I have a rather nasty case of Raynauds. I have it in my fingers, toes, nose, lips and ears. I have tried just about everything out there. I would love to hear if anybody has any ideas here. I have tried military style training to get rid of this problem, wearing many, many layers, hand and feet warmers, vitamin c, vitamin juices, different shoes, and different massage techniques... I have not been able to find many medicines on the market to take because I have a very acidic stomach. I ended up with a pretty severe intestine problem when I took medicine before. I have heard about Beta blockers, but I would love to find a solution to this problem without using medicine if at all possible. I have also tried Vitamin E which worked somewhat, but I felt terrible the entire time I was taking it so I stopped that rather quickly. I went from a few months ago just having pure white digits to now having grayish blackish digits almost looking like frostbite. Not really very promising in light of things. I would prefer not to lose any body parts before I get to a warmer climate before the end of the year. I have been prewarned that a warmer climate doesn't always mean much. I have had this for about three years now and it's just getting worse and worse. Does anybody know of anything. I have exhausted doctor's and websites alike. I find people are pretty creative so hopefully somebody has some ideas here. :)

I have had Raynaud's Phenomenon since I was a little girl. I'm now in my early 60's so I guess you could say I'm an "expert" on this particular problem.

Many years ago when I had migraines I took beta blockers. One of the side effects or benefits was that my Raynaud's symptoms went away. I would not recommend taking the beta blockers though as it will make a difference in your heart.

Raynaud's as you know is a circulation disorder. The blood gets trapped in the capillaries in the fingers, toes, etc. and is not returned to the heart to get warmed. When my hands get cold, I get one or more fingers that get dead white and have no color in them at all, and they hurt. I put my hands under warm water to warm them up or until the red color returns to the fingers.

I have been taking Niacinamide 500 mg for over 6 months and I have had good results from that. Niacinamide is over the counter capsules available just about anywhere. I started taking one capsule a day as I have a very sensitive stomach as well. I worked my way up to taking 2 in the morning and 2 at night. You cannot overdose on Niacinamide but it will make your stomach hurt if you take it without food or take too much too soon before you build up a tolerance to this.

I wear a nightcap to sleep in as I live in Ohio. I use a heating blanket and keep the heat on about 4 or 5 (the blanket goes from 1 to 10) when sleeping. I prewarm the bed for a few hours also.

I also dress in layers and wear wool socks on my feet and wear sheepskin boots and a fur hat with flaps for when it gets cold (State Trooper type hat) and a long down coat. And yes, I look silly, but who cares as I am warm and they aren't.

I have noticed that if I drink coffee in the morning and then go out and get in my car and drive 1/2 hour to work, my Raynauds will cause my hands and feet to get cold and have to be warmed up in warm water when I do get to work. And yes, the car's heater is turned on as well. My hands get cold from just holding onto the steering wheel and just sitting there. Inactivity causes my symptoms to get worse.

I lived in South Florida for 25 years and my Raynauds was still quite evident even during the summer months! The air conditioning would trigger my hands and feet to go cold at the height of summer. My hands would be white and cold even in 90 degree weather. So moving to Florida is not really the answer to your problem.

My mother was an RN for many years and never found anything to help me with this problem and believe me she tried asking all the doctors at different hospitals on my behalf.

You need to take long, hot baths (or showers) to get your body to properly circulate the blood trapped in your extremeties back to the heart/lungs to get properly warmed up. This is very important. Your hands should not be the grey color but pinkish color.

You will be wise to monitor your time outside in the winter as well. The other morning when it was well below zero windchill here I was cleaning off the snow and ice off my car my hands could only take about 10 minutes outside before I had to go back into the house and put under the water. And yes, I had two sets of gloves on at the time.

I keep my home at around 61-62 degrees and just dress warmly indoors as well. Trying to keep the house at say 78-80 degrees does not do anything for my condition except waste money heating the house. I wear sweaters or heavy robes over my street clothes (and wear a hat) in the house. My hands do get cold when I am on the computer as I don't wear gloves in the house. I just go and put under warm water to warm up every hour or so when needed.

My temperature when I wake up is usually around 97.0 and has been as low as 96.1. When I have a temp of 98.6 I am usually ill. Have you noticed that your body temp is low in the morning when you wake up?

You can ask me any question you wish about this condition as I probably have some of the answers that you need.

Wow I'm glad to hear I'm not the only one on this site with this problem. My mother happens to be an RN and has talked to many doctor's on my behalf as well. I will see if my body temperature drops in the morning that should be interesting. I'm moving to a warmer location for work. From what I've experienced a warmer climate has been very helpful. In fact when I spent the spring there a while back I seemed to completely lose the Raynauds. However the meer moment I worked in the kitchen, was in a cool swimming pool, or went out on a cool morning it was back in full swing. I get migranes and am careful not to take medication that will interact with my Raynauds. I have one heck of a time on days where I'm stuck outside doing business work. I feel it inappropriate to interrupt the one who's heading whatever we happen to be doing. Any ideas of what to say in these situations? My peers do not know my problem as the supervisors don't. I don't like saying "I have Raynauds I need to go back inside" because it usually is followed by a long array of explanation and a visual presentation not my favorite thing.

I know you mentioned the pinkish color have you ever had your toes turn a sort of grayish blackish color? I am a tad worried that one day I'm not going to realize it and I'm going to end up losing my toes from blood loss. For some reason I can not control my feet or my lips very well. My hands are not so bad, but the toes tend to worry me.

Another thing I experience is these intense hot spells. I can't hardly stand to be in my clothes. My skin turns bright red and my fingers swell from the heat. These usually last a half hour.

Another thing that tends to happen is I get extremely sweaty, everywhere. I may have white fingers and toes but I'm in a sort of cold sweat. My skin is usually ice cold at this point and I will sweat for hours and my body will remain unable to get warm.

I also have rather severe chest pain at points. Usually when I'm very, very cold. I lift weights and have at times believed the chest pain was corrolated with that.

I tend also to have very sensitive fingers and toes I don't like people touching them. They are obviously sensitive to the cold but also sensitive to the touch it's like when people touch me it irritates those nerve endings. I don't know.

Can you compare to anything from what I've listed above?

I have a personal heater and I use it as well as having the heat around a high eighty. At night I can not get warm. I must have fifteen or so blankets/comforters covering me and I can't get warm. When other's stay at the house they say they are sweltering with any blankets and then they ask how I can sleep with so many. I am very light weight. My doctor's have suggested gaining weight (easier said than done) to get rid of the Raynauds. Do you have any ideas for how to keep warm at night other than what I'm already doing?

Thanks by the way for responding

To keep warm at night use a heating blanket like I do. Toward morning you may have to turn the temp down. I'd start with a sheet, heating blanket, one light blanket and a comforter on top. Be sure to tuck in the bottom and bottom sides of the bed. This helps keep the heat into your "coccon" and keep you warm. I just wear a nightgown and a nightcap.

As far as the sweating stuff, I have that as well. It is your body's way of trying to generate heat and the result is sweat. When you start feeling like this, take a bath or shower and your symptoms should go away.

My nose gets cold as well. The best thing to do when your face and head gets cold is to wear a hat.

I've actually sat here at the computer with a heavy robe on and still put my down coat on to warm up. When I do get warmed up, I take the coat off. Yes, I know it's funny to wear a coat in the house, but I find that it works in less than 15 minutes to warm up if I don't feel like taking a bath or shower.

The fact you have migraines tells me that we have probably a very similar circulatory system. I took Elavil and a beta blocker under a neurologist's care for about 9 months to get rid of some very bad migraines. The combination of both drugs did work but it was a gradual thing and not an overnight cure. You don't want to take the beta blockers for longer than necessary. I was around 25 at the time. I found that cigarette smoke constricted my blood vessels considerably - 2nd hand smoke was just as bad. I could not be in a room with a smoker and had to find a job that had a no smoking office - quite a feat in the early 1980's before no smoking offices. You need to stay away from cigarette smoke to have your Raynauds symptoms from popping up.

I'll bet when you take your temp when you are sweaty it's probably in the 97.0-98.0 range. I know, mine is. It's a good thing to take your temp several times a day. This can also give you a snapshot of how your body is doing.

You are very sensitive to temperature changes in the air. I could never ride in a convertible car or have a window open as the wind chill would be very apparent very quickly to me.

My toes never turned a gray blackish color. For your toes to turn that color, you definitely need to start paying close attention to them. You should wear socks all the time to help with the heat loss.

The way to help out the situations you were asking about work wise - is to keep a sweater handy at all times. I wear a sweater in the summer in offices as the a/c coming out of the vents is generally way too cold for me and I will definitely suffer. So I wear a sweater, so what.

As far as gaining some weight, yes, that should help you as well. I know it might be hard to do, but you can try.

What medicines are you taking for the migraines? I've taken the whole gamut at one time or another. Just wondering.

I have actually just tried an array of different over the counter pills to help with my migranes... excedrin extra strength and the likes... I will try the temperature readings this evening and then tomorrow morning and see what comes up.
Thank you for all of you advice and help.