Raynauds And Pots

[lavender]

I've noticed that quite a number of you on this forum have raynauds along with POTS. Is there a connection between the two? If so do you know of anyway articles on the web that talk about raynauds in POTS?

I'm gathering info on POTS to take to my doctor to possibly explain my mystery illness. I have a lot of the symptoms of POTS along with pretty bad raynauds and chilblains. I'd like to find any info I can on that.

Thanks!!!

[ramakentesh]

There is a massive connection in that raynauds can be a symptom of some forms of POTS.

Raynauds is basically a vasospasm that constricts blood flow to the extremities.

In some forms of POTS there is either constant excessive hand and foot vasoconstriction (permanent raynauds) or excessive hand and foot (peripheral) vasoconstriction on standing or sitting as the body tries to reregulate the blood pooling in the abdominal area.

The body basically counters the blood pooling in the stomach in this form of POTS by shooting off excessive amounts of epinephrine and norepinephrine to boost blood pressure to the heart and brain. This causes a raynauds type symptom of cold feet and hands and vasoconstriction.

[ramakentesh]

Refer your doctor to the work by Dr Julian Stewart on Normal Flow POTS.

[lavender]

thanks so much. this helps me a lot.

[juliegee]

I just wanted to add a huge "ME TOO!" I have rarely met others here who have it so bad that they get chillblains. They hurt like the dickens and I still get them periodically- worse when I was younger in my 30's. I'm 46 now. Occasionally, I get all blood flow to a digit (or recently my entire foot) totally cut off- so scary. I was once hospitalized for 3 days because my middle finger turned blackish purple and wouldn't pink up. Frustrating!

Julie

[lavender]

Julie,

So do you think your chilblains were related to your POTS? I noticed you also have an unknown connective tissue disease. I know that chilblains can happen in some connective tissue diseases. What have you found to help your hands and feet?

I have really bad raynauds with chronic pernio. They CALL it raynauds anyway, but it doesn't really behave like normal raynauds, i don't think. My toes are always purple. It doesn't really come and go with the cold. I have a really hard time not getting chilblains on my toes and fingers, and sometimes along the bottom of my feet too. On my feet the chilblains sometimes turn into nasty open sores.

Because of this, and lots of other symptoms, doctors keep looking for a connective tissue disease, but in almost 20 years nothing have been conclusive.

I've been talking to Thankful on this forum about her chilblains and POTS. It been helpful to find some people with similar issues.

[ramakentesh]

Arent chillblains just caused by reduced blood flow/frost bite?? Im confused about how that relates to connective tissue disorders?

POTS and raynauds are connected - connective tissue disorder or otherwise.

[bizbiz]

I have always thought that chillblains was caused by exposure to cold, whereas Raynaud's was more a circulation (or lack of) problem?

I suffered from chillblains in my teens (my feet are always cold), but I remember my doctor telling me I had bad circulation...?

[juliegee]

Julie,

So do you think your chilblains were related to your POTS? I noticed you also have an unknown connective tissue disease. I know that chilblains can happen in some connective tissue diseases. What have you found to help your hands and feet?

I have really bad raynauds with chronic pernio. They CALL it raynauds anyway, but it doesn't really behave like normal raynauds, i don't think. My toes are always purple. It doesn't really come and go with the cold. I have a really hard time not getting chilblains on my toes and fingers, and sometimes along the bottom of my feet too. On my feet the chilblains sometimes turn into nasty open sores.

Because of this, and lots of other symptoms, doctors keep looking for a connective tissue disease, but in almost 20 years nothing have been conclusive.

I've been talking to Thankful on this forum about her chilblains and POTS. It been helpful to find some people with similar issues.

Sorry you are dealing with this- scary & painful. Yes, the chillblains are definately related to the POTS. It happens to me when I'm really busy, kind of an overwhelmed feeling. My blood flow goes to vitals organs to keep me working at peak efficiency and poof- my extremities are totally deprived of blood. It's weird that I can connect it to a feeling.

Mine definately comes and goes. Yours does sound like something different because it doesn't come and go. Your chillblains sound awful- my heart goes out to you!

My geneticist isn't that well versed in connective tissue disorders. He says I have one, but he hasn't specified a name. He's ruled out a few (serious vascular disorders) with blood tests.

What is pernio?

Hugs-

Julie

[juliegee]

Arent chillblains just caused by reduced blood flow/frost bite?? Im confused about how that relates to connective tissue disorders?

POTS and raynauds are connected - connective tissue disorder or otherwise.

Chillblains occur when blood flow is reduced or absent. Cold can exacerbate this. Not sure how it relates to connective tissue disorders, but it is a very common symptom with CTD.

[Broken_Shell]

Hi All,

Me too... all the doctors I see look at my hands and feet and ask me if I have seem a rheumatogolist and if I have Raynauds. I have had several extensive rheumatological work-ups, and have been told that I do not have Raynauds per say because the vasoconstriction is not only triggered by cold temperatures. I believe that it is just inappropriate blood vessel constriction and dilation due to dysautonomia. It does look scary sometimes though and attracts a lot of attention! I also usually have the purple, splotchy livedo reticularis-like vascular pattern on my abdomen and legs, especially my knees are usually purple.

~ Broken_Shell

[janiedelite]

Arent chillblains just caused by reduced blood flow/frost bite?? Im confused about how that relates to connective tissue disorders?

POTS and raynauds are connected - connective tissue disorder or otherwise.

I had a biopsy of the chronic sores on my feet which came back as pernio. As my POTS worsened, I got more sores on my feet and I hardly went outside at all. The biopsy read "deep and superficial perivascular lymphohistiocytic infiltrate" which, to me, means I had a bunch of immune/lymph cells causing inflammation around the blood vessels throughout my skin. I also had a "possible connective tissue disorder" diagnosis because the hyperactive immune response could be caused by an autoimmune connective tissue disorder like lupus. They also thought I might be having an immune response to a drug reaction (I wasn't taking anything), and my dermatologist accused me of putting my feet in ice water

Mayo diagnosed me with small fiber neuropathy/post-viral POTS which research has talked about being an autoimmune process. My ANA and sed rate are always normal, but I have a chronic sore throat and my lymph nodes swell sometimes. I think the biopsy just confirms that my immune system is messed up. I easily get sick and will get symptoms twice as badly as whoever gave me the bug.

My chilblains are kept at bay by staying warm (but not TOO warm ) and reducing orthostatic stress as I produce excessive norepinephrine on standing which further vasoconstricts and exacerbates my pernio problems. When I'm stressed, cold, or active, my feet often turn bluish and I can't feel pulses in my feet and my capillary refill time is delayed (when you blanch your skin it should turn pink again within 3 seconds). As soon as I stand still or reduce the stress, I have an exaggerated hyperemic response and my feet and hands get red and hot and burn. I've been diagnosed with raynauds and pernio, erythromelalgia, etc. As far as I'm concerned, it's all just POTS.

[lavender]

Pernio is the same thing as chilblains. Sorry to be confusing!

I'm amazed that both of you, Julie and Thankful, notice that being busy, or stressed or on your feet too much can bring on chilblains. That is very much the case for me. The cold is super hard on my feet, but doctors have a hard time hearing me when I tell them that too much activity, or getting stressed makes my chilblains worse. I could never figure out why the day after a big doctors appointment my hands and feet looked so awful and hurt so bad....it was always so frustrating! I eventually figured out that stress is really hard on them. I can relate to what you said Julie about a certain overwhelmed feeling always brings on trouble for your feet. I recognize that feeling too and can tell I'm in trouble cuz my feet get freezing cold and start to tingle and burn more than usual.

[juliegee]

Pernio is the same thing as chilblains. Sorry to be confusing!

I'm amazed that both of you, Julie and Thankful, notice that being busy, or stressed or on your feet too much can bring on chilblains. That is very much the case for me. The cold is super hard on my feet, but doctors have a hard time hearing me when I tell them that too much activity, or getting stressed makes my chilblains worse. I could never figure out why the day after a big doctors appointment my hands and feet looked so awful and hurt so bad....it was always so frustrating! I eventually figured out that stress is really hard on them. I can relate to what you said Julie about a certain overwhelmed feeling always brings on trouble for your feet. I recognize that feeling too and can tell I'm in trouble cuz my feet get freezing cold and start to tingle and burn more than usual.

And I can so relate to your comment about a doctor's visit making things worse. One of my worst epsiodes- I ended up hospitalized- occurred when I was taking my son to a specialist for his symptoms. At the last second (despite the fact that I had asked to fill out paper work ahead of time) , they handed me 500 forms to fill out needing exact information re. dates and details of every time my son was hospitalized, every test, every procedure, every surgery, etc. I felt so overwhelmed. I needed a good week to do the forms justice, but I worked frantically to fill it all in in 15 mins. When we were called back, the doc took one look at my hand (one black finger) and sent me straight to the hospital where I was kept for 3 days. Grrrr. At the end of every test imaginable, they concluded that I (and several docs, including the original specialist & the admitting ER physician) imagined my black finger- which had since pinked up That was helpful-NOT! LOL- sort of..... Glad to know I'm not alone.

Julie

[summer]

I have raynaud's as well. I have always had very cold hands and feet, but this past winter I began having episodes where my fingers or toes would turn completely white and numb. I looked up chillblains and wonder if I get these too. I get small red bumps, mostly on my knuckles which are very itchy. They can get quite red and inflammed, but have never become open sores. I would describe them as more itchy than painful. Could this be chillblains? I've always wondered what they are.

[janiedelite]

I looked up chillblains and wonder if I get these too. I get small red bumps, mostly on my knuckles which are very itchy. They can get quite red and inflammed, but have never become open sores. I would describe them as more itchy than painful. Could this be chillblains? I've always wondered what they are.

Yes! I get the bumps you described. It was one of those bumps that was biopsied as pernio, which I think is the same as chilblains. Mine never become open sores, either, but I can get so many on my feet that my toes are too swollen to wear shoes. The tips of my toes are often purple at this time also. And the itching is unbearable! Benadryl helps ease it up and I can sleep through it because the worst itching is at night for me.

[fire_lupine06]

I have the cold blue hands anytime i stand still for too long ...like standing in a line at the store.

[juliegee]

I have raynaud's as well. I have always had very cold hands and feet, but this past winter I began having episodes where my fingers or toes would turn completely white and numb. I looked up chillblains and wonder if I get these too. I get small red bumps, mostly on my knuckles which are very itchy. They can get quite red and inflammed, but have never become open sores. I would describe them as more itchy than painful. Could this be chillblains? I've always wondered what they are.

My chillblains are a little different. I guess your physical description is somewhat similiar, but the feeling is really different. They've never itched, but they do hurt like the dickens. Physically, they are just little tiny (almost imperceptible) bumps on my toes, maybe a little red, sometimes opaque. I'm aware of them, not by their appearance, but from the tremendous amount of pain they elicit. It's also noteable that they take forever to heal.

[lavender]

Mine are usually about the size of tip of my pinky. they get as big as a quarter or larger. they're usually swollen and very red. Sometimes they feel hot, while the skin around them are purple and cold. Like other people, they itch and burn like crazy. A few years ago I started getting nerve damage, so now my worst toes are pretty numb. So now the pain isn't as bad, but the numbness worries me. On my fingers, a lot of times, the chilblains are on my knuckles, I'm not sure why. At times it inflames my whole knuckle. the joint gets sore and really swollen and stiff. My chilblains don't usually turn into open sores, but at times they do. these are usually on the ends of two of my toes that have the worst damage. i think it's just from too many years of getting chilblains and not knowing how to really get them under control. I'm learning, over the years little things I can do to keep them from getting really bad, but I do worry about what shape my fingers and toes will be in by the time I'm older. I'm still in my twentys.

[janiedelite]

Wow, that's so wierd because my knuckles are always the first to get the chilblains (even the joints/knuckles on my toes). And yes, the joint gets red and swollen. My chilblains start like little hives but when they're really flared they grow to dime size. Like Broken Shell, I have livedo reticularis mostly in my extremities which worsens if they're lowered, but also in my abdomen if I'm flushing. I used to post frequently in a Yahoo erythromelalgia (EM) support group and many of those patients also have Raynauds. I really think many of these rare conditions overlap (POTS, erythromelalgia, raynauds, etc.). Erythromelalgia causes red, painful extremities, usually the feet but can involve hands and face too. EM is usually caused by small fiber neuropathy, but can be autoimmune or genetic.

If I get a bit warm or stressed or do too much, my feet and hands get red and hot and my burning increases (which is why I was diagnosed with EM). But if I get stress or do too much and I'm a little cold, then the pernio hits in my feet and hands.

[Jess23]

On 5/28/2009 at 10:13 AM, janiedelite said:

Wow, that's so wierd because my knuckles are always the first to get the chilblains (even the joints/knuckles on my toes). And yes, the joint gets red and swollen. My chilblains start like little hives but when they're really flared they grow to dime size. Like Broken Shell, I have livedo reticularis mostly in my extremities which worsens if they're lowered, but also in my abdomen if I'm flushing. I used to post frequently in a Yahoo erythromelalgia (EM) support group and many of those patients also have Raynauds. I really think many of these rare conditions overlap (POTS, erythromelalgia, raynauds, etc.). Erythromelalgia causes red, painful extremities, usually the feet but can involve hands and face too. EM is usually caused by small fiber neuropathy, but can be autoimmune or genetic.

If I get a bit warm or stressed or do too much, my feet and hands get red and hot and my burning increases (which is why I was diagnosed with EM). But if I get stress or do too much and I'm a little cold, then the pernio hits in my feet and hands.

Wow, thank you so much Janiedelite for mentioning Erythromelalgia!

I have spent probably 15 years wondering what is wrong with my feet (plus many google searches), with no luck. 

I finally have an answer as to my feet that go bright red, swell, and experience an unbearable burning sensation that spreads almost up to mid-calf. A few different things trigger it and it is more common in the hot summer months here in Australia. Since reading your comment I have read more and looked at many pictures and Erythromelalgia is definitely what I am experiencing.

Thank you for giving me the missing piece to a puzzle that has stumped me for years!

(I had chilblains as a child, and reynauds of the nipple while breastfeeding, and my doctor recently floated POTS as a possibility, which is how I found this thread).

[DADofPotsSon]

Both my youngest sister and I have Raynauds and neither of us will buy a vehicle that does not have a heated steering wheel.   I use mine all the time!

[MaineDoug]

A very current topic for me here in Maine! Winter has arrived and it’s cold. Zero last night, and not 0 C, we’re talking 0 F! Windy, snowy, icy cold! 
I’m a typical POTSIE, sure don’t like the heat! It makes me miserable. It helps that it rarely gets above 70 F or 21 C herel
BUT when it’s subzero it hurts even more than the heat! And it’s only just beginning! Soon enough it’ll be -20 F, so -29 C!

May you find the perfect temperature for YOU!