PT

[Guest guest]

Thanks for the info. 5 pounds!! Sounds great to me!! I could afford to lose

5 pounds times 6.

Thankyou,

[Guest guest]

Prinny328@... wrote:

> From: Prinny328@...

>

>

> Has anyone had success with physical therapy? Also my doctor is putting me on

> a special diet that is supposed to help Lyme. She said no sugar, no carbs,

> and no nutersweet. Basically vegetables, lean meats, and yogurt. (She said I

> can have 1 piece of fruit a day. Has anyone tried this diet?

> Thanks,

>

>

> Hi :

This sounds similar to the diet that I've been on for about 6 weeks now. It's

called The Zone. There's a book by Barry Sears, MD called " Enter the Zone " that

lays out the science behind it. I think it is definitely helping my aches and

pains, as well as my brain fog. I can tell when I have cheated and had a lot of

carbs -- the next day I am much worse. However, the Zone diet doesn't really

limit

fruits at all. Otherwise it sounds similar -- very little refined carbs, lots of

lean protein, fruits and veggies, lots of water. You might want to get the book

and check it out. As an added bonus, I have lost 5 pounds -- but two full inches

off my tummy and about 3/4 of an inch off my hips! This tells me the weight loss

was fat, not water. I didn't realize I'd lost any weight and actually just

measured myself out of despair. (The book said that it would take about 2 weeks

to

see any weight loss, but I gave up weighing myself after 3 weeks of no changes.

Was I surprised!) I must say, it was effortless and I have been eating very

good

healthy food in good quantities and not feeling deprived. And the improvement in

my mental function, energy level and joint pain has been REALLY worth it!

By the way, in you other post you mention getting shaky after exertion and

getting

better after eating. That could be a blood-sugar crash, which this diet will

also

prevent. (No refined carbs + lots of protein = very steady burning of body fat

and

very little fluctuation in blood sugar & insulin levels.)

Be sure you get the book " Enter the Zone " and NOT his second book, " Mastering

the

Zone. " That is a follow up book and is almost impossible to understand if you

haven't read the first one.

I'm always encouraged to hear about a doctor who knows anything about nutrition.

Take care & be well,

Jean

[Guest guest]

,

It sounds like your doctor is great! She's right, with that combo of

treatment you should feel some improvement. I also think the change in you

diet will really help your head aches. I had headaches everyday for over a

year, sometimes they were very mild and some days I had migraines. After

changing my diet the headaches are completely gone -- well, except when I

cheat. It turns out that all the abx had messed up my digestive tract

(Candida) to the point that I developed a lot of food allergies. Wheat is the

worst culprit! Did she give you an elimination diet to find out what foods

are bothering you? If you're not supposed to have dairy I now a great treat

that's dairy free. It's Rice Dream ice cream and you can get it at a health

food store. It's kept me from cheating, you need something sweet every now

and then! Let me know if you want to talk about recipes.

As for the PT, I went and it really helped me get my strength back. I was

sore, but that only lasted a week. Unfortunately, I had a relapse afterward,

but I recommend it highly! Even now I do daily stretching exercises, and once

I'm alittle better I want to go back to PT. My PT didn't include the massage,

but I wish it had. My IV home care nurse suggested it. Deep tissue massages

break up all the knots and increases the blood flow thru your body.

It sounds like you're in really good hands,

[Guest guest]

A

>

>This sounds similar to the diet that I've been on for about 6 weeks now. It's

>called The Zone.

I'm really glad to hear someone recommending the Zone. I've been on this

diet for a long time and I've been trying to tell as many people as I can

about it. It really makes a difference. My husband and I have both felt so

much better on this. I really recommend it. The first book, " The Zone " ,

was almost a physiological treatise. It takes some determination to read

it from the beginning and not just skip to the diet in the back, but it is

well worth reading. There's a lot of information and it explains a lot of

what's happening in your body...something that we're all interested in and

should know. Lorraine

[Guest guest]

Yes! In fact, I am on it now and it definitely not only works for weight loss,

it

helps the yeasties too!

Alison

Scully wrote:

> From: Scully <jscully@...>

>

> Prinny328@... wrote:

>

> > From: Prinny328@...

> >

> >

> > Has anyone had success with physical therapy? Also my doctor is putting me

on

> > a special diet that is supposed to help Lyme. She said no sugar, no carbs,

> > and no nutersweet. Basically vegetables, lean meats, and yogurt. (She said

I

> > can have 1 piece of fruit a day. Has anyone tried this diet?

>

> > Thanks,

> >

> >

> > Hi :

>

> This sounds similar to the diet that I've been on for about 6 weeks now. It's

> called The Zone. There's a book by Barry Sears, MD called " Enter the Zone "

that

> lays out the science behind it. I think it is definitely helping my aches and

> pains, as well as my brain fog. I can tell when I have cheated and had a lot

of

> carbs -- the next day I am much worse. However, the Zone diet doesn't really

limit

> fruits at all. Otherwise it sounds similar -- very little refined carbs, lots

of

> lean protein, fruits and veggies, lots of water. You might want to get the

book

> and check it out. As an added bonus, I have lost 5 pounds -- but two full

inches

> off my tummy and about 3/4 of an inch off my hips! This tells me the weight

loss

> was fat, not water. I didn't realize I'd lost any weight and actually just

> measured myself out of despair. (The book said that it would take about 2

weeks to

> see any weight loss, but I gave up weighing myself after 3 weeks of no

changes.

> Was I surprised!) I must say, it was effortless and I have been eating very

good

> healthy food in good quantities and not feeling deprived. And the improvement

in

> my mental function, energy level and joint pain has been REALLY worth it!

>

> By the way, in you other post you mention getting shaky after exertion and

getting

> better after eating. That could be a blood-sugar crash, which this diet will

also

> prevent. (No refined carbs + lots of protein = very steady burning of body fat

and

> very little fluctuation in blood sugar & insulin levels.)

>

> Be sure you get the book " Enter the Zone " and NOT his second book, " Mastering

the

> Zone. " That is a follow up book and is almost impossible to understand if you

> haven't read the first one.

>

> I'm always encouraged to hear about a doctor who knows anything about

nutrition.

>

> Take care & be well,

> Jean

>

> ------------------------------------------------------------------------

>

[Guest guest]

From: "Mark Holmes" <mholmes@...>

"...........I'm curious as to what sort of experiences some of you have had when going to a physical therapist......."

Hi Mark.........my past and present experience with PT'ists is that I have to let them know that I know inflammatory arthritis' need to be treated differently than osteoarthritis. It amazes me that, like many doctors, the pt'ists don't like their judgment questioned - I've switched therapists because of this, and I'd do it again.

I know that if I do (for instance) 30 reps for my shoulder that I'll not be able to move for 3 days! You have to start out sooooo slow, and build up. I'm having a horrible time with my arms and shoulders, especially my left (non-predominant) side, and I flat refuse to do the amount of reps my therapist wants me to do. She thinks it's "all in my head" and that I'm being a baby. Slowly, I'm educating her, I think!

Anyway, my main focus at present is my knees and getting up walking again, so the arms and shoulders are kinda on the back burner.......I'm doing the barest range of motion I can get away with!

Well, this probably doesn't address your questions and concerns, but it's my experience.

Be well............

[Guest guest]

Sometimes it helps to ask for a therapist who has worked a lot with RA, FMS,

etc., or who " knows " /specializes in the problem. I had one that was great

for FMS, her substitute wasn't.

M.

[Guest guest]

I just saw the sacrilitis (sp?) post mention that her primary doc thinks PT is

not necessary.

I am in PT once or twice a month and firmly believe its necessary for the PA,

especially when flaring. It does help. May not need to be a long term thing but

that depends on the individual too.

So. If you feel you need PT or you have another doctor that feels you need it,

ask your Rheumy. THey most likely will refer you.

Good luck!

LeAnn Cayer & Furbrats Blossom, Meriko & Merlin with Frosty

Heart Bandits American Eskimo Dog Rescue

Oklahoma Referral Chapter

Railroad Coordinator

www.heartbandits.com

" I thank God for my handicaps, for, through them, I have found myself, my work,

and my God. " Helen Keller

[Guest guest]

I am getting

> where I can't work any more and just want to sleep....any advice?

Sorry you're in such pain Physical therapy, maybe? My back was

(and still is) so tight from RA and OA and a herniated disk that

it was painful to walk and sit and stand, etc. PT has helped and I'm

hopeful that the more they work on the tight muscles, the better it will

get. I hope you can get some relief...

[Guest guest]

I am the 53 year old from Mi, my nerve doctor can't see me till sept 1, so my

family doctor is sending me to PT. He really does not know anything about CMT.

does anyone out there have any luck with PT???

thanks

[Guest guest]

I've had good results from PT for all kinds of stuff. As a kid and teen it was

to stretch my CMT muscles (done manually). Have also had PT from back surgery,

rotator cuff repair, and was also set up with an aquatic exercise program which

I continue to do.

Gretchen

[Guest guest]

Haven't had any luck with docs, I'm still looking, I'm 67.

Geri

[Guest guest]

I would love to be able to have PT but $$ I don't have.

Geri

And I now feel stronger than ever that knowing has not, at least at this

point, changed anything. We are still on the same track of PT and exercise that

we were doing before 'knowing' . the only difference now is we know it is type 2

vs type 1. Going to bring my son to a physiatrist in a couple weeks and I have

the feeling he will want is to have him take the genetic test. On the fence as I

said earlier 'knowing isn't changing anything'.

Lori

[Guest guest]

I never understood how important stretching was until I started PT. I really

can't believe how much PT has helped me. My PT even told me last week that she

is seeing some muscle mass around my knees and that they don't look as concave

as they were. I cannot stress enough how much this has helped me.

My dr's never recommended it and when you find the right one who really

understands nerve disorders, it is worth its weight in gold! Also, it has not

taken that long to see results. When I first started I could not do one rotation

on the bike and I could not get started without them starting it for me. Now, I

can start it myself and do it for 30 seconds for 4 sets.

I know this does not sound like much to those of you that bike, walk,

exercise.... but for those of us who are severly affected, this is a big

improvement! To think, bike riding used to be my major mode of transportation,

and now I am excited that I can do 30 seconds!

Jackie

[Guest guest]

I'm with Geri on this. PT might be great if it didn't involve a co-pay for every

visit. I recently tried PT for a neck condition, but found that all I learned

were new ways to make the condition worse. After 3 sessions I stopped going.

I used to be a strong advocate for yoga and exercise. I guess I still am, but

for me, the exercise MUST be very gentle. I have found that aqua jogging works

best. Zero impact on the bones. But in the last year I find that I've been

getting more tired with less exercise.

I eventually realized that stretching just made the nerve pain worse. It's hard

to motivate when you feel worse, not better, after a session.

O

I would love to be able to have PT but $$ I don't have.

Geri

And I now feel stronger than ever that knowing has not, at least at this

point, changed anything. We are still on the same track of PT and exercise

that we were doing before 'knowing' . the only difference now is we know it

is type 2 vs type 1. Going to bring my son to a physiatrist in a couple

weeks and I have the feeling he will want is to have him take the genetic

test. On the fence as I said earlier 'knowing isn't changing anything'.

Lori

[Guest guest]

O,

Seems like your PT let you down. Since you are already aqua jogging in a pool,

did you know you can do neck exercises there as well? Of couse you will need to

sit on a step so your neck is fully immersed. Then VERY slowly and gently move

your neck in head circles - side to back to other side to front, then reverse

the direction. I do this as a warm up before the cardio.

Hopefully your pool is hot. The one I use is 96 F, the standard for theraputics.

If you ever feel like a road trip, come on up and I'll show you.

Gretchen

[Guest guest]

O,

Tell us about your exercises...

Thanks

Geri

I'm with Geri on this. PT might be great if it didn't involve a co-pay for every

visit. I recently tried PT for a neck condition, but found that all I learned

were new ways to make the condition worse. After 3 sessions I stopped going.

I used to be a strong advocate for yoga and exercise. I guess I still am, but

for me, the exercise MUST be very gentle. I have found that aqua jogging works

best. Zero impact on the bones. But in the last year I find that I've been

getting more tired with less exercise.

I eventually realized that stretching just made the nerve pain worse. It's hard

to motivate when you feel worse, not better, after a session.

O

[Guest guest]

What really works for me is the aqua jogging. I get in a deep water pool and

just run. I move a little water with my hands, but mostly I take long

strides. I have to be very careful that I don't touch bottom, I'm afraid

I'll do some damage and not know it. I'm currently doing about 400 yards per

session. Sometimes doing this really ennergizes the nerves in my legs and

feet, to the point where I just hang on the side and wait for it to subside.

But afterward I think it makes the nerve pain less as a result.

I do an equal part of crawl stroke, just to break up the routine, swim 100,

jog 150, swim 100, jog 150, etc. I have to be very gentle with the crawl

stroke. My upper body strains so easily, and if I put too much into it, my

arms get tingly afterwards.

When I stretch, I do neck rolls like Gretchen suggested. Then I work on my

hamstrings, someday I want to touch my toes again. But this is the stretch I

think that makes the nerve pain in my feet worse. Then I lay on my back and

pull my knees to my chest, one at a time, then both together. Maybe a twist

if my back feels up to it. I used to have a full yoga routine that I did,

but now I've scaled it back to the few that are gentlest for me.

All I can say is pay attention to how your body is reacting to the motion

that you're doing. O

[Guest guest]

O,

Stretching your hamstrings causes you more nerve pain?

The 2 stretches I do 3 or 4 times a week (I try daily but I always get

distracted) are a hamstring stretch and a calves stretch. These are pics of the

2 stretches I do:

https://hvelink.saintlukeshealthsystem.org/library/healthguide/en-us/images/medi\

a/medical/hw/hwkb17_055.jpg

http://64.143.176.9/library/healthguide/en-us/images/media/medical/hw/hwkb17_077\

..jpg

When I stretch my hamstrings well I don't feel any nerve pain. In fact,

sometimes it feels really good and it's almost like I can feel my feet a little

more than normal. I guess we could have different stretches for the hamstrings.

-Rob

>

> What really works for me is the aqua jogging. I get in a deep water pool and

> just run. I move a little water with my hands, but mostly I take long

> strides. I have to be very careful that I don't touch bottom, I'm afraid

> I'll do some damage and not know it. I'm currently doing about 400 yards per

> session. Sometimes doing this really ennergizes the nerves in my legs and

> feet, to the point where I just hang on the side and wait for it to subside.

> But afterward I think it makes the nerve pain less as a result.

>

> I do an equal part of crawl stroke, just to break up the routine, swim 100,

> jog 150, swim 100, jog 150, etc. I have to be very gentle with the crawl

> stroke. My upper body strains so easily, and if I put too much into it, my

> arms get tingly afterwards.

>

> When I stretch, I do neck rolls like Gretchen suggested. Then I work on my

> hamstrings, someday I want to touch my toes again. But this is the stretch I

> think that makes the nerve pain in my feet worse. Then I lay on my back and

> pull my knees to my chest, one at a time, then both together. Maybe a twist

> if my back feels up to it. I used to have a full yoga routine that I did,

> but now I've scaled it back to the few that are gentlest for me.

>

> All I can say is pay attention to how your body is reacting to the motion

> that you're doing. O

>

>

>

[Guest guest]

It seems that most folks here have had some pretty good luck with PT. It seems

there must be a wide variation in therapists, their skills, and their knowledge

about neuropathies. My experience has not been good with PT. Despite this, I'd

love to find a good therapist and start going because I want to stay moving and

active.

My experience is that I tend to have bad injuries that end up with surgery that

occur when I'm in PT. Not during the session, but that evening or the next day,

when the muscles I depend on to keep me stable are weak from the workout. I have

also noticed that since I don't feel pain right, a lot of the excercises they've

asked me to do can actually be dangerous for me. My last ankle rehab had a 1/2

ball balance excercise and I was to allow my calf to stretch " until I felt it "

and then hold it there. Well, of course, I never " felt " it and was ripping out

my newly sewn together connective tissue. He put a TENS (electric shocks to

stimulate blood flow) unit on and turned it up until I " felt it " , which I never

did. At a setting of 50 he was astonished that I wasn't on the ceiling and said

he'd never seen anyone tolerate it higher than 10. I never felt a thing. He

turned it down to 30 to be on the safe side.

The other thing I find curious is that whenever I've done hamstring stretches I

can feel the entire sciatic nerve starting to go numb and it may not come back

for days or weeks. I'm really careful NOT to do those stretches so I find it

fascinating that most of you do them religiously. I wonder what is different?

Holli

>

> I am the 53 year old from Mi, my nerve doctor can't see me till sept 1, so my

family doctor is sending me to PT. He really does not know anything about CMT.

does anyone out there have any luck with PT???

> thanks

>

[Guest guest]

On 7/15/09 Holli wrote:

" The other thing I find curious is that whenever I've done hamstring

stretches I can feel the entire sciatic nerve starting to go numb and it may

not come back for days or weeks. I'm really careful NOT to do those

stretches so I find it fascinating that most of you do them religiously. I

wonder what is different? "

Holli, I think you've described a lot of what I experience. I've done

sciatic stretches that completely numbed my foot/ankle area.

I wonder if this is an area of CMT1 vs CMT2 differences? I'm CMT2. O

[Guest guest]

,

Hmmmm. I'm CMT1, guess that doesn't explain it.

Holli

>

> " The other thing I find curious is that whenever I've done hamstring

> stretches I can feel the entire sciatic nerve starting to go numb and it may

> not come back for days or weeks. I'm really careful NOT to do those

> stretches so I find it fascinating that most of you do them religiously. I

> wonder what is different? "

>

> Holli, I think you've described a lot of what I experience. I've done

> sciatic stretches that completely numbed my foot/ankle area.

>

> I wonder if this is an area of CMT1 vs CMT2 differences? I'm CMT2. O

>

>

>

[Guest guest]

At the place where I did PT....after I finished my alotted sessions, I am able

to pay $35 per month and use the machines twice a week.  You might look into

something like that.  They design a plan for you to use on my own.

What I've found though is that my legs are extremely tired for several days

afterwards. Has anyone else experienced that?  I've only been going on my own

about 3 weeks. But, I went with their assistance about 3 months with a two week

break in between.

Carl in Ohio

[Guest guest]

Carl,

Just a thought from my experience with PT and individual programs with machines.

You said you go twice a week. I am supposing this is for an hour each time.

Which is what our standard is here.

Perhaps this is too much at once and why you experience the fatigue for days

after.

My suggestion is to go 3-4 times a week, but cut down on the length of time you

spend. Like 1/2 hour, or 20 min, or 15 min, etc. And perhaps change the time -

like if you go in the afternoon, try the morning, or the lunch hour. My body has

more energy in the morning and noon till 2, then a short decline, then again an

energy streak about 7 pm. This is all from my experience.

Gretchen

[Guest guest]

Be careful that you aren't over-exercising! The nerve energy may not be there

to help the muscles recuperate and if the muscles can't recuperate you risk

loosing whatever strength you have in them. My Pt said it's a balance between

exercising to try to at least maintain what you have and exercising too much and

damaging the muscle beyond repair.

>

> At the place where I did PT....after I finished my alotted sessions, I am able

to pay $35 per month and use the machines twice a week.  You might look into

something like that.  They design a plan for you to use on my own.

>

> What I've found though is that my legs are extremely tired for several days

afterwards. Has anyone else experienced that?  I've only been going on my own

about 3 weeks. But, I went with their assistance about 3 months with a two week

break in between.

>

> Carl in Ohio

>

>

>

>

>

>

>