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Posted By : nasalady - 12/11/2010 1:31 PM
I've been having problems with my Raynaud's flaring up lately, and I'm experiencing weird new symptoms. I mostly have trouble with my feet, not my fingers (yet), and my toes have been turning that icy blue color quite a bit. But I've had something that seems to be the OPPOSITE of Raynaud's happening too!

My feet will turn bright bright red, and my toes swell up like little red balloons. And my toes and the soles of my feet become extremely painful. It's hard to walk and almost impossible to wear shoes. If I have blankets on at night I have to kick them off because my feet feel so hot!

Apparently there is a condition called erythromelalgia that goes along with Raynaud's syndrome in some people, but it's the opposite of Raynaud's, you get a surge of blood to the feet and it causes the symptoms I described (red balloon toes, etc). I emailed my rheumy and he agreed that it sounds like erythromelalgia.

Does anyone else have this happen to them??

How do you deal with your feet being too cold and then too hot in the space of a few minutes?
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

http://forty-two-joann.blogspot.com/

Posted By : suetoo - 12/12/2010 8:56 AM
Hi!
Me, too, me, too! It was driving me crazy, so back to the neuro...... he did a slew of blood work, and lo and behold, my B12 level was critically low, and hi dose oral supplement helped those very symptoms IMMENSELY!!!! And when my heels get so inflammed, I have a Flector patch that I slap on and secure with an ace wrap that helps me alot, too.  Maybe you could ask your dr. what he thinks? My feet would swell up like sausages all the way up to mid calf. I took a picture with my cell phone because I didn't think my docs would believe it was as bad as I was whining it was tongue
take care,
hugs,
suetoo

Posted By : nasalady - 12/12/2010 11:08 AM
Thanks, suetoo! I just recently bought an oral B12 supplement so I will try that....I see my rheumy on Tuesday and will discuss it more with him.

Photographing your feet with your cell phone is a great idea too! I've emailed him pics of my malar rashes before. Photographic evidence is important because so often when I visit him, I DON'T have a malar rash or whatever right at that moment and then he just looks at me and says "I don't see it."

Glad to hear that your feet are feeling better with the B12!
((((((((((hugs)))))))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

http://forty-two-joann.blogspot.com/

Posted By : 123abc - 2/2/2011 11:36 PM
So JoAnn - has the B12 helped you? I have had this problem to the extremes - freezing or boiling hot feet forever! Doctors haven't been helpful - I would love to hear more on alternative treatments.

Posted By : Brookey - 2/3/2011 1:34 AM
Oftentimes if I'm outside in the cold and then come into a warm room, this happens to me. It usually covers a larger part of my body. Then it causes me to break out in a terrible case of hives.
 
What you are describing, though, sounds a lot like hyperamia. That's just the term for blood coming to the surface of the skin, I think. 
 
I've been having a bad case of numb toes all day. First I thought they were just cold. Then I discovered that they're numb and that's what is causing my pain.

Posted By : Hickoryone - 2/4/2011 9:12 AM
Raynauds' is a fun, fun thing when you live in the Midwest as I do!

I have to purchase hand and foot warmers to be able to go outdoors for any length of time (longer than 5 minutes).

This is something to really watch if you live in a cold climate as frost-bite can develop rather quickly in one with Raynauds. I've actually gone too long without warming my hands and the pain of the vessels constricting is unbelievable! I actually became nauseated from the pain.

Always be mindful of the potential with Raynauds.

Posted By : nasalady - 2/5/2011 12:41 PM
123abc said...
So JoAnn - has the B12 helped you? I have had this problem to the extremes - freezing or boiling hot feet forever! Doctors haven't been helpful - I would love to hear more on alternative treatments.


Hi 123abc,

Sorry to say that the B12 has NOT been helpful, nor has anything else really. The condition just seems to get better and worse on its own, just like Raynaud's does. Well, that's not really accurate either....the erythromelalgia for me is triggered by certain things. I mean, I do have some degree of erythromelalgia all the time now, but I can make it worse by (a) exposing my feet to heat and/or pressure, like a hot shower or putting heavy warm blankets over my feet, or (b) drinking alcohol, like having a glass of wine with dinner, which I probably shouldn't be doing in any case.

Most doctors have not heard of erythromelalgia...it's a neurovascular condition and is somewhat rare. It seems to accompany Raynaud's syndrome, lupus, or Lyme disease in some individuals. You can Google it for more info.

Good luck!
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

http://forty-two-joann.blogspot.com/

Posted By : Hickoryone - 2/5/2011 3:55 PM
JoAnn,

B vitamins never worked for me either....and to think all those energy drinks that contain it have people thinking they will be bounding tall buildings! Not so...

I will look up that word of what you have to see if by chance I have that as well since my Raynauds acts up in the shower in hot water too.

Raynauds is the most irritating thing if you live in a cold climate! One should not have to travel with hand and foot warmers in their vehicle!!

Ah, Poopus! (lupus)

Posted By : mechiko - 2/5/2011 9:15 PM
I have Raynaud's, and I live in Alaska, so basically am always cold! Haha. I don't have what you describe to the degree you have it, but I do know that when my hands and feet warm up from being outside they turn red and painful, and when I get in the shower I have to start out cooler than I'd like and ramp up the heat because otherwise my toes and feet turn red, swell, and hurt. I've never heard of the condition before, interesting.

Kathryn

Posted By : Veeds - 11/12/2013 4:00 PM
yeah I have had the problem with "hot feet" my entire life. I have been to every specialist on the planet and no one can give me a concise explanation. I was tested and told I did not have erythromelalgia, but I have all the symptoms. I don't have a problem with cold feet unless the temps are well below freezing and I am outside, but the hot feet and swollen, red toes can happen easily, more often in summer. Exercise, body temperature increase both cause it. I am not a big drinker, but alcohol will also trigger for me as well. I am mostly vegetarian (I eat some fish) and have never heard the B12 connection. I will try supplementation and see if it helps. Thanks for the tip and best of luck to all of you.

Posted By : poetic - 3/27/2017 8:47 PM
I have the same problem---toes black and purple when cold, swollen bright red and hot to touch in warm weather. My toes hurt to touch, also, as if they are always sore. I have been diagnosed with Raynaud's. When I told my doctor that heat bothers me as much as cold he said that has nothing to do with Raynaud's and ignored me. Sigh.... it is not only painful, it is embarrassing!!! To make things worse, I now have Morton's Neuroma really bad in one foot and starting in the other. (a cluster on the nerve that controls the 4th-5th toes) and the doctor doesn't want to operate on it because of my Raynaud's. I feel like I can't even walk at times.

I don't know if this is related, but I have pain in my legs when walking up stairs. I have to stop and rest every few steps. It doesn't happen when I go down stairs. Anyone have this additional problem?

Thank you!

Posted By : kelsey.dossa - 3/29/2017 6:14 PM
This is very interesting, I have had similar issues and just took it off to be part of the weird quirks of lupus. It can be so incredibly painful.

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