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Dystonia and Me: Coping with a Movement Disorder

Updated on April 21, 2015


Countdown, 30 days left!! My neuro says there is nothing else he can do for me! I must wait, bear with the pain, deal with new symptoms, COPE. My neuro says I have a mutant gene! So off to University of Virginia I go, human guinea pig I guess.

I do know this, I have Dystonia. I do not know the underlying hereditary condition responsible for it. Last summer on a family outing I was formally introduced to Dystonia. I didn't know the name yet but I experienced the power Dystonia could have over someone. After getting out of the pool one evening during a swim, my legs froze in a distorted, contorted like position. I have suffered from sleep paralysis in the past. But never had I experienced the loss of control during the day. Feeling so helpless I knew something was wrong. This was the catalyst to dozens of tests such as MRI's, EEG, and genetic testing. After an intial misdiagnosis of MS, I consulted with a new neuro who specializes in movement disorders. At this time I was formally introduced to Dystonia. Dystonia is a neurological movement that causes the body to have severe muscle spasms. These spasms often result in abnormal posturing and contortions. What started out like severe charley horses became painful, uncontrollable twisting of the affected limbs. I found out recently that my Dystonia is spreading to other limbs.

I began to research. What can I do to cope and relieve the painful spasms and stop dystonic storms? There are many wonderful people out there that have shared their tips in coping with dystonia. I decided to share them with you here.

Steps to Cope With Dystonia

1. Take your meds! It sounds so easy,but being compliant can be difficult for many people. As a mother of three and a pharmacy technician I need to be on my A game at all times. I found that my meds caused me to be fatigued and nauseous. My noncompliance resulted in a trip the E.R. Meds used to treat Dystonia such as Sinemet, Baclofen, and Dilantin can cause these side effects, but compliance is the key. I found out the hard way.

2.Gluten Free Diet. I have been gluten free since I was diagnosed. Gluten is a protein found in wheat, barley, rye and spelt. Not only can it affect those with celiac disease but those with neurological movement disorders and even asthmatics can benefit from eliminating it from your diet. Although it has been a hard adjustment, I have noticed a reduction in symptoms. I feel like I have made a positive change for my health. Lord knows I do long for a yummy piece of bread though!

3. Learn Sensory Tricks. I have experienced what is called a Dystonic Storm. It began with one limb painfully contorting and like a wave it spread to the adjacent limbs, trunk, arms and even my jaw. It was like an out of body experience. In this severe instance there was nothing I could do but wait and bear the brunt of the pain. In more localized instances one can try sensory tricks. Sometimes if you have touch the adjacent body part you can lessen spasticity. Those with writer's cramp( a form of dystonia) can massage the other hand for relief. In other cases a massage to the temple of back of head can be all one needs to alleviate the painful spasms.

4. Prayer and Meditation.Without prayer I would truly not be able to cope. The power of prayer can release tension and create an inner peace. In times of severe pain I have found prayer to really make it tolerable. Meditation can also relieve stress and help one ease into peaceful slumber. There are even relaxation/meditation tapes that can benefit those with Dystonia. Whatever route you choose, take time to relax your body and focus on your healing.

5.Spread Awareness. I have found people to be so understanding and encouraging. Although I feel embarrassed during the Dystonic manifestations, I have found that awareness is enlightenment. People still don't fully understand the condition, but maybe they may be a little more aware.

Well my countdown continues! I don't know what the future holds. I pray that God gives the doctor's wisdom. I am willing to be a guinea pig if it helps the future generations. For those who are battling Dystonia, keep your head up. Thanks to the dystonia community for getting me through nights filled with uncertainty. I hope my hub spreads awareness and encourages others.

God is Good!

Some good books!


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    • Tstitch profile image

      Tstitch 5 years ago from Spokane, Washington

      I'm hoping and praying. Terrie

    • indanila profile image

      Inda Blackwell 6 years ago from Hampton Roads

      Yes prayer has really helped me cope. Thanks for stopping by!!

    • poetryman6969 profile image

      poetryman6969 6 years ago

      it is good to hear that prayer helps. this is truly what faith was meant for.

    • profile image

      6 years ago

      Have you tried eliminating soy, dairy, eggs, and corn as well? People with gluten sensitivity often have other food sensitivities as well. You should do a full food panel test.

      The other things I find helpful: acupuncture, myofacial massage on a regular basis, chiropractic adjustments, and mineral + alternating temperature baths. Keeping my neck warm seems to be key. Scarf in summer.

    • profile image

      chris 7 years ago


      Have you been tested for magesium and zinc deficiency...?

      Also read the stories of hope on my site....



    • indanila profile image

      Inda Blackwell 8 years ago from Hampton Roads

      Thanks for stopping by my hub terrimak! Love your hubs!

    • profile image

      terrimak 8 years ago

      I hope you find more answers to the questions that you have. I believe in the power of prayer; the body's ability to heal itself. Keep strong in your convictions. Great hub.

    • profile image

      Your Sister 8 years ago

      I love you sister and will always be here for you. I know God will heal you. You are my inspiration.


    • indanila profile image

      Inda Blackwell 8 years ago from Hampton Roads

      Thanks for stopping by my hub DeBorrah K. Ogans! Love your hubs on marriage!! Such a blessing!!

    • DeBorrah K. Ogans profile image

      DeBorrah K Ogans 8 years ago


      I too have never heard of Dystonia. You are so right there is power in prayer and meditating on the Lord's Word. You have a very good optimistic perspective. I too will remember you in prayer. May the Lord continue to keep you.

      Thank you for sharing,


    • indanila profile image

      Inda Blackwell 8 years ago from Hampton Roads

      Thanks for your prayers DoodleLyn and Sherry!!

    • DoodleLyn profile image

      DoodleLyn 8 years ago from Upstate New York, USA

      Hi indanila - I have never heard of this condition. You sound very positive, and that certainly will help you cope. You are right, prayer does help. I will be praying for you, that you can cope with the pain, and for your healing.

    • profile image

      Sherry 8 years ago

      Always praying for you girl!!!

    • indanila profile image

      Inda Blackwell 8 years ago from Hampton Roads

      Thanks judydianne!

    • judydianne profile image

      judydianne 8 years ago from Palm Harbor, FL

      You will be in my prayers! Love and hugs....judydianne