Lyme Disease Support Group

Is loss of muscle tone common in those battling Chronic Lyme? Or is it just the standard,... use it or lose it scenario??

For me, I think it was the old use it or lose it scenario. I was an avid runner before getting so sick. I ran five to seven miles at least four times per week for years. I even ran 12 miles in the Smoky Mountains...it was beautiful. After I had my first two children, I continued jogging with them in a stroller. I had pain, but just shrugged it off as a busy Mom overdoing it. But, after the third kid, everything came to a screeching halt. I was so ill, it was all I could do to walk from room to room putting the laundry away. Sure, I lost muscle tone, but I was debilitated from the Lyme disease and coinfections. So, I believe I lost my muscle tone from not using it. I don't know of any 'research' on this. Perhaps someone will come along and comment.

However, do try to exercise...even just a little. Movement helps the lymph system. The lymph system doesn't have its own pump.

I kept on working as hard as i physically could cutting wood etc as soon as my Arthritis diminished enough to permit.I kept losing weight and muscle i felt ok but looking at myself in the mirror was getting scary..like a carcass out of a POW camp..I was and still am always hungry ..i am a strange case..so i keep eating and doing tons of work inside and outside of the home.I am slowly gaining weight and muscle again but its a slow road, I do not have the stamina i had before Lyme thats for sure and find myself resting frequently and wanting to go to bed at 7pm but maybe thats what i need, lots of food and rest and NO stress.. I need everything to be cool and calm no spousal fighting no noise..no opening up the mail and looking at the bills! Its the truth Lyme eats at muscles mine anyway.

Connie said However, do try to exercise...even just a little. Movement helps the lymph system. The lymph system doesn't have its own pump.

That's a really good point. The lymph system helps you detox. I started to see a lot of improvement and a lot less pain once I started doing lymph exercises. Now I'm a lot stronger but at first all I could do was stand and twist at the waist swinging my arms loosely for a few minutes at a time. On days when even that was too hard I would sit in the rocking chair and rock. Even that little bit is really good. I hear that those little trampolines are supposed to be really good for the lymph system too.

I haven't exercised in 2 years so I think that's why I'm flabby. I've had lyme disease for over 15 years and I was really toned during most of that time. But then I was feeling pretty healthy and worked out a lot, power walking and working in a mill.

Bonita

Good points, thank you, everyone.

I've noticed the muscle loss on my outer thighs. You know where the the muscles meet up about mid-thigh? I'm sinking in right there... a lot.

I've had such a hard time doing any exercizing this year though so I have been suspecting that being the biggest factor, but this is getting worse. I do need to start trying to do more little things at the very least.

I do have one of those giant balls you can sit on and rock, bounce or balance, and I am trying to get back into using that more again. I also have one of those balance boards you stand on, it has the half ball on the underside you have have to use your leg muscles to keep it balanced just to stand still. I forgot I had it until the night before last, my youngest found it under my trampoline, LOL. I do also have that,.. I bought it last year, along with these other things because I have to have as little to no impact as possible, and I just can't do the pilates anymore. The trampoline I got is really great, I highly reccommend it. It's an oval one so you can get side-to-side steps in better than the little round ones. Ot also has a side bar which helps when I am feeling off-balance, I don't have to worry about falling over as I can steady myself that way. Plus, it has a sensor under the mat that keeps track of your steps on a digital monitor on top of the bar. It only counts the steps if you do them sufficiently... too soft, they don' count. I'm going to try to start using it again now that the pain seems to be lifting up some again. I have a treadmill, too, but it's in storage right now. Walking has been getting too hard on me though. It doesn't make much and my hips feel like they are bone on bone,... but then I was pretty much dx'd with osteoarthritis, too, about 6-7 years ago or so.

That's good to know about the lymphs...... what kind of exercizes are specific to them that I could make sure I'm doing, too?

Wow, I didn't know they made such cool rebounders. I haven't bought one because I was worried about falling over. One like yours would be great. I just read a bit more about them and for lymph exercise you don't have to jump, just bouncing without your feet leaving the surface is good enough. They claim it's the best thing for your lymph system so I think I'll get one. I'll have to settle for a cheapie though. I see some for $30 on craigslist.

When I was severely bedridden I practiced deep breathing, that's the only exercise I could do and even that was really hard. One deep breath would tire me out. But it's supposed to also be good for the lymph system and I did start noticing improvements around that time. That's why I kept at it.

I think it's really important to exercise but it's equally important not to overdo it too. Be gentle with yourself.

Bonita

Bonita,

You can do a search for rebounders with stabilizer bars. Many are expensive running between $100-$200, but I have seen some of the little round ones for around $50. that have the stabilizer bars on them. Mine is referred to as an oval jogger. It was closer to the $100 mark, but I love that it's oval for that side-to-side action. The stabilizer bar is a huge plus for me, or else I'd probably fall off, LOL!

There is no doubt in my mind that Lyme disease can cause drastic muscle loss and weakness. I am currently 18 years old and am just starting off at college. All of my life I have been playing a lot of sports and have always been very competitive. At the beginning of high school for me I was playing three sports at my school and was in the weight room at the very least 3 days a week. At that point I was in excellent shape and had very noticeable muscle tone. After being diagnosed and struggling with Lyme, even though I do not play sports anymore, I still like to lift weights just to stay in shape and as a hobby. I usually lift with a friend or two and the difference in the way the muscles on me grow and the longevity of the bigger muscles that my friends and I were trying to develop was astounding. I would have a hard lift, for the next two-three days have the muscles be bigger and stronger, and then by 4-5 days later everything had been gone that I had grown during my previous workout. Over this summer I was in the weight room 3-4 times a week and was able to stay in shape. When I moved into my college dorm in September it took me two more weeks to find my way to the gym but still made sure that I ate very healthy and had enough protein. When I got there I have moved down 65lbs on my back squat (roughly 30%) in just those two weeks. Any of my friends would have been surprised if they had moved down 10lbs during those two weeks. Unless I can commit myself to the gym at the very least every other day I will never see any gains. My muscles just seem to disappear leaving me skinny and weak.

p.s.

I just joined this support group after finding this discussion on a google search when I was looking for any information on if Lyme disease can cause muscle loss. I am very excited about this group and feel like I am under much less pressure and stress already just from reading about other people similar to me. Thank you for that

Beauty, Thanks for the tip! I'd never heard of an oval jogger. I'll look for one of those. With handlebars of course!

Sam, welcome to the group.

Sam, glad the post helped you find us here! Everyone here is fantastic with understanding & support, advice & suggestions, and some of the best senses of humor & sarcasm I've seen in a long time, LOL

That's interesting that even with strength training you are seeing the muscle loss.... that's not encouraging for me who can't even do that... *sigh*...... Lyme sucks!

Bonita, I'm not sure if mine in particular is still available. When I checked last night on amazon, it wasn't, ut you can see it, LOL... they have a LOT of the little round ones though. "Handlebars"... LMAO! Ya know, I get so off-balance some days, I feel like I need training wheels, too!