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Raynaud's Treatment


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#1 enzed

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Posted 29 December 2011 - 05:58 PM

I joined the forum in 2009 when first diagnosed with scleroderma and Raynauds but did not post then. I visited the forum for information. I was living in New Zealand and found the cold weather made it impossible to keep my hands warm enough so moved to Queensland at the end of 2009 to a much warmer climate.

In 2010 a nasty Raynauds attack caused the top joint of one finger to go black and I ended up in the emergency room having pain medication while they tried to save the finger from amputation, which thankfully, they did. They dealt with a blood clot in the finger and tried out 2 other treatments that worked to get the blood moving through my fingers again. There was an ulcer under the finger nail.

The hospital pharmacist suggested that I apply a small amount of nitroglycerine cream to my fingers and that helped to open the blood vessels. I kept my fingers covered with cotton gloves underneath warmer gloves. I also bought a pair of electrically heated plastic mittens from a 'beauty' supply shop and warmed my hands inside them several times a day to keep the blood moving.

The ulcer took a year to heal and the finger is misshapen as a result of the hole the ulcer left but I now know how to keep my fingers warm. I also keep my feet, back and head warm as that apparently retains heat in the fingers as well. Before going into air conditioned shops I always put on a warm jacket and gloves I keep in the car. People do look at me strangely but that's preferable to being in the emergency room! I just ignore them.

I thought this information might help someone else with Raynauds.

#2 Robyn Sims

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Posted 29 December 2011 - 06:14 PM

Hi Enzed,

Firstly, welcome to posting on our Forum, not just surfing!!

You have some very interesting advice there for others who may find your ideas helpful. Thanks for sharing this information.

I wonder if you had done all those things in New Zealand would you have had the same relief? It's an enigma as to whether your body get's used to the warmer weather and reacts to a lesser temperature.

Look forward to hearing more from you and appreciate your interest in others.

#3 Sweet

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Posted 30 December 2011 - 11:33 AM

Hello enzed and welcome!

You're part of the world is beautiful! I've traveled there numerous times over the past 3 years.

I can relate to your Raynaud's dilemma. Sometimes even where I wear gloves , I still have attacks. I do get strange looks at times when I'm wearing shorts, tank top, and GLOVES!

Again, welcome.
Warm and gentle hugs,

Pamela
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#4 enzed

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Posted 30 December 2011 - 11:47 PM

Thanks very much for the welcome.

No enigma about attempting to equalize temperatures in a New Zealand winter, with snow on the mountain visible from my home, with being first into the workplace in the mornings and having to turn on the heating to crank up the inside temperature from zero and not being able to work in gloves while the office warmed up. A wood stove at home that often burned out before I got back from work, so out of a warm car and into another very cold place. Carrying firewood inside was also difficult and injured my hands that were often numb regardless of wearing two pairs of gloves and being well wrapped up not to mention the Canadian fur lined snow boots I wore inside and out!. The constant fluctuations in temperature were very harmful to my fingers and with a doctor warning of amputations, leaving was the best decision I could make.

My fingers improved slowly after moving to Queensland but were already bloodless, numb and badly swollen on arrival. They hadn't recovered sufficiently when one finger went black. Now all fingers are pink and it's easy to keep them warm in this climate. I still sleep wearing gloves, even in high temperatures, as hours of inactivity while sleeping cause my fingers to swell and hurt. But there's been a huge improvement since moving to a hot climate. I still dress more warmly than those around me as a higher body temperature does keep the blood in my fingers circulating, with or without gloves. Air conditioned shops remind me of home but not in a good way! I'm in and out as fast as I can grab what I want.

I forgot to mention that the finger ulcer finally healed after taking zinc tablets daily for 3 weeks. A range of topical ointments, both prescribed and over the counter, had not previously worked to close the ulcer. I also had a Vitamin D deficiency when I arrived in Queensland but that is now reversed. I attribute that to the sunshine as well as the Vitamin D supplements I took for a few weeks. I found both remedies on Sclero.org which was a great help.

#5 Joelf

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Posted 31 December 2011 - 07:12 AM

Hi Enzed,

Welcome to these forums!

I'm very pleased to hear that your fingers have improved since you've been living in a warmer climate. I also suffer with Raynaud's so I can really understand how you're feeling, although thankfully my fingers haven't quite reached the stage of turning black as yours did.

I've included a link to Raynaud's Treatments which I hope will give you some more information and help and also we have a recent thread Questions on Medications for Raynaud's which I hope you'll find interesting.

Now that you've started posting do please continue and let us know how you're faring! :emoticons-group-hug:

Kind regards,

Jo Frowde
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#6 Amanda Thorpe

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Posted 31 December 2011 - 01:27 PM

Hello Enzed

Welcome to the forums! You make an important point about keeping core body temperature up as well in the battle to keep Raynaud's at bay. There's no point in trying to warm up the hands and feet if your body is cold, it just doesn't work.

Take care and keep posting.
Amanda Thorpe
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#7 Robyn Sims

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Posted 31 December 2011 - 07:37 PM

Hi again Enzed

Seems that your move to Australia certainly has almost done the trick!

I like the fact that you mentioned that you keep your whole body warm. Keeping the core temperature up is extremely important.

I am in Melbourne and as I am heavily involved with Scleroderma Victoria and Scleroderma Australia, I come across many people with scleroderma. I have attended approximately ten seminars, and off to Madrid at the end of January to attend to 2nd World Systemic Congress. The last one in Florence two years ago was certainly a worthwhile trip.

I do not have scleroderma myself, my daughter does, so going to these places when it is winter is very difficult for those members with scleroderma, thus I get the job. I have been asked to bring along 500 of our sunflower pins as this emblem has been adopted for scleroderma awareness in the UK and Europe. I will also be speaking with the representatives of many European countries to share our ideas and what has been happening.

So no more fetching wood and getting to work early to turn up the heating. I know my daughter found it very difficult at work as others felt it was too hot, but they were very understanding.

Look forward to hearing from you again!

#8 FaithHopeLove

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Posted 02 January 2012 - 03:41 PM

Hi Enzed
So sorry to hear of the difficulty you've had with your fingers. I glad they have improved and I thank you for your advice. I totally relate to your situation as I too suffer from severe Raynauds (though thanks be to God have not experienced blackened fingers) and I am unable to take vasodialating meds due to extremely low BP. I have considered moving North but for family reasons am unable to do so. I can only imagine what a difficult but necessary decision it was for you to make to move to Qld.
We are curently staying at Port Elliot South Australia and yesterday experienced 40°C temp with power blackouts (yeah no aircon! :) ) and I couldn't swim in the ocean with my children due to the cold water, which is very difficult for them to understand.
I agree that keeping your core temperature warm is essential. I am never without a wrap or jacket and gloves. (I need to work on reducing emotional stress as this also triggers an attack.) I just smile when people call me crazy. :)
My feet are also badly affected (toes bloodless, numb and stiff). You mentioned you wore wool lined boots in NZ. What footware have you chosen in Qld? Thongs and sandals are not working for me.
I hope you continue to experience improvement and I look foward to reading more of your journey.

#9 enzed

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Posted 03 January 2012 - 04:13 AM

Thanks everyone for the information on medications and also for sharing your stories and information. I was prescribed Adalat and also Isomonit but the rheumatologist stopped the Adalat and reduced the Isomonit 6 months ago. So far that's working well.

Hi FaithHopeLove, regarding footwear, I still wear warm boots in the Queensland winter as I find keeping my feet really warm seems to keep my fingers warm as well. In fact, I have just ordered another pair of fur lined boots from overseas! They will arrive before the winter. I do wear sandals here in tropical north Queensland summers, but still get out of shorts and back into warmer clothes in the evenings when the sun is gone and wear socks and slippers then too.

I am surrounded by swimming pools but only went in once, and was shocked by how rapidly my fingers turned white. I got out of the pool pretty fast! I had kept my hands out of the water as I still had an ulcer then, so the only explanation for my fingers going white was because the cool water reduced my body temperature rapidly which in turn stripped the heat from my fingers. It was almost instant. I can surely understand your desire to move north to a warmer climate. I certainly don't regret my move. Sure New Zealand is beautiful, but I prefer it on a postcard, and Australia is just as beautiful anyway. Different but just as stunning.

Saw an interesting TV program where they did an experiment with fans to find out if fans cool the room or the person. Turned out that the room temperature stayed exactly the same with fans going while the body temperature of the person dropped. For that reason I no longer sit under a fan and if it gets too hot and humid I use reverse cycle air conditioning at a high temperature of 27 degrees C or higher, and that dries up the humidity without chilling me.

#10 Robyn Sims

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Posted 03 January 2012 - 04:36 AM

Hi Enzed,

Thanks for your post. I was very interested in the way you use your air-con. What a good idea?

Yes, New Zealand is beautiful on the post card, and so too is Queensland. We are very fortunate to live is societies which have all the help we need.

Take care,

#11 enzed

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Posted 03 January 2012 - 06:55 PM

I'm now looking for thermal vests for next winter. I had some I threw out because they were sticky to wear, being made of polyester so they didn't 'breathe'. I looked on ebay and there are some vests there made of a mixture of wool and cotton so they shouldn't sweat. Instead of adding extra warmth with outer clothes I am going to try thermal underwear instead, so I can wear lighter and more fashionable clothes that are not bulky. It's worth a try.

#12 judyt

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Posted 03 January 2012 - 08:13 PM

Hi Enzed from NZ!

Yes that's the idea, keep warm from the inside out. I find Merino vests and skinny ribs ideal, but it is a tad cooler here in Auckland than Queensland. As you have said in an earlier post, it's the aircon in shops that is the worst. Cotton and wool sounds ideal. People have talked in the past about pure silk being very good too. Don't like to think how expensive it would be but it would feel nice I am sure.

For a while a good many years ago we lived in Cape Town, South Africa and I found that a delightful climate except for the aircon. I manage very well in Auckland now. Our home is very warm because it is built to catch all the sun in the winter and that makes a huge difference.

The greatest thing that has happened for me over the past couple of years is that my Raynauds has gone - just gone - pouf!!! like magic. Mind you it started on an October day in 1966 when we were in England so I guess I've served my apprenticeship by now!!! Anyway, that could be something for you to look forward to. I still feel the cold and wear more clothes than everybody else, and I haven't been for a swim for about 6 years - but NO white fingers and toes is Bliss.

Best wishes to you

Warm Hugs

JudyT

#13 enzed

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Posted 03 January 2012 - 09:10 PM

That's very encouraging Judy, I look forward to the Raynauds disappearing one day soon!. I was in Auckland briefly last February to visit an ill friend but was glad to return to Queensland as the Raynaud's flared up in Auckland.

I will check out the price of silk vests.

Thanks for the tip. If they're too expensive I will try the merino vest first.

#14 Robyn Sims

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Posted 03 January 2012 - 11:57 PM

HI all,

Interesting that you are speaking of merino. I know some people may not approve but our organisation Scleroderma Victoria, have been purchasing for our members possum/merino gloves. You can also get other garments in this fabric as well, of course, we import from New Zealand!!

The benefit of the mix is the softness on the skin and it stretches better. We have found them very popular.

Good that we can share this information here.