Tuesday, January 24, 2012

Raynaud’s Syndrome and POTS

Winter is in full swing, and for those of us with Raynaud’s disease, that means frozen hands and feet. It seems that there are quite a few of us out there that have coexisting POTS and Raynaud’s syndrome. A few articles have found a link between autonomic dysfunction and Raynaud’s disease, but I haven’t been able to find much out there about how commonly they are seen together. I know many people who have both, however, so I thought I’d post about it. And, of course, none of this is a substitute for medical advice so be sure to contact a doctor if you are having any problems.

For those of you lucky enough not to know what it is, Raynaud’s is a phenomenon in which the small blood vessels of the hands, feet, and or tip of the nose “overreact” to cold temperatures and cause excessive narrowing and therefore restriction of the blood flow. This can then cause the extremity to become 1) white due to lack of blood flow, then 2) blue due to cyanosis (lack of oxygen in the blood in that area), then 3) red when the blood flow returns. It is an uncomfortable problem that causes numbness to the area, and pain and tingling when rewarmed (kind of like when your toes get too cold in the snow and it hurts to rewarm them). Raynaud’s can be primary (due to unknown causes) or secondary to other diseases (such as lupus, RA, scleroderma, carpal tunnel syndrome and others) and may be autoimmune in nature.

Much of the time, Raynaud’s is an annoyance without too much of a long term problem; however, if you are unlucky enough to have Raynaud’s and POTS together, you also have the problem of (usually) being put on beta blockers, which almost always make the problem of constriction of those blood vessels much, much worse. I had mild Raynaud’s prior to POTS, but after taking beta blockers to help with POTS, my Raynaud’s has become quite severe, especially in my toes. I was off of the beta blockers for a while, and it seems that my Raynaud’s is still pretty bad without them now, but much worse on them. Because my toes are so sensitive to any temperature change, I have to wear wool socks all year round, yes including summer (!) because otherwise the blood flow to my toes completely stops and is slow to return so I run the risk of developing ulcers without warming and massaging the blood back into the area. Here’s an example of my toes in the middle of the summer at the beach (ie it’s like 90 degrees out):
Looks pretty, doesn’t it? Usually it’s much more severe, but at least I can give you an example of what it looks like (this is the best picture I’ve been able to get of it).

What helps?
  • Keeping warm: Unfortunately, many of us need to wear gloves and wool socks to keep warm enough to keep from triggering an “attack”. As I mentioned above, I wear wool socks 365 days a year to prevent the very unpleasant attacks. It can also be helpful during the winter to keep toe warming packets on hand in case of severe attacks (I keep them in my purse). I also purchased a paraffin bath a few years ago, and that can be nice because it is warm and sort of “cocoons” your hand or foot to keep it warm (I’ve never used it during an acute attack though, just with mildly cold hands or feet, and the container is kind of big, and you have to keep it heated for the wax to stay liquid). I also always wear socks to bed, and have even worn thin gloves to bed when I’m really having flare ups.
  • Reduce stress: stress has been linked to an increased frequency of attacks
  • Avoid smoking- it’s been linked to an increase in constriction of vessels, therefore an increase in attacks
  • Reduce caffeine (I have to admit, I haven’t been able to try this one because I love my morning coffee!) as it has also been linked to increased vasoconstriction
  • Some drugs can worsen Raynaud’s, such as beta blockers, some migraine meds, some chemotherapeutic drugs, some over-the-counter cold medications and narcotics…drugs that cause vasoconstriction.
  • There are also some medications that may help with severe Raynaud’s, but are usually not required (see your doctor if you think you might need this kind of prescription)
What if I’m in the middle of an attack?
  • I find that warming the area is the most important first step. Try to place the hand or foot in a warm area (under your arm, knee, sit on them, whatever it takes!) I usually will try to massage the area to get the blood flowing again, which will eventually help it warm and improve. If it’s really severe, you might want to submerge the area in warm (not hot) water to rewarm the area. If the water is too hot, it will really hurt (think freezing cold hands in the snow then straight to hot water…not pleasant). If you can’t get the area to refill with blood after warming, it’s best to go to a doctor to make sure that you don’t run the risk of developing necrosis in the area, although that is rare.
Do any of you have any other tips that you have found helpful for Raynaud's?  I'd love to hear your stories.


    Claire Martin - Owner said...

    I have Raynauds and POTS and well (which is why I'm being tested for possible autoimmune causes for my POTS), and the Beta Blockers increased my Raynauds 10 fold! I would touch a cold soda can and my fingers would turn white immediately, it was very painful.
    I used those little hand warmers in my gloves and socks, which worked well at keeping warm. Also wearing mittens instead of gloves - the heat from my other fingers helped as well.
    Thanks for the great post!

    Lauren Butare-Smith, DVM said...

    I absolutely know how you feel about touching cold things. When I have ice cream or anything cold, I have to bundle up in a blanket for hours, especially fingers and toes! I'll have to try mittens some time too because I've only used gloves so far. Thanks for the idea!

    Mom said...

    Thank you for this blog. My daughter has been diagnosed with POTS just a few months ago and today she called me from school saying her hands were blue. Does anyone know if this will go away if her POTS goes away?

    Lauren Butare-Smith, DVM said...

    I'm not sure that it will go away if her pots improves, but it should be less severe, especially if she is on beta blockers. If she is on a beta blocker, that can definitely increase the severity of raynauds, so if her pots improves enough to get off of them, that may help. Until then, she may want to keep mittens or gloves and hand warmers with her in case it happens again.

    Mom said...

    Thanks. We are fortunate not to be using any medication to control the POTS so now I am really glad we tried non-pharmaceutical routes first.

    Jessica Schumaker said...

    Hello, I was in the third grade with I developed Raynaud's also already having POTS something. And easy but in most cases helpful for reducing issues with POTS is increases the salt intake in her diet also staying rested. I live in Wisconsin so staying warm can be a problem at times. The easiest thing I found when raynaud's hit's is running that body part under warm water. In most cases POTS does go away, it did for me. Raynaud's doesn't go away, however in my cases it has not worsed. There is two types of raynaud's primary and secondary. It's important to talk to you doctor about it. I hope everyone the best of luck.

    Anonymous said...

    Parasites babesia

    Anonymous said...

    I just ran across this site. I have raynauds and have found a supplement that helps me be a normal human being. I hardly ever have attacks, and if I do, my body is able to overcome it and restore circulation in minutes not an hour. The supplement only came out in the few months, and it is doing miracles because it has signaling molecules in it that activate our dormant stem cells and cause them to go against the attack. I dont know if I can leave any contact information here or not but its important enough that I will try it. charlene.jones77@yahoo.com Good luck and God bless anyone that might read this. It is a horrible thing to have to live with.

    Rick Beardsell said...

    Hey guys, the company i work for Zondo (find us on twitter @ZondoHQ) are producing a Self heating glove and insole that regulates circulation and maintains the bodies natural heat in the hands and feet. Our KICKSTARTER is launching this weekend, and shows a testimonial from a Raynauds conference we attended last month. We would really appreciate if you guys would give it a look as it may really benefit you in cold conditions.


    Tom AIles

    Anonymous said...

    I have Raynauds disease and Healthyhelp4U made this cream that has helped tremendously with the pain that follows the disease. It is used to improve the circulation in hands and feet. This cream is completely natural with no harmful chemicals. I have attached the link below to their website specifically the circulate now cream.

    RB said...

    My friend had it for years without her lazy doctor diagnosing it. It use to bring her to tears even when it wasn't that cold outside. I am athletic and much older than her. And I also taken herbs and supplements for over 25 years. After preaching to her for months about how the medical profession when it comes to obstruction of the arteries, put to much emphasis on saturated fat turning to plaque. This as opposed to carbohydrates that turn to sugar and harden your arteries which causes diabetes. And also calcium which is hardly talked about at all.Just like iron needs vitamin c to absorb into your blood, calcium regardless of how much you take doesn't absorb in your bones without magnesium and vitamin d3. So as I was looking for the most effective way to dissolve my calcium build up, I realize it could help her as well. I found that magnesium chloride out of all the other forms magnesium can be most effective not just to help calcium asorb from your blood into your bones, but seek out calcium wherever it is in your body and absorb it. My friend started to take magnesium chloride and vitamin d3 daily. Here's the funny part because she's usually always cold. She started to get what appeared to be hot flashes. She even called her mom and asked at what age did she get it. This lasted for about 2 weeks or more. Then all of a sudden it stopped! We came to the conclusion that the supplements were clearing her arteries and vessels to allow more blood flow, and that's the reason she became warmer. This is the first year out of the 7 that I've known her that she didn't complain about being cold or in pain. Flaxseed capsules and liquid also helps to keep blood vessels lucid.

    marta said...

    I had Raynaud's since my teens. I'm 51 now. I never gave it too much attention because it always clears up when the temperature is right, but when I was 43 I got diagnosed with a potentially deadly autoimmune disease, Wegener's Granulomatosis. It was a do or die kind of decision with the drugs, and the risk was high because the drugs are nasty, but as it turns out they saved my life. I was on chemotherapy for a whole year, as well as steroids (to increase the inflammation) and all the other stuff to counteract the negative side effects of the nasty stuff. I had no idea that autoimmune disease is treated with chemo. Now I know more than most of the doctors in my town. Ha ha. I even got published in a medical journal - and I wasn't a guinea pig, I actually did some of the research without having gone to med school. But that's a different story.

    The point I wanted to make is that Raynaud's is part of the autoimmune family which affects 1 in 5 people, 3 of 4 of those are female, and has no cure, but being women, we know how to handle it. The treatment took care of my Wegener's (it goes in remission and has come back thrice since, including a flare now, but it always gets taken care of - I hate the meds, but I love life and my daughter and husband way way more... sooooo...

    The Raynaud's is gone. I haven't had it since that first hard core treatment in 2010. The treatment for the autoimmune disease I was fighting with for my life, actually got rid of my lifelong affair with Raynaud's and also another couple of minor autoimmune issues I had. It's quite amazing really because Raynaud's wasn't my on my radar when Wegener's hit, but I haven't seen it since. I only wanted to post this as you mentioned that chemotherapeutic can be detrimental, and I wanted to share my experience where the chemo and steroids combined actually got rid of it. For the last eight years anyways. Who knows what tomorrow holds, but as of right now, I haven't had it for eight years.

    Just food for thought.
    Thanks for this.

    I only stumbled onto here because a friend's daughter is dealing with POTS, and I thought that because the symptoms seem to be under a similar umbrella, they might be etiologically as well.




    To make you smile...


    Sweet boy

    Chloe Bear

    Chloe Bear
    Chloe as a baby!