Huntington Disease Lighthouse Families

For HD families ... by HD families
 

a few questions for All Hd positive people

Posted by sray1198 
a few questions for All Hd positive people
November 15, 2009 11:08PM
do any of you feel as though you have the flu?
ever since i feel like I have a mild case of the flu. it is 24 hours a day, sometimes worse and sometimes better. that was the first thing I noticed and has not stopped for 18 years.

I was wondering if anyone else felt it?
How many of you use a wheel chair.
I am just wondering.

everyone have a great day!!!!
Re: a few questions for All Hd positive people
November 16, 2009 07:51AM
I understand what you are talking about.
I have felt the same since it's started 5 years ago quite suddenly. Nearly overnight after a strong cold.
Now unable to run or work. I do swim, cycle or walk and a bit of yoga but I have to be careful not overdoing it.
Even though I am HD+, the doctors tell me this is not the way HD start.
This sounds more like CFS/ME/Fibromyalgia.
It would be insteresting to know as "sray1198" says if you recognise yourselves in these symptoms.

Thank you All. This is a great site.
Re: a few questions for All Hd positive people
November 16, 2009 11:48AM
Yes Spray that is exactly how I feel I thought I was the only one!
I feel like I always have the flu!
I am not in a weelchair.
I have had HD for maybe 7 or 8 years.
you have a nice day too!
Laura
Re: a few questions for All Hd positive people
November 16, 2009 12:45PM
Interesting - I recently sometimes feel just exhausted all the time. Last week or two just feeling very heavy legged? Not quite sure how to explain. I am non symptomatic. Sometimes walking up and down stairs is hard on my legs. Last Thursday needed to walk up real steep hill and had to stop. Never happened before.

What exactly are the fly symptoms you are feeling?

Thanks for bringing this up.

Stacy-NJ
Re: a few questions for All Hd positive people
November 16, 2009 04:15PM
I too wonder why everything wears me out? I am in the very beginning stages and I have to take naps throughout the day. Interesting. xoxo
Re: a few questions for All Hd positive people
November 16, 2009 04:51PM
some of my symptoms are

extreme fatigue
body aches
chills
allergies that range in severity
feeling even worse whenever I am exposed to any type of bug
trouble exercising because I am to tired but I force myself to walk
a few times a week

I went on a walk with pete after being sick and I had to stop too.

This is something my hd dr said to me many years ago too:
Even though I am HD+, the doctors tell me this is not the way HD start.
This sounds more like CFS/ME/Fibromyalgia.

Laura
Re: a few questions for All Hd positive people
November 16, 2009 06:11PM
silverlining --- I like your screen name no i just feel like I have a mild case of the flu, it varies though sometimes worse and sometimes very mild. but always there. Never goes away.

lauraandpete -- I was asking the HD doctors about it and they said that I should feel nothing. so I got curious about others and asked here.

Now I know that others feel it as well.
thanks
Re: a few questions for All Hd positive people
November 16, 2009 09:59PM
Well, i used to get the flu all the time, before hd. Since hd, 7 years ago, have not had the flu once, except for maybe a few hours, then it's gone. But the first 2 years i had hd, i was in constant pain. I was having very restless disturbed sleep, and i would wake up every morning, with muscles that were so sore, every day. But when i started the seroquel, no more disturbed sleep, and no more sore muscles. I sleep really good, and wake up feeling good, i'm never sick, and not in pain any more. So i have hd, and i feel really good now.
Re: a few questions for All Hd positive people
November 17, 2009 10:39AM
hello guys and gals,


I too feel like I have the flu a lot. I was shopping the other day and almost passed out, chest felt pressure, ears, headache all of a sudden, etc... I went to a E/N/T had some blood work done. It seems like I've all of sudden become alergic to almost everything. woo-hoo!!!! I still take naps, sometimes up to 3 a day, depending on how much stuff I have going on.

cheers,
Trey
Re: a few questions for All Hd positive people
November 19, 2009 06:17PM
Hey Trey, good to see you again smiling smiley Hey, naps are a good thing, i take them whenever i want lol smiling smiley
Sorry, only registered users may post in this forum.

Click here to login