Cervical Dystonia and Exhaustion - Dystonia Society

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Cervical Dystonia and Exhaustion

Rkai
Rkai

Cervical Dystonia and Exhaustion

Please can anyone tell me about their experience of exhaustion/rag doll days or patterns when this occurs. I have had CD for 9 years now and have had odd days when I feel drained. Recently I have felt this way for 5 days in a row. Occasionally during these days I regain a bit of energy but only for an hour or so. I have tried dietician advice but still it persists. Any comments would be so helpful. It affects everyday life as I can’t plan anything.

Thank you

Rkai

6 Replies
oldestnewest

Hey! Have you tried lectinfree diet?

Hey Rkai. Sorry about the exhaustion. I too get it when my symptoms are bad. It makes sense, the muscles are contracted resulting in you compensating for that abnormal contraction and that’s exhausting! We’re expending energy, both physical and mental, in “fighting” the contractions. Precious energy that we can’t spare to expend like this but have no choice. And the fact it’s chronic is where the struggle really stems from I think.

So yes I do get exhausted on worse days. I used to come home from work and lay in bed for and hr or two when it used to be really bad. Once it got better I was astonished at how much energy I had when I got home.

Good luck and hang in there :)

Rkai
Rkai in reply to TsnCep123

Thank you so much for your reply. I can’t tell you how helpful it is to me to hear for the first time someone actually confirm this could realistically be he reason why. I am very grateful to you and wonder if there are any others who have similar experience of exhaustion and have reached the same conclusion.

Hi

I too have CD and often have days at a time when I can't do anything as I have no energy at all, physically or mentally. I also get very tearful if I try to push myself at these times, which is very embarrassing as I am a very strong person.

The only solution seems to be to rest and sleep and learn to let everything go, which is not easy and very frustrating.

I guess we are dealing with a very complex condition on a daily basis which is very debilitating. There is also not much understanding of this condition or support available.

I know what you are going through and my thoughts are with you.

Love and Blessings x

Rkai
Rkai in reply to Peacelovelight

Words cannot describe how I felt when I read your message. I will always remember the moment I read it....I was in a very low place and because you illustrated so accurately and perfectly my own experience, to read that I am not making it up or being a hypochondriac was a gift for me.

No wonder your ‘name’ is Peacelovelight.

Thank you x

I totally get where your coming from & it’s dreadful in this day & age that we are treated like we are 🥜 nut cases ! I’ve just had a terrible experience at my local hospital & have had to put in a complaint unfortunately! People aswell as medical professionals have absolutely no idea what we have to face every day & it’s a total disgrace ! My last year has been nothing but a nightmare & im still waiting on the right treatment ! We all deserve so much better & every day I cry & want to give up because there’s no one really who emphathises - we just someone have to keep going & as you say it’s members on here like Peacelovelight that gives us hope for another day !! We are not crazy - we are just suffering terribly !!

Keep smiling & I wish you all the v best x

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