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How careful do I have to be?


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#1 catherinechaos

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Posted 07 April 2008 - 02:53 AM

I'd really appreciate your opinions on this one - I've had systemic scleroderma for 12 years now but it seems to be progressing very slowly. I have some lung involvement but no shortness of breath. I feel sick a lot and tired and I get ulcers regularly and the finger pulp has gone from a few of my fingers. But I have Raynaud's attacks all the time, even in the warm.

My question finally is this - how careful do I need to be? If I allow myself to get cold does that increase ulcers? What chance if I get loads of ulcers is there that I may increase the chances of getting gangrene. I don't want to be a drama queen because I realise there are people a lot worse off than I am but I also don't want to be naive about what I may have to face in the future? Any comments?

#2 LisaBulman

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Posted 07 April 2008 - 03:07 AM

Hi Catherine,
You need to be very careful!! If your fingers are cold then there is not enough blood supply getting them. The chances of getting an ulcer is increased. If you already have an ulcer it needs the blood flow and warmth to heal. I too have Raynaud's attacks all the time but you need to do your best in trying to keep them under control. Click here for info on Raynaud's, here for Raynaud's Prevention and here for finger ulcers. I hope this helps.
Hugs,
Lisa


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#3 catherinechaos

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Posted 07 April 2008 - 05:15 AM

Thanks for the links, I'll give them a good look but I am sat in an office with the heater directly on me all day and my hands are dark blue. I couldn't be any warmer and I wondered if anyone would share their personal experiences of how long they had ulcers for before they got gangrene etc. How do we live our everyday lives sensibly with these symptoms? Is it really necessary to have the ulcers dressed ect. I'd really appreciate all your answers.

I have to go home from work now but I will be back on line in the morning so I may disappear for a while.

Thanks

#4 KarenL

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Posted 07 April 2008 - 05:25 AM

Hi Catherine,

The good news is that if you've had the disease for 12 years with slow or no progression, you probably won't get much worse.! :)

The other news is you have to be extremely careful with Raynaud's!! Treat every episode of Raynaud's as a medical emergency. (My doctor said that). I don't mean run to the ER or anything, but you MUST do everything you can to keep those fingers warm. I too, suffer severe Raynaud's and lost part of a finger to gangrene. Trust me, you DO NOT want to go through that. I've NEVER had an ulcer, you don't need an ulcer to get gangrene. I was on 4 kinds of pain meds and became immune to each of them over the course of 8 months while my finger slowly died. My doctor said (and I quote) "losing a finger is the worst pain in the world because of all the nerve endings there". I can remember holding my finger and screaming, rocking like a baby hour after hour. PLEASE do not think you are a 'drama queen', this is a serious disease!! You must fight it on all fronts.

Some tips from me, buy hand warmers at hunting stores and use them faithfully. I buy them by the huge box at club type store. Get a heating pad and keep it on your lap, or even under your computer mouse, my right hand gets so cold at the computer! Make your family wear shorts so you can have the heat up. Have a heated blanket on your bed and one on the chair where you hang out. USE it! Get some of those neck things...or you can make your own...they have seeds, usually flax, but you can make them out of rice and a sock. You pop them in the microwave and they stay warm for a half hour or so. We have a hot tub, but hot baths can raise your core temp when things are really cold. Get space heaters and put them where you hang out. Get an automatic car starter and warm the car before you go outside. Wear mittens even if you feel silly in april... :blush: :blush: :blush: When you go food shopping, either bring someone with you to get the cold and frozen stuff, or keep mittens on with hand warmers in them. Wear layers, wear scarves, wear socks. Move south if all else fails! LOL.....but remember they use a lot of air conditioning down there, so that's just as bad actually....

Anyway, you get my drift! Bottom line, You are not a drama queen, this is serious. If you already experience ulcers and padding loss, please Catherine, be very very careful.

Peace,
Karen

#5 truman

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Posted 07 April 2008 - 09:03 AM

Hi Catherine:

I've have CREST going on 17 years now, and I am very grateful that it is minor in that it's basically my right arm and leg.

You must always be careful and treat each episode as if it could be life threatening.

Not to bore all again, but I just lost the large toe due to Raynauds induced ulcer.

Two operations since November; normal healing is usually 6-8 weeks. With our condition and cigarette smoking, could take forever.

Great news today though; Doctor says amputated area looking very good and isn't set on a skin graph yet if this keeps up. I know it was the Prednisone that kick started the healing, but he wants me off of it. He said sometimes the bad out ways the good.

Linda
Tru

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

#6 KarenL

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Posted 07 April 2008 - 09:24 AM

Hi again Catherine,

I saw that you posted again before my post got in there....I thought of some more things after I read your second post... :)

You will definitely want to have your blood work done. Many times we have very low iron which contributes to the blue hands. Also if you are a smoker...stop right now! :o It is one of the worst things you can do. Ask your doctor about medication if you're not on anything. Tracleer helps many people, as do some of the blood pressure meds. Your doctor should be helping you with these decisions...If you are indeed warm and your hands are still blue, go warm them up in some warm water, do not sit there with blue hands for too long!....put on mittens whenever possible. I keep hand warmers in my pants pockets at school, (I'm a teacher) or in the pocket of whatever top I'm wearing, like a jacket or sweater with pockets. My students are used to seeing me wear mittens even in the spring and summer!

Ask your doctor about nitro-bid to heal the ulcers. It's a nitroglycerine cream that opens blood vessels, put it around the base of your finger and cover with a band-aid. I do it at night because it can cause some nasty headaches, so if I'm asleep, I don't notice the head pain as much. The other thing I do is use band-aids with anti-biotic built into the band-aid itself. I keep the tip of a finger covered if it's threatening to ulcerate. Again, I've never had an ulcer, thank god, but I DID have gangrene, they don't necessarily go together. My gangrene started as severe pain, I mean like holding my hands up in front of me and crying constantly, (and I'm NOT a wimp with pain, I had three kids with no medication!) But that finger pain is bad. After the pain, which totally baffled the ER and my first awful doctor, I got a tiny black speck under the nail and then the nail started pulling away from the finger. The spot grew larger and somehow, a third doctor finally told me what was up. That was my first diagnosis.

All this winter one finger was split and sore, I thought for sure it would ulcerate, or go gangrene, but I diligently wrapped it and did all the other things I suggested and thankfully, it's almost healed at this point. I'm hoping the arrival of spring will help keep it safe.

I can't stress enough how important it is to keep those fingers from NOT turning blue as much as you can. It's a full time job! Good luck and keep us posted. Read the articles on this site as well...

Peace,
Karen

#7 CraigR

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Posted 07 April 2008 - 10:19 AM

Are you taking any medication for Raynauds? I've had CREST (CRST) for 31 years. First symptom was an ulcer on my right index finger. There are many meds - and each person seems to have different levels of success with different meds. Calcium channel blockers, Viagra, Cialis, Prazosin, Nitro cream. I never found nitro cream helpful - but calcium channel blockers and Prazosin were very helpful. Others have had the opposite experience.

I've always found that Raynaud's attacks have more to do with my overall body warmth. If the core temperature drops, the body shunts blood away from the arms and legs (even when you don't have Raynaud's - it's just much worse with Raynaud's). Thus it is very important to keep your whole body warm, not just the hands. A cool drink with ice will bring on an attack, even if my hands are not especially cold. Even though I live in a warm climate (southern California), I always wear thermal undershirts in the cooler time of year. A ski cap on the head is also very helpful, since quite a bit of heat is lost through the head (perhaps a problem with a fancy hair-do, but not for an old bald guy like me).

Craig

#8 truman

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Posted 07 April 2008 - 12:10 PM

KarenL:

I know the pain you are talking about. My doctor and I were just discussing it today. I told him I would punch holes in the wall and just scream at the top of my lungs, this for almost 5 months. I remember here posting I'd wish they'd just cut my toe off.

What a wish, huh? Well off it is, but if I have to relieve that pain prior again, I don't know that I could do it.

Linda
Tru

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

#9 peanut

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Posted 07 April 2008 - 12:55 PM

Hey all,
yup I take stuff for my raynauds Norvasc, Revatio & Nitro-bid. Carry gloves with you at all times cause you never know when it could get chilly or your hands turn blue and nothing else. Raynauds is so weird like that. Gloves are always good to have if you wanna get something out of the fridge or in the freezer section of the grocery store.

Does anyone find their hands are blue but not cold?
Weird (again)

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 barefut

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Posted 07 April 2008 - 06:00 PM

Peanut - blue but not cold yea me too.

Hi Catherine,

Are you taking any medication for your Raynaud's? Maybe you could ask your doctor to try someting new. Some people swear by Viagra and/or Cialis and have said that it has saved their fingers from amputation.

Karen - Good to know that ulcers do not HAVE to preceed gangrene. Also good to know how gangrene looks to start. From your description it sounds like I had the beginnings of gangrene early this winter! :o My doctor upped my medication to max dose and started nitro bid and all healed well.

Stay WARM all!!!

#11 catherinechaos

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Posted 07 April 2008 - 10:10 PM

Thank you so much for all your replies. KarenL, I really appreciate all the things you said and I will take much more care now. I was diagnosed at 22 but the consultant at the time didn't tell me what it was so I just lived with it and was probably too blase. Then when I was 32ish I got my first ulcer and looked it up on the internet and then when I went to my (different) doctor and said I thought I may have scleroderma he looked back in my notes and said 'Well you've had that all along' So that is probably why I don't take as much care as I should, because I had Raynauds for all that time without any consequence.

Now I can feel things are changing though so I will do all the things you've said. And take loads more care. Thanks for clarifying it and I will see the specialist and ask him about the meds you've recommended.

Thanks again for all your advice, I appreciate the time you've taken to help.

Cathy

#12 KarenL

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Posted 08 April 2008 - 04:26 AM

Tru,

It's not crazy to wish your toe cut off...I was kind of depressed when the doctor decided not to amputate my finger because I thought it would end the pain. Pain like that, makes you unable to make any decision except to get rid of the pain! I'm so glad to hear you are healing. Good luck!
KarenL

#13 KarenL

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Posted 08 April 2008 - 04:32 AM

Catherine,

You are most welcome. That's what this forum is all about, people helping people. I too had Raynaud's for about 13 years before I knew what to call it or that it even had a name. I just thought I was weird and cold. My kids used to tease me because I would put my mittens on the wood stove before we went out and sometimes they would start to burn! I also used to stand in front of the stove and turn like a rotisserie chicken! :lol: I do miss that wood stove! Anyway, glad to help. Keep coming on here and read the articles as well. Most doctors are willing to work with you, especially if you come in armed with information and questions. My doctor likes me being educated. Peace,
Karen

#14 beaty71

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Posted 08 April 2008 - 01:41 PM

Peanut,
I read that you take Revatio, my dr. prescibed it to me almost 1 month ago. I am curious about the dosage you take because he wasn't sure what to start me at, he asked me what I have read, but I couldn't remember the mg or how often. I am just taking 20mg and I noticed a difference in my ulcers in the first week (I currently have two,I have had them since fall) However the healing has slowed down some again but still seems to be working better than calcium channel blockers & beta blockers. I also had two starting on my other hand and they are healed, so I have faith that it will work if I get the dosage right.
I definetly understand the pain of ulcers, even my raynaud's without ulcers is incredibly painful. I do everything I can to protect my hands & feet, but there are times it seems nothing helps. :(
Sorry this is so long, I could keep typing about this all night so I will stop now.
I'm looking forward to summer,and wish warmth and happiness to all of you!
Diana

#15 Karenlee

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Posted 09 April 2008 - 12:58 AM

Hi Catherine,

I agree completely with those who talk about core body temp. I have a heating pad that I keep in bed with me and place it on my torso. That seems to help my hands and feet stay warm. I have an ulcer on my right hand on the knuckle that has been there for months. I sometimes put neosporin on and cover it with a bandaid overnight, and that helps heal it quicker than it would on it's own. Granted, it's healing very slowly, but healing non the less.

Do whatever you can to keep your hands warm and toasty. Even if you look silly like us going grocery shopping with gloves on. Better a funny look than cold painful hands.

Karen

#16 truman

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Posted 09 April 2008 - 01:43 AM

Karenlee:

I do the exact same thing. I keep the heating pad in bed with me covering my stomach area and just keep switching it on and off as needed.

I bought an electric blanket before holiday, but just don't have the energy yet to figure it out and put it on the bed. It means moving the bed to find the outlet, etc., not that peppy yet.
Tru

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

#17 bookworm

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Posted 09 April 2008 - 11:48 AM

Tru and Karenlee,
I do the same thing with the heating pad! I put it on my chest or stomach and I have two of my hot corn bags at my feet. It feels so wonderful to be warm! I live in Texas and spring has already arrived here and I am looking forward to lots of summer heat!

Mary in Texas

#18 peanut

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Posted 09 April 2008 - 12:21 PM

Diana,
For Raynauds & PH I take Revatio 20 mg 3 times a day.
I also take Norvasc and use nitro-bid cream for Raynauds.
I use it all... He He and I haven't had an ulcer in a few weeks...
knock on wood.

take care, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#19 Karenlee

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Posted 10 April 2008 - 01:18 AM

Mary-- that heating pad was originally purchased for my back, then when my space heater died I thought "hmmm this could work" haha. But yes, unless you are in the throws of a Raynaud's attack (in which case I'll wrap my hands in the pad) it seems to work best if you keep it on your tummy area. And um, what are hot corn bags?

Tru---well since it's getting warmer out you may not need that blanket until the fall :)