Sarcastically Yours, Jen

Cervical Dystonia AKA Spasmodic Torticollis is a type of focal dystonia, a neurological condition that causes involuntary muscle contractions that lead to abnormal movements & posture. I Experience symptoms from the back of my head down my torso and now, unfortunately, my feet & hands.It’s the strangest feeling as if there is a huge weight on my shoulders, equivalent to when you carry a child on your shoulders to give them a piggyback ride. Like something is squeezing all my muscles from the middle of my skull down to my mid-back. The tremors, or twerking, as I call it, make you feel as if you have no control whatsoever of your body. My hands and feet are the most recent issue I’ve been dealing with they appear to be freezing. Shaking them is necessary to restore feeling. With cervical dystonia, I experience Hyperacusis which is basically sensory overload very easily. Everyday noise that normal people can block out are very frickin intense to me. Loud noises like obsessive lawn maintenance, revving of engines, all that unnecessary stuff that happens in the summertime. Send my body into distress or panic mode. Earbuds have made my life so much more peaceful & enjoyable.

*Symptom Of Dystonia*

• Abnormal head and neck positions or postures. 
• Involuntary movements, including twisting and jerky movements. 
• Tremors 
• Muscle spasms
• Pain did I say Pain!
• Limited range of motion in the neck. 
• Neck stiffness. 
• Visible bulges on one side of the neck. 

*The treatment options I have been given*

• The first resort, as with any ailment, seems to be pills. With dystonia, it’s muscle relaxers & pain pills. Which I do not care for either, as they can mess with your ability to do anything at all, period.
• Botox toxin injections:These are given roughly every three months . My experience with Botox was that it would help in the areas it was given and then make other areas weaker. I also had nodes under my skin from it that eventually dissolved, of course. Due to being so far from the city & not being able to drive most days. It didn’t seem like something I could keep up on on a regular basis.
• Deep brain stimulation: Can be an option for some people. I have not personally looked into that, as I have no interest in it.

There is really not much information on it. Been dealing with cervical dystonia twenty-plus years, and no real development has been made as to finding a cure or new treatments. It’s one of the most painful things I have ever experienced: your mind & body are not connected from the moment you wake till you go to sleep.

*These are some things that could have contributed to its development.*

With such an unpredictable illness & my other chronic illnesses. Sometimes I will be down for days or, shit, months when it’s nasty outside, as my muscles hurt. So yes, I have bursts of energy when I can move around with dystonia. Actually, scratch that. LOL, you know nothing but pain, so what is more pain? It seems to be when the weather is warmer, but believe you me. I am suffering with every move I make. Why did that phrase trigger the lyrics in my mind to the Every Breath You Take song? When I have energy, I turn into the Hulk for a moment as I push myself to exhaustion just so I can have a weed free garden or semi-clean house. Try to move fast & quickly before my energy dissipates, my neck starts jerking. Any type of unnecessary stress or overexertion can put me into an episode that brings tears to my eyes. I am a strong woman; I know this for a fact, but the very idea that I have to deal with this forever can send you into a full-blown sobbing session, particularly when I am dealing with the symptoms from PMDD. The thought of completely losing your independence is a tough pill to swallow. As I grow each and every day to accept I am disabled, I am more likely to ask for help.. With COVID, delivery has become a blessing as it makes it so much easier for us disabled people.

Lol, So yes, the phrase I have heard over and over. (She has something wrong with her ) from cruel people that don’t know how to use their words appropriately or just mind their own dang business. Is my Reality & Guess what I make it look good! Yes, I have something wrong with me. Which is the truth, but aren’t we all dealing with something in this life? If anyone ever has questions, I have no issues explaining it. That is the only way to educate others about rare disorders like this is. To share my experiences, as painful as it is. If you have chronic pain,please share with me below. What gets you through your darkest moments? I love chatting with my fellow spoonies!