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Raynaud's Syndrome


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#1 AVR1962

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Posted 02 February 2012 - 03:07 AM

For those diagnosed with Raynaud's symdrone, just wondering if you chose to go on meds and did they help? Side effects? Or did you find something else that worked? Doc is suggesting I go on a prescribed med and I am always very weary so I was hoping to get some input.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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#2 CarolinaKip

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Posted 02 February 2012 - 03:20 AM

I have Raynauds as does my sister who has Lupus. I am not on meds for it at this time. I seem to only have problems with it if my hands or feet get too cold. I protect them in the winter with gloves , thick socks and thankfully I've had a mild winter so far. In the summer I have to watch the air conditioner also.

I have outside a.m. duty at my school and on very cold mornings I use hand warmers that hunters use in my gloves. I get to stay in my car if the temp is below 40.

Are you having a difficult time with your Raynauds? I've never been given an option of meds for mine. Good luck to you and be well :)
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#3 RiceGuy

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Posted 02 February 2012 - 05:42 AM

Some things that I know from experience which can help include magnesium, zinc, vitamin B12, garlic, ginger, curcumin (from turmeric), and omega-3s such as flax oil (or fish oil). Taking Epsom salt baths can help too, along with washing dishes by hand, and adding Epsom salt to the dish water. Here's a list of things you can include in your diet that should help: http://www.foodscout...irculation.html

Additional reading:
http://www.healthy-v...ry-support.html
http://www.oocities.org/raynauds_help/

Personally, I don't believe in taking meds, and I do think Raynaud's can be addressed via diet for most in not all sufferers. But most doctors have little if any nutritional training, so are typically not prepared to suggest anything but drugs. I know nutrition has made a real difference for me, to the point where I no longer even think about it most of the time. Only very rarely will I notice my hands turn color, but it doesn't last very long at all - typically gone in minutes.
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#4 Roda

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Posted 02 February 2012 - 06:57 AM

I was prescribed verapamil last year. I only took a few of the tablets, so I can't really say if it helped or not. I haven't taken anything for it otherwise and I am having a better time with it this winter. Air conditioners set me off too as well as getting stuff out of the freezer. Overall I feel better in general, wear gloves, socks/slippers, and a hat. I've even been wearing gloves when I have to get things out of the freezer. If something is to cold for me I have to let my husband deal with it. This comes up when we are preparing meats that have been frozen and are really cold.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#5 Gemini

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Posted 02 February 2012 - 08:59 AM

For those diagnosed with Raynaud's symdrone, just wondering if you chose to go on meds and did they help? Side effects? Or did you find something else that worked? Doc is suggesting I go on a prescribed med and I am always very weary so I was hoping to get some input.


I have Reynaud's Syndrome and some of the suggestions given here by other posters are good advice. I have refused to go to any Rheumatologists for my multiple autoimmune problems because they are for people who look to medication for answers and that rarely happens. I got sick of being hounded and you are smart for not wanting to take anything.

For the most part, my Reynaud's was really bad, pre-gluten free. I had to wear gloves all the time and my hands lost all circulation when exposed to cold. I like winter so this was not an option for me. However, since going gluten-free, the symptoms of this problem have diminished dramatically because I have knocked the inflammation way down in my body. I no longer have to wear gloves food shopping or to go into the freezer. The only time I have a problem is when it is very cold outside and now it is restricted to my middle finger ( :P ), at the very tip. They get blanched for a few seconds but I can now warm them up quickly enough and I am fine. There will always be a little discomfort but nothing to bother me much. My feet and hands are always cold, mainly to others as I notice no major discomfort, but I also have Sjogren's Syndrome and Hashi's thyroid disease. Yeah, I sound like a mess but the gluten-free diet has saved me. All of my symptoms have greatly diminished, although still there to some degree.

Stay strictly gluten free and see what happens. Use whatever extra's like gloves to keep you warm. Exercise is very important, especially cardio as that gets the circulation going to the outer extremities. I must say it was the gluten-free diet that made most of the difference but I have had these problems for so long, it is my new normal and I can live with everything as it is....which is way better than when I was eating gluten. I caution you about taking any meds though....they can cause more problems than they cure. Autoimmune disease rarely responds to drug therapy....this isn't a virus or infection.

Heated gloves sound like an excellent idea! :D
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#6 AVR1962

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Posted 02 February 2012 - 09:19 AM

I have Raynauds as does my sister who has Lupus. I am not on meds for it at this time. I seem to only have problems with it if my hands or feet get too cold. I protect them in the winter with gloves , thick socks and thankfully I've had a mild winter so far. In the summer I have to watch the air conditioner also.

I have outside a.m. duty at my school and on very cold mornings I use hand warmers that hunters use in my gloves. I get to stay in my car if the temp is below 40.

Are you having a difficult time with your Raynauds? I've never been given an option of meds for mine. Good luck to you and be well :)

Yes, been dealing with it for over 20 years but it has gotten worse. I almost cannot warm up now. Feet are red (purple). I am always bundled.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 AVR1962

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Posted 02 February 2012 - 09:27 AM

Some things that I know from experience which can help include magnesium, zinc, vitamin B12, garlic, ginger, curcumin (from turmeric), and omega-3s such as flax oil (or fish oil). Taking Epsom salt baths can help too, along with washing dishes by hand, and adding Epsom salt to the dish water. Here's a list of things you can include in your diet that should help: http://www.foodscout...irculation.html

Additional reading:
http://www.healthy-v...ry-support.html
http://www.oocities.org/raynauds_help/

Personally, I don't believe in taking meds, and I do think Raynaud's can be addressed via diet for most in not all sufferers. But most doctors have little if any nutritional training, so are typically not prepared to suggest anything but drugs. I know nutrition has made a real difference for me, to the point where I no longer even think about it most of the time. Only very rarely will I notice my hands turn color, but it doesn't last very long at all - typically gone in minutes.

Thanks for the links, I will check them out. I do take in the vits you have mentioned and unfortunately it's not enough or just not working anymore. I used to be able to control this, and I too am all for vits and against prescripts at all costs. The only thing I have not tried that I have read about is ginger and rubbing the feet with borage oil and cayenne.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#8 AVR1962

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Posted 02 February 2012 - 09:35 AM

I have Reynaud's Syndrome and some of the suggestions given here by other posters are good advice. I have refused to go to any Rheumatologists for my multiple autoimmune problems because they are for people who look to medication for answers and that rarely happens. I got sick of being hounded and you are smart for not wanting to take anything.

For the most part, my Reynaud's was really bad, pre-gluten free. I had to wear gloves all the time and my hands lost all circulation when exposed to cold. I like winter so this was not an option for me. However, since going gluten-free, the symptoms of this problem have diminished dramatically because I have knocked the inflammation way down in my body. I no longer have to wear gloves food shopping or to go into the freezer. The only time I have a problem is when it is very cold outside and now it is restricted to my middle finger ( :P ), at the very tip. They get blanched for a few seconds but I can now warm them up quickly enough and I am fine. There will always be a little discomfort but nothing to bother me much. My feet and hands are always cold, mainly to others as I notice no major discomfort, but I also have Sjogren's Syndrome and Hashi's thyroid disease. Yeah, I sound like a mess but the gluten-free diet has saved me. All of my symptoms have greatly diminished, although still there to some degree.

Stay strictly gluten free and see what happens. Use whatever extra's like gloves to keep you warm. Exercise is very important, especially cardio as that gets the circulation going to the outer extremities. I must say it was the gluten-free diet that made most of the difference but I have had these problems for so long, it is my new normal and I can live with everything as it is....which is way better than when I was eating gluten. I caution you about taking any meds though....they can cause more problems than they cure. Autoimmune disease rarely responds to drug therapy....this isn't a virus or infection.

Heated gloves sound like an excellent idea! :D

I have a feeling that right now my system is just a little compromised yet as so many things have been going wrong. It's been a wild goose chance to keep up with the next thing that goes wrong and I am thinking that I am in an inflamed state. However, I not not having much luck getting everything to simmer down right now. I have come a long long way in 9 months but I thinking my body is still attacking itself. I do notice a difference when I get exercise and I probably need to make a point to get more and see if I can get my feet back to a normal color again.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#9 Jen Z

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Posted 08 February 2012 - 01:03 PM

Many years ago when first diagnosed with Raynaud's as a teen, I took meds when I was really symptomatic (Isoptin (Verapamil). For me, the side effects were worse because they caused such a rapid heart rate and flushing. I do have MVP and palpitations so the meds just exacerbated that.
This year, I have been having a really tough time with my feet at night. I bought an electric throw size blanket and cocoon wrap it around my legs and feet when I get in bed at night. I am finally able to sleep again and shed my wool socks and long john bottoms at some point during the night. No more mittens either. The flannel sheets and electric blanket have really made a huge difference.
Interestingly, I have discovered that I have Sjogrens as well. Drs never mentioned it even though I have been treated for dry eye and map-dot-fingerprint dystrophy for 20 yrs. I did swallow tests a few years ago because I so often choke on food or just plain air. Interesting that a diagnosis of celiac disease led me to connect the dots on my other symptoms. Thank goodness for the internet.
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#10 Gemini

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Posted 08 February 2012 - 03:03 PM

Many years ago when first diagnosed with Raynaud's as a teen, I took meds when I was really symptomatic (Isoptin (Verapamil). For me, the side effects were worse because they caused such a rapid heart rate and flushing. I do have MVP and palpitations so the meds just exacerbated that.
This year, I have been having a really tough time with my feet at night. I bought an electric throw size blanket and cocoon wrap it around my legs and feet when I get in bed at night. I am finally able to sleep again and shed my wool socks and long john bottoms at some point during the night. No more mittens either. The flannel sheets and electric blanket have really made a huge difference.
Interestingly, I have discovered that I have Sjogrens as well. Drs never mentioned it even though I have been treated for dry eye and map-dot-fingerprint dystrophy for 20 yrs. I did swallow tests a few years ago because I so often choke on food or just plain air. Interesting that a diagnosis of celiac disease led me to connect the dots on my other symptoms. Thank goodness for the internet.


I also have both Raynaud's and Sjogren's and diagnosed myself because the docs just missed everything. I went back to them and asked for the blood work for the Sjogren's and it turned out positive. You are correct...thank goodness for the internet but doctors absolutely hate that!

What all of you need are hot flashes. :P I use flannel sheets all the time and love them but could never use an electric blanket. My feet and hands are cold but not bad enough that they bother me...I guess I have gotten used to it. But the hot flashes help a lot...no kidding! Nothing gets the blood going like a good, old fashioned hot flash. It's weird...I am roasting when I have one yet the hands and feet are still cold...not as bad as pre-flash but they never warm up except after exercise at the gym. I just wish it would last!
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#11 badgerette

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Posted 29 February 2012 - 05:38 PM

oooh, thanks for that info, RiceGuy!

I've had Raynaud's for a few years now. It mostly affects my toes, but if I'm stressed my fingers will easily be affected too. This year, for the first time, I've been getting something called chilblains on my toes. They are very painful and frustrating to deal with. I've been told by the doc to keep my toes well moisturized to help w/circulation, and I also started putting eucalyptus oil on my toes because that supposedly helps with circulation as well. I've also read that ginkgo is approved by the World Health Organization to help circulation, so I bought a bottle... and promptly found out it shouldn't be taken with elavil, which I take for my interstitial cystitis :( BUT that might help YOU. Docs have not recommended any meds for me at this point and I'm 100% ok with that.

I, too, love the electric blanket at night, and wearing slippers in the house is a must. For me, it doesn't matter WHAT I put on my feet- they always freak out when it's cold and I live in the sub-arctic hahaha.

Good luck!
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#12 AVR1962

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Posted 29 February 2012 - 10:57 PM

Thanks for that info Badgerette, it is worth a try!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#13 Pandoranitemare

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Posted 02 March 2012 - 01:43 PM

I have Raynaulds, but I am on so many meds for other things that I don't even want to consider taking anything else.
I have found a great handwarmer that runs on lighter fuel, it stays warm for several hours at a time, so is much better than the gel type ones which only last an hour or so. Check out Ebay, there are also ones which run on charcoal blocks, but they have the slight disadvantage of requiring a supply of refills, whereas the fuel ones run on standard lighter fuel (the liquid not the gas).
I also keep a pair of thermal mittens by the freezer, which I always put on before diving in. I read that mittens keep the hands warmer than gloves. Simple things like keeping mittens in literally every coat I have, so I never get caught out if the weather turns, even though I do wear fingerless gloves all the time anyway is helpful to limit attacks.
Sometimes it has been so bad that the only way I have been able to get the feeling back in my hands has been to take a warm shower, so I really do try to aim for prevention as much as possible.
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#14 AVR1962

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Posted 03 March 2012 - 02:12 AM

I was reading about a lady's personal experience with Reynaud's. She was forced to wash her hair and do dishes in cold water due to her temp living situation. To all of us that sounds like a nightmare but what she found out is that after doing this repeatedly it actually helped her hands adjust nd she could tolerate the cold better. I was actually thinking about giving this a try.

I did buy some socks that are bamboo charcoal and are supposed to react to your own body heat, thought I would give them a try.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#15 Blue-eyed bandit

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Posted 05 April 2012 - 07:42 PM

I'm wondering if everyone with raynoulds if you also experience mottled like skin when cold- like a lacy overlay on ur skin?? My dermatologist saw this today on my skin and now I'm being tested for lupus and antiphosophlipids etc. I'm scared to be diagnosed with yet another problem.
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