Exercise

[Guest guest]

I am still trying to find a good medium regarding exercising.

I just walked 10 minutes..around the block.

I then got in my power chair and went to the local coffee shop, bank,

library, counseling center, post office and picked up papers to volunteer at a

school

near by.

It was great to get out and about. I will need to stay down for the rest of

the day. But, it was worth it.

I just received a power chair after being housebound for over 2 years.

I live in a small town so everything is close by.

Kate

[Guest guest]

my exercoze is getting up in the morning and getting dressed . lol

[Guest guest]

Hi there,

I could use some feed back on this as well. I have been doing some water

aerobics and some recumbent biking and tread-milling at the gym. I haven't

noticed any ill effects, but no improvement in my condition either.

[Guest guest]

Thank you, Sherry Z, for putting things into a more realistic perspective for

some of us.

While I admire those in this group who are working out for an hour or so a day,

or

swimming 1-2 miles four times a week, your 15 to 20 minute regimes of hosehold

activity

seem to me to be sounder advice for someone coming up against the restrictions

of PA for

the first time.

Of course exercise is vitally important, but to use a rather inappropriate

metaphor, it's

horses for courses. Until PA struck about five years ago, I was reasonably fit

and worked

as a piano restorer (they're not the lightest things to have to work with, and

so was quite

strong too), and used to enjoy taking reasonably long walks, but even then

wouldn't have

considered hour-long workouts. At its worst, the PA made getting up a flight of

stairs the

equivalent of an Everest expedition, and even now, with periods of comparative

remission

and the help of medication, that sort of execise is just out of the question.

So, good luck to you if you can manage the sort of exercise that some have been

advocating, but don't feel you're failing if you just can't. You may even be

doing more

harm than good if you push yourself too hard. Build up gradually from what you

feel

comfortable doing, even if that's only a bit of ironing, and then try some

gentle walking,

swimming or bike-riding before trying anything that is so strenuous that it

triggers

another flare.

Best wishes to all,

Marcus

[Guest guest]

Good to hear from you Marcus.

I am newly diagnosed, and have been trying to get at least some exercise into

my daily program. My biggest problem up to this point has been my finger joints

and wrist pain. I recently have been experiencing trouble with my feet. Oh Lord

how we do take some things for granted. The hour walks I used to take routinely

are now on most days pretty much out of the question. It can be very

frustrating, especially since up until last year I was an active 56 year old

equestrian. Now the idea of doing battle with a fractious 1,200 lb horse does

not enter my mind. Even the coin pony at the grocery store looks threatening.

LOL.

I find the water to be my best friend. How lovely to be floating and pain

free. I took up water aerobics and was feeling pretty virtuous about being able

to keep up for the full hour. My feet it appears do not care to be so virtuous.

I believe they are telling me that the concussion for that long a time is a bit

much. I am going to tone it down to one half hour and invest in some of those

pretty little water shoes with the soft soles. I hope that will help.

I enjoy hearing from all of you.

[Guest guest]

Marcus, at the time I began to have the arthritis pain in my feet, I

was working out faithfully for 45 mins. to an hour 6 days a week. I

alternated between aerobic exercise (treadmill) one day and free

weights the next day. I was hoping to run a half-marathon within a

couple of years. PA put me flat on my back, with the foot pain

progressing to many other joints and pustular psoriasis on palms and

soles. I was literally bedridden for several months and housebound

for several more months.

My rheumy said no exercise except aquatic. That was nearly two

years ago. It took me a full year before I could even do any

aquatic exercise. Just walking laps in a pool would cause a bad

flare of the pustular psoriasis on my soles, even with shoes on.

For the next 6 months, the only thing I could do was tread water in

the deep end, or risk causing a flare of either P or A or both. I

got really good at treading water, though! I could tread water for

45 mins. to an hour without any flotation device. It's better

aerobic exercise than you might think!

Anyway, I don't think it does us much good if we push it to the

point of causing a flare. It took getting things somewhat under

control with MTX and Humira before I could do any more than 15 mins

of standing (let alone walking) without causing myself a nightmare

of pain later. Not everyone has it so bad as I did, so people

shouldn't panic and think their days of activity are over. But

everyone should learn for themselves what they can tolerate without

doing more harm than good, and test it frequently to see if they can

do a little more.

After almost 2 years and now weekly injections of Humira (and 40

pounds of unwanted weight!!!), I'm just now beginning to very

slowly, very carefully, get back on my treadmill. The first few

times I tried, I had pain afterwards so I backed off. For the last

month I've been able to walk just 20-30 mins. several times a week

without causing myself a problem.

I'm thankful to be able to do what I can do. Slow and steady!!!

regards,

sherry z

[Guest guest]

There are two brands of shoes for water aerobics that are very lightweight but

are made like a walking/running shoe. One is Ryka, the other I've forgotten but

it's a name sports brand. Cost a little more but would offer those of you with

serious feet problems more protection.

I've been very fortunate in that starting the disease this late in life seems

have lessened the symptoms - and it was caught early.. Before I went on Enbrel

(my doctor doesn't mess around - it was her first drug of choice and she kept

providing my insurance company with more and more information - even my x-rays -

until they finally approved it), I had a few bad months: not bedridden by any

means but tough to walk, get out of a chair, etc. But it really didn't take long

to get back to what is now pretty much my normal exercise routine of aerobics

and fitness floor. That could change, I realize, at any time but agree with all

that you must simply listen to your own body. It will tell you loudly and

clearly what you can and cannot do. The few things that still give me problems

are all osteo-related and were issues for me before the PA started.

Joanna Hoelscher

630-833-7361

[Guest guest]

Are you seeing a rhuem or a derm ?

You really need to be on something that will help prevent the joint

damage ... I was on Mobic after they took Vioxx off the market and it

did not really help me either .. my advise ... call your doc - tell

them the drug is not giving you relief and ask for a different

medication ... Vioxx was wonderful - I felt relief within an hour of

taking it .. Celebrex took about 2-3 weeks in my system to have the

same effect ... if you want to stay with an NSAID ask your doctor to

try Oruvail (KETOPROPHEN) it is a once a day drug - it gave me almost

the same relief that Vioxx did and it isn't a COX2 so you don't have

to worry about the heart damage - but definately eat with it ... But

it will not prevent the bone damage ... you need something else for

that ...

I switched off the Oruvail to HUMIRA an injectable this Jan - due to

my Psoriasis getting so bad and the bone damage that was becoming

very visible in my hands/fingers ... and so far so good ... I hated

the idea of having to give myself a shot but - I'm finding out I CAN

DO IT ... it's every other week and if you ice the injection site -

you can't even feel it ...

I have seen a rheumy for the last 10 yrs - but I went to the derm and

she is the one who put me on Humira. She told me it was the only drug

out there that has shown to actually reverse some of the damage

caused by the disease ... she explained how the drug worked in the

body and made me feel comfortable with trying it...

Basically I was tired of living the way I had been - my psoriasis was

out of control and she told me it did not have to be that way ...

This medicine could clear it ... so I have been on a month now and

feel like I have 1000 times more energy - I can walk the mall ,,,

walk around costco ... carry laundry downstairs .. do dishes ...

I used to go home from work and lay on the couch all night because I

was just wiped out ... I thought I was lazy ... I just didn't realize

how bad I felt until I did not feel that way anymore ...

I just hope that things continue to improve and this medicine is my

cure all ... because I don't want to go back to how it was

Steph

[Guest guest]

I do yoga, walking, gardening, acupuncture, physical therapy

prescribed exercises, and massage to keep myself going.

If you do yoga, try to get an teacher who is knowledgeable. Often

there are classes run for older people or those with disabilities.

The one I most recently attended was run by a chiropractor who would

go around the room and give special instructions depending on your

physical problem.

Talk to your physical therapist about what s/he suggests. S/He may

know the local yoga teachers and can suggest whom to go to.

If you have never done yoga, you will need to realize that it is

different than high school gym class where you compete with others.

In yoga, everything that you do is focused on what you can do with no

pressure from outside to avoid any damage.

Kathleen

Eureka CA

I wonder what exercise you've all tried. Is there anything that helps

the joint pain? Or is there something I can do even if I am

experiencing the joint pain? I miss not being able to run like I

used

to. I'm thinking about trying yoga or pilates.

[Guest guest]

I have done aqua-cise, that is walking or running in a heated pool, such as at a

YMCA or club that has a heated pool. If you can find a club with both a heated

pool and a hit-tub/whirlpool, it works wonders for the arthritic pain that Lyme

tortures us with. I have also found that massage therapy, chiropractic

adjustments also help with some of the joint/muscle pain and helps cut the

muscle spams down. I personally do the following for exercise when my Lyme

symptoms allow me: Tai-Chi, walking the dog, and very small bike rides. To try

to keep flexibility, I do a lot of stretching exercises. I have learned the hard

way that if I push my body into too much physical activity, even when I think

I'm feeling " better " , I wind up in a major relapse, which puts me right back in

the hospital; so please do not push yourself. I was very active both physically

and mentally before Lyme, and now Lyme has caused me to have to put many things

on a longtime hold. I hope this helps. Take care not to " over do it " .

Barb

[ ] Exercise

I wonder what exercise you've all tried. Is there anything that helps

the joint pain? Or is there something I can do even if I am

experiencing the joint pain? I miss not being able to run like I used

to. I'm thinking about trying yoga or pilates.

Thanks,

Vivian, California

[Guest guest]

> Has anyone felt better with certain moderate exercise and/or massage?

Exercising is generally considered good. However, I felt a lot worse doing mild

exercise and decided to stop after two months (two times a week half an hour

training on several types of equipment). That was after taking AB for about one

year. I have heard the same from some others who had done longer AB course.

I'm now only doing some muscle training with small weights like Jay suggests. I

lost lots of muscle and connective tissue, so I have to be very careful.

[Guest guest]

Just curious and I'm throwing this out in case it hasn't been tried : what about

exercising in water? I know you said you it didn't work for you doing mild

exercise, but the water resistance makes it an effective option... no?

Best regards,

Safrina

>

> > Has anyone felt better with certain moderate exercise and/or massage?

>

> Exercising is generally considered good. However, I felt a lot worse doing

mild exercise and decided to stop after two months (two times a week half an

hour training on several types of equipment). That was after taking AB for about

one year. I have heard the same from some others who had done longer AB course.

> I'm now only doing some muscle training with small weights like Jay suggests.

I lost lots of muscle and connective tissue, so I have to be very careful.

>

[Guest guest]

I feel exercise is critical...Burascano was VERY big on exercise......and

sauna.......

[ ] Re: exercise

> Has anyone felt better with certain moderate exercise and/or massage?

Exercising is generally considered good. However, I felt a lot worse doing mild

exercise and decided to stop after two months (two times a week half an hour

training on several types of equipment). That was after taking AB for about one

year. I have heard the same from some others who had done longer AB course.

I'm now only doing some muscle training with small weights like Jay suggests. I

lost lots of muscle and connective tissue, so I have to be very careful.

[Guest guest]

Water is terriffic.......For me though 5 years ago I discovered that my insides

did not appreciate getting wet.......but up unttil 2005 I was a regular swimmer

& it felt great.....

[ ] Re: exercise

Just curious and I'm throwing this out in case it hasn't been tried : what about

exercising in water? I know you said you it didn't work for you doing mild

exercise, but the water resistance makes it an effective option... no?

Best regards,

Safrina

>

> > Has anyone felt better with certain moderate exercise and/or massage?

>

> Exercising is generally considered good. However, I felt a lot worse doing

mild exercise and decided to stop after two months (two times a week half an

hour training on several types of equipment). That was after taking AB for about

one year. I have heard the same from some others who had done longer AB course.

> I'm now only doing some muscle training with small weights like Jay suggests.

I lost lots of muscle and connective tissue, so I have to be very careful.

>

[Guest guest]

I feel so much better if I go to the gym and get at least 30 minutes of cardio

and then work with the machines a bit. My pain goes away. I have way more

energy. I just feel good all over. My daughter (14) also has chronic lyme and

while it is sometimes difficult to drag her to the gym, she always thanks me for

doing it because of how good she feels when we are finished.

[ ] Re: exercise

> Has anyone felt better with certain moderate exercise and/or massage?

Exercising is generally considered good. However, I felt a lot worse doing

mild exercise and decided to stop after two months (two times a week half an

hour training on several types of equipment). That was after taking AB for about

one year. I have heard the same from some others who had done longer AB course.

I'm now only doing some muscle training with small weights like Jay suggests.

I lost lots of muscle and connective tissue, so I have to be very careful.

[Guest guest]

> Just curious and I'm throwing this out in case it hasn't been tried : what

about exercising in water? I know you said you it didn't work for you doing mild

exercise, but the water resistance makes it an effective option... no?

>

Hi,

I have heard the suggestion before, but I don't think it will work. I don't have

pain or muscle problems when exercising, I just felt very bad (severe nausea,

fatigue) afterwards. Maybe something else is wrong, but I haven't been able to

figure out what.

[Guest guest]

Swimming is great......For me though my insides revolted from being wet

inside.....for 5 years I reponded well.

[ ] Re: exercise

> Just curious and I'm throwing this out in case it hasn't been tried : what

about exercising in water? I know you said you it didn't work for you doing mild

exercise, but the water resistance makes it an effective option... no?

>

Hi,

I have heard the suggestion before, but I don't think it will work. I don't have

pain or muscle problems when exercising, I just felt very bad (severe nausea,

fatigue) afterwards. Maybe something else is wrong, but I haven't been able to

figure out what.

[Guest guest]

agreed.

[ ] Re: exercise

> Has anyone felt better with certain moderate exercise and/or massage?

Exercising is generally considered good. However, I felt a lot worse doing mild

exercise and decided to stop after two months (two times a week half an hour

training on several types of equipment). That was after taking AB for about one

year. I have heard the same from some others who had done longer AB course.

I'm now only doing some muscle training with small weights like Jay suggests. I

lost lots of muscle and connective tissue, so I have to be very careful.

[Guest guest]

I can't remember if I've properly introduced myself. I just recently

joined. I've been ill for 6 years, 5 undiagnosed. I have Lyme, Babs,

Bartonella. I'm new to the Buhner concept and wanting to add it to abx.

On exercise, I wonder if it matters which TBD we have. I've heard that Babs

is anaerobic and doesn't like exercise. This is interesting to me because

when I went into remission from the pain once, it came back after I started

physical therapy.

I'm curious now that I've been treating Babs for a year if that will happen

again or not. Due to pain and joints and all, I've become totally

deconditioned. I just couldn't handle any exercise. It wasn't until

recently that I could start doing mini-walks and increasing a small bit at a

time.

Carol

[Guest guest]

knotweed - I have the same problem when I exercise. If I do too much, I hit

the wall within 24 hrs. Weak afterwards, but almost dibilitated later.

My understanding is, that's good. The heat of a workout and the sweating

(detoxing too) helps kill the bugs and get rid of them. Seems the most

important thing we can do.

Right now, I try to walk every day after work. I used to be able to get up

in the morning and do a 30 min workout tape; not so much right now.

Are you able to do a little less, but do something every day?

W.

_____

From:

[mailto: ] On Behalf Of knot_weed

Sent: Wednesday, July 15, 2009 1:29 AM

Subject: [ ] Re: exercise

> Just curious and I'm throwing this out in case it hasn't been tried : what

about exercising in water? I know you said you it didn't work for you doing

mild exercise, but the water resistance makes it an effective option... no?

>

Hi,

I have heard the suggestion before, but I don't think it will work. I don't

have pain or muscle problems when exercising, I just felt very bad (severe

nausea, fatigue) afterwards. Maybe something else is wrong, but I haven't

been able to figure out what.

[Guest guest]

Carol-

I used to exercise regularly but once I got Lyme I had to stop as far as the

strenuous work-outs. I have gone back to trying to hike about an hour and 10

minutes a few times a week and find I get really tired after if it is hot

outside, if it is not hot I do so much better, possibly because there is die off

from my body temp getting so high when it is hot outside. Sometimes I might have

to take a nap later in day. My doctor said that when I was going through abx

not to do any strenuous exercise because my body was already taxed from the abx.

Hope that helps.

________________________________

From: Carol Morehart <CarolM123@...>

Sent: Wednesday, July 15, 2009 7:42:25 AM

Subject: RE: [ ] Re: exercise

I can't remember if I've properly introduced myself. I just recently

joined. I've been ill for 6 years, 5 undiagnosed. I have Lyme, Babs,

Bartonella. I'm new to the Buhner concept and wanting to add it to abx.

On exercise, I wonder if it matters which TBD we have. I've heard that Babs

is anaerobic and doesn't like exercise. This is interesting to me because

when I went into remission from the pain once, it came back after I started

physical therapy.

I'm curious now that I've been treating Babs for a year if that will happen

again or not. Due to pain and joints and all, I've become totally

deconditioned. I just couldn't handle any exercise. It wasn't until

recently that I could start doing mini-walks and increasing a small bit at a

time.

Carol

[Guest guest]

I've been following all the exercise and heat comments.

It does seem to be a fine line between killing all the bugs you can,

balanced with feeling " well " . I just seem to be starting to feel well again

- not so weak and shakey.

Attempting a walk or sauna every evening.

W.

_____

From:

[mailto: ] On Behalf Of Diane Libby

Sent: Wednesday, July 15, 2009 2:44 PM

Subject: Re: [ ] Re: exercise

Carol-

I used to exercise regularly but once I got Lyme I had to stop as far as the

strenuous work-outs. I have gone back to trying to hike about an hour and 10

minutes a few times a week and find I get really tired after if it is hot

outside, if it is not hot I do so much better, possibly because there is die

off from my body temp getting so high when it is hot outside. Sometimes I

might have to take a nap later in day. My doctor said that when I was going

through abx not to do any strenuous exercise because my body was already

taxed from the abx. Hope that helps.

________________________________

From: Carol Morehart <CarolM123gmail (DOT) <mailto:CarolM123%40gmail.com> com>

@ <mailto: %40>

Sent: Wednesday, July 15, 2009 7:42:25 AM

Subject: RE: [ ] Re: exercise

I can't remember if I've properly introduced myself. I just recently

joined. I've been ill for 6 years, 5 undiagnosed. I have Lyme, Babs,

Bartonella. I'm new to the Buhner concept and wanting to add it to abx.

On exercise, I wonder if it matters which TBD we have. I've heard that Babs

is anaerobic and doesn't like exercise. This is interesting to me because

when I went into remission from the pain once, it came back after I started

physical therapy.

I'm curious now that I've been treating Babs for a year if that will happen

again or not. Due to pain and joints and all, I've become totally

deconditioned. I just couldn't handle any exercise. It wasn't until

recently that I could start doing mini-walks and increasing a small bit at a

time.

Carol

[Guest guest]

> My understanding is, that's good. The heat of a workout and the sweating

> (detoxing too) helps kill the bugs and get rid of them. Seems the most

> important thing we can do.

yes, I think sweating and increasing circulation is good. However, I don't sweat

at all when exercising (I hardly sweat even in very warm conditions); I just

feel bad. This is completely different from the time before I got Lyme

> Right now, I try to walk every day after work. I used to be able to get up

> in the morning and do a 30 min workout tape; not so much right now.

>

> Are you able to do a little less, but do something every day?

I can do normal walking and biking, no problem; but as soon as I try a real

workout I start feeling very bad within a short time. So I decided to forget

about exercising for now.

[Guest guest]

I am surprised at the amount of exercise people are saying they do, are able to

do.

I've been sick for 20 years, 2 1/2 diagnosed with lyme and treating with Buhner.

Several years into the illness (back when it was called CFIDS), I slowly began

to do some floor stretches (yoga). Gentle, no holding of positions, just gentle

stretching. If I did 20 minutes twice a week I was doing well.

There was a lot of talk about 'post exertional malaise' which was a gentle way

of saying one crashed after exercising. And I surely did if I did anything

beyond the stretching. Not immediately, but the next day or several I was even

more profoundly fatigued.

If I exercise to the point of being out of breath, I am not able to oxygenate

my muscles and they 'burn' right away. This is a low anaerobic threshold. I can

build up slowly, but still am quite limited. Ritchie Shoemaker talks about this

in his book Mold Warriors if memory serves. It was nice to have it explained

because I was aware of it in myself for ages.

As my health improved with treatment, I increased exercise as I could, floor

stretches in winter and swimming in summer. This last spring I finally was able

to walk as exercise (before there was too much fatigue and pain), but only for

about 15 minutes.

I continue to add as much exercise as I can without pushing myself over the

edge. Some days its more than others. I think we each need to listen to our

body, push a little but not too much. The old 'no pain no gain' is self

destructive in this illness, IMHO.

Best wishes, jo

[Guest guest]

Walking and biking are excellent!! Just like Judyjo said, we do what we can.

Push without crashing seems to be the key. Feeling " very bad " is not a plus;

seems like you're getting your exercise by what you're doing. With a couple

of things, I do something for a few minutes and see how I feel 3 days later.

With somethings (like overdoing CC), I don't feel the effects for 1-3 days;

with exercise, I hit the wall right away.

Saunas the same - tried a 20 minute sauna with the temp doing only as high

as 130 - too much for me. Hit the wall right after in the shower.

I just need to go slower!

W.

_____

From:

[mailto: ] On Behalf Of knot_weed

Sent: Thursday, July 16, 2009 1:57 AM

Subject: [ ] Re: exercise

> My understanding is, that's good. The heat of a workout and the sweating

> (detoxing too) helps kill the bugs and get rid of them. Seems the most

> important thing we can do.

yes, I think sweating and increasing circulation is good. However, I don't

sweat at all when exercising (I hardly sweat even in very warm conditions);

I just feel bad. This is completely different from the time before I got

Lyme

> Right now, I try to walk every day after work. I used to be able to get up

> in the morning and do a 30 min workout tape; not so much right now.

>

> Are you able to do a little less, but do something every day?

I can do normal walking and biking, no problem; but as soon as I try a real

workout I start feeling very bad within a short time. So I decided to forget

about exercising for now.