after my physical therapy eval, i got a fever and felt ill. not knowing why, and trying to comply with my pain dr's recommendations, i went back to PT
She said I was burning up, and she would just give me a gentle massage. I got meningitis-like symptoms, complete along with vestibular symptoms, headache, pressure, ear popping, and my neck felt like I had transverse myelitis. It lasted for two weeks.
after two weeks I went back to physical therapy, my doctor telling her to only do hands-off. she decided to stay away from my neck. I did a few minutes of pelvic tilts and breathing exercises. again, sick for two weeks, and got sacroiilitis-like symptoms.
I am not sure if this is the lyme doing this or one of my many co-infections.
Posts: 615 | From maryland | Registered: Oct 2007
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Peacesoul
Unregistered
posted
I was very active (weight lifting 6 days a week) the whole time I was sick. Never once did I have a bad reaction to it. My LLMD believes this is what "saved" me, but when I started ABX, I could not exercise to save my life. When I worked out or tried to work out on abx, I would feel sick like mad.
Exercising once you're off abx is probably more of a benefit than a hinderance.
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posted
I exercise daily. I walk from 1-3 miles a day depending on what day it is. 3 days a week I also do a 20 minutes exercise ball routine. I also do Ai Chi in a pool twice a week.
I believe that if I did not exercise, I wouldn't be able to get around as well as I do.
Use it or lose it.
I do have problems if I try to do too much. I love biking and kayaking, but have to make sure to do just a little at a time.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
``The activity should be restorative, or analeptic, serving to relieve, not exacerbate, symptoms.
Redefining exercise in this way acknowledges that a cookie-cutter approach to exercise therapy for CFIDS will not work because one size does not fit all.
To be successful, any exercise program should be tailored to match the individual patient's functionality and symptom fluctuations.''
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.
posted
Before lyme, I was a dancer for 12 years, was a runner and played tennis as well.
I have much difficulty now doing much of anything that exerts much energy.
When I exercise now my joints pop and ache, my nervous systems send shooting pains and then I feel like I am out of commission for a couple days.
I try to go on walks several times a week but if I'm not careful those can really make me pay the next day.
My doc is getting me into physical therapy 2x a week starting soon to see if I can get my muscles and joints functioning well again. Hopefully it will help!
Has anyone seen improvements with physical therapy??
Posts: 46 | From Texas | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Lots of people have seen improvement with PT, if the PT is knowledgeable. If not, it can be damaging and demeaning.
If you are working with a LLMD, my guess is they are sending you to a PT who is very well educated with lyme and CFS.
Dr. B has a special page for PT with lyme. I'll see if I can find that. ( but I'm really too toasted right now, maybe someone else has that to post - or I'll come back in a few hours and look through my files. nothing is in order. )
I'd advise having the PT read all about it and the two article above.
Qi Gong is also very good for measured endurance gains.
The weight training as in Dr. B's PT info. has helped many get stronger.
-
here are some corrected links to the work of Paul Cheney,MD
(as mentioned previously, some CFS may be undiagnosed lyme or other infections - still this research may be helpful for understanding how our bodies work - and to guide us to better health.)
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.
link at this site.
In an NIH-funded study on impedance cardiography also linked below, Peckerman and Natelson found that low cardiac output correlated with symptom severity in ME/CFS.
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.
==
VIDEO (not sure if different from above - this video starts right away:
-- This is not to scare, but to inform for safety in exercise in case this is applicable. It helps to understand others' challenges, too, in that we can't see or know all that is going on with others.
posted
When I'm well enough, I am still trying to go for a jog and lift weights 3-4 days a week. My LLMD said not to over do it, just what I can tolerate.
I will say, sometimes after exercise, I do tremor more for a couple of hours. Some of my nervous system symptoms do become aggravated.
So what is worse, a short-term aggravation of my symptoms or no exercise? What to do?
Posts: 566 | From West Coast | Registered: May 2008
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Peacesoul
Unregistered
posted
quote:Originally posted by tickssuck: When I'm well enough, I am still trying to go for a jog and lift weights 3-4 days a week. My LLMD said not to over do it, just what I can tolerate.
I will say, sometimes after exercise, I do tremor more for a couple of hours. Some of my nervous system symptoms do become aggravated.
So what is worse, a short-term aggravation of my symptoms or no exercise? What to do?
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i disagree with peacesoul. if you're exercising to the point of symptom aggravation, you're overdoing it. no exercise isn't ideal either, although many people are too ill to exercise at all. if you CAN exercise, that's great, just take it slow and easy. listen to your body's response.
light weight-lifting/strengthening exercises, yoga, etc, are much better than cardio when you have lyme. in fact according to dr. b cardio can be dangerous. also, never workout 2 days in a row; do every other day, at most (though of course it's best to start out slower than that).
posted
I think Peacesoul is agreeing with you. When asked, which is worse? His answer was short term aggravation.
Of course, this is not the answer I want to hear; I've been a runner junkie up until I got sick. But, I can accept that.
Guess I'll have to do further reading on this and consult with my LLMD. I'm feeling rather defeated right now.
Is there actually hope that one day we can return to cardio fitness? It all seems so never ending.
Posts: 566 | From West Coast | Registered: May 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
yes, as you improve and get stronger you can absolutely return to cardio fitness. there is hope!
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
dr b's guidelines do address exercise and PT...
i think he is now doing more research on exercise. i don't know if he has published anything on that yet.
i watched two of my kids grow up with lyme... both very different experiences and treatment. when they were no longer acute they both went into denial and to "prove" they don't have it they do very strenuous exercise.
i believe the strenuous exercise is a lifestyle change that can help keep the load down and hold off relapse. it makes sense...we know it doesn't like heat or O2
exercise and other lifestyle changes : diet, supplements, etc may be a way to keep it under control until a cure is finally found.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
The hallmark feature of CFS/CFIDS is extreme exercise intolerance -- I just wanted to point that out since someone posted that article. Exercise is certainly different in all of these conditions and it's important to really research it. For CFIDS patients like me, "exercise" is often lifting a piece of paper or a spoon, and that act can be utterly obliterating.
I just wanted to correct that since there's a lot of awful propaganda, esp. in Europe, trying to force CFIDS patients to exercise and often causing irreversible harm.
I think as a general rule with any condition, it's important to just trust your body and respect its limits.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
[quote] I think as a general rule with any condition, it's important to just trust your body and respect its limits.[.quote]
Bingo. You do what you can as you can, within a comfortable to mildly uncomfortable level (Exercise is never entirely comfortable).
Stressing the body is good, distressing the body is bad, and still you're already distressed, you have to go at the appropriate level for where you are in your recovery. Instead of walking or running 2, walk 1. Somedays will be diffenent. It's better to do less than more will Lyme disease or any diagnosis directly related to Lyme.
Progress is "NOT" made by suffering through intolerable symptoms. That includes Herx reactions and detox.
The key is slow, steady, and cautious. That's how true sober moderation brings about recovery. Rush and you're just smashing your face against a brick wall.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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