Question About Exercise

[lynnie22]

When I was at Mayo three years ago (returning in two months), I was told it was essential to use a recumbent bike to build up leg strength. I have but not rigorously enough, and for whatever reason over last few months, have had rapid weight loss accompanied by losing most of my muscle mass. Of course my symptoms have gotten much worse. I don't know the cause of the weight loss or muscle wasting, and am looking into it, but am trying to build myself up again. I was wondering what you do for muscle building of your legs or abs, and how much you can do (it is hard to do for me). And, if anyone has ever had this rapid loss of muscle.

[Guest maia]

Ive had rapid weight and muscle loss and havent found a tolerable way to exercize unfortunately.

[Katybug]

I haven't had weight loss or wasting but here are some strengthening exercises my pt has me do that are gentle because of my eds:

1). Squeezing a ball (soccer or basket ball size) or a firm small pillow in between my knees.

2). Laying on my back and lifting my leg up slowly about 5-6 inches and putting it back down slowly.

3). Laying on my side and lifting leg slowly about 5-6 inches then back down slowly.

4). On side, with knees bent, keep ankles/feet touching and just lift top knee up (called clam shells if that helps you understand what the exercise looks like.)

We started at only 10 reps for each exercise and add very slowly so as not to cause any problems.

[andybonse]

If your not eating enough this happens,

You need to eat 500 calories more than maintenance to build muscle

[SarahA33]

Linnie,,

What about a rowing machine or swimming? I really suggest when you go back to Mayo you link up with Dr. Michael Joyner (also at Mayo), he runs their exerc. lab there and is awesome.

http://www.drmichaeljoyner.com/about/

"Michael J. Joyner, M.D., is a physician-researcher and one of the world’s leading experts on human performance and exercise physiology." - taken from Dr. Joyner's personal website. I have his contact info if your interested

[lynnie22]

Thanks all of you. Andy. that was an eye opener. Didn't realize that about calories and muscle mass. Does that mean because of my small intake over the past few months, that has been the reason I have lost so much muscle mass? Thanks Katy. I will try your regimen. Sarah, do I tell the doctor arranging my schedule to include Dr. Joyner -- I hear it's a very busy one. Or do I just contact him when I get there? I'm going to be seeing the cardiologist who originally saw me and diagnosed me, who has set me up with an autonomic neurologist and who knows who else.

[Guest Alex]

Lynnie,

I've posted this link in the past http://www.sld.cu/galerias/pdf/sitios/rehabilitacion/leg-str.pdf

These are some "doable" leg strengthening exercises that could help.

As Katie suggested, you may want to start low and go slow, but I guess some exercise is better than none, particularly since you're complaining about muscle mass loss.

Alex

[looneymom]

Hi Lynnie,

My son drinks a protein shake to help keep his muscles from wasting away. His cardiologist has recommended that I give him the shakes twice a day. This gives him 30 extra grams of protein a day. However, my son is probably losing some still because he is unable to exercise due to tremors. All of the exercises Katybug has mentioned are good for beginners and help maintain core strength. My son was doing all of these before the tremors started. One other exercise my son did was raising his legs up and down (marching) while sitting in a chair. He also wore 1 pound ankle weights while doing this. As you get stronger, you can add the weights.

Rachel

[lynnie22]

I have just downloaded the link you posted, Alex. Thanks! I cannot believe how flacid I suddenly became everywhere....not a muscle in sight. It's got to be related to my decline. I didn't think of taking a protein shake supplement Rachel, but it makes so much sense, considering how little food I eat these days . I don't know where my appetite went and why I am so nauseous -- had a complete gastro work up, well, the basics at least. But getting my muscles back seems crucial.

[SarahA33]

"Sarah, do I tell the doctor arranging my schedule to include Dr. Joyner -- I hear it's a very busy one. Or do I just contact him when I get there? I'm going to be seeing the cardiologist who originally saw me and diagnosed me, who has set me up with an autonomic neurologist and who knows who else. "

I would highly recommend arranging the visit prior with Dr. Joyner. Much like most of the doc's there, he travels and is quite busy

I hope you can arrange your schedules to have a visit.

[Science girl]

I just went to a local gym to see about using the recumbent bikes. Anyway I got talking to the trainer there and he suggested that I bike on my back without a bike! I lye on my bed to do it as my pelvis is still sensitive to hard surfaces (I have osteomalacia and had a lot of pseudo fractures), then I put my legs up and do a movement like riding a bike. He said you can get someone to hold your feet to apply resistance too. I thought it was a good alternative when you don't have easy access to a recumbent bike.

Anyway I can't do this for more than ten cycles at the moment (due pelvis pain, weakness and I get too out of breath) but I have found it helps to normalize my blood pressure and heart rate. I think both the gravity with the pumping of the muscles helps to pump the blood back to the heart and relieve the thoracic hypovolemia. Even though I only do this very briefly I can repeat it throughout the day. When I'm feeling bad my lying bp is 90/60 and jumps up to 160/100 on standing and my heart rate from 60 to 120. Doing this exercise brings up my lying bp and heart rate to more like bp 112/70 and hr 70 and standing to 128/80 with hr 80.

I only just started this in the last week so i not sure if it will continue to help but my legs do not feel so weak. I thing the blood pooling makes them feel weaker.

Hope this helps

Karen

[lynnie22]

I started a serious routine yesterday (can't do that much) of my recumbent bike with resistance for 8 minutes and many of the exercises Alex suggested. What I found is that, although I felt good afterwards, my heart rate went way up today and woke me up at 120 in bed. Considering I'm on a small amount of inderol, this was strange. I also had leg cramps and couldn't get out of bed for much of the day and my bp has been on the low side. Is it common for exercise (not much at that) to raise your hr for a while?

Karen, it sounds like for you, exercise has been extremely helpful immediately.

My heart rate is usually (on 10 mg of Inderol twice a day -- but not during the night) 75 sitting and 90 or so standing, except in the AM when it is 120. It has increased it seems with exercise for the moment. My bp is all over the place, very low often, can't usually take the inderol in evening without it going low and dizzy, but with any sort of work or stimulation, goes way up.

[Science girl]

I know that even the slightest excercise a few month back would of sent me POTtie. I can only do this now because I have been taking ketotifen and other drugs to get things under control. In feb I went to a physiotherapist and did some pelvic exercises and even the very simple tightening of my abdomen and pelvis lying down was enough that I had to increase the dose. This area of my body seems to set me off. I can't swim, walk, ride a bike or do stretching...go figure?

[lynnie22]

What is it about exercise that ultimately helps us but seems to for a while exacerbate our symptoms? How do you deal with that?

[kayjay]

What is it about exercise that ultimately helps us but seems to for a while exacerbate our symptoms? How do you deal with that?

For me pots is most likely a lifelong condition. I've had it for 15 years for certain. I believe I had symptoms of it even earlier.

I mentioned that because my advice is not for a "cure". Some people really seem to do better with exercise. I'm not one of those people.

I exercise because I believe it is good for my entire body. I know that being weak and unfit will not make me feel better. My advice for what it's worth

1) commit to exercise. (I intend to exercise for the rest of my life in some form or another).

2) try something new. ( I now swim year round. My tennis days are over but I can take swim classes at the y)

3) don't over do it. (One swim class is better for me than staying for 2 in a row).

4) don't be afraid to fail. (I've been visibly sick in public more times than I want to remember. Everyone else forgets thankfully).

5) don't be hard on yourself. (I need to cut myself some slack when I just can't do it)

6) listen to your body but remember it tells big fat lies (pots makes me feel like I'm going to have a heart attack. I haven't yet)

7) don't be "all or nothing" (when I'm too sick to do anything it's hard to go back to it)

I ignore every symptom that I possibly can. I realize that it's doubtful that I will ever run a marathon but I can swim, use a bike, and do some Pilates.

I think exercise is supposed to increase blood volume and strong muscles are a natural compression.

Two more thoughts...are you getting enough protein? Are you having gi issues and not absorbing nutrition?

I eat food a absolutely hate... Just for the nutrition. I also think I lost a lot of leg strength in a short amount of time from avoiding walking up stairs.

Good luck! I hope your return visit is beneficial.

[lynnie22]

Well thank you kayjay for that valuable list of advice. Your commitment is inspiring. As far as you questions, I have had alot of gastro issues the last few months, don't know why -- despite a colonoscopy/endoscopy -- but somewhere a few months ago I lost my appetite and lost alot of weight, along with muscle mass. I don't think I eat enough protein, let alone enough, period. I'm sure I'm not absorbing nutrients properly. Why? It has paralleled my recent sharp decline.

[looneymom]

Hi Lynnie,

Could your decrease in appetite be due to warmer weather, a virus, an increase in medication, or stress?

Rachel

[Science girl]

The reason exercise is difficult can be for various reasons. POTS gives us thoracic hypovolemia as the blood pools in our legs. This means we are not getting enough oxygen to our hearts, lungs, and brains. This low blood volume in our thorax is picked up by receptors that measure pressure telling our body's to release noradrenaline to increase heart rate but the pooling continues and the thorax is still low in blood so more noradrenaline is released and heart rate keeps going up. The reaction desensitizes the CO2 receptors and our body reacts to low CO2 by hyperventilating. That's why we are told to excercise in a recumbent position or in water where the effect of gravity on our blood stream is less. The thought is if we can work our skeletal muscles in our legs they can help pump the blood up when standing helping against the blood pooling.

For some people with POTS other things stop us exercising. If you have mast cell issues you can have post excercise problems as the excercise causes splitting of your mast cells. For me I couldn't to any excercise without this happening and ending up on my back for days. It has taken controlling the mast cells to be able to start doing a little.

Others have further complications like those with EDS where joints can be easily strained. I have osteomalacia from low vit d so I needed to let the bones start to heal first.

Each one of us has different issues so we need to understand them first and treat what we can and work toward exercise.

[kayjay]

Well thank you kayjay for that valuable list of advice. Your commitment is inspiring. As far as you questions, I have had alot of gastro issues the last few months, don't know why -- despite a colonoscopy/endoscopy -- but somewhere a few months ago I lost my appetite and lost alot of weight, along with muscle mass. I don't think I eat enough protein, let alone enough, period. I'm sure I'm not absorbing nutrients properly. Why? It has paralleled my recent sharp decline.

I have chronic fatigue syndrome also. I actually find that to be my biggest hurtle. There are days when I force myself to go to swim class and come home and am in bed most of the day. I hate it... But I'm learning not to criticize myself for going back to bed. I used to feel like a failure for being exhausted all of the time.

If you are having gi issues, please consider getting your vitamin levels checked.

I've been deficient in iron and d in the past. I am gluten free and take suppliments. Is still have dysautonomia etc. but I really don't believe I ever had IBS although I was diagnosed with it. Gluten free and trying to deal with the dysautonomia issues has helped my gi system.

[kayjay]

Also I second Sarah's suggestion for swimming. It is the best thing that I've tried. I also did Pilates and yoga but it was harder for me to be in a group of healthy people. I have to tell myself that I don't have to stay the whole time. It's pretty easy to slip out of a swim class because its not so quiet.

I felt disruptive when I left Pilates or yoga early. I still recommend them- but I'm better with the pool.

When I use a recumbent bike it's too easy for me to "over do" it. I'm a bit of a goal setter

[lynnie22]

Thanks for all the suggestions. Kayjay, I love your dog. How old is she/he? Swimming does sound like a good idea. Just have to get myself to a health club or pool I can join! Not a great swimmer but always wanted to become better. I went to a nutritionist just a few weeks ago, am having a few tests for minerals, hormones, leaky gut, and I am sure I am vitamin depleted. Gluten free on this board seems to be the way to go.

My appetite loss Rachel has been going on for months, through the winter, spring and summer.....don't know what caused it. It's a shame considering how much I've always enjoyed food. Hopefully I'll get to the bottom of it.

Thank you for your explanation, Science Girl. I don't know what I have fully, hopefully will find out in Mayo. But your name is fitting.

I've never done Pilates and right now yoga is a bit of a challenge because of two torn rotator cuffs, it's not easy in any case, but they have classes nearby for people with disabilities.

[kayjay]

Thanks for all the suggestions. Kayjay, I love your dog. How old is she/he? Swimming does sound like a good idea. Just have to get myself to a health club or pool I can join! Not a great swimmer but always wanted to become better. I went to a nutritionist just a few weeks ago, am having a few tests for minerals, hormones, leaky gut, and I am sure I am vitamin depleted. Gluten free on this board seems to be the way to go.

My appetite loss Rachel has been going on for months, through the winter, spring and summer.....don't know what caused it. It's a shame considering how much I've always enjoyed food. Hopefully I'll get to the bottom of it.

Thank you for your explanation, Science Girl. I don't know what I have fully, hopefully will find out in Mayo. But your name is fitting.

I've never done Pilates and right now yoga is a bit of a challenge because of two torn rotator cuffs, it's not easy in any case, but they have classes nearby for people with disabilities.

It's actually my moms dog . She is 7.

Just to clarify when I say "swimming" I don't mean laps I take group "water exercise" classes at the Y. It's less cardio than laps and I get to use my entire body. The cold water is hard to get used to but actually better for me once I get moving. I have water shoes (the pool floor can be hard on your feet) and ankle weights. I keep my water bottle along the edge of the pool also and drink during class.

It's intimidating to start but many places let you try a few days for free. I've embarrass myself with everything from passing out to forgetting my locker combination

Lots of people in water classes are there with health problems. I've met people with MS, bad backs and knees, and fibromyalgia.

[lynnie22]

That sounds like a good idea. I will check out swim classes in my area. Love your mom's dog.