Re: muscle weakness and exercise

[Guest guest]

Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had

One of the things that I discovered when I went and enrolled in a Pulmonary rehab exercise group was how totally deconditioned I had become. And I do mean totally.

Muscle rigidity is a real problem with sarcoidosis. So is the effects of improper breathing techniques, and for those of us that have the pulmonary (lung) component-- we don't diffuse the oxygen past the lungs-- so it turns into carbon dioxide. This causes extreme hyperventilation (you wouldn't believe it-- but that's what is happening!).

Take a look at your fingernails, or lips. Do they have a 'blue' tinge to them? How about your toenails? Do you have numbness in your legs and feet, or that feeling where it seems like your hands and feet are coming back from having "fallen asleep"?

These are signs that you aren't getting the oxygen out to your extremities. Add anemia and it gets even worse.

So how do we deal with this?

First is the need to learn to breath correctly. Sitting up straight, yet relaxed-- breathe in deeply thru your nose. Then slowly exhale for as long as you can-- give it one more exhale even if you think you've gone as far as you can to empty your lungs. This gets the cO2 out of your lungs, and frees up your lungs to take the next breath.

Continue to breath deeply, and exhale fully. These should be long slow inhalations and exhalations. If you feel lightheaded, you're breathing to quickly. (Get a paper bag and breathe into it if your shortness of breath and dizzyness gets worse.)

If you chose, you can focus on the air coming in- by closing your eyes, and seeing the air inhaled and cooling on your upper lip. As you exhale- feel that the air has warmed itself as it travelled thru your body. This is an excellant exercise for anyone- sick or healthy. You will find yourself much more relaxed, and alert. You'll also see that some of the numbness of the extremities is lessening.

The next thing they had us do was to picture ourself holding a wet sponge in each hand. Slowly, lifting the sponge in an arm curl. Do this 5 times with each arm. After 3 or 4 days, move up to a 1lb package of spaghetti in each arm. Do simple arm movements, and on the "lift" you inhale (when doing the work part of the movement) and then exhale as you let your arms down. As you find that you can do more repeats of the movements-- add more weight. Within a couple of weeks, you'll find that you can use 2lb weights (a quart of milk).

Sitting in a chair, make believe you are marching in place. As you get stronger, stand behind the chair and holding on to it, march. As you can increase-- you may want to lay down on the ground and do leg lifts, or do them while hanging on to the back of the chair. Raise yourself up onto your toes, to stretch the back of your calfs. Ankle circles, squats (MINOR at first) and work up way up.

Our muscles have become very weak, and I know that for me, my muscles seem to be harder after my workout, instead of more relaxed. It's not the same as them being "pumped up" like my husband and son are after lifting weights, but they are hard- that is because our bodies have so much in the way of toxins in the muscles, that we are going to take a very long to release those toxins.

Drinking water both before and after exercising (even chair exercises) is an absolute must! This is how those toxins will get cleared. Otherwise, you will find yourself hurting from the exercise.

If you have lung involvement, you may want to get into a program where your oxygen levels can be monitored. For me, I have Stage 4 pulm fibrosis, and only 46% of my lungs are working. This means that I'm only getting the red blood cells across 54% of the lung tissue, to be carried out to my body. Granted, I'm saturating at 92%-- but that means my heart and lungs are having to work harder than they should. If my saturation falls below 92%---- then I get the oxygen on- and use it during my exercise.

Do not try to get your heart rate up!! We have to get our strength up---- but not our heart rate. Whole different concept in exercising. So it truly is slow and steady----

Hope this helps,

Tracie

NS Co-owner/moderator

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