Somatization Disorder and Autonomic Dysreflexia

So, I have to apologize for the previous post that may have put you on pins and needles to find out my diagnosis. I really did mean to post the very next day, but then my computer wouldn't turn on.... still won't, using the 6 year old laptop... and I felt like I needed a lot of time to do it justice.

After years of waiting, and throngs of doctors, the wait is over. I know what I have, and I know what I need to do. What I have is real, and this fits. It' just fits, and I will be able to overcome it. The going may be slow, but at least it's going! One of the things that is causing my dizziness and balance problems is called Autonomic Dysreflexia (AD). My autonomic nervous system isn't responding as it should when I move positions, like stand or sit up, turn around, etc. Your heart rate is supposed to spike so that you get enough blood and oxygen to your brain, but mine doesn't do that as well as it should. This can be improved through a therapy called biofeedback which I will start later this month.

Somatization Disorder (Click on the link for references and more info)

Somatization disorder

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Somatization disorder is a long-term (chronic) condition in which a person has physical symptoms that involve more than one part of the body, but no physical cause can be found.

The pain and other symptoms people with this disorder feel are real, and are not created or faked on purpose (malingering).

Causes

The disorder usually begins before age 30 and occurs more often in women than in men. The disorder is more common in people with irritable bowel syndrome and chronic pain.

In the past, this disorder was thought to be related to emotional stress. The pain was dismissed as being "all in their head."

However, patients who have a somatization disorder seem to experience pain or other symptoms in a way that increases the level of pain. Pain and worry create a cycle that is hard to break.

As researchers study the connections between the brain and body, there is more evidence that emotional well-being affects the way in which people perceive pain and other symptoms.

Symptoms

People with this disorder have many physical complaints that last for years. Most often, the complaints involve chronic pain and problems with the digestive system, nervous system, and reproductive system.

The symptoms often interfere with work and relationships, and lead to many visits to different health care providers.

Stress often worsens the symptoms.

Some of the many symptoms that can occur with somatization disorder include:

• Abdominal pain
• Amnesia
• Back pain
• Bloating
• Chest pain
• Diarrhea
• Difficulty swallowing
• Dizziness
• Headaches
• Impotence
• Joint pain
• Nausea and sometimes vomiting
• Pain during intercourse
• Pain during urination
• Painful menstruation 
• Pain in the legs or arms
• Palpitations
• Paralysis or muscle weakness
• Shortness of breath
• Vision changes

Exams and Tests

A thorough physical examination and diagnostic tests are performed to identify physical causes. The types of tests that are done depend on what symptoms you have.

A psychological evaluation is performed to identify related disorders.

If, after you have a thorough evaluation, no physical cause is found to explain the symptoms, somatization disorder may be diagnosed.

Treatment

The goal of treatment is to help you learn to control your symptoms.

Having a supportive relationship with a health care provider is the most important part of treatment.

• You should have only one primary care provider, to avoid having too many tests and procedures.
• Schedule regular appointments to review your symptoms and how you are coping. The health care provider should explain any test results.

Finding a mental health provider who has experience treating somatization disorders with talk therapy (psychotherapy) can be helpful. Cognitive behavioral therapy (CBT), a kind of talk therapy, can help you deal with your pain. During therapy, you will learn:

• To recognize what seems to make the pain worse
• To develop methods of coping with the symptoms
• To keep yourself more active, even if you still have pain

If you have depression or an anxiety disorder, it may respond to antidepressant medications.

You should not be told that your symptoms are imaginary. Many health care providers now recognize that real physical symptoms can result from psychological stress.

This disorder fits me. I have dealt with not all, but 16 of the above symptoms listed for years. It isn't easy to come to the conclusion that I can learn to control this mentally, and some of my unfounded fears are that I've caused this for myself, or that people might judge me or not believe that it is real or think that it isn't as difficult to bear as some other problems. But I also know that I shouldn't be concerned with what other people are thinking about my own health. That certainly won't help me get any healthier. I haven't caused this. Perhaps anyone who has been through what I have been through might develop this condition as well. Here is a pretty detailed list of my last 8 medical years.

• Mononucleosis/Epstein Bar Virus for 2 years
• Subsequent Hypothyroidism 
• Severe Tonsillitis and then a Tonsillectomy 
• 2 Miscarriages, reproductive issues and pain
• See THIS post for more details about the above challenges
• Weakened Immune System
• Insomnia and difficulties sleeping
• Inability to fall asleep quickly or to sleep soundly
• 12 Urinary Tract Infections
• Chronic Headaches
• Chronic Fatigue
• Frequent Sinus Infections and Headaches
• Lactose Intolerance
• Severe dizziness
• Chronic joint pain and muscle pain and weakness
• Consistently Ineffective (and very expensive) physical therapy
• Anxiety and stress
• Irritable Bowel Syndrome (IBS)
• Chronic Digestive Issues which cause serious pain and discomfort - so much so that there have been times I have been afraid of food because of what it has done to me
• 2 colonoscopies
• Undesired weight loss (sometimes even up to 20 lbs in a few short months of digestive problems)
• Other issues that I don't feel comfortable sharing
• Constant doctor's appointments (some of whom have treated me as if I'm a number, like I'm not even a person, like I don't know anything about my own body - who often just prescribe me yet another expensive drug disregarding the harmful and painful side effects that come with it, many of whom have given me no hope and tell me to just accept that I will be sick and tired and in pain for the rest of my life)
• 10 minor surgeries - 3 unsuccessful which have caused serious consequences (usually in the form of pain)
• Inability to run (or do any rigorous activity) because of knee problems and muscle weakness
• Severe skin rashes lasting 3 weeks to 2 months
• Very difficult pregnancy and birth, major tearing (40 stiches) 
• $45,000+ in medical bills (that's what we've paid after insurance - it's really true)

Now, although it might all seem overwhelming, but I have highlighted those things that I will be able to improve or even eliminate, which is wonderful to think about. I am going to start 4 therapies that will help me on my road to recovery. I will start Cognitive Behavioral Therapy soon to help me deal with emotions and stress and anxiety, and even this week I am starting physical therapy. I will hopefully begin with aquatic PT to help me to ease back into more physical activity and help me work through muscle and joint pain without overstretching my limits.

I am full of hope. I am thrilled to think that in the future I will be able to walk a long ways, run, jump, spin, dance, ride a bike, play sports, have more children, etc. I thank the Lord for this blessing, and for all of His help. I can overcome this through the power of the Atonement and God's help.

Now if you are wondering, as many have asked me, "How can I help?" Well you can help. Wherever you are, you could pray for me. That always helps, and thank you to all who have and do pray for me.

And if you live close and it won't put more difficulty into your life, you could help by babysitting John for an hour or two during the day so that I can go to PT or practice PT exercises at home so that I can get stronger and healthier.

I could also use help with some household chores. Seth is immensely helpful and does so much to help, but it would be such a blessing for the health of us both for him to help me to relax and learn to rest and work through some of the emotional challenges of all of this.

So there it is folks. I am going to need to simplify my life and do less because it will help me more, blogging might need to be phased out for a while. So if I'm not posting you can know that I'm working on getting better.

Because, every day in every way I'm getting better and better!