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Getting my life back a little at a time


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15 replies to this topic

#1 Sharonvandee

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Posted 06 July 2008 - 01:08 PM

A huge thank you to the girls in the chat room, especially Sheryl. I stumble in there and for the first time there was someone in there. Well it must of been fate, we got onto discusssing symtoms and she told me about Norvasc for raynauds and how much it had helped her. I spoke with my DR and straight away she put me on a low dose for starting with a check up tomorow to see how it is going. After 5 days I can already see an improvement. I am warming and coping alot better, I am able to do things I havent been able to for a while. I still have some limitiation but any improvement is great.

So thanks for the support and sharing of experiences and helping me to get a little bit of life back.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 epasen

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Posted 07 July 2008 - 01:13 AM

Hiya Sharon,
I´m glad Norvasc is helping you. In my case it didn´t work at all. Good to hear that you´re doing better with it. :)
Take care,
Emmi

#3 barefut

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Posted 07 July 2008 - 01:24 AM

Sharon,

Iam so glad you have found some relief for your poor fingers!

#4 luvbnmom3

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Posted 07 July 2008 - 01:25 AM

Does Narvasc help with being so cold in general? I ask because my Internal med doctor says that Raynaud's doesn't cause me to be so incredibly cold, where it takes a couple hours sometimes in a heating blanket before I start warming up. There are nights, & days too, when I just want to cry because I am cold to the bone & can't seem to get warm & I would LOVE to have help with that.

Anyways, that is great news either way that the narvasc is helping your Raynaud's!!!

#5 Margaret

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Posted 07 July 2008 - 01:36 AM

Hi Emmi ,

Is that you in the Avater? Fill us in on your happenings.

Take care, Everyone.
Margaret

#6 Sweet

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Posted 07 July 2008 - 04:02 AM

Oh Sharon, this is terrific news. I hope you continue to see improvement!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Lucy

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Posted 07 July 2008 - 04:24 AM

Hi Luvbnmom3,
I just wanted to let you know that I sufferred from internal cold - just as you do, sometimes I just wanted to cry I was so cold. My doctor put me on a low dose 10mg of Eltroxin and then brought down to 5 mg and boy did that get rid of the internal cold. Eltroxin is a thyroid medication and even though my thyroid test was on the low end of normal he felt given my bodies struggle it may need a little helpa and it really worked for me.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#8 Sharonvandee

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Posted 11 July 2008 - 11:26 AM

Lovemoon

I still get a litttle cold at times but both the external and interanl coldness seems to be a little more bareable. It is winter here at the moment and I too was at the point of crying from frustration and pain, winter is miserable. Even though it plays up in summer with airconditioners at least I can go out side and get a little heat, save on the electricity bills is for sure. I hope you too are able to find something that helps even a little is better then none.

Lucy

I to suffer from external and interanal cold taking an hour or two to warm up, and usually under and electric throw rug, so I will keep what you said in mind in case ever needed.

Magret

Yes that is me and my daughter, the apple of my eye.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#9 georgette

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Posted 11 July 2008 - 01:25 PM

oh my goodness , I have once again learned something from this site , I didn't know this cold to the bone feeling was sclero !!!! some days the only way I can get my core temperature up is to have a hot shower , the cold is that unbearable , but then after the hot shower my skin feels extra tight and ever so itchy but at least I can get my core temperature up enough to function , wow I just didn't know that !!!!! thanks to ya all and thanks for this forum , where I can learn so much hugs georgette

#10 Lucy

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Posted 11 July 2008 - 03:29 PM

Hi Georgette,
I hate taking showers because as soon as the water stops my skin feels extra tight and itchy as well. My sister's dermatologist told me to take some baby oil in the shower with me and when I am finished before I get out wipe my skin down with the baby oil. Wow does this ever work, no tightness or itchy I actually like the feeling.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#11 smac0719

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Posted 11 July 2008 - 04:30 PM

I am happier and warmer with the Norvasc as well. I have been on it almost a month now.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 Nina

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Posted 11 July 2008 - 05:46 PM

Hi gang ~ I have a question...
I have terrible problems in the winter, but, at the moment it is summer here. Does anyone else have problems with sweating? Not just normal sweating, but sweating to the point of embarrasment. And when others are saying it's really not that hot. My face gets beet red and I feel like I'm on fire. I keep saying I have an internal thermostat problem ~ and no, it's not hot flashes. That's what all my friends keep telling me, but I had a hyserectomy 20+ years ago.
Does anyone know if this could be connected to sclero?
thanks all,
Much Love,
Nina

#13 summer

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Posted 11 July 2008 - 07:44 PM

Hi Nina, I am on Nexium and one of the side effects is hot flushes, I can feel cold one minute and then the next have a hot flush which I can feel in the face and body. It is annoying to feel this way but it is better than suffering from reflux.

Take care
Celia

#14 Sheryl

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Posted 11 July 2008 - 11:11 PM

Sharon, I am happy the Norvasc has been working well for you. It has been a miracle drug for me. I have been on thyroid medications for years and still could never get warm. I wrote you a long letter and finally figured what I kept doing that was causing them to disappear on me. When I go to copy, and paste things I accidentally hit the shift key and the C instead of the Control key and the C key. Now, that I know what is making my letters go into cyber space I can be very careful not to let that happen again. Anyways, some medications work well for some of us and do nothing for others. At least there are other medications out that may still help others in our situation. I hope you continue to stay warm.
Strength and Warmth,
Sheryl

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#15 Nina

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Posted 12 July 2008 - 09:47 AM

Celia ~ I never heard that one. I do take Nexium, but I have had this problem since before I got on the Nexium. That's nice to know though, probably hasn't helped things. I've cut my Nexium in 1/2 since my operation, feeling hot has not gotten any better, just worse in the summertime. My brother says at times my face is unusually red, like unnatural.
And believe me, that's how I feel, UNNATURAL :(
Thanks for your response, and take care,
MUCH LOVE,
NINA

#16 truman

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Posted 12 July 2008 - 02:42 PM

luvbnmom3:

Have you been checked for anemia? I went through an incredible coldness this past winter, unusually cold and couldn't warm up. I had the t-stat nearly 90 degrees with many blankets on and still chattering. A routine blood test had my doctor calling the house that my blood count was dangerously low. Had to start taking iron supplements and finally adjusted accordingly.
Tru

It is what it is...........