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I actually just developed, or just discovered that I have this.. It is absolutely horrible.. The night I found out something was wrong I was at my sons baseball game.. it was about 68 degrees outside and I was coaching.. all of a sudden someone asked me if I was ok, bc my hands where SOLID WHITE!! I knew they where hurting but I was busy.. that time I noticed my feet where beginning to hurt too!! I had no feeling just pain! i was absolutely terrified.. thinking it was a reaction to the slightly chilled weather I wrapped my hands in a jacket and tried rubbing them together.. NOTHING worked.. they stayed like this the duration of the game, about an hour and a half.. when I got home I realized my feet had turned too (explaining the pain) I rushed to the sink and treated it how I had read to treat hypothermia and run my hand and feet under cool water.. gradually increasing the temp.. until the color and feeling returned.. I went to the Doctor as soon as possible.. they explained this disease.. Im not sure if its a graduating disease or not.. sometimes I think mine is getting worse. It reacts sometimes to warmer weather now. I began to experience the early stages of an episode last week in 72 degree weather.. not having gloves I put my hands between my thighs as I sat at my sons ball game.. It was horrible not being able to clap because of the pain. Does anyone know if this is a disorder that worsens with time?
I dont wish this on anyone, but it is nice to know Im not the only one out there!! any advice would be great!! All I know to do is keep gloves with me.. just in case.. what do you do when you have an episode and your not prepared?? and cant get to warmth.. In the south the weather changes so fast you never know what its going to be.,. like today started at 70 went to 76 and is now 54!!! Im in flip flops and a dress shirt.. inside right now.. but im experiencing the early signs already..
I'm wondering if there is anyone out there that had spinal surgery (or any back surgery) and later on like a couple years later ended up with Raynauds? I know two people that had the same kind of surgery and they both ended up with Raynauds. Never had any signs of it before they had the surgery.
My mom has this and so did her mom. Her hands get blue in the cold weather. She bought those hand warmers called hotties and puts them in her gloves when she is outside and driving in the winter. She does not have in her feet though.It's not too severe but it does bother her.
While in hospital for a short stay I was mixed with people with this illness...I had never known how serious it could be.. two of them had to go to hospital every fortnight for two or three days for transfusions , so it can be very debilitating in severe cases..
General care
Environmental triggers should be avoided, e.g. cold, vibration, etc.
Emotional stress is another recognized trigger.
Extremities should be kept warm
Consumption of caffeine and other stimulants and vasoconstrictors must be prevented.
Location: somewhere between Lk. Michigan & Lk. Huron
5,585 posts, read 984,816 times
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Quote:
Originally Posted by Mfoxhollow
I'm wondering if there is anyone out there that had spinal surgery (or any back surgery) and later on like a couple years later ended up with Raynauds? I know two people that had the same kind of surgery and they both ended up with Raynauds. Never had any signs of it before they had the surgery.
Having Raynaud's myself, I've never had spinal or back surgery, not sure if the 2 people you know got Raynaud's as a result from having surgery or could be coincidental. Myself I did start having back pain a couple years before I was told by my family Dr. I had Raynaud's. Since having back pain it has gotten more severe, I went to a specialist & had an x-ray done, final result shows I have arthritis in my spine. My back can not stand any kind of cold or to even be a little bit chilled. I sometimes have to dress in layers, as a preventive to keep my back warm.
Quote:
Originally Posted by lubby
My mom has this and so did her mom. Her hands get blue in the cold weather. She bought those hand warmers called hotties and puts them in her gloves when she is outside and driving in the winter. She does not have in her feet though.It's not too severe but it does bother her.
I can identify having the same problem when my hands are cold. All I would need to do is have my hands under running cold water, to get the same results as being out in cold weather. I actually once thought everyone's hands turned blue in cold weather or under running cold water, but it is not necessarily so.
I just started to get these 2 fingers on my right hand and left hand go numb, and white with no feeling when the temperature is about - 5 celcius, or 22 Farenheit outside, or colder. Also my fingers turn white and go numb when looking for and handling food in the freezer. My fingers will stay white and numb until I get in the house, and they come back to normal in about 15 minutes. No pain really, other than emotional pain of dealing with this. Funny thing is that it only affects my index and middle fingers, and they go white and numb from the middle of the fingers to the fingertips. My thumbs and other fingers don't seem to be affected- but long exposure would freeze them as well. My toes do not freeze, so whatever is causing this, does not affect "all" body extremities. I'm 160 lbs. exercise 3 times a week, and am in good shape and good health -- but I do smoke. ( light smoker) When it's really cold outside I'm only good now for about 8-10 minutes, and that's with gloves on. Then fingers go numb -- but no pain. Maybe your circulation is not as strong when you get older ?? If that were true though, you would think my toes would freeze up, as well as my other fingers. My feet do get cold, but do not go numb and freeze. I should also mention that sometimes I take off my gloves when it's cold out to find my keys and open the door, and this accelerates this numbing of my fingers condition.
This just started happening to me at 63 years old, over the last 2 years. I live in Central Canada, and from November to March the temperature can go as low as -30 celcius, or - 25 below farenheit. That is very cold weather. I have thought now about moving to a warm climate --maybe California, or the Philippines.
For myself, it's not near as serious as some posters on here, and I also think it could be nerve damage and the nerves are shutting off the blood flow when it's cold outside. Raynauds disease can be brought on from handling vibrating tools, or things that can put unnatural pressure on your fingertips, according to the Mayo Clinic site. I'm thinking when I weightlift and roll weights with my fingers, this may be causing this, but I've done this for 20 years, and it's not happened before ??
What I'm going to try -- is to buy heated gloves. I don't know how they work, but they are electrically heated somehow--I guess with batteries. I don't know what else I can do, maybe try stopping some exercises that put pressure on my fingertips. Maybe someone has some suggestions ?? By reading the posts, it seems there is no "magical answers" other than keep your hands away from the cold.
I have Raynaud's in all but three fingers. Those three have Perniosis - on my dominant hand. Pernio is sort of an extreme version of Raynaud's. You can read more here:
While my Raynaud's fingers will warm up and go back to normal when they come in from the cold, the Pernio fingers do not . . . they will stay purple and painful for months at a time. During those months I lose the function of those fingers - they are too swollen and painful to be of any use. My trigger temperature is 55* - used to be below 32* but I have become more sensitive over time.
Both problems do better with heavy fleece mittens than with gloves. I also use vinyl or nitrile gloves as a glove liner - vinyl or nitrile gloves make my hands sweat when I use them for cleaning or scrubbing so I figured they might help keep my fingers warm when worn under mittens. They have made a huge difference. You could use latex gloves - I'm allergic to latex so use the vinyl or nitrile instead. I get them at Walmart's pharmacy.
I also use those little handwarmer packets that you activate by squeezing. Those help too.
I have heated gloves on my wish list. If my current method ceases to work, those are next. Here's the best source I've found. A friend from northern Michigan is a road cyclist/marathon runner and uses heated gloves in the winter. She swears by them.
They have lots of other heated warming devices too.
A word of warning . . . whatever you do, do not heat up your Raynaud's fingers too quickly! If you do, you can permanently damage the capillaries and wind up with Pernio as I did. My fingers would be so frozen when I'd come in that I'd put them in the hottest water I could stand. I learned the hard way not to do that. Gradual warming is the way to go.
As a further warning - I've been warned by several doctors to really be careful with my fingers and protect them as it is possible for the poor circulation to lead to gangrene and then to finger-tip amputation. So take heed. We are also more prone to frostbite. One of my neighbors has actually had the finger-tip amputation and suffers the after-effects - they are now painful every day regardless of weather.
If you do decide to move to California, remember the foothill and mountain areas of the state can get very cold. I live in Northern California - we got down to 9* at my former foothill location. I'm now in a somewhat warmer area but still have problems and may move to Arizona on the doctor's recommendation. So choose your location carefully.
Ive had it for much of my life. Just in fingers, not toes. Never smoked. I dont think it has worsened with age. And I spend alot of time outside here in New England. Leather Insulated Mittens are much better than gloves. Since most fingers are together that helps some. The chemical hand warmers or rechargeable hand warmers also help. What also helps is a handwarmer muff. You can put the chemical handwarmer packet in the muff and then stick yourhand in when necessary. For me, if my fingers go white, if I can get them to get warm again, then the change wont occur again. I have no idea why.
I have Raynaud's in all but three fingers. Those three have Perniosis - on my dominant hand. Pernio is sort of an extreme version of Raynaud's. You can read more here:
While my Raynaud's fingers will warm up and go back to normal when they come in from the cold, the Pernio fingers do not . . . they will stay purple and painful for months at a time. During those months I lose the function of those fingers - they are too swollen and painful to be of any use. My trigger temperature is 55* - used to be below 32* but I have become more sensitive over time.
Both problems do better with heavy fleece mittens than with gloves. I also use vinyl or nitrile gloves as a glove liner - vinyl or nitrile gloves make my hands sweat when I use them for cleaning or scrubbing so I figured they might help keep my fingers warm when worn under mittens. They have made a huge difference. You could use latex gloves - I'm allergic to latex so use the vinyl or nitrile instead. I get them at Walmart's pharmacy.
I also use those little handwarmer packets that you activate by squeezing. Those help too.
I have heated gloves on my wish list. If my current method ceases to work, those are next. Here's the best source I've found. A friend from northern Michigan is a road cyclist/marathon runner and uses heated gloves in the winter. She swears by them.
They have lots of other heated warming devices too.
A word of warning . . . whatever you do, do not heat up your Raynaud's fingers too quickly! If you do, you can permanently damage the capillaries and wind up with Pernio as I did. My fingers would be so frozen when I'd come in that I'd put them in the hottest water I could stand. I learned the hard way not to do that. Gradual warming is the way to go.
As a further warning - I've been warned by several doctors to really be careful with my fingers and protect them as it is possible for the poor circulation to lead to gangrene and then to finger-tip amputation. So take heed. We are also more prone to frostbite. One of my neighbors has actually had the finger-tip amputation and suffers the after-effects - they are now painful every day regardless of weather.
If you do decide to move to California, remember the foothill and mountain areas of the state can get very cold. I live in Northern California - we got down to 9* at my former foothill location. I'm now in a somewhat warmer area but still have problems and may move to Arizona on the doctor's recommendation. So choose your location carefully.
Best of luck in managing your fingers.
Just to clarify (I missed the window for an edit) . . . those mittens I referenced should have read "sheep fleece lined mittens". Big difference between fleece as in pajamas and sheep fleece. Sorry about that.
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Fingers Going Numb-White Fingers
