Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Exercise


  • Please log in to reply
15 replies to this topic

#1 tintin

tintin

    Senior Bronze Member

  • Members
  • PipPipPip
  • 40 posts
  • Location:New York

Posted 22 May 2008 - 05:25 PM

Once or twice a week I have a day that involves a lot of running around. Basically a day I would not have thought twice about a year and a half ago. I usually feel fine on the day I am doing the running around, however I can hardly move for the next two days.

It seems to me that if I don't get some exercise, I will just slide down hill. However, on the other hand a modest amount of exercise seems to wipe me out. I really want to rock climb, kayak and do all the things I was doing two years ago. Ok, I am digressing into wishful thinking.

If I ask the general question "is exercise good?", I will get the standard answer "yes". But if I feel rotten after, is it still good for me. How much can or should I do? When is it good for me, and when is it bad? What about during a flareup? :unsure:
keep on smiling

crawler

#2 omaeva

omaeva

    Silver Member

  • Members
  • PipPipPipPip
  • 161 posts
  • Location:CA

Posted 22 May 2008 - 08:35 PM

I love to work out. I feel it helps me with fatigue, but you need to be careful and not push yourself. Sometimes when I am doing too much, for too long I just crash and it takes me a really long time to recover. Yet if I don't work out at all, I get more tired and weak and feel generally sick. I guess like all things it's about the balance.

#3 Susannah

Susannah

    Senior Bronze Member

  • Members
  • PipPipPip
  • 68 posts
  • Location:Blenheim, New Zealand

Posted 23 May 2008 - 01:32 AM

I used to push my self in more ways than just excercise and truly believe this has played a huge part in my becoming ill. Now days I am learning to listen to my body and it is working. Im learning to give up the 'shoulds' and 'should nots' and just do whatever I feel at that given moment, which ultimately adds to the peace and rest in my body and is very healing. I have never felt better (since becoming ill that is - hehe). So yeah, as Omaeva said, Balance is the key. There is no magic fomula, just what is right and works for you. Ive come to Accept that I can no longer do what I used to do prior to this illness and that was alot. Ive skydived, biked mega miles, triathlons, gym work, swam, tramping , gardening (oh how I miss the garden! ) just heaps of stuff. Now somedays I settle for a walk down the driveway to collect the mail or a few jobs spread out over the week in town, its just Reality! I hope I dont sound harsh, I certainly dont mean to, this just comes from my own hard experiences and would dearly love to save others from going through the same.
Thats my 2 cents worth anyway. I hope it helps alittle :rolleyes:
Hugs
Susannah x

#4 epasen

epasen

    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 23 May 2008 - 03:15 AM

The answer should be simple "yes" but with sclero nothing is simple.. But if it feels bad afterwards, the simple answer is no. Exercising is suppose to do good and not to feel bad. It's hard to let go all the thing you was able to do once and just admit that you're not able to do them anymore. If I'd have to give up dancing I don't know what I'd do.

Take care,
Emmi

#5 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 23 May 2008 - 08:51 AM

Crawler,
Ditto on everything that has been said. My cardiologist told me that I would probably not be throwing 45 pounds on my back anymore and climbing mountains, but she would help to get me to the point where I could go for an "easy" hike. So she started cardio rehab a few weeks ago and it has helped me to slowly, slowly, slowly build up my endurance without suffering the next day.

On day one, the tech had me start on 3 different machines (treadmill, recliner bike and arm rotating thingy). I only did about about 3 to 5 minutes on each. She kept asking "is it easy?" The moment I said "It's starting to getting harder" she had me stop. That time and speed became my exercise program for that week. Each week we add ONE minute to each machine. We don't add speed or resistance. I started off only able to do 15 minutes total. I'm now up to 27 minutes. I'm not at all sore or tired the next day. So from my experience I have learned that I need to take it slow and build up the time slowly. Speed is not important.

Last Friday I went to one of those food warehouses by myself for the first time in a long time. When I got home I even unloaded the car! When my hubby got home, he was shocked. I was not sore the next day so the rehab certainly seems to be working.

Take it easy Darlin'
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 tintin

tintin

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 40 posts
  • Location:New York

Posted 23 May 2008 - 09:46 AM

I guess I just need to limit myself to a certain amount of time and then see how I am the next day. I find that very hard to do as I have so many demands on my time. Actually, I think it is impossible, I just have too many things that no one else can do. I can't ask my sister with MS, or my Brother with Rheumatoid arthritis, or my 79 year old mother for help.

I also can't help thinking that I better get the new roof done, and the sea wall built before I don't have the stamina to supervise these projects. I'm a bit of a lemming running towards the cliff.
keep on smiling

crawler

#7 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 23 May 2008 - 12:59 PM

Yes,



Exercise is good, but you need to listen to you body. My rheumatologist really encourages exercise, but states I can't do it like I used to. I played around with several routines until I found something that worked for me. AND that changes at times, like I said you really need to listen to your body. Right now I try to walk on the treadmill and do a bit of upper body strength training every other day. Sometimes I can't do that either.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 YFChoice

YFChoice

    Senior Bronze Member

  • Members
  • PipPipPip
  • 36 posts

Posted 23 May 2008 - 04:14 PM

Exercise is definitely good for you. Besides the "use it or lose it" aspect, there is also the exercise "high" you can get from endorphins that are released when you do work out. Of course, you have to listen to your body and know what you're capable of and what you're not. But don't be afraid to push yourself.

I've had scleroderma for 26 years and I know that it is my love of sports and exercise that has kept me going. Even though, as a cyclist, I used to be able to ride 100 mile rides (even with scleroderma) I now limit my rides to less than 40. I still snowshoe and ski in the winter (even with a lung function in the 70's). I hike in the summers. I use weights as often as 3-4 times a week though not as heavy as I used to. I work in my garden and I have a job as a massage therapist. Here's the big thing.........I'm not married to a routine. I work out as I feel for that day. I know when to rest.....completely. I know that if I snowshoe for 5 hours, I'll need 2 days to rest. I'm prepared for that and make my day's plans accordingly. Sometimes I take some time off. But I also am aware that if I don't exercise, I hurt twice as bad, feel twice as sluggish, feel twice as down than when I do. Somedays I just walk.......but that counts too. I've even done water aerobics.

I don't recommend my regimen to everyone. I know it works for me. Remember, exercise isn't just weights and reps.......it's walking around the block....it's working in the garden, lifting dirt and pulling weeds...it's chasing down a toddler all day........it's movement that gets the heart pumping and the body moving.

People ask me what will I do when I can't ride a bike anymore. I tell them I'm going to get one of those adult tricycles with the basket and bell....I'm going to get on that thing and ride!.
~ You have to think anyway.....you might as well think big

#9 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 23 May 2008 - 10:00 PM

Hi, Choice.

Your post reminds me of advice I received at a neonatal clinic years ago - someone asked if they could continue horseback riding while pregnant. The doctor said, yes, by all means, if your body is used to horseback riding, continue to ride. But this is not the time to START horseback riding. So much matters on your original conditioning. Some, like Janey, may have an overlap of polymyositis which completely changes the way you must look at exercise. I agree with all who say that you must listen to your body. It is so easy to want to jump in with a big start to kick off a newly started exercise regime which is, ironically, the thing that stops many newly started regimes in their tracks. If you have been sedentary for any length of time, take it VERY slowly. But do try to move in as many ways as you can. Studies have shown that several small bits of activity throughout the day can be nearly as effective as 20 minutes of continuous aerobic activity. Moving is better than not moving.

When I still lived in the states, there was an exercise channel on cable - one of the shows was chair exercises for people who were unable to get up and do the regular routine. My kids used to laugh at it, but I remember some of those exercises and do them now: gentle toe and foot movements, hand and arm movements that keep you flexible. When I stand in the kitchen preparing food, I do my old ballet stretches. Anything is better than nothing.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#10 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 24 May 2008 - 01:37 AM

I work out three times a week. Lately I have been doing Zumba arobics and if it gets too much for me I stop. Then I go and work out on the circuit. That is what I usally do anyways. But iexercising helps you with your heart, lungs and your well being. Plus it strenthens up your muscles. My muscle strength is better now than two years ago. But then I had to start all over this past Jan/Feb/ but really didn't get it going until March. I had to stop because of my left arm. I tried going and only using my right arm but that only last for awhile, and when I started getting thos injections I completely stop. So the answer to your question is yes exercise is good for you in moderation. Sam
Sam

#11 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 24 May 2008 - 04:24 AM

Hi Everyone,

This exercise thread is interesting since I just purchased a video game for Gareth.....stimulating our economy!!! I hope he is able to use the sports games. He's put on 20#s since starting the Depakote in Feb. for seizures. We're looking to change the Depakote to Topamax and try to stop the weight gain. I will keep you posted if he does OK.

Take care, Everyone.
Margaret

#12 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 24 May 2008 - 06:19 AM

I do Tai Chi when I first get up which helps with some of my stiffness and gets me moving much easier, I do it for about 15 -20 mins and then at the end of the day I do another session before going to bed. I find it helps with breathing and also my movements. I always try to either walk or Cycle each day, but only the better weather - the cold affects me to much so in the winter I try to use the cross trainer. There are some days when I cannot do anything because I'm simply to tired. I do like to swim but find all the pools far to cold for me & it then triggers my Raynaud's off, so still on the hunt for warm swimming pool!

I think it's about listening to what your body tells you and just keep doing that bit.

Jensue

#13 Bunky

Bunky

    Senior Bronze Member

  • Members
  • PipPipPip
  • 73 posts
  • Location:California Wine Country

Posted 24 May 2008 - 12:21 PM

My doctor has me walking 40 minutes a day 5 days a week, which most days are very doable, plus my dogs like it, but some days or weeks my fatigue level is too much, and I know I can't do it. I am working up to jogging, and then hoping to start running again. I've been asked to coach track next year, so I want to be able to run with the kids, not just to tell them what to do, but to show them. I have nine months to get to that place, so wish me luck! I'm determined that I can still do all the things I want to, with moderation and balance. Of course, with this disease I will probably get knocked flat on my rear more than once, but if I keep on trying, I'll get there eventually. OK so that means get off this computer and go on my walk/run.

Bunky

#14 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 24 May 2008 - 01:59 PM

Ok Bunky

I wish you tons of good luck!! Go Bunky go!! :)
Sending good wishes your way!

#15 PrincessB

PrincessB

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Strasbourg, France

Posted 25 May 2008 - 08:52 PM

I really agree with the 'use it or lose it' idea, after I'd been in hospital and then recuperating, so about 3 months off from exercise, I really noticed how hard everything was, and am only just getting back to the level of fitness I had before I went into hospital (nearly a year later). I can strongly recommend yoga, but if that doesn't appeal take the time to STRETCH after you've exercised!!! It's so important.
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#16 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 29 May 2008 - 08:13 AM

I agree with the "Balance" and "Know your body" philosophies mentioned above.

I have the problem of feeling great one day and overdoing it. The next day I can hardly get out of bed. It's too easy for me to deny my limitations when I feel good.

The usual rules of exercise don't necessarily apply. I used to follow the "no pain no gain" philosophy. If I still did that I'd be dead! A little too much activity and my inflammation numbers (Sed rate) go off the chart.

Take Care,

Craig