Re: [CRPS]rsd Raynauds

[Guest guest]

Hi Guys,

I have been diagnosed with Raynauds and it seems to go hand in hand (no pun

intended) with RSD. Here is a link for you to look at.

The treatment is the same except there is a medication to add to your list

that will help. I was taking it for a while and stopped because I was having

adverse affects from it. My blood pressure is also very low 90/60 so I wasn't

able to take a beneficial dose. I don't remember the name but it is for high

blood pressure.

Hugs,

Deb

List owner

<A HREF= " http://www.onelist.com/group/CRPS " >eGroups : CRPS</A>

We are a group of caring people with a private chat every evening, along with

great links for RSD,CRPS,ABC,.Whatever they label it, It is a monster.

We also encourage caregivers. We do have a few people in the medical field on

our list, but would always welcome more!

[Guest guest]

Hi Guys,

I have been diagnosed with Raynauds and it seems to go hand in hand (no pun

intended) with RSD. Here is a link for you to look at.

The treatment is the same except there is a medication to add to your list

that will help. I was taking it for a while and stopped because I was having

adverse affects from it. My blood pressure is also very low 90/60 so I wasn't

able to take a beneficial dose. I don't remember the name but it is for high

blood pressure.

Hugs,

Deb

List owner

<A HREF= " http://www.onelist.com/group/CRPS " >eGroups : CRPS</A>

We are a group of caring people with a private chat every evening, along with

great links for RSD,CRPS,ABC,.Whatever they label it, It is a monster.

We also encourage caregivers. We do have a few people in the medical field on

our list, but would always welcome more!

[Guest guest]

Deb,

Hi. I was wondering what your hands and arms feel like to you. One doctor

said I could have reynauds but like you said and the nuero said it's all

linked to the same autonomic nerve. That's whats wrong with me. I have a bad

AN. Just wodering what reynauds was like from a personall standpoint.

thanks. Is there away to get rid of purple hands? I keep mine in my sleeves.

My daughter calls it moms palor trick. she's only soon to be 13. notcie I

said only.

thanks and if someone could lasso the sun over here it would be much

appreciated!!!!

kim

[Guest guest]

Deb,

What is Raynauds?

Hugs, Tracey

> [Original Message]

>

> To: <CRPSegroups>

> Date: 4/26/00 2:03:25 PM

> Subject: Re: rsd Raynauds

>

> Hi Guys,

> I have been diagnosed with Raynauds and it seems to go hand in hand (no

pun

> intended) with RSD. Here is a link for you to look at.

> The treatment is the same except there is a medication to add to your

list

> that will help. I was taking it for a while and stopped because I was

having

> adverse affects from it. My blood pressure is also very low 90/60 so I

wasn't

> able to take a beneficial dose. I don't remember the name but it is for

high

> blood pressure.

>

> Hugs,

> Deb

> List owner

>

>

> <A HREF= " http://www.onelist.com/group/CRPS " >eGroups : CRPS</A>

> We are a group of caring people with a private chat every evening, along

with

> great links for RSD,CRPS,ABC,.Whatever they label it, It is a monster.

>

>

>

> We also encourage caregivers. We do have a few people in the medical

field on

> our list, but would always welcome more!

>

>

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

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>

[Guest guest]

Hi Deb,

What my doc had me try for the Raynauds was

Dibenzyline, an bp med. It does help a bit, but

I also have low bp so I can only take it at bedtime. I had the Raynauds

long before RSD.

Hope you're having a good day.

Take care,

Judy

[Guest guest]

In a message dated 4/26/00 3:01:37 PM Eastern Daylight Time, kp72369@...

writes:

<< Just wondering what Raynauds was like from a personal standpoint.

thanks. Is there away to get rid of purple hands? >>

Hi Kim,

My hands get very gainful at times. I wear cashmere lined leather gloves

constantly! My Mom has bought me 4 other pairs also.

I still wonder why I get a manicure. Lol

When it gets really bad my fingers turn white and red and sting and burn and

throb. I just want to cut them off. It is worse than that relentless burning

from the rsd.

As far as getting rid off it, I know smoking is a no, no.

As I mentioned before the medication for blood pressure is supposed to help.

I think it did, I have to ask to be put back on it. They took me off of it

because they had me on so much medication they were not sure what was doing

what.

Now I am able to add another. Lucky me. Lol

I sent that link to the list check it out.

I still feel the saving grace for me in all of this is the Mexitil. I know I

feel better by reading my journal. My husband tells me I am better than

before also. It is hard for us to judge and remember the difference. I write

it all down, I have since the truck hit me. I will need it when my lawyer

goes forward with the lawsuit. I, unfortunately can only collect from my own

underinsurance. I was ON MY WAY to my first day of a new job. Luck. :{ I

guess. Money is not as important as health. I have always said even if I was

eligible for large amounts of money, I would give it all back and beg for a

cure to be found.

I am rambling, bye for now.

Hugs,

Deb

List owner

<A HREF= " http://www.onelist.com/group/CRPS " >eGroups : CRPS</A>

We are a group of caring people with a private chat every evening, along with

great links for RSD,CRPS,ABC,.Whatever they label it, It is a monster.

We also encourage caregivers. We do have a few people in the medical field on

our list, but would always welcome more!

[Guest guest]

Deb,

hi. I wear golves in the house. I wear my sleeves out of the house. I get

embarrassed when my hands turn colors. I know when they start because the

pain starts at the top of my arm and goes all the way down ouch. my chiro

said drink gatorade for the spasms. haven't been able to do it yet!!!

take care kim

[Guest guest]

Kim,

I know with my Renaurd's my hands and feet turn blue when they get cold and

from what I understand this is pretty much the symptoms.

The first time I met my rheumatologist he walked into the examining room and

went to shake my blue hands and said " Renaurd's " So at least I had one

immediate diagnosis.

It seems that a lot of stuff that is attributed to Rheumatoid Arthritis is

also attributed to RSD. So know I am really wondering how long I have had

RSD. And do I really have RA?

Felice

[Guest guest]

Felice,

My first neuro exam was with my daughters neuro. he spent three hours

with me listening , hugging and laughing with me. My pcp sent me to another

neuro because rsd is incurable and he couln't except the diagnosis. The

second neuro told me it is thoraic outlet syndrome or reynards secondary. I

went to an othro surgeon to have my disks inspected, few herniations in my

neck, he said he wasn't sure, he didn't know much about rsd. he told me

there's not much he can do outside of fixing my torn rotator cuff, but I

could go back and see him. My pcp doc took a bunch of blood test but never

told me results. my first neuro has given me an open door and his email. my

therapist refused to believe it's anything outside of a disk problem and is

willing to send me to doc after doc. anyway, I told the first neuro

everything and he said, the reyn. and tos is all caused by the autonomic

nerve which in my rsd is the problem. they can test for tos which I had done

in oct and even the ortho doc couldn't find it. so I don't know what it is

I'm getting too, except from my experience docs don't like things that they

can't make go away and that's why they don't like rsd. it's annoying to have

something that nobody wants to label. but i like you always ask myself is it

this I really have? I can't facilitate these color changes so I know it's

real and the pain I feel. but it's no wonder we get confused when the people

we seek for help are confused as well.

take care, kim

[Guest guest]

Tracey,

I normally go barefoot in the summer or wear sandals. my daughter painted

her toenails orange with dots on the big one. I think orange and purple go

well together!!!! we'll start a trend!!!!

kim

[Guest guest]

Tracey,

That's great for Herb to do that for you!!!!! I'll let you know about the

orange color!!!

cheers, kim

[Guest guest]

Kim,

I talked with another friend of mine who has RSD and we both agreed that

with summer coming we weren't going to hide our purple feet and hands.

We're going to set a new " fashion trend " !!!! So, be embarrassed, join the

trend!!!

Hugs, Tracey

> [Original Message]

>

> To: <CRPSegroups>

> Date: 4/27/00 4:19:19 PM

> Subject: Re: rsd Raynauds

>

> Deb,

> hi. I wear golves in the house. I wear my sleeves out of the house. I

get

> embarrassed when my hands turn colors. I know when they start because the

> pain starts at the top of my arm and goes all the way down ouch. my chiro

> said drink gatorade for the spasms. haven't been able to do it yet!!!

> take care kim

>

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>

[Guest guest]

Kim,

I had Herb paint my toenails bright pink one day last week. Boy did it

hurt on my RSD foot. I felt every stroke of that brush!! He said when

it's time to come off, you're taking it off! The pink went well with the

purple though!!!

Hugs, Tracey

> [Original Message]

>

> To: <CRPSegroups>

> Date: 4/28/00 10:18:07 AM

> Subject: Re: rsd Raynauds

>

> Tracey,

> I normally go barefoot in the summer or wear sandals. my daughter

painted

> her toenails orange with dots on the big one. I think orange and purple

go

> well together!!!! we'll start a trend!!!!

> kim

>

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>

[Guest guest]

Kim,

And in my case there is a law suit involved so everyone wants to make those

pegs and those wholes match up for their side.

It would be much better for my case if it was RSD all along. Onset from

accident because I didn't have rheumatoid arthritis or reynaurd's or fibro

until the accident.

And I want a doctor to really look at me and not just blame it on me having

so many things wrong. The only doctor that rally cares is my rheumatologist

and he is in NY so I don't get to see him that often. But I know when he

sees me on Wednesday if the leg is still swollen he will not let me leave the

office until he knows what is going on.

Felice

[Guest guest]

Felice,

Why can't doctors be normal? Do you have to bleed to be hurt? that makes

my blood boil. My daughter will tell me her belly hurts . I know she just

wants to stay home so I give her a water bottle some poop pills if she hasn't

gone for awhile and she stays home. I know she's faking but I still treat her

and believe her enough to listen. we pay these doctors they could atleast

humor us.

such a sore subject with me. I hope your doc takes care of you in

NY!!!!!!

kim

[Guest guest]

Hi Kim,

I have Raynauds also. I was having a lidocaine IV when the nurse took out the

IV she asked me to put pressure on it and my hand turned blue.

They sent me to another doctor and he didn't need to do the contrast test he

said it was obvious. I think the way they test you is hot then cold water.

Well, anyway the thing is I told him I have always had cold feet, never able

to go sledding for long when I have on Sorel Boots. I always had white hands

especially my little finger which I broke in 2nd grade.

The doctor said that Raynauds could have been exacerbated by the RSD.

The only treatment that I know of is that medication called Verapamil that I

was on for a while. It is actually a calcium channel blocker used in treating

high blood pressure.

It is painful in and of itself, and I guess secondary to RSD from what I have

been able to research.

I hope you get some relief, wear gloves and socks and try to keep helping the

hands and feet getting blood into them.

I hope this helps and I know that at the main site, the links section has

some info on it in one of the RSD sections. You can also just go to snap.com

and go to health and type in Raynauds Phenomenon.

Hugs to you,

Deb

Crps

eGroups

[Guest guest]

Hi Deb,

I have AS (Ankylosing Spondylitis) and Reynauds too. My Dr. had me on Trentol

for it for awhile, now I just take my AS meds (Relafen, Vicodin, Robaxin).

What other drugs are available for Reynauds?

a

[Guest guest]

In the new Arthritis Today they have done research on a new treatment for

Raynauds. My memory is so bad I can't remember it to well but it was a

topical cream to apply to feet and hands that would improve the circulation.

Felice

[Guest guest]

In the new Arthritis Today they have done research on a new treatment for

Raynauds. My memory is so bad I can't remember it to well but it was a

topical cream to apply to feet and hands that would improve the circulation.

Felice

[Guest guest]

In the new Arthritis Today they have done research on a new treatment for

Raynauds. My memory is so bad I can't remember it to well but it was a

topical cream to apply to feet and hands that would improve the circulation.

Felice

[Guest guest]

deb,

thankyou. my hands and feet both turn purple and swell sometimes the

veins on my fingers swell. they hurt and I get the cold sensation under my

skin and my feet and legs burn like their on fire. the swelling is something

else. I had an ortho doc tell me theirs no change I haven't been back to see

that one.

the war contin ues. maybe they'll find it's just a block and they'll fix

it.

take care, kim

[Guest guest]

Kim,

Do you get an icy cold burning felling from the ankles into the feet when you

first stand up and start waking? I am having this symptom more and more.

It's different from the cold feet and hands. I think that it feels like what

the pink insulation stuff would feel like if it was really cold and stuffed

into my legs. Weird.

I am not sure which doctor to mention it to because I am not sure what it is

a symptom of.

Felice

[Guest guest]

Felice,

Hi, sorry I didn't answer sooner I was a little sick. My feet burn now

like I was bitten by a few fire ants, ha I even threw my shoes and socks off

the first time it happened looking for the fire. redicluos. my arms hands and

back get that cold feeling though. If I start to do something physical

typing, bike riding i get it. feels like it's rising off my body kie a vapor

like a york pepermint patiie I get the sensation. most annoying thing and

people touch me and I'm cold but it's not cold to me. but the pain oh the

pain. does that help? I was so sick these past couple of days I needed my

daughter to stay home because I couldn't walk. nasty. oh if that's what's

going to happen in my future I certainly don't think so. I go see the new doc

next tues I hurt my arm digging in the garden. so we'll see what he says

let me know if i've helped. let me know what your ideas are about the cold.

take care felice, kim

[Guest guest]

In a message dated 5/17/00 8:58:52 PM Eastern Daylight Time, kp72369@...

writes:

<< I get the sensation. Most annoying thing and

people touch me and I'm cold but it's not cold to me. but the pain oh the

pain. Does that help? I was so sick these past couple of days I needed my

daughter to stay home because I couldn't walk. nasty. >>

Kim,

Please try these links. You sound like me today. I have just recently

started showing similar symptoms on my left side. It feels like I am being

bit by a bunch of fire ants, or prickles from the woods. I had to take my

pants off on the stairs. I have RSD in my right side, so this is new.

I have always had the cold feeling, but when people touch it it is hot.

Sometimes though, especially in the winter you could feel the coldness coming

through my thick wool socks. Neurontin has helped this for me, but more so

the Mexitil.

Now I need to get some bug spray I guess. Lol

I know it is not funny.:{

Anyway, try these

<A

HREF= " http://www005.personalogic.aol.com/pl/system/pl.qanda;s7m1yreEWV47_5da3C

gKC$vAbS$xaExYdpRMz5EByUGUewwx0dReFlhVAavMYdq7vhTBqNXVNasJk0JdoFE8hJTQL2cgQn9W

MBI & OABSuCf34USExxV0hRkZqnNVbpWV61z6ba3TbRnx8_Tx4Zypicdrt1NSmpLKQlmpZb1NgcSw56

gkjF2GQMFJpWcd0UKNanTrc0mTuB3RsLOyzRH " >Reflex Sympathetic Dystrophy Coalition

- RSD, Causalgia,

CRPS, Complex Regional</A>

This is a good one to copy.

<A HREF= " http://www.rsds.org/ " >RSDSA - Reflex Sympathetic Dystrophy Syndrome

Association of America Homepage</A>

Hugs to you,

Deb

Crps

eGroups

[Guest guest]

Deb

Hi!! That's just how I feel. I figure thunder and lightning should be

happening right around my waste!!!! Now that would get some attentioon!!!!

The feet is new and now welcomed at all I have to stop myself from getting

naked to put out the fire. I will lokk at those sites, thankyou!!!

kim