posted
Like when I go for walks, it feels okay when I'm doing it (and these are short walks, like 10 minutes) and then a little while after my legs and arms feel all shaky and I'm SO tired.
I just want to be able to feel healthy. Does anyone else get this?
Thanks, Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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posted
For Hubby -- as the saying goes "Been there, done that."
He has major problems with tremors/myoclonus/seizure-like activity. When it was at his worst if he sat for longer than 20 or 30 minutes and then tried to get up and move it would set off his tremors.
Even now, 5 years into his illness he walks 2 or 3 miles on good days, but only in the mornings. Almost every afternoon is spent in bed -- usually drugged up and/or sleeping off a seizure-like episode.
In the mornings he has no problem climbing one flight of stairs or doing 100 pushups, but after supper he can hardly walk and lifting a gallon jug of water leaves him weak and shaking.
To make it even more confusing, if he does not walk in the mornings his afternoons and evenings are even worse -- it is not caused by over exertion.
To make a long story short, my guess is that you have Babesia. Do you have any symptoms of that? It frequently causes hypercoagulation and prevents the muscles from receiving enough oxygen so you get tired more easily.
This is not medical advice, but just my opinion based on hubby's experiences.
He resumed walking for exercise after his first round of treatment for Babesia -- it had been 2 or 3 years since he had gotten sick and he was unable to exercise although he was previously a jogger for many years.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Cutie, assuming you're on abx, how long have you been under treatment?
Last fall, even earlier this year, I was where you are now, and could do only minimal exertion which would be followed, in my case, by falling asleep for 2-3 hours. Sometimes getting shaky during or after exertion.
When I first started going to the gym, I was so weak that I could barely keep the machine going without it pausing for 10-15minutes. Then after coming home, I'd have to take a nap in the afternoon and was sometimes wiped out for several days after. Slowly, my energy level started getting better.
On abx since last September, I've just recently changed one of my abx, (stopped Ketek and added tinidazole to go w/Bicillin LA injections) and it's helping w/my energy a lot.
Just this month I've been able to start exercising with more intensity and for longer periods of time. I'm careful not to overdo. I keep track of my heart rate and keep it in the "fat burning" range as opposed to "cardio", and today was able to do a full one hour workout, w/45min on the elliptical machine. I'm so thrilled to be able to do this!
I know this isn't how it works for everyone, but I wanted to give you some encouragement. There IS light at the end of the tunnel.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
I can't exercise without getting weak or shaky -- this includes walking, yoga, and even Tai Chi, which are my favorites.
If I push myself to exercise or exert at all regularly, my immune system seems to take a hit and I catch whatever flu or cold virus happens to be around. Then I am doubly miserable, and it takes three or four weeks to recover.
posted
Well I'm sorry to hear you all have the same problem but when I mention it to my dr. she looks at me like I'm crazy and just says, "Eat protein before you exercise".
I just started abx last week so hopefully I will improve. I dearly miss exercising and used to be so active. Aerobics, rowing, jogging. Now a walk to the mailbox wipes me out.
I get shaky and weak. Sometimes I just feel like I'm crazy with all my wierd symptoms.
Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I used to be able to excersise 1 hour a day every day in 2000-2001
After this time I had a relapse and I would get sick after excersising. Now 5 years later I cant exercise at all without being in severe pain afterwards, I loose sleep, I toss and turn, my brain feels swollen with brain fog. ETC
I even have a membership at ballies that is wasting away at $28 a month. Ohh how they get you.
Posts: 2905 | From New England | Registered: Sep 2004
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quote:Originally posted by cutie: Like when I go for walks, it feels okay when I'm doing it (and these are short walks, like 10 minutes) and then a little while after my legs and arms feel all shaky and I'm SO tired.
Are you walking during the daytime? The light exposure will alter your vitamin D levels, and vitamin D is key for the bacteria.
Try walking after dark (well after sunset) and see if your symptoms are any less. If so, that would indicate it's related to light exposure. Some of us with the infection are more sensitive to light than others.
Posts: 727 | From USA | Registered: Mar 2006
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posted
That was a very interesting point from Bea. My tremors are worst after more physical exertion and I am positive for babs.
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
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posted
My tremors are bad and so are the little jerks ( I guess they're myoclonus) but after I do any kind of phys. exertion they are worse.
YOu know those little jerks that the neuro told me to "not worry about."
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Many people have difficulty exercising with Lyme. Dr. B strongly recommends people do not do aerobic exercise at the beginning of treatment. Before the diagnosis and early in treatment I discovered I would get light headed during aerobic exercise.
I have motor tics, that I thought were tremors and myoclonus until seeing a neurologist. These get worse with all kinds of exercise. I currently do yoga pretty regularly. It took me a while to get to this point.
But as my tics have gotten worse, I've noticed it gets more difficult. I often have to sit a few minutes and let my tics happen and my fingers won't stop moving during shivasana, the resting pose at the end.
Maybe you should experiment with exercising inside or in the evening to see if the sun makes a difference. Or maybe just tone it down. 10 minutes seems like it's a little, but maybe you need to walk slower or for only 5 minutes at a time at this point.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Cutie, Last August I was so weak that I couldn't even walk to my mailbox! My 91 yo mother came to stay with me and went to get it for me almost every day for a month. Only one year before, I was running 6-8 miles a week. So I can definitely relate.
So now that you're on abx, you will get better. Progress may seem to take forever, and will require patience, so be forewarned.
As Aniek mentioned, you shouldn't try anything aerobic. Definitely, don't push yourself physically at first. Just go slow and steady, and be gentle with yourself. Getting well isn't a contest.
This bug really wreaks havoc on our energy systems, as well as just about every other system in the body. It almost defies imagination. I hope someday they're able to figure it out and explain it, so that all the non-believers will finally see the light.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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quote:Originally posted by cutie: So lyme LIKES sunlight? I didn' know this!
Many if not most of us with this infection have abnormal vitamin D levels because the bacteria process that vitamin as part of their life cycle, and do so excessively. This disruption leads to many of our symptoms.
D is called the "sunshine vitamin" because light also stimulates vitamin D production and conversion. When we go out in the sun, we're only increasing our already abnormal vitamin D processing, leading to worse symptoms.
How much worse varies from person to person, you may be one of the people very sensitive to light. If you wish, you can read lots more about this at marshallprotocol.com
Posts: 727 | From USA | Registered: Mar 2006
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Have been there recently... Sorry to hear you're in the same boat.
I'm now able to cycle when the weather is good, but today overdose it going uphill and got some heart pain... Next time will do slower.
I sometimes could barely walk, could barely give a few steps, sometimes couldn't climb few steps, or couldn't even raise my head from bed, depending on day/ condition. I had extreme fatigue, legs got numb, I got extreme fatigue under sunlight too.
And on top, got light sensitiveness to the point of getting nauseated with sunlight (not on skin, just to look at it through the window pane!).
I ended up in emergency in March just because of a 15-20 minute walk, no ups and downs, no sunlight, and tortoise pace.
All of this is gone for about 2 months. Knock on wood!!!!
It looks like babesia too, but who knows?? I understand Bea saying sometimes her husband can do push ups, and others, barely stand up from bed. Exactly like me.
2 days after ending up in emergency, I tried to force my air hunger crisis in order to be tested in hospital. There I was, jogging for 10-20 minutes in the parking lot of the hospital, just to be exausted after but no air hunger at all. Just 24 hours before, I couldn't even stand up from the sofa to go to the toilet without assistance.
This is a crazy disease, no one really knows the reasons for all our symptoms and I suppose, each case is a particular case.
My light sensitivity is gone (I think), as well as air hunger, I can stand strong sunlight on skin now, but fatigue still comes and goes. On the good days, I can cycle from morning to evening (let's say, about 20-30 minute). Unimaginable back in March!!
Do you have hot flushes/ night sweats?
Posts: 1086 | From Switzerland | Registered: Oct 2005
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LostCityAgent
Unregistered
posted
YOU GUYS! Can I swim please? I am 300 LBS. I cannot take this anymore. I am too young. I need to excercise and diet alone of 1500 cals per day is not enough to lose it all. I need to swim. This all seemed to start when I was jogging one night before bed. The next morning I woke up numb from the waist down. I CANNOT TAKE IT ANYMORE . . .this is worse than MS
Also, does anyones ears constantly itch inside? I am just so tired of Lyme.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
LostCityAgent,
Swimming is very intense. I tried it for a few weeks, and just didn't have the stamina.
If you've been on treatment for a while, you can probably start exercising. But if you haven't been exercising regularly, I wouldn't suggest starting with swimming. If you have been exercising you could try to start with a few laps.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
John, since you're in the water anyway, spend time doing all the stretching exercises in the water! This really helped me before I had to stop since I became allergic to chemical smells in there.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
It is my understanding you will not burn calories in the water, so if weight loss is your goal, a change of diet may be needed. Not necessarily a cut out of calories, but a change of what you eat.
Otherwise, water is an excellent way to stretch, strengthen your muscles and cardiovascular without damaging your joints.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Exercising in water is really good exercise. When you do any kind of movement it is against the pressure of the water. I took a water exercise program and it was a lot more of a workout than I thought it would be, but so much easier on my joints.
BTW I seem to have a different reaction to exercise than most of you. I will be feeling dragged-down tired, not want to move, but once I get going riding my bike and the blood/oxygen get flowing I am rejuvenated.
When I am finished my ride I feel much better than when I started.
IMportant to stretch before and after, gentle strecthes.
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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Just 24 hours before, I couldn't even stand up from the sofa to go to the toilet without assistance.
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