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razz

Scleroderma and Exercise?

27 posts in this topic

Hi everyone!

 

I would like to begin an exercise routine and thought I might go with Tai Chi or some form of yoga. I can't decide which one would give me the flexibility benefits. I have to consider if I lay down on the floor will I be able to get up and would I be able to do the hand maneuvers. I might also have to exercise when someone is home with me. I do walk 1/2 hour several times a week but I would like to try something that uses stretching and isn't too complicated.

 

My question is, What kind of exercise works best for you and how often do you exercise?

 

Thanks everybody!

 

:)

Razz


Live well, Laugh often, Love much

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Hey Razz,

 

I have wanted to take a yoga class for years but have not found one to fit into my schedule. I have a yoga video that I use (sparingly :lol: ) and I like it but you are right - it is sometimes hard to get back up and it is hard on my whimpy wrists. I mostly just sit on the floor and do my own version of yoga/pilates, making it up as I go along - anything to get a good stretch.

 

I have thought about Tai Chi myself and I think it would be an awesome exercise for us so I have the same question you do: Does anyone do TaiChi, do you like it and how effective is it for flexibility?

 

Good Question Razz!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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You might want to try VERY beginner yoga. Yoga can be intense and grueling. Building up strength in your legs and upper body is very important. And don't be surprised if you end up sore for days. Good luck!

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I do Tai Chi and really enjoy it. I find that the class I go to the instructor is very understanding & if there is something which I find difficult he finds ways for me to do the exercise in a slightly different way. It is relaxing but helps to keep the joints moving in a gentle way. I do it every morning for about 10 - 20 mins and again before I go to bed for about 10 mins, this of course is dependent on how I am feeling.

There are many different forms of Tai Chi and I do the LFA (Lee Family) form and you can get a DVD and book showing the movements, there is a website as well. For me attending the classes is the best way to do it because you are shown the correct way which involves your breathing and warm up exercises, some of these I found really useful in helping to get my hand/wrist more flexible after a serious broken wrist and again after having my Carpal Tunnel op.

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Yoga is great but I like water therapy its so much easier for you to move around in. And It helps with sore muscles. That is what I would pick out.. Sam


Sam

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I looked into water yoga, arthritis, and tai chi-like classes, but found I prefer to walk/stretch in the heated therapy pool at my own pace. I was de-motivated by the instructors and most of the class participants. Just not my style, I guess.

 

 

When I am at my lower points (physically) I find the warm water soothing on my joints and I can stretch and move well after some warm-up walking. It is remarkable how much more can be done in water than on land.

 

Also, there is always a life guard and usually a physical therapist on site in case I get into any trouble. I can also time my visit to match my mood; when there are regular patrons I've gotten to know in the pool, or when it is likely to be empty.

 

When I am physically stronger, though, I really like the elliptical in the regular gym, plus the exercises and stretches on the pully system my physical therapist directed for me. Whether I manage 3 mintutes or 15 minutes, it really loosens the joints and tendons and gets the circulation going. It really helps with the friction rubs.

 

The gym I go to has a significant senior and physical therapy population, so lots of people with arthritis, dystrophies, post-stroke, MS and other disabilities. It is inspiring to see some of these people push forward.

 

I try to treat my visits to the gym/pool the same as a doctor's appointment... it's a must. On my bad days, though, it's 50/50 whether I make it.

 

<_<

-RTS

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Thanks everyone for the great ideas!

 

Barefut, I have wimpy wrists too. The exercises I do right now are improvised and some are also made up. I guess anything we can do to stretch our muscles and get the circulation going is fantastic!

Omaeva, I might have a beginners yoga dvd buried somewhere in my video/dvd collection. I'll have to get my shovel out and do some digging.

Jensue, The LFA dvd sounds like something I'd like to order since that is something I can do at home at my own pace. Your Tai Chi teacher sounds awesome that he would find a different way for you to do the exercise. I like teachers that make sure everyone gets the full benefit from their class, regardless of their physical ability.

Sam, Water therapy sounds good.

RTS, I can see how taking a class with a highly motivated group of healthy people who are pushing themselves beyond boundaries we can only dream about can become discouraging. You didn't give up and were able to find the right group for you. What a great idea! I also like the idea of exercising with the senior crowd and physical therapy groups since everyone is there for therapuetic reasons. I have tried the water therapy and found it so very relaxing, enough to fall sleep afterwards.

 

Does anyone have a workout buddy? It's always more fun and motivating when there's someone else with you.

 

Great suggestions so far!

 

Razz


Live well, Laugh often, Love much

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Hi Razz, I am a fan of Pilates. I went to a class, but I think there are plenty of DVDs and books around as well. As with yoga the type of exercises can vary - the teacher I had did a lot of exercises laying on the floor, but in the class my husband went to they did a lot of the exercises whilst standing.

Lizzie

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Razz the exercises in a warm hydrotherapy pool are really good and I certainly would continue with that if I could. My local hospital has one but it is very small and you can only do it for 6 sessions after being referred by your consultant, we don't have any other warm pools near us. I did have 6 sessions which was wonderful and really helped the joints & muscles. I can't swim in most pools because they are too cod & set my Raynaud's off!

 

Jensue

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Hi Razz,

 

I do Pilates, but I pick and chose so I don't over do it. It concentrates on the core muscles and flexibility more than developing strength, but you can do most of the exercises with those big rubber ribbon things. It's worked extremely well for me over the years. Your public library might be able to get the DVD's for you.

 

The heated pool is good, but the air when I came out was too cold and set off dear old M'sieu Raynaud and they wouldn't let me stay in it forever and just deliver my meals. :D I couldn't figure out how to manage the O2 either.

 

I loved yoga, but I found that you've really gotta be a bit careful with any of the exercises that put you in a head down position if you have GERD. <_< With the bad back and hips, it was too much.

 

For the hands I still use yoga. There's a book out that shows all the positions, but I don't know if I can name it in the open forum. Between it, thera-putty (for resistance), and the knitting, I'm able to keep the hands limber and the pain pretty much under control.

 

JJ

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Razz,

 

I walk about 6 days a week, usually 3 miles, sometimes 4. I have TWO of the best work out buddies one can have. A little furry girl named Sadie and a little furry boy named Max. They own the park. I'd like to do more but that would mean I have to use supplemental oxygen and that takes the fun out of it.

 

I hope you find something that suits you.

 

Clem

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Clem,

 

Sadie and Max sound like the best companions to have in a workout. I'm sure they appreciate the enjoyable walks! :)

 

JJ,

 

I've also wondered about trying Pilates. Thanks for reminding me I can check my library's online catalogue to see what they have available. I always wanted to learn how to knit. You found a great way to get flexiblity into your hands while creating a work of beauty. (I used to crochet little things like scarfs and cup holders.) :lol:

 

Jensue,

 

I tried the heated pool therapy sessions. They were the best. Like you said the sessions were limited also. I have an outdoor pool that I had put in 5 years ago for my daughters. Now it hardly gets used. I promised myself before this summer ends, I'm going in for a good dunking! (As long as it's not freezing cold!) Like JJ says I don't want a visit from M'sieu Raynaud's.

 

Lizzie,

 

I will definitely look into Pilates. I'm glad to hear you and your husband have a workout routine in common. It's great to share the same ideals toward healthy living. That's fantastic!

 

 

Thanks for the ideas everyone!

Razz


Live well, Laugh often, Love much

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Good Morning,

 

In February of this year, I started an exercise program through our local hospital called "Ladies Choice Exercise". All my doctors enthusiastically signed off on my partricipation. It is held at the same place that Cardiac and Pulmonary Rehab take place. The class is offered twice a week. They have every piece of equipment imaginable! They also offer classes too ... I take the class that contains balance, stretching, weights and abdominal work. The best part is that there is always 1 RN (most of the time there are 2 or 3) on hand. They know all of our medical conditions too. I am able to use their pulse/ox monitor to check on my numbers (I have mild pulmonary fibrosis). I get light headed when I push too hard on the tread mill, but feel safe with the medical staff around. My pulmonary doctor at UCSF is thrilled that I am in this program ... he puts it that I am "agressively participating in exercise rehabilitation".

 

Most of all, I think it has helped me personally ... their are other women who are cancer surviors ... and others who just want to be more healthy and don't like the health club setting. I am so blessed to have found this program and the other ladies are terrific too!

 

Take care,

Angie

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Hi Razz

 

I'm coming in on this late but I have found exercise to be surprisingly good for me. And this is from someone who never did any exercise before. My doctor recommended pulmonary rehabilitation and it was the beginning of learning how to breathe and exercise and feel stronger.

 

I walk one hour about 4 times a week - if the weather is good, it's outside, including one hill (ugh) and if it's bad I walk inside with my friend who puts up with my slower pace and heavy breathing.

 

I do the leg and upper body exercises about 2 times a week and yoga stretches about 4 times a week. I worked with a trainer - She tailored a program for me and challenges me to do more than I ever thought I could.

 

Of all the exercises I do, I feel the yoga is something I'll be able to do the longest and the stretching helps me live my life and move about.

 

Good luck with everything -

Annie N

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I think belly dancing would be a blast!!! Razz....ever thought of that? Actually, any dance class would be fun.

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Hi Razz,

 

I do several exercises and those have helped me tremendously. Normally, I start my day at 5AM with Yoga for about 45-60 minutes, breathing exercises for about 30 minutes, and end with meditation for 20 minutes.

 

During the day, either during lunch time and/or evening I walk at moderate pace for 2-3 miles.

 

My joint pains are way down, my weight is very stable in the range of 128-130 lbs, annd my diabetes is very well under control – normally morning glucose level under 80. I have been doing it for about a year and found to be extremely beneficial. I lovve my routine and can't stand a day without it.

 

Yes, still around once a month (like today), I get attack from Scleroderma making me very fatigued for a day or two.


Kind regards,

 

Kamlesh

 

 

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Angie,

 

I would like working out in a group setting like you mentioned if possible. No skinny women in tight spandex or muscular men prancing around. I hear any type of weight bearing exercise is good for strengthening bones which I could use. Thanks for sharing your exercise routine!

 

Annie N,

 

It's funny how you mentioned you never exercised before because that's how I was back in the day. Once you get started it's amazing how gradually one can build endurance. Keep up the good work. I'm starting to feel motivated now!

 

Clem,

 

Belly dancing or any kind of dancing would be perfect! I think all of us would make a great group of belly dancers! Good idea Clem!

 

 

Kamlesh,

 

You are doing fantastic! I am amazed at your schedule and dedication. The overall benefits you are getting are phenomenal. You are proof that despite having scleroderma, a good exercise routine can help tremendously in so many ways! Keep up the good work!

 

 

Hugs,

Razz


Live well, Laugh often, Love much

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Razz......my exercise routine prob won't work for you, but I'll tell you anyway. By the way, you're right.....it is amazing the way you feel once you start a routine and stick to it. It becomes a part of your day and it's sorely missed when you have to pass on it once in awhile. Anyway, I do weight training. Even with my rebuilt arm, I find that weights make me feel good and make me look good (at least that's what my wife tells me, but she could be pulling my leg). I also like to hike in our Utah mountains. I can't wait for winter cause then I get to snowshoe and ski. I have given up cycling for this year....got tired of being hit by cars. Maybe I'll do more next summer. My schedule for the weights depends on how I feel. Sometimes early in the morn, sometimes late afternoon.

 

I bought my wife (who also has SD) a set of 2lb and 3lb dumbells that are soft covered to protect her hands. We also have a weight machine system (from Sears) in our basement. It is safer to use than heavy free weights.

 

Keep in shape so you can write that next book.


~ You have to think anyway.....you might as well think big

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You all make me feel ashamed. :( I'm an exercise whiner. But, after reading all of your posts, I'm going to renew my membership at Replay Phy. Therapy and start atleast using the treadmill and exercise bike. Whine, whine, whine. <_<

 

Christy


Love makes the world go around!

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Yfchoice,

 

I've never been to Utah but I imagine the moutainous views are spectacular! That alone would get me out of the house and walking. You and your wife sound like a well-matched cute couple. (I like how you both met at a scleroderma conference.) There has to be a way to alert people with a warning attached to your bicycle that says "I'm on a bicycle, don't get near me!" You're right I do need to get in shape. I'm wiping the dust off my dumbells right now.

 

Christy,

 

You're not kidding about feeling ashamed! The most exercise I would get besides my 1/2 walks was a path from the sofa to the frig and back. :lol:

 

I like how everyone found some type of exercise that they can do on a regular basis.

 

Razz


Live well, Laugh often, Love much

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Hi razz,

 

Can't do a routine anymore with exercise but will use the pool in the summer. If that can't be done, will use my interactive computer game console. There are alot of different games that you need to interact with. Surprising it is quite exhausting sometimes. The kids like it too and it makes it fun.

 

Judy


A happy heart is good medicine.

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Judy,

 

I haven't tried the games console, but it sure looks like fun! I think this is a great game for kids (and parents) to play since they have so much energy. Swimming in the pool is one of my favorite pastimes.

 

 

Hugs,

Razz


Live well, Laugh often, Love much

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I haven't been able to integreate much needed flexibility and strengthening exercise into my post symptomatic scleroderma life, but prior to that I did a fair amount of yoga. In my experience, if you tell the teacher about your limitations, he/she will be able to recommend alternative poses and exercises that you'll be able to do as the class is in progress. They often suggest to the class alternatives for those with less flexibility or knee or back issues--so nothing to feel awkward about.

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delk,

 

Thank goodness there are exercise instructors who will recommend an alternate routine for people like us who aren't as flexible. Thank you for that great reminder. I'll keep that in mind next time I sign up for a class.

 

Hugs,

Razz


Live well, Laugh often, Love much

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I don't know if anyone is still reading this topic, but I go to gym which is part of an international chain of exercise facilities for women only. They use hydraulic machines so the amount of resistance is determined by how many repetitions you do. It's circuit training - you spend 30 seconds on a machine, then 30 seconds on a "recovery station." The recovery station is just a small platform. Some of the women barely move on them and some jog in place - whatever floats your boat is OK! Music is always playing so a lot of people dance. They don't allow portable music devices and encourage the development of friendships. There is a good mix of patrons -- young healthy women to 80 year old women with RA. I find everyone to be very supportive of each other. I go 3 times a week. The circuit takes about 30 minutes, and they encourage a stretching routine afterwards - it takes about 10 minutes. I LOVE IT!!! I tried gyms with the more traditional weight machines.. and couldn't do them. When I told my rheumatologist about this place, he was all for it. As a side note, I had moderate bone loss in my hips and mild bone loss in my spine. After pursuing this program for a year, my spine was better (not normal, but better) and my hips showed mild loss instead of moderate. The only thing that was different was starting the exercise. It is a science-based program and it works! Try googling "women's exercise programs" and you may be able to find a similar program in your area.

 

Soaring Eagle

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