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Posted by c3mom (Member # 16412) on :
 
My Dr said exercise was very important, but I

blew the recommendation off. I felt horrible and

the it didn't make sense that exercising would

actually make you feel better. But I did and I

felt great! Why? I naturally hate to exercise. I

like to hike and take walks, garden etc. So,

back to my original question what have you found

to work the best. Also, what do you do when

your joints grind and hurt? Or you are too tired

and your heart is skipping beats? Thanks Char
 
Posted by Keebler (Member # 12673) on :
 
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Which doctor said this?

Exercise is important but the reason I ask which doctor said this is that, with active lyme, AEROBIC exercise is not recommended until stamina is better and treatment is further along.

Also, endocrine/adrenal &/or mitochondrial support might need to be in place before beginning any exercise protocol.


Gentle exercises such as walking, gentle bouncing (not even with feet leaving mat) of a mini-trampoline is good to get lymph circulation moving.

Tai chi or Qi gong are great for pain relief and circulation - and to help balance. Gentle water exercise is good if water is not too cool. You can wear a wrap on your head to keep from getting chilled.

A slow bike ride around the block . . . depending upon how you feel . . . or a few minutes on an exerbike at a very moderate speed might be good.

Some find lifting weights helps with strength. Exercise is not to be every day. A day off in between is advised. However, stretching like yoga - or some Qi Gong may work well daily.

And, I remember now that you said you hate organized exercise. So, choose an activity that you enjoy. Maybe dancing - slow at first . . . anything that gets you moving and that you enjoy.

Walking in nature is so healing - of course cleared trails are very nice. Be creative and go toward what nourishes you.

In addition to just moving, it helps to connect with life itself and helps in so many ways.

I'll look for a couple links for you and come back with those.


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Posted by Keebler (Member # 12673) on :
 
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http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=074362


Topic: Early stage & exerciese ...will I make it worse?


===========================


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=074342#000003


Topic: Dr. B's Lyme Rehabilitation (EXERCISE)


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Posted by gemofnj (Member # 15551) on :
 
Excercising really helped me get over a big hump in my lyme symptoms.

When I excercise I do FEEL better after. No question about it.

This is not a recommendation for a very sick lyme patient and would recommend checking with your doctor first. Most LLMD's do recommend yoga, stretching, tai chi, etc. in the beginning.

I usually do a brisk 2 mile walk, because I was used to doing that and more before I got sick.

I sometimes do feel my joints a little sore while doing it, but then they loosen up.

Working up a sweat is like a detox for me. I only do what I feel I can handle, no more. I was amazed how well I felt afterwards.

My heart doesnt skip a beat. It usually does that when I am at rest.
 
Posted by Vermont_Lymie (Member # 9780) on :
 
Exercise is so helpful for me. I do as much as I can.

If I am particularly tired, I still try to do as much as I can.

It helps me feel alot better, and I highly recommend it. Start slowly and work your way up.
 
Posted by DaveNJ (Member # 17362) on :
 
1.5 miles walking every other day...saunas on the day in between. It has helped me big time....don't think i would have made the progress i have without. my first walk was more like a shuffle.

now that vertigo is gone i walk pretty fast.

Dave
 
Posted by Lymetoo (Member # 743) on :
 
Dave... buddy...! I walk 1.5 miles every other day too!

Haven't lately because of my heart and now my stupid bladder....but plan to start up again next week.

1.5 miles is just right for me. Any more and my sciatic nerve pain kicks up.
 
Posted by seekhelp (Member # 15067) on :
 
I commend everyone for exercising as it's great. I just am utterly confused how you are able to do so with Lyme. I tighten up immediately.

Either Lyme is not as bad as I think and I hve other issues going on or all of you have a much higher tolerance for pain / spasms than me. Interesting. i used to ride my bike 10-15 miles per day. Now I can't ride 1/4 mile.

Walking 1.5 miles per day? Only if I want to go to the ER. lol. We all have to start somewhere.
 
Posted by adamm (Member # 11910) on :
 
I walk a ton. It hasn't helped a bit.
 
Posted by kam (Member # 3410) on :
 
Hiker/Walker's/Mover's Club

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=020931
 
Posted by seekhelp (Member # 15067) on :
 
I get the opposite effect from exercise. It makes me sicker for days. That's consistent with what I've read about Lyme. Feeling better right after is not. Either there are different stages of Lyme or we're not all battling the same issues.
 
Posted by Lymeorsomething (Member # 16359) on :
 
I exercise religiously with weights and by running. Unfortunately, it has done little to help my symptoms. Exercise used to energize me. Now nothing seems to energize me...not even sleep. Still exercise is important. It reduces stress and helps the body fight infection.
 
Posted by disturbedme (Member # 12346) on :
 
I really need to start exercising more myself. When I was having some good days, I would get into exercise and do some weight lifting and some low impact aerobics, but I get really lazy and some days, even when feeling okay, just have a hard time getting off my bum.

And then when I'm not feeling well, I could care less about exercising at all.

I do agree though that exercising is VERY important to our health and wellness. I've heard from some LLMDs that you can't expect to get well unless you exercise. Exercising can boost your immune system and help your body fight these things. Also, it can be good because it brings your body temp up and the keets and bugs do not like warm temps.
 
Posted by Liz D (Member # 16739) on :
 
I go to Curves 3 or 4 times a week and sometimes I can hardly drag myself there. I go at whatever pace I can handle so some days its pretty pathetic. I feel that even the gentle exercise helps and it helps my mind big time.
 
Posted by lymednva (Member # 9098) on :
 
I shy away from exercise because it still bring son post-exertional malaise for me. That means I'm in bed for days if I overdo it.

For the past 6 months I've been going to physical therapy, first for my broken shoulder and now for knee pain made worse by relying on my opposite side while my shoulder was in a sling (2 months).

I found even my PT has required me to increase my nap times and to be vigilant about making time to rest each and every day.

When I have improved sufficiently to be able to do so I hope to start walking my dogs. They need it and so do I!

I've been ill most of my life, so I'm not expecting overnight success here.
 
Posted by lymie_in_md (Member # 14197) on :
 
When you get rid of lyme it is important to exercise. While you have lyme it is important just to get out and walk as much as you can handle.

I had my big outing two weeks ago 3 to 4 hours of racquetball on a Saturday. I was lifting the next day my legs were a little sore that is about it. Two months ago, I wouldn't been out of it for at least two weeks barely moving.

I'm back to aerobically working out 3 to 4 times a week running 1 to 1 1/2 miles and doing quite a bit of lifting plus walking 2 miles a day. I don't feel I'm quite in remission yet, but I'm closing in on it.

Exercise is important only when the body can handle the detoxification from exercise. In otherwords aerobic exercise creates waste, if the liver and kidney are overloaded with trying to remove lyme & companies toxins, you would just be recycling toxins your body can't manage.

So the difference between being ill and being well, might just come down to the speed of toxin removal.

I just can't believe I'm aerobically exercising again. It's been 3 weeks, so far so good. [Big Grin]
 
Posted by Keebler (Member # 12673) on :
 
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seekhelp -

You wrote: " . . . I commend everyone for exercising as it's great. I just am utterly confused how you are able to do so with Lyme. I tighten up immediately. . . ."


Some people do have exercise intolerance and it can be quite profound. For some it has to do with the extent of bacterial or viral load. There is also much to consider with endocrine and mitochrondia - and with the heart.


===============

This explains why some people have such trouble and what can help:


www.cfids.org/sparkcfs/working-out.pdf


WHEN WORKING OUT DOESN'T WORK OUT


By Dr. Christopher R. Snell, Dr. J. MarkVanNess and Staci R. Stevens, et.al.

From THE CFIDS CHRONICLE SUMMER 2004

without photos for easier printing: http://tinyurl.com/4qevgl


====================================


www.immunesupport.com/library/showarticle.cfm/id/8299

CHRONIC FATIGUE SYNDROME AND THE EXERCISE CONUNDRUM

by Lucinda Bateman, MD

08-28-2007

Excerpt:

Patients with CFS who are unable to remain active become deconditioned, **** but their ability to tolerate exercise stress and raise the threshold may be impaired compared to normal individuals. ****


Indeed, recent studies published by the CDC Computational Challenge teams suggest that CFS patients may have more difficulty than others recovering from common physical stressors, as measured by increased allostatic load (Maloney).


It is possible that some stressors leave a mark or permanent injury in patients with CFS, as if their normal stress response and recovery mechanisms are dysregulated or chronically depleted.


In addition to physical deconditioning, there are many partially understood aspects of CFS, well established in the literature, that might contribute to an exercise threshold, the exceeding of which could result in pathologic injury.


This might include:


* Defects of oxidative metabolism,

* Dysregulation of the autonomic nervous system and HPA-axis (CRH, cortisol and aldosterone),

* Presence of chronic or latent reactivating infection,


* Dysregulated immune or inflammatory systems (cytokine production, natural killer cell function, complement activation)

* And other yet-to-be clarified processes.


It is not difficult to imagine an exercise or activity threshold in someone with CFS after which the body experiences physiologic injury that contributes to post-exertional malaise.

It is not necessary to understand this before we respect it.


- full article at link


================


While some (many?) cases of CFS might be undiagnosed lyme, this information may be helpful to patients across the board. Even if from lyme, it helps us understand how better to take care of ourselves while seeking treatment/resolution.


www.cfids-cab.org/MESA/Lerner.html


Cardiac Insufficiency Hypothesis


- article and many links, including to: Pittler MH, Schmidt K, Ernst E., Hawthorn extract for treating chronic heart failure: meta-analysis of randomized trials. Am J Med. 2003 Jun 1;114(8):665-74. [PDF Format]


=========================


www.cfids-cab.org/MESA/CFS_Dist.htm


You can view this entire VIDEO on line for free:

A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.


CFS and Diastolic Cardiomyopathy - Paul Cheney, M.D., Ph.D.


---------

www.cfids-cab.org/MESA/Lerner.html

New Research on Cardiac Insufficiency


several articles:


There is new research from a New Jersey team, authored by Doctors Arnold Peckerman, Benjamin Natelson et al., which found left-ventricular dysfunction following exertion and orthostatic stress in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

. . .

Dr. A. Martin Lerner . . . Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance. Exercise, in turn, worsens the cardiac dysfunction.

. . . .

More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory that a subset of ME/CFS patients suffer from a diastolic cardiomyopathy, a problem with ventricular filling resulting from mitochondrial dysfunction and low ATP energy in the heart.


=====================================


Again, presented not to sadden, but if there is a dysfunction, treatment for underlying infections and employing support measures can make a difference.


The link to the Hawthorn research above holds hope. I feel so much better when I take that. Magnesium, d-Ribose, etc. all discussed in these links.


===================

www.vrp.com/Search.aspx?page=LIST&search_in=articles&free_text|1227210608548=Mitochondrial%20Restoration

From VRP

Search Results for: Mitochondrial Restoration - 6 articles


---


www.vrp.com/Search.aspx?page=LIST&search_in=articles&free_text|1227210654059=Hawthorn

Search Results for: Hawthorn - 5 abstracts

--

You can also search PubMed:

www.ncbi.nlm.nih.gov/sites/entrez

Hawthorn, cardiac - 191 articles


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Posted by richedie (Member # 14689) on :
 
I make sure I walk about 45 minutes a day and lift weights about three times a week. I think it helps. If I am having a really bad day, I skip it. Exercise can help to detox, release endorphins, and improve immunity.
 
Posted by lymeHerx001 (Member # 6215) on :
 
Cant exercise anymore... *sucks.

I wish I could, in fact I have been meaning to cancel my gym membership.
 
Posted by backintherain (Member # 14385) on :
 
thanks for the inspiration! i just went and worked out for the first time in quite a while.

I am doing very well right now, generally speaking. That's why I can do this. I think everyone's situation and symptoms are somewhat different.


When I first got sick (symptoms came on fast), I was still trying to run several times a week. Then, when I got diagnosed, I asked the doctor if I could keep up my very active lifestyle. He laughed and said he'd be interested to see how I felt if I did this.

But there was no way! I was in denial about how sick I was. And trying to push my body caught up with me really fast. Finally I accepted just lying in bed most of the time and shuffling around the house a bit. It was really exciting the first time I could take a real walk.
Now that I'm past the worst (I hope) I can say exercise really helps me.


But I agree with those who say if you CAN do it, it helps! So many good reasons-- detox, mood, physical.. But overdoing it is not helpful.

A slow walk while breathing fresh air and maybe getting a little sun could be great. Or a little stretching program. Maybe just sit in a sauna and stretch a bit?
 
Posted by Angelica (Member # 15601) on :
 
I take yoga classes when I am up to it. I usually feel better after the classes. I do a little yoga at home too. For me exercising does normally help unless I am to sick to do so.
 
Posted by lymeHerx001 (Member # 6215) on :
 
I just came back from a wedding and boy did I force myself to jump around!
It only took 3 advil.

I am going to make an effort now to exercise every day regardless of the pain.

I will keep you informed.

I do believe that mind is more powerfull than matter and that our bodies do have the ability to make a full recovery.

Faith is beautiful, and what can be better to be in the midst of beauty?
 
Posted by tickssuck (Member # 15388) on :
 
It seems that Lyme and company just manifests in so many different ways. When I first got acutely sick, I couldn't exercise at all. Walking took 100% of my concentration; I was really fouled up.

I now run a few days a week, lift weights, yoga sometimes, eliptical sometimes...my pain is only in my neck (thankfully), not my joints at this point. I do have some fatigue, but not dibilitating.

Even though I can exercise, I am still very sick and symptomatic, it has just manifested differently. My CNS has taken the biggest hit. My balance has improved which allows me to run. I probably feel best when I'm being really active as it feels like it occupies my overly-active CNS, if that makes sense. Unfortunately, I can't say that the exercise has necessarily helped my symptoms; but it does help my mental state.

If I end up on IV, which appears likely at this point, I'm not sure where that will leave me as far as exercising goes. TS
 
Posted by Leelee (Member # 19112) on :
 
I usually walk my dogs 3 - 5 miles every day. Just a leisurely pace.

But not today. I am dead tired. I can't even find the energy to drag myself up the stairs to go to bed.

The one thing I realize when I do exercise, is that I never regret having done it. That counts for something to me.
 
Posted by Wildthing (Member # 6791) on :
 
Wii Fit! I love it! Especially with a partner. Wii Sport-Tennis and Bowling is also very fun!

Not that I am in a nursing home, but the Wii is very popular with nursing homes, to get older folks moving. It has been a huge sucess.
 
Posted by NMN (Member # 11007) on :
 
I am kinda in the same boat as TS. I have always worked out to some degree since I began treating 2 years ago.

I gave up cardio stuff like running for the first 6 months but kept up my weight lifting 3 times a week.

I have gotten to the stage where I have the body of an athelete but my brain CNS and eyes are still very inflammed so I am still very disabled. Neck is very sore since starting IV.

I recently bought a heart rate monitor and I have a resting heart rate of 50 and I can run 30 minutes flat out and never go over my maximum heart limit of 172.

I could probably train for a marathon (in the dark of course due to the crazy light sensitivity I have LOL)

I found it really interesting to see this. I am actually in the best shape of my life but I need a brain transplant.

I would be interested to hear if anyone else has been monitoring their heart rate whilst training?

Oh and another thing I noticed is that my heart rate shoots up from 50 to 90 if I stand up quickly.

I feel fantastic after training but usually everything goes to pot a few hours later.

I have had to give up the weight training due to the PICC line but I still run and do Thai Chi.
 
Posted by Lymetoo (Member # 743) on :
 
Go HERE to post your exercise success daily!!

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=021813;p=0

We encourage each other with whatever exercise the person is able to do.

For some, it's simply making meal or walking across the room.

Join us!! [Smile]
 
Posted by disturbedme (Member # 12346) on :
 
I try to exercise when I can. And then on days where I'm feeling relatively good and do as much as 20 minutes cardio, the next day I pay for it big time and feel extremely awful and so stiff. So I do it, but I pay for it big time. It's sad to go from working out two hours a day at the gym doing hard cardio and weight machines with no issues whatsoever, to working out at home doing only 20 minutes of very light weights and cardio feeling extremely sick the next day.
 
Posted by lymeHerx001 (Member # 6215) on :
 
Thats terrible NMN, I usually found that when my body feels better, my mind follows.

Brain fog is the worst and most disabling part of this disease. It robs me of things I love and most importantlly a normal life being present.
 
Posted by NMN (Member # 11007) on :
 
Tell me about it. I literally now suffer from chronic inflammation of CNS and if treatment does not work I am going to have to look at treating this as an auto immune disease.
 
Posted by AZURE WISH (Member # 804) on :
 
I am just to sick to exercise now.

when i am well enough i have an isometrics dvd. the whole thing is done either sitting on a chair or standing holding on to the chair.

As soon as i am well enough this is where i plan to start.
 
Posted by NMN (Member # 11007) on :
 
I don;t have that bad brain fog anymore. Still a little but not that horrible de realization. I just cant stand light and any visual stimulants right now. makes me nausious and irritated.

I am a creature of the night.
 
Posted by map1131 (Member # 2022) on :
 
I joined the YMCA in Jan 09. I'm doing arthritic classes in a heated pool(90 degrees).

Love it, it is the best thing I've done for myself in a long time. I was a walker before lyme & co started in '99. I just haven't been able to find strength or physical ability to do exercise.

This YMCA is amazing. When you exercise in the heated water, there is no, I mean no exercise pain or discomfort to any of my muscles, joints, etc.

It is a hour class. I go 2 times a week. Yes it does exhaust me, but in a good way. I have insomnia problems, so anything to help me rest is needed.

Check your local YMCA.

Pam
 
Posted by kgarrett (Member # 17420) on :
 
I definitely feel better if I exercise - A LOT. Some of my neuro symptoms do feel a little bit worse. I take ib if I have pain problems before I exercise. It has really helped my heart rate go down. Dropped 20-30 beats per minute during intense exercise so I am more efficient at using oxygen. I use weights also. I find it lifts some of the brain fog. Maybe because I am getting more oxygen to the brain.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
The level of exercise changes as disease progression improves. Early on, exercise should consist (if the patient is bedridden), of simply attempting to brush one's teeth, or to be encouraged to lift arms occasionally and to tighten grip of the hands.

As improvements come the patient will naturally be inclined to be more active, and so they should be conscious of the activity -- measuring it. Walking with a can or walker, or using one's own arms to move the wheel chair are common starting points.

Eventually light weight training or walking, stretching will begin happening. Walking is usually the first combined with stretching -- these are just normal things people do as they recover.

Light weight training begins eventually as well to gently encourage muscles to get used to a variety of movements, allowing upper body ligaments to begin strenghtening.

Getting sunlight and doing activities that strengthen bones (assuming the person has been ill for a very long time or bedridden for 6 months to a year) -- this will be important.

Dr. Burrascano recommends a routine that is pretty good, but it's certainly not the only thing that works. Some people -- like myself -- progressed much more effectively with areobic exercise (done lightly at first). Improved circulation as well as stretching helped my circulatory system and increased oxygen flow -- decreasing fatigue, and decreasing pain.

Other people can't do this -- each person must begin gently trying different routines. Even Dr. B's routine isn't possible for some patients -- so it shows you how individual rehabilitation is and the time frame too.
 


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