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03/26/2011 04:48 PM

To Exercise or Not to Exercise

jlou
jlou  
Posts: 1235
Member

So, I have been having discussions with my doctors lately and we keep going back and forth about the amount of exercise I do. With the research still pending on almost everything about this disease and the differences between everybody with it, it can be very confusing.

When I first found out about Dercum's, I was very surprised (and just a bit too happy) to find so many sites and blogs of people with DD saying that exercise is not good for us, in fact it can exasperate the disease. This fit with what I experienced. In the summer of 2008, I was pushing myself exercising at least an hour in the morning at the gym, going to work and then heading back to the gym for another hour and half to two hours in the evening. After about two months of doing this anywhere from five to seven days a week, I ended up having an abscessed tooth that was treated with pain medicine and antibiotics and then a slight bout with pneumonia that was treated with prednisone. Well, for those of you who have read my story countless times, you all know this is when I went from being sore and tired just about every day to being in pain and fatigued every single day since.

After doing the research and finding out that I probably had Dercum's Disease the no exercise policy was very easy for me to believe. After more research, I have changed my mind.

It is not that all exercise is bad. We just do not want to overdo anything and that includes exercise. I have been trying to fit some exercise in my life again and slowly I am getting there. I gained 15 pounds over the last 4 month which, I have been informed in my yearly checkup, is putting me just below the level of morbid obesity. My cholesterol levels are horrible and my blood pressure has been up all week.

Now is the time for me to pull it together. Yes, I am still in pain 24/7, but there are things I can do. Walking is out (my hips and feet are in too bad of shape for that), but I can do a little on the stationary bike and I am looking to get a recumbent bike which will lessen the motion in my hips. Swimming is right around the corner which was what I did when I could last summer but this summer I hope to do a lot more. I also have been working closely with a yoga instructor to get a good routine in that works for me. My doctor reminded me doing 10 minutes at a time for 2-3 times a day is just as good as doing 20 minutes to ½ hour that day. Not doing the same exercise all the time makes it a little easier too and works different muscles, so if one group of muscles isn't having it one week, just try something different.

Everyone is different and their level of pain and where the pain is in their body may make some things difficult to do but I hope that you all are not just reading that we cannot exercise and accepting that as gospel but are out there figuring out a way for you to get a little exercise in. As always, please check with your doctor about what is right for you.

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03/27/2011 03:02 AM
Painisme
 
Posts: 43
New Member

Miss Janet,

I too am trying to figure some exercise into my day. I'll let you know how it goes. Also I'm very interested in yoga,stretching sounds good to me. What experiences have members had with yoga? My friend {not with DD} has been dong theraputic flexercise in a medical facility pool. She loves it. Also we have a Curves in town, anyone try that? "Help me if you can, I feelin down, but I sure appreciate you be'n round."

Thanks with love, Miss BettySideways


03/27/2011 09:40 AM
jlou
jlou  
Posts: 1235
Member

Betty - yoga is great. Not only for the stretching but the breathing (that is the most important part for us). The oxygen helps your body heal. I need the stretching as well, especially in the morning. Try the flexercise if you can. Doing exercise in a pool is less stress on the joints. That sounds great. I would love to hear more about it. My swimming has been doing a few stretches and exercises in the pool and just plain old swimming. I have to tell myself not to overdo though because while I am swimming it doesn't bother me but the next day I could be wiped out. Start slow and try doing just the 10 minutes at a time. That was good advise from my doctor. I was always athletic and in my mind I have to do crazy exercise all at once, but that is just not true. My doctor wants me to get a little more cardio - that is why I am trying the bike but not for more than 10-15 minutes at a time. I also change up the speeds. It makes me feel good after and I think I am doing better at keeping it to just the right amount. After a couple of years I think I may be getting the hang of it.

My sister is a PT and she has been working with me as well. SHe talked to some physical therapists that solely work on ALS and MS patients to get exercises that wouldn't be too much stress on the body.

Best wishes and I am so glad to hear you are trying. Take it slow and figure out what is right for you. Love the Beatles Smile


03/27/2011 01:00 PM
keeter

Janet has been around long enough to hear my stories about exercise. And YES! Not being able to do it has some appeal... But it's not true. Dr. Herbst says it. My doc drills it into me. I used to go to a gym 3 days a week and do cardio, stretching and strengthening. I can leg press 230 pounds but my thighs are totally flabby. I also do chest presses and my arms remain flabby. That was a tip. When I was doing a program with intense cardio and I was pumping my legs hard I saw them get bigger. That was another clue. So... what I have since read and learned on my own is that it is STRENUOUS exercise that we should avoid. That can make us hurt and the stress on our body can cause more lumps to form. We can do many kinds of light exercise. Water aerobics, chair aerobics, yoga, stretching, walking (if you can). Try something and if it hurts, either lessen it or switch to something else. I can't walk without pain now so I switched to chair aerobics to get off my feet and legs. My heart beats faster, I sweat and I don't ache - at least not more than I should. It's been a good way for me to exercise.

My doc and I go round and round. I say "Lose weight and exercise is the worst thing to say to a DD person!" He says "Now you know, Diane, that is never a bad suggestion." And I have to back away and admit that he is right. It is always going to benefit your health. In our case - keep your body and organs strong so if they get attacked later, they maybe have a head start. But only do as much as you can tolerate. Use caution and change what you're doing if you feel more pain. But don't give up!

Hugs,

Diane


03/27/2011 01:44 PM
sweetmamaloves

I love yoga, but it is still difficult.

03/28/2011 03:12 AM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Miss Betty..we'll help you get your feet back on the ground...someone please..please help me..help meeeeeee Smile Hugs to you and weren't the Beatles just boss! My favorite song is Imagine...Grandma Sylvia

03/28/2011 04:32 PM
wildexpectation
wildexpectation  
Posts: 105
Member

Since I have gotten so much worse since that bleed out in April and haven't been able to exercise and I found the name of an article 'Dercum's Disease as a cause for weight loss failure after Gastric Bypass Surgery', but haven't been able to get it to read unless I want to pay almost $32 and this is from PUB.MED - public medical libray.

I tried reaching my surgeon the other day, but he's moved and is in a clinic with other dr.and not just him. It didn't surprise me, when I asked to speak to him or give him a message, all they wanted to do was make me an appt. to come to their "before sx. seminar". I told her I had a sx. hx. with my surgeon and just wanted to talk to him about something.....all I got was a free brochure and business card mailed to me.

But, there was a web address to the clinic coordinator, so I e-mailed her and hopefully she will give him the message, if not we will be going round and round until she get so tired of hearing from me that she'll give him the message just to get me to leave her alone.

wild


03/29/2011 07:15 AM
keeter

Try searching for the author and article. I've had some success finding it in another source where I don't have to pay.

03/29/2011 08:29 AM
wildexpectation
wildexpectation  
Posts: 105
Member

Keeter, where did you find it. I'll really need that info if you can help me.

wild


04/01/2011 09:58 AM
keeter

I look under the author or the article name. Many times it is on multiple places and you can open one of them.
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