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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

No, it's Not Anxiety, Panic Attacks or Depression


by Brenda Richardson
January 2006

I was diagnosed with Fibromyalgia in my early twenties. I learned to live with the pain along with the chronic fatigue. It was not very easy though, as I was a very active person and did not like having to learn to slow down. I had to take many breaks on bad days to keep myself rejuvenated. In this way, I could do more in the long run. I lived this way for about 15 years, and then things changed quickly.

I own a cleaning company and suddenly found it hard to hold my arms up while cleaning. They would tire very quickly. Sometimes I would push myself and try to keep going, and then my arms would cramp up. I would have to stop doing whatever activity I was doing.

I went to the doctor, but all the ran tests were negative. I was told to go home and take vitamins.

I was big into exercising, and I would find it hard to do my exercises. My legs became weaker. I was very frustrated and went to doctors for this. The doctors said it was just chronic fatigue. This upset me, as I knew I was not tired. I had a lot of energy, I just could not make my body work and every little thing became a chore to do. What normally was no big deal, like my house work, turned into a major ordeal for me.

I was very sensitive to noises and smells as well. Bright lights bothered me, and I felt like I was going to pass out when I would bend over and then stand up. I stumbled around like I was drunk, and I had slurred speech at times. I also felt like I had dementia or something of that nature, as I would have short-term memory loss.

I found myself getting very irritated. I had mood swings and went from happy-go-lucky to frustrated without knowing why. Maybe it was due to my body not working correctly.

I went back to my doctor and was told it was because I was anxious. I was told I had anxiety and chronic fatigue, along with depression. I was mad. I was not depressed.

I was determined to find out why I was weak and get it fixed so I could go back to my normal life. I searched for the right doctor to help, but could not find one who knew what was going on with me. I looked for about 2 years. Then my health started crashing fast. I was having trouble just getting up and dressing. I was totally exhausted after showering. I was so weak it took a lot of energy just to eat.

Doctors still did not know what was going on, and my health just kept going down hill. I was so weak I lived most of my life in a reclining chair on good days and in bed on bad ones. If I tried to walk I would collapse.

I finally found a Neurologist who did the tilt table test on me. I was then diagnosed with POTS. My heart rate went to 180 just standing, my blood pressure took off to 156/90 and then crashed fast. This is what caused me to collapse.

I was put on a beta blocker to help lower my heart rate and also told to wear compression socks to help with the passing out. I still had weakness in my muscles and joints.

I noticed I would get very sick on certain foods, such as sugars, breads and cereals. I then found out I have celiac disease, which means I am gluten intolerant. I had to go on a gluten free diet. This has helped me a lot, although I still suffer with muscle weakness and injuries to my ligaments and I have severe muscle cramping and shooting pains. I have trouble climbing stairs as well, and have difficulty holding my arms out. I am also off balance and have a hard time walking too far.

I have good days and bad, but I do have to say that with my diet change, beta blocker and compression socks I am no longer stuck in bed or my recliner all day. As for my muscles and ligaments, I am still awaiting a diagnosis as to what is going on. I am out doctor shopping again, hoping one will be able to give me answers.

It’s unfortunate that some of us have to go through many doctors and hear it’s depression or anxiety. If you are relating to any of this, I do hope you stay strong emotionally and keep pushing to find the right doctor to give you answers. We all get frustrated and depression can happen, although with most of us it is situational. We have depression because our health has changed.

It’s touch and go through a health change, and I know we could not go through it all alone. I am thankful for the support groups that are available and also for the medications. I feel that if antidepressants and pain medications can help than people should take them. It’s not worth suffering through this without help, be it medical, physical or emotional.

Always remember, you know your body best. There is hope! I am not back to normal, and that’s okay. I have learned to do many different hobbies I would of never picked up had I been healthy. A change in life can be hard, but at the same time it can be a blessing. I feel God has slowed my life down to enjoy the important things in life!

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