Re: SD symptoms?

[Guest guest]

Ellen, my feet and hands felt like ICE. The legs felt like they had been

filled with cement which had dried. Felt heavy even when sitting. The

burning was not so much as the heaviness. Hope this helps.

In a message dated 2/23/2011 2:21:37 P.M. Mountain Standard Time,

ellenmccool@... writes:

Does anyone with SD have any experience with a burning sensation in the

feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Non-text portions of this message have been removed]

[Guest guest]

Yes, I also have had problems with my feet and I was diagnosed with Systemic

Scleroderma, back in 2005,  but I also have diabetes.  The feet can be very

sensitive and I sometimes have to sleep with booties on.  Around the house I

wear fuzzy slippers.  Since moving to Puerto Rico, the feet are not as bad as

they were in NY in the winter.  I someitmes have to put a heating pad at the

foot of my bed before getting into bed and as a last resort, I sometimes ask my

husband to give me a gentle foot massage before I am comfortable enough to fall

asleep.  It probably has to do with poor circulation.  In time, with A/P that

will diminish.  I see a podiatrist for diabetic check ups on my feet and so

far so good.  Sometimes, I feel like I am walking on gravel, but that sensation

has also diminshed.  Hope your daughter is on A/P.  Dolores & Mike 

From: Elllen McCool <ellenmccool@...>

Subject: rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic >

Date: Wednesday, February 23, 2011, 4:21 PM

 

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

Ellen, why don't you get your daughter a rice bag or rice " sock " and heat it so

she can put it down inside the covers when she goes to bed. You would be

surprised how long it will stay warm and she will be a lot more comfortable.

You can also heat then for her when she is sitting watching tv at night etc. and

she can put it in her lap and it will keep her hands more comfortable. This old

war horse still does that!

rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

Hi Ellen,

I don’t have scleraderma but have issues with my feet. When I was first dxed

with RA I had “buzzy†sensations inside my feet. I used a hand held massager

on high and it would relieve it so I could sleep and I used it in the evenings

just so I could sit and watch TV. Now I use a foot massager.

Hubby has resless legs and I have him on B6... ALA and magnesium. They say iron

also but his levels were OK. I would get her iron (not HGB , HCT) levels

checked. The ALA is like neurotin with restless legs. Magnesium is a relaxer.

My feet are always cold and I use a bag I made from cotton material filled with

flax seed. You can use rice. I heat it up in the micro and sleep with it.

Sometimes you feel burning when you really feel cold…make any sense?

I have empathy for her since feet are so sensitive anyway. Hope AP starts to

help soon.

Hugs

cooky

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

Hi,  thanks for the advice on the rice sock.  I never heard of that.  Do you

warm up the same rice sock every night or use the same sock and put new rice in

it.  I've been heating up the foot of my bed with a hating pad prior to getting

in or just wearing booties.  sometimes Mike gives me a gentle massge with Ben

Gay and then we put the booties on.  yes, I have had snsitive feet for a while,

but I always thought it was from diabetes.  Has the child's blood sugar been

checked lately  or has she had the circulation to her feet checked.  Mine was

worse before I began Minocin.  My two legs looked and felt like they were made

of stone and were always ice cold.  fter I went into remission, and my skin

softened up, the sensitivity eased somewhat with the warm weather.  Now in

Puerto rico where we don't have carpet, I only have problems when I walk on the

cold slate in bare feet like right now.  gping for the fuzzy slippers right

now.   Thanks, 

Dolores & Mike

From: Elllen McCool <ellenmccool@...>

Subject: rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

I have one long flax filled pad which I put across my chest or lap or back. My

homemade rice sock is a sock of my husbands and I filled it years ago with rice

and tied the end. I have never changed the rice. Pretty cheap! The other

problem with us is when we DO get cold, it is a cold to the bones and we have a

difficult time warming back up. For that reason, I would buy those cheap gloves

at Target or Walmart, cut the fingers out and have your daughter wear those a

lot. Particularly when her hands do feel cold. And try those rice pads or

socks. She will be a much happier camper if you can keep her warm!

rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

I have 2 pads that we bought online...filled with rice or something..we heat

then in the microwave for 4 minutes..then I put them at my feet and I hold one

in my hands to go to sleep...since I have Raynauds...it does help me..

BUT....thats for the cold and Raynauds...the burning, I am concerned may be a

nerve issue...I thought ck'ng the B vitamins might be helpful and I did send an

email to Ellen..I take Vit B12, sublingually for the nerve issues..and so

far..so good.

Debbie

rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

Thanks so much, Cooky, for your suggestions about vitamins, heat pad, etc.

I will take everything I have heard from all the kind people at

rheumatic.org and try to find what works. I appreciate your interest and

caring attitude.

Hope you are as well as you can be.

Ellen

[Guest guest]

Hi, When I had raynaud's, I used gloves summer & winter and anyplace that had

a/c on so high that would freeze my hands. Why do you cut the fingers off the

gloves?  Aren't the fingers the first part that gets cold.  Even now, If I

am searching in the freezer for too long looking for something I know I have

buried at the bottom, my fingers get numb, but I no longer get the Raynaud's. 

I remember the days when I used to have to put my hands under running warm water

to get the circulation back again.  After the pale bloodless white color,

 they would turn blue and then bright red again. 6 months or so into A/P and

that was the first symptom to go.  Thank God.  Take care, Dolores & Mike 

From: Elllen McCool <ellenmccool@...>

Subject: rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

I cut them off midway so just the finger tips were exposed where I could

type and do all the things in bookkeeping I had/have to do. Like you, I

NEVER went grocery shopping without them. Hands just could not take it.

These little gloves are two for 1.99 I think at Walmart and I just stocked way

up. Have not had to buy any more in a year as I purchased so many! There

are some things cheap, like Vitamin K, and these gloves which are just

worth a fortune!

In a message dated 2/25/2011 5:11:17 A.M. Mountain Standard Time,

martysfolks2004@... writes:

Hi, When I had raynaud's, I used gloves summer & winter and anyplace that

had a/c on so high that would freeze my hands. Why do you cut the fingers

off the gloves? Aren't the fingers the first part that gets cold. Even

now, If I am searching in the freezer for too long looking for something I

know I have buried at the bottom, my fingers get numb, but I no longer get the

Raynaud's. I remember the days when I used to have to put my hands under

running warm water to get the circulation back again. After the pale

bloodless white color, they would turn blue and then bright red again. 6

months

or so into A/P and that was the first symptom to go. Thank God. Take

care, Dolores & Mike

From: Elllen McCool <_ellenmccool@..._

(mailto:ellenmccool@...) >

Subject: rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <_rheumatic _

(mailto:rheumatic ) >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the

feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

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[Guest guest]

My daughter has the Raynaud’s in her feet. Her hands aren’t so bad anymore,

but of course she is rarely out in the cold or has to stick her hands into a

freezer!

Ellen

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

Sent: Friday, February 25, 2011 7:11 AM

rheumatic

Subject: Re: rheumatic SD symptoms?

Hi, When I had raynaud's, I used gloves summer & winter and anyplace that had

a/c on so high that would freeze my hands. Why do you cut the fingers off the

gloves? Aren't the fingers the first part that gets cold. Even now, If I am

searching in the freezer for too long looking for something I know I have buried

at the bottom, my fingers get numb, but I no longer get the Raynaud's. I

remember the days when I used to have to put my hands under running warm water

to get the circulation back again. After the pale bloodless white color, they

would turn blue and then bright red again. 6 months or so into A/P and that was

the first symptom to go. Thank God. Take care, Dolores & Mike

From: Elllen McCool <ellenmccool@...

<mailto:ellenmccool%40bellsouth.net> >

Subject: rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <rheumatic

<mailto:rheumatic%40> >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool

[Guest guest]

Hi, Thank you for explaining that about cutting the fingertips.  I never would

have thought of that.  If I ever get Raynaud's again or hear someone c/o of

raynaud's, I will pass that on.   P.S. Mike and I keep two pairs of cheapie

gloves in the glove compartment in the car.  Mike also gets Raynaud's in cold

weather.  It has not happened in P.R. yet, but in summer, the stores and

restaurants turn the A/C all the way up, so we put on a hooded sweater and if

need be, we grab the gloves and don't spend too much time inside.   We never

turn the a/c on in our house.  We live 300 ft from the ocean and we just open

the front door and back door and let the ocean breeze keep us just cool enough

to be comfortable.  We also put a pool up in the yard, so that we can sit in it

in the evening when the sun is going down.  This way we prevent us from getting

hyperpigmentation and we can do water aerobics, then just relax and talk till we

wrinkle and then get

out.  It is one of the nicest times of the day for us.  Then we have dinner

out on the patio with the tiki torches on.  We fill them with oil which repels

mosquitos.  Also, the ocean breezes keeps the pests away. We do have frogs,

geckos and Iguanas that sometimes pass by and sometimes a rooster or a hen will

pass by from a neighbors house.  Our dog chases them away.  It is quite a

scene and we love it here.   Dolors & Mike 

From: Elllen McCool <_ellenmccool@..._

(mailto:ellenmccool@...) >

Subject: rheumatic SD symptoms?

" Rheumatic EGroups (Rheumatic EGroups) " <_rheumatic _

(mailto:rheumatic ) >

Date: Wednesday, February 23, 2011, 4:21 PM

Does anyone with SD have any experience with a burning sensation in the

feet

and legs? My daughter has systemic scleroderma as well as multiple

sclerosis. The burning is quite intense at times, and it comes from the

inside. Her feet and legs are not unusually warm to the touch. As a matter

of fact, sometimes her feet are stone cold.

Ellen McCool