How many of you have had serious muscle/energy loss at one point after being diagnosed and what did you do to rebuild it and your overall energy?
Did it take much time?
I'm just looking for ways to get back to what was 'normal' before.
How many of you have had serious muscle/energy loss at one point after being diagnosed and what did you do to rebuild it and your overall energy?
Did it take much time?
I'm just looking for ways to get back to what was 'normal' before.
{ Thomas D }
Normal, huh? Well, that may be harder than we think depending on a number of things, not to say the least of which is WG. It took me about 6 mos to get back to normal things like walking, stretching, doing simple chores, etc. And nearly 2 years to get my 'form' back as a golfer. I've lost muscle mass which I'm not particularly interested in trying to restore, but I do stretch and lift repetitive weights to keep toned. Normal has been redefined...
Knowing how to think empowers you far beyond those who only know what to think. -NdT
Hi Thomas,
When I got out of the hospital after diagnosis, I had lost 25 pounds off a pretty slim frame. But, the pred kicked in, and I quickly regained the lost weight plus an extra 20. With the damage to my lungs, I now have a bit if exercise-induced asthma. That's put the kibosh on my preferred form of exercise - swimming.
I started walking for fitness about two months after release from hospital. At first, I had a hard time walking much more than 100 yards. However, I kept at it. I now walk 2-3 miles most days at a pace of about 17 minutes per mile. (It took about 3 months to get strong enough to make 3 miles.)
My wife and I recently joined the YMCA, and I'm meeting with a fitness coach to learn how to use some of the exercise machines to strengthen my abs and upper body. I'm ok with my weight - about 180 lbs (80 kg) - but want to lose the belly fat (and take 2-3" off my waistline).
The best advice I can give is to start slowly and gradually rebuild your strength. If you've been on high dose pred, it's important to stretch and warm up as your tendons and ligaments may be brittle and subject to tearing and straining. Also, keep hydrated so that lactic acid that builds up during exercise gets flushed out.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
Cheers for the responses. I was on high dose preg for a while and now i'm down to 7.5mg as of yesterday (yay!). I'm looking at starting to jog again and I'm just not sure if I'm starting to early - I don't want to rush it. I've only been out of the hospital for 2 months now and my joints still ache when out for long walks, not that the cold helps. I'll take note on stretching but I'm not sure about staying as hydrated as I use to with kidney failure I only have 1.5L of fluid / day.
{ Thomas D }
I used to work out with a trainer 3x a week, lifting and toning. I loved it. Then, I got sick. I'm slowly trying to get back into it. I worked out 2x, then went downhill again a bit, and now I went back today. Somehow I managed to do 100 squats today.
It's baby steps. I need to get back into walking every day. I will. I just can't push it.
Officially Diagnosed 07/31/2013
My blog: http://nikkinicolealison.com
"It's no use going back to yesterday because I was a different person then" - Alice in Wonderland
Thomas , you do need to take it slow at first and being out in the cold for long periods of time ( like running ) I don't think is such a great idea with your immune system being low, you are likely to get more sick. Is there something indoors you can do..tread mill? weight lifting? Like Nikki's signiture..There's no use going back to yesterday......you were a different person then and now with wg things will never be the same but you can be the best that you can...Good luck
Life isn't about how you survive the storm, but how to dance in the rain !
Then don't...I don't want to rush it.
Knowing how to think empowers you far beyond those who only know what to think. -NdT
I used to run 6-8 miles a day before wegs and all the other stuff. Now, walking to my mailbox a hundred yards away is a chore. Circling a mall a couple times spells the end my day. Normal is whatever you are able to make of it and, largely, depends on the severity of your case.
I really wish I could return to weekend 10k's and hash house rabbit trails, but those days are gone and I have to pursue other interests more compatible with my abilities.
Last edited by vdub; 11-27-2013 at 05:49 PM.
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
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Hi all, I have not been on for a while but have been peeking. Swimming is what lets me loose weight and stay flexible, on a good week I will go 3 times for an hour. Hot tub is close if I need it. I find the weightlessness helps to keep the pain away and I can enjoy the swimming exercises.
Jolanta
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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