Re: Gayle Mobility and Pain Management

[Guest guest]

Hi Gayla,

I hope you rested well last night too. Unfortunately I didn't. And then this

time change really through me off. I'm a very early riser as it is, so I got up

at 5 the new time this morning. Usually I'm up between 4:30 and 6, but I had not

gone to bed until the time changed last night. So I got a whopping 2 hrs sleep.

lol I'll catch a nap in a while. I won't last much longer than that without one.

I've never ever heard of anyone having fibro in just their legs. How were you

able to get dx'd with just having symptoms there? I've always known that you

have to meet the CDC's criteria of having 11 of the 18 tender points active in

order to be dx'd. Also with CFS, you have to have relentless fatigue lasting 3

months or more, or maybe that is 6 months. I can't remember and it's been a

while since I have done any reading on CFS. I have both of them. My legs are

troubled the most by Fibro, but they aren't the only thing affected. My entire

body is affective. You and I weigh about the same. I gain right at 100 lbs

during the first 4 yrs of being sick. Just due to the fatigue and pain and

diminished mobility. I will tell you that your lack of mobility is NOT due to

your weight. Granted the weight doesn't help, but over the past 12 yrs, I have

slowly declined in the mobility department and kind of rapidly over the past 4-5

yrs. When I moved into this home I'm in back in May of 2004, it had a beautiful

yard, lots of flowers, I didn't have to plant a thing as there was no where to

plant anything. lol I kept up the lawn by watering. I couldn't mow, but I could

water it everyday and the flowers too. The very next summer I wasn't able to do

it anymore Gayla. I tried doing it using my walker but it was just too big of a

task, I couldn't do it. Then last year, it came to the point that I can't even

make it to the car in the driveway if I have not come straight from sitting in

the house, being rested, and heading to the car. Otherwise I have to use my

walker to get to the car and there are some days I do have to use the walker to

get there. I don't drive anymore. I've driven once in over a year. My reflexes

aren't good and then the pain meds I'm on, even though they don't drug me as I'm

use to them, it's like doing things on " auto pilot " and after wards everything

I've done as far as driving, shopping or what ever is a fog. Part of this is the

brain fog from fibro and cfs, the rest is solely from the narcotics. I do have

an electric scooter and am getting a lift for it installed in our truck in 2

wks. Then I'll be able to go more places. I love that scooter! I can't go to the

store without using the scooter in the store, so the number of places I go is

very limited. Like to the grocery store or Walmart. That's it, besides the dr.'s

office which I use my walker to get to. And on bad days, we use one of the wheel

chairs there. It just depends. My arms have also lost a lot of strength too. I'm

just a mess, but a good mess

Please don't let anyone else blame your weight for your lack of mobility either,

because that isn't the problem. If you didn't have fibro or RSD, you'd walk just

fine. I did. As I said, it doesn't help us and we'd hurt less probably if some

of the weight was off and perhaps we might have a tad more mobility, but not

enough to be noticeable.

Hang in there Gayle, it sounds like we are both in the same boat in some ways.

We can lean on each other for support!

Hugs,

Tommie

PS. Have a wonderful day!

Tommie and others - I hope last night brought you some good rest. Hugz to you

today. I too, have fibro in my legs. I also have RSD(Reflex Symathetic

Dystrophy) in my arm and Lipedema in my legs. A few weeks ago I took a really

bad fall, and now I am trying to decipher if I have RSD in my left leg, or if I

am still feeling the results of that fall. Basically, I can't walk anymore. I am

heavy, weighing in recently at 316 lbs. I bought a walker and a wheelchair -

that is how desparate I am to keep from giving in to this pain and staying home.

However, I still seem to stay home more than I should - because what I would

like to do is lay in bed and sleep most of the time. The drugs make me feel so

lathargic. I don't want to give up walking right now, I want to try to keep

going (easier said than done), but I wished there was an easy way to tell if

this is RSD in my legs, or what. I am trying to wait as long as I can before I

talk to my doctor about it.

Gayla

http://chronicpain-byladyfrog.com

.

[Guest guest]

Tommie, Thank you for your email. You are very inspiring to me! Now, let me

clarify that I actually have 16 of the 18 trigger spots for Fibro. It's just

that this week, it's only my legs that are hurting. I don't know if it is from

Fibro, or if the RSD is moving from my arm to my left leg after a fall I took

last week, or if it is the lipedema (which is also called Painful Fat Syndrome -

no kidding). All I can say is that I can hardly walk.

Today, when my husband asked if I wanted to go to the " Home show " , he honestly

had a look on his face like " I know she is going to say no " , but instead I said,

" if you want to push me around in the wheelchair, I'd love to go. " We had a

wonderful time! We laughed, and he teased me and he was so happy that he could

have some company while he waundered around the fairgrounds pushing me. He

would park me at the side of some demonstration and get closer to see what he

wanted to see...it was so great to see him smiling, talking to people and not

feeling " stuck at home. "

On the other hand, I too felt happy for myself. I was able to see things that I

wouldn't have been able to, and it was a beautiful day to go over there. I am

thrilled with my choice to get a wheel chair so that we can go to " events "

together! I have a walker (named Hugo - because that is the kind he is), and

use that for short trekks into the store. I feel a sense of freedom to be out

and about and seeing things - I have kept myself secluded at home with the

exception of a few trips out to garage and estate sales with some friends on the

week-ends.

So, again, I am so glad I joined this group and am learning to get a little

braver about things!

Gayla

the Lady Frog

Gayla

http://chronicpain-byladyfrog.com

Re: Gayle Mobility and Pain Management

Hi Gayla,

I hope you rested well last night too. Unfortunately I didn't. And then this

time change really through me off. I'm a very early riser as it is, so I got up

at 5 the new time this morning. Usually I'm up between 4:30 and 6, but I had not

gone to bed until the time changed last night. So I got a whopping 2 hrs sleep.

lol I'll catch a nap in a while. I won't last much longer than that without one.

I've never ever heard of anyone having fibro in just their legs. How were you

able to get dx'd with just having symptoms there? I've always known that you

have to meet the CDC's criteria of having 11 of the 18 tender points active in

order to be dx'd. Also with CFS, you have to have relentless fatigue lasting 3

months or more, or maybe that is 6 months. I can't remember and it's been a

while since I have done any reading on CFS. I have both of them. My legs are

troubled the most by Fibro, but they aren't the only thing affected. My entire

body is affective. You and I weigh about the same. I gain right at 100 lbs

during the first 4 yrs of being sick. Just due to the fatigue and pain and

diminished mobility. I will tell you that your lack of mobility is NOT due to

your weight. Granted the weight doesn't help, but over the past 12 yrs, I have

slowly declined in the mobility department and kind of rapidly over the past 4-5

yrs. When I moved into this home I'm in back in May of

2004, it had a beautiful yard, lots of flowers, I didn't have to plant a thing

as there was no where to plant anything. lol I kept up the lawn by watering. I

couldn't mow, but I could water it everyday and the flowers too. The very next

summer I wasn't able to do it anymore Gayla. I tried doing it using my walker

but it was just too big of a task, I couldn't do it. Then last year, it came to

the point that I can't even make it to the car in the driveway if I have not

come straight from sitting in the house, being rested, and heading to the car.

Otherwise I have to use my walker to get to the car and there are some days I do

have to use the walker to get there. I don't drive anymore. I've driven once in

over a year. My reflexes aren't good and then the pain meds I'm on, even though

they don't drug me as I'm use to them, it's like doing things on " auto pilot "

and after wards everything I've done as far as driving, shopping or what ever is

a fog. Part of this is the brain fog

from fibro and cfs, the rest is solely from the narcotics. I do have an

electric scooter and am getting a lift for it installed in our truck in 2 wks.

Then I'll be able to go more places. I love that scooter! I can't go to the

store without using the scooter in the store, so the number of places I go is

very limited. Like to the grocery store or Walmart. That's it, besides the dr.'s

office which I use my walker to get to. And on bad days, we use one of the wheel

chairs there. It just depends. My arms have also lost a lot of strength too. I'm

just a mess, but a good mess

Please don't let anyone else blame your weight for your lack of mobility either,

because that isn't the problem. If you didn't have fibro or RSD, you'd walk just

fine. I did. As I said, it doesn't help us and we'd hurt less probably if some

of the weight was off and perhaps we might have a tad more mobility, but not

enough to be noticeable.

Hang in there Gayle, it sounds like we are both in the same boat in some ways.

We can lean on each other for support!

Hugs,

Tommie

PS. Have a wonderful day!

Tommie and others - I hope last night brought you some good rest. Hugz to you

today. I too, have fibro in my legs. I also have RSD(Reflex Symathetic

Dystrophy) in my arm and Lipedema in my legs. A few weeks ago I took a really

bad fall, and now I am trying to decipher if I have RSD in my left leg, or if I

am still feeling the results of that fall. Basically, I can't walk anymore. I am

heavy, weighing in recently at 316 lbs. I bought a walker and a wheelchair -

that is how desparate I am to keep from giving in to this pain and staying home.

However, I still seem to stay home more than I should - because what I would

like to do is lay in bed and sleep most of the time. The drugs make me feel so

lathargic. I don't want to give up walking right now, I want to try to keep

going (easier said than done), but I wished there was an easy way to tell if

this is RSD in my legs, or what. I am trying to wait as long as I can before I

talk to my doctor about it.

Gayla

http://chronicpain- byladyfrog. com

..

[Guest guest]

Good Morning Gayla!

Assuming you'll be up and on here this morning. lol My email is the first thing

I do in the mornings, even before making coffee most of the time. I come to

check and see what goodies I have here It keeps me linked to the outside

world, or should I say to others lives as not many of us get out much so I don't

usually hear about whats going on outside each of our homes. lol But that's ok,

you all are a great company for me. I don't know what I'd do with out my groups!

Yeah, I do know, I'd be lost. lol

I'm glad I inspire you. You inspire me as well. I loved reading about your

outing this weekend. That was great. Fantastic, awesome!! I'm so happy for you.

I've only been out twice with my scooter and Danny and lifted it onto the

truck, and it weighs almost 300 lbs. We went to the Mall the first time. It was

a test run to see if Danny and could handle the scooter. We had bought

tickets to see Brad Paisley, my first concert ever! I'm so glad it worked out or

we would have been out the price of a ticket. I hadn't been to the Mall in

nearly 4 yrs. I was so excited. I know I went through the Mall with a constant

smile on my face. lol Danny was excited to see me so happy, it put a smile on

his face too. And since it all worked out, I was able to go to the concert too

and that turned out VERY well, everything went so smooth. I loved the concert as

well and Carry Underwood was there as his opener. Well actually there was a

singer named Josh Owen I think was his name who actually opened, then Carry was

up next. I had a great time despite everyone standing and me sitting. lol

Couldn't see well, but Brad did have 2 big screens on either side of the stage

so all could see close up. That worked for me!

I never heard of PFS. Or Lipedema either. From what someone told me once, RSD

doesn't spread? Neuropathy does though. You know what that is right?

WOW you have Fibro bad to have 16 of the 18 tender triggers. Sheesh girl! Do you

also have Osteoarthritis? I do, in several places on my body. Gayla, what is

your age range, if you don't mind me asking? I'm to be 44 this year and

climbing. lol

It sounds like your hubby is very supportive. I'm glad to read this as well. It

helps us so much when our loved ones are supportive and help us out willingly.

My family is at odds with helping me. Some days they are more willing than

others, I get attitude a lot. An impatient " whaaat? " , or " do I have to do it

right now? " . My son will tell me, " you just want, want, want " . I don't get much

better from Danny sometimes too. I've learned to ignore it, although sometimes

it does hurt my feelings. I understand I am a burden to them and it's not going

to get better, only worse as time goes on. I just hope they never put me in a

nursing home. I do try and do as much for myself as I can and I even cook when I

can and sometimes when I just don't feel I can make it through it and that is

while sitting down to do it. I can't stand up to cook anymore. Last nights

dinner bout killed me. lol I was sitting, but it was a dinner that I had to keep

getting up during cook time and omgosh, I felt like a yo-yo and the pain was

horrible, but I made it through it. I love to cook and hate that I can't

anymore, like I use to.

I bet you did feel happy for yourself this weekend and you should have. Can you

imagine the amount of endorphines that were running through your brain? Your

brain is probably still trying to recover from the shock. It's a good thing!

I hope you had a great Monday and Tuesday too. Talk with you soon.

Hugs,

Tommie

Re: Gayle Mobility and Pain Management

Hi Gayla,

I hope you rested well last night too. Unfortunately I didn't. And then this

time change really through me off. I'm a very early riser as it is, so I got up

at 5 the new time this morning. Usually I'm up between 4:30 and 6, but I had not

gone to bed until the time changed last night. So I got a whopping 2 hrs sleep.

lol I'll catch a nap in a while. I won't last much longer than that without one.

I've never ever heard of anyone having fibro in just their legs. How were you

able to get dx'd with just having symptoms there? I've always known that you

have to meet the CDC's criteria of having 11 of the 18 tender points active in

order to be dx'd. Also with CFS, you have to have relentless fatigue lasting 3

months or more, or maybe that is 6 months. I can't remember and it's been a

while since I have done any reading on CFS. I have both of them. My legs are

troubled the most by Fibro, but they aren't the only thing affected. My entire

body is affective. You and I weigh about the same. I gain right at 100 lbs

during the first 4 yrs of being sick. Just due to the fatigue and pain and

diminished mobility. I will tell you that your lack of mobility is NOT due to

your weight. Granted the weight doesn't help, but over the past 12 yrs, I have

slowly declined in the mobility department and kind of rapidly over the past 4-5

yrs. When I moved into this home I'm in back in May of

2004, it had a beautiful yard, lots of flowers, I didn't have to plant a thing

as there was no where to plant anything. lol I kept up the lawn by watering. I

couldn't mow, but I could water it everyday and the flowers too. The very next

summer I wasn't able to do it anymore Gayla. I tried doing it using my walker

but it was just too big of a task, I couldn't do it. Then last year, it came to

the point that I can't even make it to the car in the driveway if I have not

come straight from sitting in the house, being rested, and heading to the car.

Otherwise I have to use my walker to get to the car and there are some days I do

have to use the walker to get there. I don't drive anymore. I've driven once in

over a year. My reflexes aren't good and then the pain meds I'm on, even though

they don't drug me as I'm use to them, it's like doing things on " auto pilot "

and after wards everything I've done as far as driving, shopping or what ever is

a fog. Part of this is the brain fog

from fibro and cfs, the rest is solely from the narcotics. I do have an

electric scooter and am getting a lift for it installed in our truck in 2 wks.

Then I'll be able to go more places. I love that scooter! I can't go to the

store without using the scooter in the store, so the number of places I go is

very limited. Like to the grocery store or Walmart. That's it, besides the dr.'s

office which I use my walker to get to. And on bad days, we use one of the wheel

chairs there. It just depends. My arms have also lost a lot of strength too. I'm

just a mess, but a good mess

Please don't let anyone else blame your weight for your lack of mobility

either, because that isn't the problem. If you didn't have fibro or RSD, you'd

walk just fine. I did. As I said, it doesn't help us and we'd hurt less probably

if some of the weight was off and perhaps we might have a tad more mobility, but

not enough to be noticeable.

Hang in there Gayle, it sounds like we are both in the same boat in some ways.

We can lean on each other for support!

Hugs,

Tommie

PS. Have a wonderful day!

Tommie and others - I hope last night brought you some good rest. Hugz to you

today. I too, have fibro in my legs. I also have RSD(Reflex Symathetic

Dystrophy) in my arm and Lipedema in my legs. A few weeks ago I took a really

bad fall, and now I am trying to decipher if I have RSD in my left leg, or if I

am still feeling the results of that fall. Basically, I can't walk anymore. I am

heavy, weighing in recently at 316 lbs. I bought a walker and a wheelchair -

that is how desparate I am to keep from giving in to this pain and staying home.

However, I still seem to stay home more than I should - because what I would

like to do is lay in bed and sleep most of the time. The drugs make me feel so

lathargic. I don't want to give up walking right now, I want to try to keep

going (easier said than done), but I wished there was an easy way to tell if

this is RSD in my legs, or what. I am trying to wait as long as I can before I

talk to my doctor about it.

Gayla

http://chronicpain- byladyfrog. com

.

[Guest guest]

In a message dated 3/11/07 10:50:54 PM Central Standard Time,

ladyfrogvintagejewelry@... writes:

I feel a sense of freedom to be out and about and seeing things - I have kept

myself secluded at home with the exception of a few trips out to garage and

estate sales with some friends on the week-ends.

So, again, I am so glad I joined this group and am learning to get a little

braver about things!

Gayle, HURRAH for you!!!! It does give us back a bit of our self assurance,

doesn't it to be able to get out and about. I'm so glad you could go with

your hubby and glad to have you here with us.

HUGS,

Cheryl

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

Hi Tommie - Thanks for writing to me! I don't get up very well in the morning.

I take that night time pain med, and it knocks me for a loop, plus, I don't

sleep well (like I am sure everyone here is in the same boat), so speaking of

yo-yo's - I am up and down all night.

I am 55 years old. I have two daughters ages 30 & 33. Both are married with

children. The 30 year old has two sons and the 33 year old has three daughters!

I love my grandkids, and they are really a huge motivator for me to try to get

healthier.

Today I heard from the sleep disorder clinic, and they are reporting I have

sleep apnea. Apparently I stop breathing approximately 61.5 times per hour.

Can you imagine? I had no clue - no wonder I can't sleep well, my poor brain is

trying to keep me awake and breathing! Basically what will happen now is that I

will go back to the clinic and spend the night. I will be hooked up all over

again only this time I will also be hooked up to some sort of oxygenator type

small device. It will blow air and oxygen into my mouth and keep me breathing

while I sleep. Then, they will teach me to use the machine and I will bring it

home. I don't think it is a big deal.

I loved getting out on Sunday, and even though I was pretty tired when I got

home, I am looking forward to going again. Tommie, it sounds like you are

really much more limited than I am. I can actually walk, but not far - only

about 500 feet, then I have to set. My joints just hurt to badly to keep

moving. I may have bariatric surgery soon, so that will help take some of the

pressure off my joints and legs.

Lipedema is also called " Painful Fat syndrome " . It isn't normal fat. IT is a

genetic disorder passed down from one female to another. My grandmother had

it, and I got it through my fathers genes'. My legs are unproportionately

larger than my upper body. When I have the weight loss surgery, I will lose my

regular fat, but I won't lose any of the lipedema fat. The lipedema fat just

won't move. There isn't anything I can do about it, it wasn't my fault or my

eating habits that caused it. Exercise doesn't help. It is not a rare disease,

but it is a disease that is rarely diagnosed. There is a lot of " shame "

attached to this disorder, because most women don't know they have it, and they

will give up trying to diet and become morbidly obese because they feel

hopeless. I was diagnosed this year. The when compressed or touched lipedema

fat is very painful and has a burning, stinging type of pain that you can feel.

The pain is really noticeable if you set too long.

Am I rambling on and on....sorry, but most people don't know about lipedema.

I better get off the computer. I have to be back on it in an hour - there is a

support group meeting on my site tonight at 7PM

Gentle Hugz

Gayla

http://chronicpain-byladyfrog.com

Re: Gayle Mobility and Pain Management

Hi Gayla,

I hope you rested well last night too. Unfortunately I didn't. And then this

time change really through me off. I'm a very early riser as it is, so I got up

at 5 the new time this morning. Usually I'm up between 4:30 and 6, but I had not

gone to bed until the time changed last night. So I got a whopping 2 hrs sleep.

lol I'll catch a nap in a while. I won't last much longer than that without one.

I've never ever heard of anyone having fibro in just their legs. How were you

able to get dx'd with just having symptoms there? I've always known that you

have to meet the CDC's criteria of having 11 of the 18 tender points active in

order to be dx'd. Also with CFS, you have to have relentless fatigue lasting 3

months or more, or maybe that is 6 months. I can't remember and it's been a

while since I have done any reading on CFS. I have both of them. My legs are

troubled the most by Fibro, but they aren't the only thing affected. My entire

body is affective. You and I weigh about the same. I gain right at 100 lbs

during the first 4 yrs of being sick. Just due to the fatigue and pain and

diminished mobility. I will tell you that your lack of mobility is NOT due to

your weight. Granted the weight doesn't help, but over the past 12 yrs, I have

slowly declined in the mobility department and kind of rapidly over the past 4-5

yrs. When I moved into this home I'm in back in May of

2004, it had a beautiful yard, lots of flowers, I didn't have to plant a thing

as there was no where to plant anything. lol I kept up the lawn by watering. I

couldn't mow, but I could water it everyday and the flowers too. The very next

summer I wasn't able to do it anymore Gayla. I tried doing it using my walker

but it was just too big of a task, I couldn't do it. Then last year, it came to

the point that I can't even make it to the car in the driveway if I have not

come straight from sitting in the house, being rested, and heading to the car.

Otherwise I have to use my walker to get to the car and there are some days I do

have to use the walker to get there. I don't drive anymore. I've driven once in

over a year. My reflexes aren't good and then the pain meds I'm on, even though

they don't drug me as I'm use to them, it's like doing things on " auto pilot "

and after wards everything I've done as far as driving, shopping or what ever is

a fog. Part of this is the brain fog

from fibro and cfs, the rest is solely from the narcotics. I do have an electric

scooter and am getting a lift for it installed in our truck in 2 wks. Then I'll

be able to go more places. I love that scooter! I can't go to the store without

using the scooter in the store, so the number of places I go is very limited.

Like to the grocery store or Walmart. That's it, besides the dr.'s office which

I use my walker to get to. And on bad days, we use one of the wheel chairs

there. It just depends. My arms have also lost a lot of strength too. I'm just a

mess, but a good mess

Please don't let anyone else blame your weight for your lack of mobility either,

because that isn't the problem. If you didn't have fibro or RSD, you'd walk just

fine. I did. As I said, it doesn't help us and we'd hurt less probably if some

of the weight was off and perhaps we might have a tad more mobility, but not

enough to be noticeable.

Hang in there Gayle, it sounds like we are both in the same boat in some ways.

We can lean on each other for support!

Hugs,

Tommie

PS. Have a wonderful day!

Tommie and others - I hope last night brought you some good rest. Hugz to you

today. I too, have fibro in my legs. I also have RSD(Reflex Symathetic

Dystrophy) in my arm and Lipedema in my legs. A few weeks ago I took a really

bad fall, and now I am trying to decipher if I have RSD in my left leg, or if I

am still feeling the results of that fall. Basically, I can't walk anymore. I am

heavy, weighing in recently at 316 lbs. I bought a walker and a wheelchair -

that is how desparate I am to keep from giving in to this pain and staying home.

However, I still seem to stay home more than I should - because what I would

like to do is lay in bed and sleep most of the time. The drugs make me feel so

lathargic. I don't want to give up walking right now, I want to try to keep

going (easier said than done), but I wished there was an easy way to tell if

this is RSD in my legs, or what. I am trying to wait as long as I can before I

talk to my doctor about it.

Gayla

http://chronicpain- byladyfrog. com

..

[Guest guest]

Ya know, I suppose a dog could have apnea, but I don't think there is a lil mask

and cpap machine for them, lol wouldn't that be too cute! They would probably

want to get the weight off first and if that isn't successful, they could do a

surgery and rid some of the fat around the throat area, but you are talking some

big bucks there. I guess it just depends on how much you love her and if you

have that kind of money!

You will love the CPAP Gayla, I can't wait for you to get it either. Just the

peace of mind that you are still breathing is enough in itself to want it NOW!

And yes you will rest better and feel better when you get up too. I did.

Hugs,

Tommie

PS. My lil doggie is fat too, but no apnea or even snoring yet. I'm cutting his

food back and trying to get it off him that way. He eats dog food only for the

most part, but he does think he has to have a bite of everything I eat too and I

give it to him. So his people food snacks are diminishing too. lol

Re: Gayle Mobility and Pain Management

I have mild sleep apnea, and have a mask and it also adds moisture to my

nose and throat, as they get dry, a lot. I also have to wear a chin guard, as

I have issues sleeping with my mouth open!

My fiancee has Sleep Apnea, a little worse than me, as he has the snoring,

as I didn't snore, he snores so loud that the Scouts had a contest on four of

the fathers that have it, and they taped it and showed them how they are in

the night. You would think he would understand with sleeping with me?

NAAAAAAA, LOL! He wears a CPAP mask, with no humidifier, as it is older. It is

so

funny, as we sleep with our mask, aaaaaaaaaaaaaaaaaaa aaa so romantic.

But, I must admit I don't wear it, as it does bother my nasal polyps, and so

hard to breath with the air pushing through only through my nose!

It will work out! My thoughts and prayers are with you!

Hugs,

Dawn

Jersey Girl

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everyone.

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[Guest guest]

Tommie - Right now, before getting the cpap machine, I am allowing myself to

sleep as much as I want to. I figure if I am getting woke up as much as they

say I am, then I need the rest. For the next week, if I feel tired, then I am

going to bed! I am really working on not sleeping on my back, but with the

fibro in my shoulders, it feels so much more comfortable to lay flat out.

I'm having some trouble trying to get comfortable and relax these days. It

seems like I am always tense through my arms and shoulders and back. I can't

seem to get them to relax out enough unless I am laying flat on my back.

The other thing is that I am really seeking out heat and warmth. I don't know

if that is because I am so tense or what - but the one thing I know is that as

soon as I get warm I fall asleep....and I seem to need the rest.

Do any of you do visualization and deep breathing exercises? I have done them

for years, but lately, with the daily (sometimes hourly) changes in the weather

I am having a hard time getting my shoulders to relax....any ideas on how to

help myself?

Gayla

http://chronicpain-byladyfrog.com

Re: Gayle Mobility and Pain Management

Hi Tommie - Thanks for writing to me! I don't get up very well in the morning. I

take that night time pain med, and it knocks me for a loop, plus, I don't sleep

well (like I am sure everyone here is in the same boat), so speaking of yo-yo's

- I am up and down all night.

I am 55 years old. I have two daughters ages 30 & 33. Both are married with

children. The 30 year old has two sons and the 33 year old has three daughters!

I love my grandkids, and they are really a huge motivator for me to try to get

healthier.

Today I heard from the sleep disorder clinic, and they are reporting I have

sleep apnea. Apparently I stop breathing approximately 61.5 times per hour. Can

you imagine? I had no clue - no wonder I can't sleep well, my poor brain is

trying to keep me awake and breathing! Basically what will happen now is that I

will go back to the clinic and spend the night. I will be hooked up all over

again only this time I will also be hooked up to some sort of oxygenator type

small device. It will blow air and oxygen into my mouth and keep me breathing

while I sleep. Then, they will teach me to use the machine and I will bring it

home. I don't think it is a big deal.

I loved getting out on Sunday, and even though I was pretty tired when I got

home, I am looking forward to going again. Tommie, it sounds like you are really

much more limited than I am. I can actually walk, but not far - only about 500

feet, then I have to set. My joints just hurt to badly to keep moving. I may

have bariatric surgery soon, so that will help take some of the pressure off my

joints and legs.

Lipedema is also called " Painful Fat syndrome " . It isn't normal fat. IT is a

genetic disorder passed down from one female to another. My grandmother had it,

and I got it through my fathers genes'. My legs are unproportionately larger

than my upper body. When I have the weight loss surgery, I will lose my regular

fat, but I won't lose any of the lipedema fat. The lipedema fat just won't move.

There isn't anything I can do about it, it wasn't my fault or my eating habits

that caused it. Exercise doesn't help. It is not a rare disease, but it is a

disease that is rarely diagnosed. There is a lot of " shame " attached to this

disorder, because most women don't know they have it, and they will give up

trying to diet and become morbidly obese because they feel hopeless. I was

diagnosed this year. The when compressed or touched lipedema fat is very painful

and has a burning, stinging type of pain that you can feel. The pain is really

noticeable if you set too long.

..

[Guest guest]

Tommie, yes, it would be cute to see the Lilly wearing a cpap mask! Somehow, I

don't think she thinks it is as funny as we do! I work on cutting Lilly's food

back, but somehow, my husband, who is thin, thinks we all need bacon, waffles

and eggs every morning!

Gayla

http://chronicpain-byladyfrog.com

Re: Gayle Mobility and Pain Management

I have mild sleep apnea, and have a mask and it also adds moisture to my

nose and throat, as they get dry, a lot. I also have to wear a chin guard, as

I have issues sleeping with my mouth open!

My fiancee has Sleep Apnea, a little worse than me, as he has the snoring,

as I didn't snore, he snores so loud that the Scouts had a contest on four of

the fathers that have it, and they taped it and showed them how they are in

the night. You would think he would understand with sleeping with me?

NAAAAAAA, LOL! He wears a CPAP mask, with no humidifier, as it is older. It is

so

funny, as we sleep with our mask, aaaaaaaaaaaaaaaaaaa aaa so romantic.

But, I must admit I don't wear it, as it does bother my nasal polyps, and so

hard to breath with the air pushing through only through my nose!

It will work out! My thoughts and prayers are with you!

Hugs,

Dawn

Jersey Girl

************ ********* ********* ******** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol. com.

[Guest guest]

Hi Gayla,

When you get your CPAP machine you can sleep on your back all you want and not

worry about not breathing. I do. That's the only way I can sleep because of the

Fibro and CFS. It just kills me to sleep any other way. Maybe you can prop

yourself up on your back to sleep? At least to where you aren't laying flat?

Either way, your testing is just around the corner, so not much longer and you

won't have to worry about it anymore. . When is your appointment to get set up

on the CPAP machine? Have you done this yet?

You will be so excited, you won't be able to wait to get home and sleep with it.

It's so exciting. lol

Good luck to you!

Tommie

Re: Gayle Mobility and Pain Management

Tommie - Right now, before getting the cpap machine, I am allowing myself to

sleep as much as I want to. I figure if I am getting woke up as much as they say

I am, then I need the rest. For the next week, if I feel tired, then I am going

to bed! I am really working on not sleeping on my back, but with the fibro in my

shoulders, it feels so much more comfortable to lay flat out.

I'm having some trouble trying to get comfortable and relax these days. It

seems like I am always tense through my arms and shoulders and back. I can't

seem to get them to relax out enough unless I am laying flat on my back.

The other thing is that I am really seeking out heat and warmth. I don't know

if that is because I am so tense or what - but the one thing I know is that as

soon as I get warm I fall asleep....and I seem to need the rest.

Do any of you do visualization and deep breathing exercises? I have done them

for years, but lately, with the daily (sometimes hourly) changes in the weather

I am having a hard time getting my shoulders to relax....any ideas on how to

help myself?

Gayla

http://chronicpain-byladyfrog.com

.

[Guest guest]

Tommie, Thank you for all the support you give to me - and others, I really

appreciate your knowledge and kind words! Yes, Thursday I go in to have the

CPAP fitted, which will be nice. I'll spend the night there at the sleep

disorder clinic and they will adjust it through the night. I'll let you know

when it arrives.

I also wanted to tell you I am sleeping with a bar of soap - and it really does

help the leg cramps. I've told everyone I know about it. I wished I knew what

chemical is making this work. My friend also told me there is something called

" LEG CRAMPS " that you can get in the hebal section of the pharmacy at BiMart or

WalMart that is natural. You just stick it under your tongue and it takes away

the leg cramps - I don't know what it is that makes it work either, but she

swears on it!

I appreciate the emailings on the Dog Food, everyone - we have two dogs, both

poodles, one is a teacup and the other a standard. Luckily for us our dog food

isn't on the list either.

Thirdly, if you are in the right tax bracket, did you know that your doctor

could write you a perscription for a hot tub, and that you can write it off as a

medical expense? Just thought I would remind everyone of this, because the warm

water can really help with the pain, and the tax deduction make it a little more

affordable to be able to get one!

Also, I am using Sombra for my shoulders at night. It's helping, and the smell

makes me relax and go to sleep. Sombra is a topical capsaicin

based product, and if you look up capsaicin, you will find that it comes from

hot peppers. I really like to use it!

Hope your all having a pain-free day, and if your not, then I at least hope it

is tolerable!

Gentle Hugs,

Gesch

Gayla

http://chronicpain-byladyfrog.com

Re: Gayle Mobility and Pain Management

Tommie - Right now, before getting the cpap machine, I am allowing myself to

sleep as much as I want to. I figure if I am getting woke up as much as they say

I am, then I need the rest. For the next week, if I feel tired, then I am going

to bed! I am really working on not sleeping on my back, but with the fibro in my

shoulders, it feels so much more comfortable to lay flat out.

I'm having some trouble trying to get comfortable and relax these days. It seems

like I am always tense through my arms and shoulders and back. I can't seem to

get them to relax out enough unless I am laying flat on my back.

The other thing is that I am really seeking out heat and warmth. I don't know if

that is because I am so tense or what - but the one thing I know is that as soon

as I get warm I fall asleep....and I seem to need the rest.

Do any of you do visualization and deep breathing exercises? I have done them

for years, but lately, with the daily (sometimes hourly) changes in the weather

I am having a hard time getting my shoulders to relax....any ideas on how to

help myself?

Gayla

http://chronicpain- byladyfrog. com

..

[Guest guest]

Hi Gayla

I'm so glad the soap worked for you. I'm going to try it now as I'm having a lot

of leg pain that is waking me up. It's not cramps, but just steady pain. Maybe

it will help mine too. Worth a try for sure.

You are most welcome Gayle, I wish I could help each and everyone of you more

than just typing on this board, but this is all I have to reach out with, both

to be supportive of others and get it when I need it as well. We have such a fun

loving group here. It's the best Pain Group I have ever belonged to. And we are

who makes this place what it is. I just wish more people would post. lol Not

that I am bored with all of you who do, I just wish some of the others would

post too. There has to be someone out there needing our help and if they don't

speak up, we can't help. I can't imagine being as sick as we are and going it

alone. But some prefer it that way I guess. LOL Then why join a " support group " ?

Oh I can't wait till you get your machine. You will feel so much better.

Hey, ya know health insurance use to pay for a hot tub if the dr. prescribed it.

This was back in the 80's when insurance co.'s tried to help people instead of

withhold treatment from us. Perhaps some of them still do pay for it, with the

right dx and a script. I'm betting that Medicare won't pay though unless you are

in some brutal accident or something very horrible. Heck, up until we got

Medicare Part D, Medicare would pay for the strips and stuff for testing

Diabetes, but not pay for the medicine needed to treat it. What's the point in

testing if you can't treat it? Makes no sense to me at all. And they wouldn't

pay for the needles either, to give the shots if on insulin. They just crack me

up! Such fools who write these plans. lol Bunch of pencil pushers is all they

are.

My day is far from pain free or even low pain But I hope yours is low or none

at all. It's beautiful outside, would be nice to be out enjoying it.

Hugs,

Tommie

Re: Gayle Mobility and Pain Management

Tommie - Right now, before getting the cpap machine, I am allowing myself to

sleep as much as I want to. I figure if I am getting woke up as much as they say

I am, then I need the rest. For the next week, if I feel tired, then I am going

to bed! I am really working on not sleeping on my back, but with the fibro in my

shoulders, it feels so much more comfortable to lay flat out.

I'm having some trouble trying to get comfortable and relax these days. It

seems like I am always tense through my arms and shoulders and back. I can't

seem to get them to relax out enough unless I am laying flat on my back.

The other thing is that I am really seeking out heat and warmth. I don't know

if that is because I am so tense or what - but the one thing I know is that as

soon as I get warm I fall asleep....and I seem to need the rest.

Do any of you do visualization and deep breathing exercises? I have done them

for years, but lately, with the daily (sometimes hourly) changes in the weather

I am having a hard time getting my shoulders to relax....any ideas on how to

help myself?

Gayla

http://chronicpain- byladyfrog. com

.