Hi! I have raynauds and also get hot feet. Sometimes one foot will be super super hot and the other will be freezing cold. Is this “normal” for those of us with crazy circulation or is it something I should be more worried about? Does this happen to others?
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Also I tried to attach a picture. Let me know if it works. I am on my phone so everything is a little wonky.
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Hi Aftertheteacups,
Have you ever damaged the red leg? I was always symmetrical in my flaring but since surgery on an above the knee fracture that whole leg is in 24 hour flare while the other one freezes next to it. Just a thought. Could be just the way the cookie crumbled as we are all different and yet the same:)
Nel
I don't have the extremes that you do, aftertheteacups, but my flares always affect my left foot much more than my right. And often the left foot will be red while the right is pale and bluish--just like your picture--and cold. Same thing to some degree with my hands. My GP noticed that weird pattern in my hands before I was diagnosed. And Nel, my EM started in my left foot and leg after I'd fractured the tibial plateau on that side, but I'm very fortunate that I'm NOT on 24-hour flare 9at least not yet). I guess it's all part of our crazy neuromuscular issues--normal for us....
I don’t know why it happens, but I often have a lag between sides at the start of a flare. My right hand often starts first while my left hand remains cool, and then I notice my left cuticles pinking up, then my fingers, then bam! It’s really strange when just my big toes flare.
Hi everyone! Thanks for the replys. I have not experienced any injury to my feet, so I don’t think that is a culprit. And it is not always the left foot that is hot sometimes it is the right. Usually the heat occurs symmetrically but not always. Very odd! In my hands it is always symmetrical.
I have had raynauds and therefore wacky circulation since I was nine. I can’t really remember what it is like to have normal circulation so I am always bugging my boyfriend asking questions like, “do you have episodes sometimes where one foot is bright red and hot and the other is cold?” It’s funny when you can’t remember what “normal” for other people is and then have to learn what normal for you means.
I am a strange one. I can have my flaring be symmetrical or one side extreme burning and the other numb. I will try to attach a pic where my foot is flaring but I have and Island on my bid toe that is numb and this went on like this for a good half hour till I got my feet up and back home. My face is doing it now. Just my left side is flaring . Although I usually flare all over my face. My knees and my eyes are about the only body parts that always flare symmetrically although they all flare symmetrically at times too . This was me at the grocery store a few days ago. I was there a bout 10 minutes and really just my toes started up but check out my big toes. It has a large chunk of numbness surrounded by burning! weird!
Fairly often, only the fourth toe on my left foot is really red and burning (and extremely tender)--the others are light red. I don't think I have the islands of numbness surrounded by burning, though. Our nervous systems are such a mystery! (I forgot--do you have peripheral neuropathy too?) By the way, I love the green toenail polish in contrast with the red toes. You have a great sense of humor!
Hi Lynn. I have been Tested for peripheral neuropathy but the tests came back inconclusive. I had patchy areas where I didn't sweat but my tilt table test was normal. I have had a couple of nerve conduction studies done and they came back different! One said I had carpel tunnel in both of my arms the other one said I had no problems in my arms and possible small fiber in my feet but nothing that was enough to lead her to a diagnosis of any sort. I know I have intermittent neuropathic symptoms but my neurologist says it isn't possible. I know it. I live in my body ....I know. That would also explain the nerve conduction studies that came back so different. She just said the one done before her must have been wrong. Funny thing is when I had that first one I was actively having regular numbness in both of my arms at the time of the test. This comes and goes. When she did her test and it didn't show up I also wasn't having the numbness at the time. It only confirms intermittent neuropathy or neuropathy like complications. Although she doesn't agree and I no longer see her. Any one that tells me that what I am going through can't be happening isn't going to be of any help.
I know what you mean by extremely tender. It really does hurt with the lightest of touch when your skin is burning significantly. DO you have a diagnosis of peripheral neuropathy LynnV? If so how was yours diagnosed? Did you have periods of weird spiking blood pressure followed by your normal good blood pressure with dizziness? Strange tastes/smells/sensations?
The green nail polish and red feet makes me feel like some sort of super hero!!!!! I am thinking some sort of female incredible hulk where I change color and grow or in my case swell!!!
Take care,
Alina
Thanks for inviting me to tell my medical story, Alina! My peripheral neuropathy was diagnosed about a year before my EM--but I think they started at the same time. The first symptoms were pain when sitting and serious swelling/redness of one foot and lower leg--same leg that I'd fractured about three months earlier. (The other foot got into the act later but was never as bad.) I've had three EMG/NCV tests during the past year. The first one was by a physiatrist (? physical medicine doctor). She could hardly get a signal because of the swelling but found serious neuropathy in the left leg, nothing in the arm. Three months later, a neurologist tested both legs and arms and said there was axonal neuropathy, mainly sensory, in both legs and arms. Then three months after that, the head of neurology at our regional hospital did his own tests and said it was sensorimotor, mainly motor. So I too have had three different diagnoses based on EMG/NCV studies! And none of them have talked about small fiber, though I'm pretty sure I have that too, and I know it's not usually diagnosed by EMG/NCV.
Also, none of the neurologists seemed interested in the redness, mixed with some white and blue areas, of my feet and palms. The neurological specialist thought I had Raynaud's but couldn't explain the red, burning areas. (He also couldn't explain why I have somewhat painful tingling in my face and under my butt/top of thighs.) Finally last month a rheumatologist confirmed my hunch that I have EM along tin Raynaud's.
The senior neurologist explained that the tests often differ, and interpreting them is some what subjective. All of this makes me really eager for a firm diagnosis--but I don't think I'll ever get that, and I'm not sure how much it matters!
I've found much support on this board, and many helpful suggestions--most recently about a plane trip Wednesday to see my nephews and nieces for the first time in 18 months. I'll definitely carry a ziplock bag and ask the flight attendants for ice!
Cheers,
Lynn
Alina Delp said:
Hi Lynn. I have been Tested for peripheral neuropathy but the tests came back inconclusive. I had patchy areas where I didn't sweat but my tilt table test was normal. I have had a couple of nerve conduction studies done and they came back different! One said I had carpel tunnel in both of my arms the other one said I had no problems in my arms and possible small fiber in my feet but nothing that was enough to lead her to a diagnosis of any sort. I know I have intermittent neuropathic symptoms but my neurologist says it isn't possible. I know it. I live in my body ....I know. That would also explain the nerve conduction studies that came back so different. She just said the one done before her must have been wrong. Funny thing is when I had that first one I was actively having regular numbness in both of my arms at the time of the test. This comes and goes. When she did her test and it didn't show up I also wasn't having the numbness at the time. It only confirms intermittent neuropathy or neuropathy like complications. Although she doesn't agree and I no longer see her. Any one that tells me that what I am going through can't be happening isn't going to be of any help.
I know what you mean by extremely tender. It really does hurt with the lightest of touch when your skin is burning significantly. DO you have a diagnosis of peripheral neuropathy LynnV? If so how was yours diagnosed? Did you have periods of weird spiking blood pressure followed by your normal good blood pressure with dizziness? Strange tastes/smells/sensations?
The green nail polish and red feet makes me feel like some sort of super hero!!!!! I am thinking some sort of female incredible hulk where I change color and grow or in my case swell!!!
Take care,
Alina
Thank you both for sharing your story! Alina, do you have raynauds? Your feet look like mine when raynauds is subsiding but I still have one toe holding out. I tried again to attach a pic but am still having issues. Thanks again for all sharing your story.
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Pretty dramatic picture! Your foot is the mirror image of what mine sometimes looks like: all toes mostly white except the fourth, which is bright red.
Yeah, raynauds is so weird! I have had the mirror image before also but it is less common for me. These circulation issues are so crazy! My hands are much more symmetrical with any type of cold or hot issue. It’s the feet that get wacky.
I see your picture clearly aftertheteacups! you just have to click on the link. I don't know how to add mine without making it a giant picture that takes over the whole page!!!!!
Yes I have Raynaud's too. In this picture I was in the grocery store and had been walking about 10 minutes. I also added a pic of the tops so you could see the burning on all of my toes. It started as burning and just when I couldn't take the pain anymore and I was checking out I suddenly had this numb sensation while standing in line to check out. I know everyone around thought I was crazy for taking pictures of my feet in the grocery store line!!! I was wearing flip flops so it was somewhat discreet. This particular time it was burning turned to a patch of frozen but I know what you mean by when you are numb and it comes back and everything around it turns red.
Thank you Lynn for sharing your story. 3 different NCS tests and 3 different results!!!! It makes me wonder why they even do them if they are so unreliable. Do your symptoms come and go? were they different each time you had your tests? I just wonder if there is any accuracy to them at all. I guess as you said ..... does it really matter?
Funny the doctors thought my EM was Raynaud's at first too. I didn't even have Raynaud's till a good 6 months after my first bad EM flare and 10 years after my first noticeable now that I know what it was EM flare. If you are just looking at a pic they can look the same. The red that comes when the blood comes back from Raynaud's looks like the regular burning of EM. It sure feels different though! That's for sure!
Enjoy your trip!
I am so glad you are going. I am glad you saw the airplane tips thread. You will be fine. Enjoy your family.
Take care,
Alina
aftertheteacups said:
Thank you both for sharing your story! Alina, do you have raynauds? Your feet look like mine when raynauds is subsiding but I still have one toe holding out. I tried again to attach a pic but am still having issues. Thanks again for all sharing your story.