Cold Fingers and Toes: Raynaud’s Phenomena?

So this is something I noticed in 2013 when I first traveled to Ireland. Ireland was experiencing an extended winter so it was an average of 32 degrees outside and it was relatively windy as it is an island surrounded by the Atlantic Ocean. Walking around Dublin I started noticing very quickly that my fingers were becoming extremely cold to the point that they hurt. It felt as though I had held my hands in ice water till they were numb and then dunked them in hot water. I had several layers of gloves on, crossed my arms to keep my hands close to my core, and even still I had to return inside because it was so painful.

I had never experienced this in my life. Sure I grew up in southern California where 60 degrees Fahrenheit was considered to be “cold” but I was always the guy at parties who could hold my hands in a bucket of ice water the longest! If that sounds weird, don’t ask; just know it was a thing. I never had a problem in the mountains during winter when I used to snow board or just enjoy the colder weather. What was going on? Whenever I was in a cold environment I started noticing this pain in my hands even though the rest of my body felt fine, even hot!

I started looking into it and I kept coming across “Raynaud’s Phenomena” (named after Dr. Maurice Raynaud) so I asked my neurologist what he thought it might be (without mentioning Raynaud’s) and the first thing out of his mouth was in fact Raynaud’s

So what is Raynaud’s Phenomena? Raynaud’s Phenomena is when the small blood vessels in areas of your body such as your fingertips, toes, nose, or ears constrict when exposed to cold temperatures or even changes in emotions. There are different forms of Raynaud’s such as primary, which occurs with no apparent underlying cause. In secondary Reynaud’s, there is an underlying cause such as Rheumatoid Arthritis, certain forms of Lupus, or Multiple Sclerosis. Symptoms may include pain (obviously), pins and needles, numbness, throbbing, changing of the color of skin on the effected area, and joint pain. Now I don’t currently have access to all the medical books I used to have but from what I can find online you may only experience just one of these symptoms. At first I didn’t think this was a proper diagnosis because my fingers did not turn white, red, purple, or blue but apparently many people never experience color change.

Now that I am in Colorado where it is significantly colder (it’s currently 0 degrees Fahrenheit with a wind chill of -14 degrees) I am noticing this pain much more often. So I started looking into what can be done about it. Of course, the number one answers I came across were “try to keep warm” and “try not to touch cold objects”. Thank you Captain Obvious for that incredibly helpful advice. But from what I am reading it’s true, there really is nothing to do other than checking to make sure your medications are not causing this symptom and not smoking as the chemicals in tobacco contribute to narrowing blood vessels. In severe cases there are medications available to help dilate blood vessels but they can come with some side effects (such as headaches, flushing, and nausea) that may make taking them just not worth it. As I always say though; everyone is different. None of my medications seem to cause this symptom and I do not smoke so I guess the best remedy for this symptom of mine is to invest in a really good pair of gloves. You can also try using heating packs or electric powered heating gloves to keep warm, none of which I have tried as of yet.

I don’t know the statistics on MS and Raynaud’s (I just know it is very common among the population) but I can say that I have noticed a lot of people online in the various MS communities that I am involved with complaining of this issue. That’s another reason I wanted to look into it because no one had a name for it or even knew if it was MS related or not. I saw a pattern so I investigated and sure enough, MS can cause secondary Reynaud’s Phenomena. Obviously you will want to ask your neurologist about it before diagnosing yourself (even though there are no tests to confirm this symptom) but I am definitely curious; do you experience painfully cold body parts?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (44)
  • kr2726
    4 weeks ago

    I don’t have MS–I have lupus, and TERRIBLE Raynaud’s, which has afflicted me since the age of 11. I too live in Colorado, so I’m SOL. I’m writing this just because I got a good laugh out of your remark, “Thank you, Captain Obvious, for that very helpful information.” Sometimes I wonder that people think they needed to TELL us not to touch cold objects. Oh well, they MEANT well, or so I try to tell myself. In the meantime, I have never found a satisfactory treatment. My doc just gave me nitroglycerin cream, but it TOO hasn’t helped. My hands get better in heat, but when I go into an air conditioned building, it’s all over!

  • LisaP
    2 years ago

    RRMS and I am extremely cold sensitive! I have cold fingers and toes, even in the summer. Best temperature for me is 70-75 with no humidity. The heat & humidity also bothers me. Right now I’m having an exacerbation, or flair, due to heat. Ugh! I can’t win. Thank goodness for air-conditioning! However, I can’t have it on too high or I’m freezing. Always searching for the sweet spot. Lol…one day at a time!

  • Matt Allen G author
    2 years ago

    Life feels like Goldilocks and the three bears, always too hot or too cold, never juuuuust riiiight

  • susana
    2 years ago

    Yes, I was dx with raynauds in my early 30’s with MS last year (age 43) but my doc says my first occurrence on ms was in 2011. My raynauds has become increasingly painful over the years, mostly in my hands. If I let my fingers get to cold along with my core from sweating, The pains starts I get very weak and nauseous. This episode last for 10-15 mins then is becomes manageable but my finger tips remain sensitive to touch especially cold items for several hours. I’m a CO native grew up skiing (so exposed to cold) no one in my family has this or ms that I am aware of. I have found that taking Ubiquinol ToCoQ10 has helped some. But mostly knowing when I’m about to get into trouble I have to get out of the cold. Or even knowing that if it’s cold out and I want to ride my bike I bring several pairs of gloves to change out during my ride and even an extra base layer in case I get too sweaty and have a ways to ride still. I hope this helps.

  • Matt Allen G author
    2 years ago

    I used to live in the Springs, winter was horrible for my fingers! I had nice gloves but even still. They sell battery powered heated gloves, I really wanted to buy those but I moved back to California before I did.

  • jennyb
    2 years ago

    My mother had it so bad (her fingers and feet would turn white)that she never went swimming anywhere, ever. My sister had it, I had a white patch on my foot more than 30 years ago. My step daughter had it on her nipples while she was trying to nurse her baby. She told me that the reason I can’t handle cold hamburger is because of Reynaud’s. Really?

  • Matt Allen G author
    2 years ago

    I have never had discoloration just extreme pain specifically in my hands as I don’t seem to really have much feeling in my feet (regarding temperature)

  • tfs
    2 years ago

    Reynaud’s Syndrome – how interesting! I experienced this a young 20+ woman and felt it first appeared when I was learning how to scuba dive.(in extremely cold water, ice just off)(wet suit is exactly that) I was extremely careful after the Reynaud’s diagnosis, found it affected by stress, and always carefully wore extra gloves, etc. I thought I outgrew it. At 59, I was diagnosed with PPMS. I do experience tingling and white discolouration of skin. I was taught in my twenties to swing extremities to get blood flowing. I guess I will pay attention again and add some arm swings and toe lifts to physio. Thanks.

  • Matt Allen G author
    2 years ago

    I am not sure if I am doing something wrong or what but it seems like no matter how hard I try I can’t get the blood flowing enough to NOT feel like my fingers are freezing off!

  • trloftus
    2 years ago

    Absolutely. Sometimes my feet are so cold that I use the blow dryer to try and warm them up. It’s only somewhat effective. My fingers experience it too, compounding the numbness that I experience with my finger tips – regardless of temperature.
    I just adjusted my activities to avoid touching cold or being exposed to cold for extended periods. Just another challenge to deal with. I figure it’s the least of my problems and move on.

  • Matt Allen G author
    2 years ago

    I am honestly not sure? I imagine so but I would have to ask my doctor/look into it more.

  • trloftus
    2 years ago

    I also should say that whenever measured, I have slightly low blood pressure and a slower than average heart rate. Are these facts related to the Raynaud’s?

  • DonnaFA moderator
    2 years ago

    Hi Tim! According to the Mayo Clinic the symptom’s of Raynaud’s are: Cold fingers or toes; Color changes in your skin in response to cold or stress; Numb, prickly feeling or stinging pain upon warming or stress relief. You may be interested in checking out Lisa’s article about Raynaud’s as well.

    We’re glad you here and we’re always happy to share support and information! -All Best, Donna (MultipleSclerosis.net team)

  • Suzy Farmer
    2 years ago

    No high blood pressure, amlodipine is just for the raynauds, and it works! I might take it once a week in the winter, but not in the summer.
    Actually I have low blood pressure.

  • Matt Allen G author
    2 years ago

    Crazy! If it was an issue for me more often I would ask my doctor about it but I live in Southern California right now so “cold” is like 50-60 degrees haha. Maybe if I get back to Colorado because that was severe!

  • Suzy Farmer
    2 years ago

    Hi Matt
    A good article. I have had MS for over 25 years, and only in the last few has raynauds appeared. I do use amlodipine, but only when raynauds is a problem, and I use half a tablet of 5 mg strength. I take it when I know I am going to be out in the cold, which is quite often in the winter as I live in Alberta. However, by only taking it when I need it I do not suffer from any adverse affects. My fingers on one hand turn pure white when it hits and take hours to warm up, causing more damage, so the amlodipine saves more damage from occuring. Interesting observation is that the hand that turns white is on the same side that most of my MS symptoms are also on.

  • Matt Allen G author
    2 years ago

    Hi, was the amlodipine prescribed specifically for this or high blood pressure? Interesting that you get it unilaterally, I have symptoms EVERYWHERE and I get this on both sides, I have no idea if that is the norm or not?

  • saddison
    2 years ago

    I experienced ice cold feet which were purple in color, years ago, and then that symptom went away. My husband was shocked at the color change when the cold feeling stopped. Years later, the problem returned. Now my knees, down to my toes, become ice cold. I refer to it as being barefoot in the snowbank. This is an unnatural cold. The kind that is unrelated to the room temperature, and resistant to warming with socks or blankets. I find that it takes those items, plus the heat of a heating pad on high to make a difference. I seem to have a very narrow range of comfortable temperature. At 68 degrees, I am too cold. At 70 degrees, I am generally comfortable. At 71-72 degrees, I am sweating. I have asked my family, “Is anyone else both hot and cold?” From the knees up I can be too hot, while from the knees down, I feel that I am barefoot in the snowbank. It is nice to know I am not alone in experiencing such oddities. (Secondary Progressive MS and multiple other Autoimmune Diseases)

  • Matt Allen G author
    2 years ago

    I should have mentioned that but yes, I am the same way, I can be overheating at my core but my feet or hands are painfully cold! It’s so frustrating!

  • lromeo
    4 years ago

    I was born and raised in Colorado. I was dx with Reynauds in my early teens and MS in my early 20’s. My hands and feet turn purple and the pain is hard to describe. I don’t know if my feet are on fire or frozen. Only advice from Dr…wear gloves? Umm,thanks doc?

  • linda
    4 years ago

    I just saw this post & feel so validated. I have had ms for 20+ yrs but just recently noticed that no matter how warm I feel, my hands & feet are cold. I have not mementioned this to anyone because,as usual,I thought maybe I was imagining a new “invisible” symptom. Matt, after 20 yrs of dealing with ms,reading your posts has been the best medicine I could ask for ! Thanks

  • Matt Allen G author
    4 years ago

    Lol yeah, sleeping is weird. I am hot so I open the window and just have a sheet over be but I have to have a thick blanket over my feat! I really did not notice this till I was living in Colorado and it was always snowing. Then my HANDS would kill me even with several layers of gloves! Oh and I would still be in jeans and a T-Shirt and feel fine, just not my hands

  • Carole
    4 years ago

    I was diagnosed with MS in 2013. I’ve never had symptoms of Rayna us until this past winter. I told my neurologist about it but she says “it’s generally not thought of being a symptom of MS. But then why do so many MS sufferers say they have it!!

  • Matt Allen G author
    4 years ago

    Because many neurologists “are generally not thought of being an MS specialist” and not mentally qualified to make the decisions/assessments they do. That is why I always recommend a second and third opinion.

  • Carole
    4 years ago

    RAYNAUDS …I hate spell check. 🙂

  • Rob
    4 years ago

    Matt, Thank you so much for writing this article. Now I have the connection. I believe that I have had this for as long as I’ve had MS. Only recently did I talk to my GP about this and he came up with Raynaud’s but, sent me to another doctor that was more familiar with the Phenomena. That doctor basically wrote me off because I was not female and/or African-American!
    What I had read about Raynaud’s didn’t connect it to MS. Now after reading your article and Maria Dorfner’s as well, I will talk to my Neuro about this next month.
    Thanks to both of you!

  • Rob
    4 years ago

    Hi Matt,
    Just seen your reply. No, the doc didn’t dismiss my MS, he dismissed Raynaud’s for those reason, (apparently those are the most effected). I told him not to dismiss me because I have lot’s of “female” problems. I’ve had bunions, Thyroid, MS, and bursitis. All thought to be much more female in nature. He ran a bunch of blood test, (five vials worth). Came up with nothing. I came back to your article again to link to Maria’s to see the list of products. I tried a Incrediwear Wrist Brace with Germanium, I found on Amazon but, it didn’t help me. I’m ordering the FIR Therapy Half-Finger Gloves from firheels.com.

  • Matt Allen G author
    4 years ago

    I am not sure it’s connected as well, at least we don’t know as of yet but time has proven that we don’t actually know EVERYTHING there is to know about MS haha… Female or African American… MS typically affects people of Northern European decent but I have met African Americans with MS, Asians with MS, and people from all over SOUTH America. You know what has become painfully clear to me? Illness, ANY illness, does not discriminate against who it can affect so doctor should not discriminate who they can diagnose with what haha….

  • Maria Dorfner
    4 years ago

    Interesting article. I thought the following may be helpful to you and your readers. I will definitely research the MS connection further.

    I blogged about cold hands/feet here:
    http://mariadorfner.wordpress.com/tag/renauds-syndrome/

  • Alex Schilling
    4 years ago

    Both of your articles are superb and very informative. Secondary Reynaulds may be it for me. I will be discussing this with my neuro and hematologist.

  • Matt Allen G author
    4 years ago

    So…. they should take my article down, throw it away, and post you because I found it REALLY helpful. Now I have even more products to look at! Granted, I no longer live in Colorado so cold won’t be an issue except when I travel but still! Better to have it and not need it than need it an not have it right? GREAT ARTICLE and I DEFINITELY recommend everyone check it out!!!!!!!!!!!!!!!!!!! *#*#*#*#*#*#*#*#*

  • north-star
    4 years ago

    My feet and legs get very cold, even in warm weather. They ache and I can’t get to sleep until they warm up. I’ve been using a rice heating bag at night, it warms the foot of my bed. Sometimes I put the bag right on my feet and legs to speed the warm-up. I have a pair of slippers with rice inside, too.

    I put the bag/slippers in the microwave to heat, 2-3 minutes. You can use them again and again. No side effects. It doesn’t fix discomfort from being out in the cold but at least I can sleep. I’ll try the glove plus mittens combination Donna shared, it sounds like a great idea.

  • Matt Allen G author
    4 years ago

    I have used something like that, a pillow kind of thing. It was good in PREVENTING but not so good when your fingers are already falling off and you are trying to warm them back up haha. I wear really thick socks (meant for under boots in the snow) when I sleep and that does the trick for sleeping.

  • DonnaK
    4 years ago

    I was diagnosed with MS in 1995. I started noticing Raynaud’s type symptoms before that. I get numbing and tingling, my fingers turn white, purple, black, and bright red and throb. I recently read that MS and Raynaud’s were connected. My doctor won’t give me medication for it, she recommended using hand warmers and extra gloves. First of all, who has the time to shove hand warmers inside their gloves? Second, I recommend wearing gloves inside of mittens or just mittens. Just gloves, your fingers are separated and get cold easier.

  • Dondi31
    4 years ago

    I was dx with MS in 2000 but had symptoms from as early as 1990. I have been plagued with this for a very very long time. Nice to know it is related to MS.

  • Matt Allen G author
    4 years ago

    PLAGUE is a good word. I wanted nothing more than cold weather and now that I have had it I had to deal with this which sometimes has made me want to stay inside…

  • jude
    4 years ago

    I was diagnosed with MS in 1979 at age 24. I am currently taking no meds for MS, but am doing extremely well without. I called my Raynaud’s symptoms “casket hands syndrome” until I was dx’d 2 years ago. My hands in particular turn snow white and numb winter, spring, summer and fall. My GP precscibed amlodipine ( a blood pressure med) one at bed time. It has helped a lot but has not completely rid me of the Raynaud’s. Thanks Matt, for bringing this syndrome to light.

  • Matt Allen G author
    4 years ago

    Yeah I heard they prescribed stuff like that but a lot of people either said it didn’t help or the side effects were not worth it so I am glad they help you!

  • Chris G
    4 years ago

    Hello Matt, I’ve been living with MS since 1995. I first experienced “The Cold” sensation in my feet in 2012 and in my hands in 2013, Now I have the sensation in both areas. It happens even when I’m in the house, and the ambient temp. gets to 68 degrees.It’s like a switch, I’m fine above 68 degrees. To warm my feet, while sitting, I have to flex my feet in place (raising my heals off the floor and then back on the floor) in a fast pace till I feel warmth. I cross my arms and place my hands under my arm pits to keep them warm. I sit covered with a throw blanket, when everyone else is in short sleeve shirts. I have to use a electric heated blanket, when sleeping, because the toes and fingers are so cold I can’t fall to sleep. Winters in PA are cold, If I have to go outside of the house, I wear 2 pairs of socks, Glove liners, and thick pair of gloves, which are good for about 20 min. and then the “Cold Sensation” gets the best of me, and I have to get back in a heated area. I’ve been on the same medications since 2008 so a new medication did not start this symptom.

  • Matt Allen G author
    4 years ago

    Same here with glove. I layer as many on as I can fit and I am good for like 20 minutes and then PAIN! That is why I was contemplating the $150 heated gloves lol!

  • JenniferGlynn
    4 years ago

    Once again I’m not crazy!!! I had cold fingers off and on for a couple months this year. I described it just like you did. It felt as though I had soaked my hand in ice water. The cold sensation seemed to go all the way to the bone. Thank you for sharing. I was diagnosed in 1996. Sometimes I forget these weird things that happen are just another “wonderful” addition of this disease;)

  • Matt Allen G author
    4 years ago

    I don’t think it’s a DIRECT symptom of MS, rather an indirect symptom thanks to the whole crossover effect or crossover syndrome that makes us more likely to develop another autoimmune disease. The thing is, this is not neurological, it’s a PHYSICAL issue, but either way, IT SUCKS!

  • jaz
    4 years ago

    I was diagnosed with multiple sclerosis in 2004 at 19.I experience the same symptom.it started in my feet’s and now it has taken my whole right side. It is very painful.no matter how much layers you put on it feels like I’m wearing nothing. Thankfully for me I’m from Florida. When I’m in the heat nothing, once I’m in the ac its painful. I take lyrics 150mg it helps tiny bit but I wish it would go away. It a numbing, tingly, pricking pain.its like i had ice glued to my body.

  • Matt Allen G author
    4 years ago

    It’s not just your fingers and toes? It’s your whole right side? That would not be Raynauds, probably a bad case of Paresthesia, BUT, I would talk to your doctor about it of course!

  • Poll