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TOPIC: Help exhaustion is ruining in my life

Help exhaustion is ruining in my life 2 years 8 months ago #3596

Hello. I've had secondary dystonia, pretty generalized - axial , cervical etc

i got dystonia in 2007 from suffering a brain injury being hit by a car.

for the last year - the pain is nothing compared to the exhaustion. I have never been a person who gets tired. everyday it's like waking up with nothing.

i've been told by two really sweet doctors that i should stop being so stubborn and go on true pain medication. I was with a pain medication doctor for awhile but i was to stubborn to take the medication.

At this point i have looked for every cause and effect there is and the only thing i am left with is my body being the reason for this utter awful life of exhaustion. Not to be dramatic. But it makes things so much harder to deal with. I've never been empathetic to myself and my condition.

I have divorced myself so intensely from my body i've broken ribs and not noticed. My pain threshold is insane.

But i've been told by many people that the exhaustion is from the dystonia. which i know is obvious.

But at this point i feel i have no recourse but to try pain medication. I know many people are against this. But at this point i will do anything to be awake and not want to go to bd at 4 in the afternoon.

I've never gone to bed before 2 am in my life.

ARE THERE OTHER PEOPLE WHO EXPERIENCE THIS?

ONE THING I'VE LEARNED THAT WITH DYSTONIA YOU LIVE A LIFE THAT IS UTTERLY ALONE. IT'S GOTTEN TO THE POINT WHERE IT'S NOT EVEN WORTH TELLING ANYONE ANYMORE.

HAVE OTHERS TRIED PAIN MEDICATION - OF COURSE FOR PAIN - MY PAIN IS OFF THE CHART EVEN THOUGH I AM IN DENIAL BUT EVERYONE AROUND ME TELLS ME

AND IF YOU HAVE - HAVE CERTAIN ONES HELPED?

I AM TALKING ABOUT NARCOTIC MEDICATION. No dysotnia medications do anything for me. Neuron tin does nothing. It's either narcotic pain medication or live with what seems like a life that really has benefits that i can no longer see.

Sometimes the isolation / loneliness is overwhelming. I used to go to a bar close by at least twice a week. Now i got maybe once a month. and i have to mentally prepare myself just for that.

thank you everyone

I have not had DBS. I've never considered it because it seems to do nothing for secondary dystonia.
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Help exhaustion is ruining in my life 1 month 3 weeks ago #4182

  • claire35
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Hello Rumblefish
How are things with you these days. Did you find any relief for your symptoms?
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Help exhaustion is ruining in my life 1 month 1 week ago #4183

  • Cat
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Sorry to hear you are struggling. I did a pain management course at a London hospital, also botox helps me. Plus relaxation and wheat bag in microwave. I don't have any suggestions to help with fatigue except pacing and usual healthy lifestyle options seem worthwhile doing. Let us know how you get on. Take care. Cat
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