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Raynaud's help


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#1 luvbnmom3

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Posted 21 November 2008 - 11:38 AM

Hi all!

With winter here, Raynaud's is worse than the winter before (that's the way it goes each year). Anyways, my feet are staying numb for sooo lung, white & numb. I'm scared for them. Does anyone know if this is going to cause some problems or not? I can't get warm & I can't get rid of the attacks for so long. I'm frustrated. I take a calcium channel blocker & I take a baby aspirin a day for APS, I try to do everything to stay warm. I've always felt like a guru when it came to protecting my self from the cold... but it is beyond my control this winter I guess.

By the way, my doctors are still saying APS is what I have & CREST, I can't recall if I mentioned that they finally figured out some of what has been going on the last few years.

Thanks!

#2 WestCoast1

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Posted 21 November 2008 - 12:09 PM

Hi there,

We know when Winter has finally arrived when our fingers turn white! I am sorry that you have to go through this!!! I have been advised to always keep my fingers warm at all costs...I hope that you will too. That means using the warming packs that you put in your pockets and wearing gloves whenever possible.

I have seen here in the forum that there are several medaications you can take when the Raynaud's's gets serious. If you see sores on the tips of your fingers, you should talk to your doctor about these options. I take a medication for this only in the winter. It seems to be working so far.

Take care of your fingers this winter, I hope you find relief soon.
*WestCoast*

********

#3 berrydahl

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Posted 21 November 2008 - 03:57 PM

I don't know if it is proper here to ask a related question or if I should start fresh... Sorry if I am not doing this correct.

I am taking a blood pressure medicine to help with the Raynaud's, but like the others here I am suffering more than ever. It is continual all day long and my feet and hands look very blue and white. I have never had it this severe. I keep a space heater at work and wear gloves almost continually. Do you get DU from not being able to get the circulation restored for a long time?

#4 canon

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Posted 21 November 2008 - 07:09 PM

Hi luvbnmom,

With APS keeping your feet elevated might help with big fluffy warm socks. I have had anticardiolipins, livedo reticularus and when my feet won't warm up elevating them helps. It helps with Raynaud's too. The circulation is better when they are propped up on a nice fluffy pillow and FLUFFY warm socks. I take plavix for the Raynaud's, and etc, can't take aspirin.

This winter has been the worst and it is not quite here yet either.

With gentle thoughts,

Judy
A happy heart is good medicine.

#5 luvbnmom3

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Posted 22 November 2008 - 09:42 AM

Hey thanks for the info! I am worried since, like it has been mentioned, winter isn't hardly even here!

berrydahl - what is DU? I'm sorry...brain fuzz here...lol!

#6 berrydahl

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Posted 22 November 2008 - 11:31 AM

No, it's not you at all. No one knew what I meant. I was asking about digital ulcers. Those scare me... I want to avoid that at all costs. Does Raynaud's cause them? If I wear ski gloves at all times will I be safe? I'm writing this with a smile thinking of going every where in ski gloves...

Thanks for clearing up my confusion.

Connie

#7 Purr

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Posted 23 November 2008 - 07:49 AM

Berrydahl,

I haven't had digital ulcers yet, but I get dry, cracked finger and thumb tips. My doctor has prescribed nitro patches, 0.1 mg. I just started using them today. You wear them for 12 hours and off for 12 hours. She wants me to wear them during the day. She said, hopefully, it will help prevent digital ulcers. I'll let you know how it goes and also if I have any side effects. OK?

Christy
Love makes the world go around!

#8 berrydahl

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Posted 23 November 2008 - 08:41 AM

Christy,

That would be great. I hope it goes well, cracked skin is painful.
Take care.
Connie

#9 Wohali

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Posted 25 November 2008 - 05:22 PM

In the winter I wear 2-3 pair of socks to ward off the Raynaud's. Don't go barefoot at all not even to bed!! In bed I wear a pair of heavy winter hiking socks over smaller socks to trap in the heat. I've also noticed it helps to soak my feet in a pan of real warm water and epsom salt then immediately dry feet and layer in socks to hold in all the heat. Feels great that way.

I take calcium channel blocker too. Oddly enough after my doctor increased my dosage my feet got colder. :huh:

I once found a pair of these weird looking socks that have a thermal metalic material woven inside that reflects back bodyheat. I found them in a mail order catalog. Thing is those socks were super warm. I wore them till they fell apart.

#10 warmheart

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Posted 26 November 2008 - 03:46 PM

Hi, & happy Thanksgiving!

I just want to add--be careful with space heaters. When I'd get the chills (we all know how that goes) and Raynaud's attacks I used to sit right over my little space heater with my feet sitting on it. I didn't appreciate how bad my neuropathy was until I realized that I felt afterward like I was walking on a comfy cloud because my burned soles were all blistered! I never felt the burns. Please be careful!

#11 Purr

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Posted 27 November 2008 - 03:04 AM

Hi Warmheart!!

Thanks for the "hot" tip. Sorry, I just couldn't resist. :D

Happy Thanksgiving!
Christy
Love makes the world go around!

#12 warmheart

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Posted 29 November 2008 - 10:46 AM

Hi Christy! :lol:

Happy (belated) Thanksgiving to you too, and to all of you!

Hugs,

w.

#13 KarenL

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Posted 01 December 2008 - 05:40 AM

You MUST at all cost keep warm especially fingers and toes. Not to be taken lightly. I have had ulcers and cracked skin, they are the prelude to gangrene. Gangrene can also develop without ulcers or cracked skin before hand. Prolonged Raynaud's attacks that are allowed to go on will eventually cause gangrene. Trust me it's not something you want to do. My doctor, when I finally found one who knew what was going on, advicsed my husband and I to go to counseling because of the toll a year of gangrene was about to take on our marriage. I was on increasing amounts of pain killers as my finger slowly died. Imagine the millions of nerve endings in the tips of your fingers....PLEASE, do something and do it fast. I am finally on Revatio which is the only thing that has helped. I still get attacks, but they are milder and over much faster. Stay warm is not just a nice thing to say or a cute quip we use on here it's literally life or death, (of a finger) best of luck,
Karen

#14 CFMBabs

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Posted 01 December 2008 - 10:28 AM

Okay, since I can't take meds for Raynaud's, the only way I deal with this problem is to wear two pairs of socks and a size bigger shoe with thick soles.
When I'm home, and unfortunately that's most times, I try and warm my feet by soaking in warm water -- not hot! or having a nice warm bath!

I avoid cold floors at all cost, wear bedsocks during the day, and generally try to keep my toes and feet warm. It's a very difficut time of year and I happen to think that an attack in the feet is far worse than in the fingers and much more painful!

I hope you get some respite. Look after your trotters!

Much love and hugs
Barbs xxx

#15 LMT

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Posted 02 December 2008 - 08:15 AM

I have to agree with the use of the handwarmers! These for me are a great for Raynaud attacks!! I have them stuffed everywhere. Seriously, I have them in both mine & my husband's cars, drawers, coats, bags and my purse! I also have blankets and several space heaters as well. I also have several pairs of gloves that I use as much as I can to keep my hands from getting cold.

I am new here and this is my first post, so I hope the info is useful! I am also glad that I am not alone in my battles!

- Marie :wub:

#16 Sweet

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Posted 02 December 2008 - 09:07 AM

Hi Marie, and welcome to the sclero forums!!

I'm so happy you've joined us. When you feel like it, tells us a bit more about yourself!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)