Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

No Spasms The Same

Today’s post was going to be a general overview of the different subtypes of Dystonia. However as I’m more spasmy than usual this one will just be a quick look at how each day presents differently.

One of the complications of Dystonia is that even within the same type of Dystonia symptoms can dramatically differ from patient to patient, hour to hour. This results in making treatment of the condition especially complicated as there is no one hard and fast rule of treatment that works for everyone. What one person responds to may worsen another patient. 

My body at the moment is a perfect example of this. When I was admitted to hospital on Sunday it was mainly my jaw spasming; which whilst not ideal is manageable. However for the last 24 hours my eyes, neck and back have all joined in, resulting in an increase in painful spasms leaving me struggling to independently remain upright and experiencing frequent dislocations.

Today’s most frequent spasms

 This is when awareness of the condition becomes key. In hospitals it’s not unusual to see a different doctor each day, but this isn’t always a good thing.  Yesterday’s doctor was extremely understanding of my situation and left me feeling upbeat, todays doctor left me gobsmacked after informing me that he just couldn’t understand why experiencing extreme spasms and dislocations is painful. It’s frustrating having to battle daily for appropiate pain relief and treatment but sadly this is the reality for many sufferers of the condition.

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