Exercise.: We are often asked about... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Exercise.

Suzypawz profile image
9 Replies

We are often asked about exercise & do we benifit from it at all or does it/would it make us worse?........

My answer is:

I'm one of the ones that will say exercise is a very good thing mentally & physically.

When I was 1st got diagnosed 11 years ago I was in sooooo much pain I couldn't get off sofa :(

I fought this for about a year & now I am reasonably active with bad days....... but hey the alternative was not an option for me! :0

If I have around 3 weeks off from exercise I start to regress to how I was in the beginning! so it must be doing something?

I have tried yoga...but I found my balance was awful! plus my arms would shake & tremble & wouldn't hold me when trying to balance on them...let alone the legs!! :/

I tried zumba...but my feet wouldn't keep up on bad days!!.... but it is good & you can tap out the hard parts & still keep up. :)

I use the machines mainly & do sit ups etc at my gym, also swimming.....(with the treat of a chacuzzi after!! :) ) normally around 20 mins - an hour, 2 - 3 times a week.

I find it helps mentally & physically with this illness & I will continue as long as I'm possible to & would advise others to do the same if they are able, even if it's just a little...or even just swimming. :)

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Suzypawz profile image
Suzypawz
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9 Replies
paddyandlin profile image
paddyandlin

That is strange I find if I do active excessive it makes things worse but if I do more fun activity like wheelchair dancing I find I do it slightly easier because its fun so I do agree on that you have to like and enjoy what you do

Kentish_Man profile image
Kentish_Man

I think that like a of of things in life it has to be in moderation to be a benefit. If I push myself too hard then I will suffer for days afterwards. You have to know your own body and your personal limitations for it to be any sort of benefit.

MaryF profile image
MaryFAdministrator

I have not done any for nearly four weeks, which is awful for me, as I normally try and do some every day, but one flare after another plus other health issues and poorly kids, has had it grind to a halt.. I notice I am more stiff and more tired, I hope to start again next week, as my healthy diet and exercise have been in place my entire adult life! Mary F x

Manofmendip profile image
Manofmendip

I continue to do my cycling, every weekend if I can, and if I miss a week I start to feel my fitness levels dropping and if I miss two weeks I get a nagging feeling in my legs as the muscle tone goes.

I used to be a racing cyclist but I just ride for pleasure now, out in the countryside, anywhere between 25 & 100 miles in a day, preferably with a pub for lunch.

Best wishes.

Dave

MaryF profile image
MaryFAdministrator

Only if we can have a live video link with full unedited version of your running commentary.. no beeps edited in! Mary F x

MaryF profile image
MaryFAdministrator

I see! MF x

Suzypawz profile image
Suzypawz

Thats what I always say...you have to enjoy it too to get the full benifit out of it.....

I sometimes feel I've pushed myself too hard & suffer later, But without the exercise I do I suffer more....so thats how I weigh my options up?

Everyone is different & what is good for one may not be for another, but I also feel the routine of going helps too.......I feel without it I may get stuck in a rutt & not bother?! & I don't want that :(

Having a goal at the end of it is also very good :) I can agree big time with that....mine is a Costa coffee!! :)

The new bike inventions sound like a great way to cycle & be part of it all.....wow I want one :)

Waiting for the link for the on line you tube video of it all too :)

Just a little exercise is good I reckon....we dont have to over do it....not that I could anyway!!!!!

xx <3 xx

Suzypawz profile image
Suzypawz

Yep had similar experiences!

My head doesn't always think quick enough for my feet before I realise theres a step coming......or not! .....as it's actually just a rim or edge....but to me looked like a step & tricked me!!! :) crafty peices of slabs catching me out!! :)

Same as doorways seem further away at times or I start to veer off & bump into them!!

Even if I'm on my own I laugh!

I'm sure I'll be labelled soon the 'crazy woman of Burton On Trent!!!!'

I know what you mean about wanting people to be there for you but at the same time not be................

Knowing you have support to laugh at it with someone else....not be laughed at........

To make these often episodes to be more light hearted rather than an embarrasment.................

That's why these sites are so important....even if we are not together when these things happen.....we know now that our family of Hughies will understand us if no one else will! :) xx

Suzypawz profile image
Suzypawz

Hugs huns :) xx

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