this is a test to determine if she might possibly have an autoimmune disorder such as Rheumatoid Arthritis or Lupus. By the time she was finally referred to see a specialist (Rheumatologist) she had to be hospitalized. This is because she had strep in late November, and after taking antibiotics for a week she began having severe, debilitating joint pain, swelling, hives all over her body and some abnormal behavior. All of the specialists at the children's hospital could not tell us what was going on. She was tested for everything under the sun but still no answer. They got the symptoms to diminish somewhat and sent us home after 6 days.
After another week and a half, when I found that it was clear that my daughter's symptoms were not going away, I brought her back to see the original rheumatologist and she actually diagnosed her with Lupus and put her on some very strong medicines.
By February, my daughter had been on the meds for just over 2 months. Her skin issues had diminished by then but her pain stuck around. She had good days and she had bad days. She did better when distracted by friends, family or pets. Overall though, she was more anxious, emotional, and clingy than before and she was missing multiple days of school.
By late February she had such severe pain in her legs (from her hips to her toes) that she could not stand up and walk for days. When she started to complain of pain and weakness in her arms as well I took her back to see the rheumatologist. Again, my daughter was sent to the children's hospital.
This time around, none of the specialists at the hospital could find any medical reason for the pain. She saw teams of pediatricians, rheumatologists, neurologists, and psychiatrists. Her blood work no longer showed signs of inflammation and the rheumatologist declared to us adamantly that "she does NOT have lupus." We left the hospital with her new diagnosis of Somatoform Disorder.
With this said, we took her off all of the strong lupus medications and nervously waited to see if any signs of lupus popped back up.
That brings us to today (6 weeks later). Her blood work still has a few abnormalities, which her new pediatrician reports are not significantly out of the norm to mean anything. To be honest though, I still have lingering suspicions of an autoimmune disease that are hard to let go of. (But we will continue to monitor her blood work because I myself have an autoimmune thyroid disease). I don't let my daughter know of my concerns because I have been told this will worsen the somatoform disorder.
My daughter has good days and bad days but she still has days in which she complains of pain. I no longer ask her about it because I don't want to draw attention to it. She still misses one day of school per week on average. She complains of pain, fatigue, dizziness, stomachaches and nausea. She has instances in which she will hyperventilate (typically at night) and she continues to be a lot more clingy to me (separation anxiety). She is more emotional than usual and she has moments of sadness more often that before.
I should note that I filed for divorce from my husband in October, 2015 but never went through with it because our daughter got sick. He's not a bad man but he's selfish and quick to anger--he yells a lot (but has since really made an effort to calm it down for the sake of the kids).
I don't know if the familial conflict, the diagnosis of lupus, the hospitalizations or all of the above caused all of this....
Today (4/19/16) was one of those days in which my daughter could not walk due to severe pain in her legs. I had to drop her brother off at school, take her to her grandparents and get myself to an early meeting at work.
My daughter did put weight on her legs as I supported her from behind to walk to the car (because I was stern with her and made her do it) but once she got in and I looked at her she had tears streaming down her face and she cried to me that it was torture for her to walk. It broke my heart.
It is hard for me even as an educated adult (who works in healthcare) to wrap my mind around the idea of somatoform disorder yet I know it exists. It is even harder for people around us to understand. My poor daughter gets comments like "Cut it out- just get up and walk! Your'e making things hard on your mom!" I have found myself with that attitude at times but today just really drove home the point that this IS real!!! My daughter feels this pain and it frustrates and hurts her to know that there are people who think she is faking it or trying to get out of going to school. She loves school! She loves being active!
Right now I am reading a book by Dr. John E. Sarno, "The Mindbody Prescription: Healing the Body, Healing the Pain." If you have time to read anything extra please pick up a copy. I don't know if it will be especially relatable to my daughter and maybe not even specifically to you, but it gives a good description of some of the psychology and the science behind the pain caused by emotional distress or internal psychological conflict. I think every little piece of knowledge we can pick up will help in our understanding and hopefully our healing.
I wish you all the best. I will be thinking about you and sending positive thoughts your way.
Take care,
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