Today is May 8th. It’s Dystonia Awareness Day. I spent eight hours this week in the ER because of an overly aggressive PT appointment. The therapist had never heard of Dystonia. She was willing to help, but, she didn’t understand how my body would react to anything other than a light touch. It reacted by going into crushing spasms in my chest. My pinkie and ring finger felt painfully numb and at times felt like someone was twisting and pulling them backwards. My arms ached like someone who had overworked at the gym from lifting too much weight. And worse of all, came a mind-blowing migraine. I lost my ability to speak and see. I had to get a painful nerve block from the headache doctor. Most of the migraine subsided, however, the chest pain was too much to endure. I felt nausea, dizziness and was having hot sweaty and clammy skin. I decided I had to go to the ER. This was pointless because the medical staff had never heard of Dystonia. They decided I should be checked for a heart problem. I knew it wasn’t my heart. So I laid there for six hours while they did their tests. Everything was within normal limits. Conclusion: Muscle spasm.
There is no awareness in the medical profession for Dystonia. Because of that, people with Dystonia can’t go just anywhere for medical treatment. We need our Dystonia specialist. But they too are limited in what they can do. They treat the symptoms, that’s all.
In the hospital they have no idea what to do except to say, ” Try this medication and see if it helps.” It is a problem for me because too many medications cause adverse dystonic reactions. The last one I had left me shaking for three months. Not only is Dystonia exhaustingly painful, it has no real medical treatment or cure. People with Dystonia suffer greatly. Most are invisible because they are confined to home shrouded in agony and loneliness. Imagine feeling like an invisible force was twisting, pulling and contorting your muscles while sending electrical charges through your nervous system. This is my Dystonia. We need compassion, support and assistance.
Dystonia can hit anyone at anytime. Mine is the result of brain and neck injury.
Today I am raising my voice in an effort to make people understand that this is a heartbreakingly disabiling neurological condition.
People with Dystonia have strength beyond what most deem intolerable. Please do what you can to render aid to someone with Dystonia today. For more information :https://www.dystonia-foundation.org/
Reblogged this on bria varner and commented:
I’ve only seen one case of dystonia professionally… and only watched the treatment, not been on the case myself. It makes my heart ache just watching this person move… and move… and move. In this case, from what I’ve seen, the person’s independence has been taken from them. They can’t go out without hanging onto someone else for support. Assistive devices seem out of the question, because the devices become more like weapons in this person’s hands. But people have to take turns walking with this person, or at least they do in the clinic, because the movements are so severe that the guiding person gets a workout trying to keep themselves and the patient upright. Anyone out there have experience with dystonia, personal or professional?
Big hugs! I just read this entry! I too have dystonia , mine is part of CMT, Charcot Marie Tooth disease , or at least my neurologist thinks so, I haven’t found other people with CMT that have dystonia symptoms too to discuss this with them . I have had symptoms since I was a child, the twisting in my legs and then later in my arms , legs , hands , feet, trunk, chest ( what you described as a heart attack I can relate with ) and lower abdomen. I have had some good response to senemet ( levadopa carbadopa , some help, but have to be careful not to get over tired , over dehydrated , over worked out ect, never know when what is going to trigger it . your post hit everything on the head of the various feelings I experience.
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Thank for your response. I’m so sorry you suffer too. There are some great support groups online. A lot on Facebook. You’re not alone fellow warrior!
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