I have been having some annoying symptoms and thought that some of you may have an idea of the cause. My feet have been hurting for a week. They are a bit swollen but not too bad, the bottoms are sore to the touch, feel like they are bruised.
Last night my feet and legs were hot and burning like on fire with stinging pain like a blackfly bites. I had to sleep on my back as it was too painful to put any pressure on my legs. Today they are still sore and my left foot is numb/pins and needles. I am seeing my rheumy on the 22nd and will tell him about this but would appreciate any input you can provide.
This happen to me over the summer. My feet felt like they were on fire. Wearing shoes was unbearable. By the end of the week my feet were so swollen I had to borrow my daughters shoes a size and 1/2 larger than my own for a family wedding. It hasn’t happened since and have know idea what triggered it. I put ice packs on my feet before bed for a little relief and took Benadryl. Sorry I couldn’t be more help than to tell you, you’re not alone.
I have the same thing but mostly on the right leg. I use lidoderm patches. They really help with the nerve pain and make it possible for me to tolerate any pressure on my leg. BTW, the lidoderm patch was approved for the pain from shingles. I found that they do Not work on my rib/ chest wall pain which is more of a connective tissue pain than nerve pain. Hope you find something that helps.
If your legs are hot and burning, do they look red? You will want to be cautious of a blood clot, if the redness doesn't go away. I put my feet up on a pillow at night and elevate them when they really hurt. I also notice that my feet hurt first thing in the morning too. I take a diuretic for the swelling in my feet and legs. The foot pain I first experienced is one of the symptoms I had that led me to my lupus diagnosis. If your pain continues or worsens, you might want to see your PCP and not wait for your rheumy...
My mother & I both deal with this. Both have lupus. The Dr. guessed it was from arteritis (inflammation of arteries) and nerve pain. We often have to put our feet in cold water or put cold washcloths on them, but vitamin B complex that goes under the tongue for better absorption helps ours out a lot. Here's where I get it. http://bit.ly/1aFC2yB. We have also rubbed cortisone cream into the red, painful areas and that helps a lot. Hope this helps. It's miserable.
Thanks for all of your responses and tips. I will try the cortisone cream today as I have some on hand and try to get the vit B and patches mentioned. I don't think it is a blood clot it is not all red and it is both legs but one foot hurts more than the other. My one foot can't fit in my regular shoes, I am going to wear my running shoes with dress clothes to work today as no dress shoes will fit!
I experienced this while I was pregnant (3yrs ago)and I was very sick but had not yet been diagnosed with lupus so the doctor had said it was just pregnancy swelling\ nerve pain of the baby putting pressure on the nerves. I am glad I am not alone. These symptoms are crazy.
If it feels like you’ve stepped into a mound of fire ants, only 10 times worse, and is unrelenting without breaks of feeling semi-ok, then it might be the first stage of peripheral neuropathy. Definitely ask your doctor, the sooner the better.
I have the opposite feeling. My feet will feel frozen, so cold I can't possibly warm them. I have been tested for Peripheral Neuropathy and tested positive in both feet. It is often caused by Sjogren's or Lupus. My keeps progressing. It is painful, and causes walking to be very difficult. It is almost impossible to buy shoes as well. I pray this isn't what you have, but it sure could be.
Meg, there are two neurovascular conditions that people with autoimmune diseases, like lupus, are prone to. One is Raynaud's Syndrome, where your extremities will feel very cold and/or turn blue or purple. This is the one that most people know about. The other one, called erythromelalgia or EM for short, is a bit less common, according to mainstream medicine, although I have a LOT of friends with lupus who have it, and I have it myself. EM is almost the exact opposite of Raynaud's, because your extremities (most often feet and lower legs but sometimes hands too) or your face, ears, or chest, turn red and/or feel like they are on fire. The pain level can range from discomfort to excruciating agony. There is an erythromelalgia group here, through Ben's Friends.... you might want to check them out. Here is a link to some information about EM: http://en.wikipedia.org/wiki/Erythromelalgia
There is a genetic form and then there is the other kind, the kind associated with other medical conditions such as lupus or Lyme disease (I have both). The kind of doctor you will probably need to see to diagnose this condition is a good dermatologist.
Where do you place the patches? Do the stick down well ??
MBPP said:
I have the same thing but mostly on the right leg. I use lidoderm patches. They really help with the nerve pain and make it possible for me to tolerate any pressure on my leg. BTW, the lidoderm patch was approved for the pain from shingles. I found that they do Not work on my rib/ chest wall pain which is more of a connective tissue pain than nerve pain. Hope you find something that helps.
Meg, there are two neurovascular conditions that people with autoimmune diseases, like lupus, are prone to. One is Raynaud’s Syndrome, where your extremities will feel very cold and/or turn blue or purple. This is the one that most people know about. The other one, called erythromelalgia or EM for short, is a bit less common, according to mainstream medicine, although I have a LOT of friends with lupus who have it, and I have it myself. EM is almost the exact opposite of Raynaud’s, because your extremities (most often feet and lower legs but sometimes hands too) or your face, ears, or chest, turn red and/or feel like they are on fire. The pain level can range from discomfort to excruciating agony. There is an erythromelalgia group here, through Ben’s Friends… you might want to check them out. Here is a link to some information about EM: http://en.wikipedia.org/wiki/Erythromelalgia
There is a genetic form and then there is the other kind, the kind associated with other medical conditions such as lupus or Lyme disease (I have both). The kind of doctor you will probably need to see to diagnose this condition is a good dermatologist.
I generally just put a patch on my lower leg. It does not stick well if it is going to be rubbing up against something like when I lie down. I just put some tape on the edges to keep it down. I used to go to sleep with my lower legs hanging off the bed- that’s how much it hurt/burned. The patches have been a God send.
M_rod424 said:
Where do you place the patches? Do the stick down well ??
MBPP said:
I have the same thing but mostly on the right leg. I use lidoderm patches. They really help with the nerve pain and make it possible for me to tolerate any pressure on my leg. BTW, the lidoderm patch was approved for the pain from shingles. I found that they do Not work on my rib/ chest wall pain which is more of a connective tissue pain than nerve pain. Hope you find something that helps.
I have had raynauds for years but my feet always get cold and purple. I wonder if you can have both raynauds and EM? The raynauds always only effects my hands and feet but this burning pain went all the way up my lower legs.
I will mention all of the possibilities to my rheumy and see what he says I feel like it is something to do with my veins and nerves. It is better today, still can't wear regular shoes but can walk without much pain. Thanks so much for all the suggestions I am going to try to get some of those patches.
Meg
JoAnn O'Linger-Luscusk said:
Meg, there are two neurovascular conditions that people with autoimmune diseases, like lupus, are prone to. One is Raynaud's Syndrome, where your extremities will feel very cold and/or turn blue or purple. This is the one that most people know about. The other one, called erythromelalgia or EM for short, is a bit less common, according to mainstream medicine, although I have a LOT of friends with lupus who have it, and I have it myself. EM is almost the exact opposite of Raynaud's, because your extremities (most often feet and lower legs but sometimes hands too) or your face, ears, or chest, turn red and/or feel like they are on fire. The pain level can range from discomfort to excruciating agony. There is an erythromelalgia group here, through Ben's Friends.... you might want to check them out. Here is a link to some information about EM: http://en.wikipedia.org/wiki/Erythromelalgia
There is a genetic form and then there is the other kind, the kind associated with other medical conditions such as lupus or Lyme disease (I have both). The kind of doctor you will probably need to see to diagnose this condition is a good dermatologist.
Meg, YES! I have both Raynaud's and EM and occasionally both of them hit me at the same time! It looks very weird when some of my toes are blue and others are red! They are both neurovascular diseases, and both can be associated with lupus. I developed the Raynaud's about 3 years before I first had an EM attack. To help with the EM flares, I was told by my doctor to elevate my feet and keep them cool (sometimes I have to have a fan blowing on them). I have trouble wearing shoes at times and cannot cover my feet or lower legs with a blanket, even during the winter, because if I have an EM flare while I'm sleeping, I have woken up with my feet swollen and bleeding from where the skin split open. :(
JoAnn
MegLupusNewbie said:
I have had raynauds for years but my feet always get cold and purple. I wonder if you can have both raynauds and EM? The raynauds always only effects my hands and feet but this burning pain went all the way up my lower legs.
I will mention all of the possibilities to my rheumy and see what he says I feel like it is something to do with my veins and nerves. It is better today, still can't wear regular shoes but can walk without much pain. Thanks so much for all the suggestions I am going to try to get some of those patches.
Meg
JoAnn O'Linger-Luscusk said:
Meg, there are two neurovascular conditions that people with autoimmune diseases, like lupus, are prone to. One is Raynaud's Syndrome, where your extremities will feel very cold and/or turn blue or purple. This is the one that most people know about. The other one, called erythromelalgia or EM for short, is a bit less common, according to mainstream medicine, although I have a LOT of friends with lupus who have it, and I have it myself. EM is almost the exact opposite of Raynaud's, because your extremities (most often feet and lower legs but sometimes hands too) or your face, ears, or chest, turn red and/or feel like they are on fire. The pain level can range from discomfort to excruciating agony. There is an erythromelalgia group here, through Ben's Friends.... you might want to check them out. Here is a link to some information about EM: http://en.wikipedia.org/wiki/Erythromelalgia
There is a genetic form and then there is the other kind, the kind associated with other medical conditions such as lupus or Lyme disease (I have both). The kind of doctor you will probably need to see to diagnose this condition is a good dermatologist.
This is Neuropathy . I take Gabapentin for that and it helps a lot. I still have it sometimes, Usually at night. But since I have been taking this medicine 2x's a day it's less often and not as sever.
My hands have symptoms of EM. I have a line that forms between my wrist and knuckles that is bright red and hot. My face gets really hot too. I also have freezing cold feet. I do have peripheral neuropathy.
I too have peripheral neuropathy, as well as Raynaud's Syndrome and erythromelalgia. There is a big difference between EM and neuropathy.... they are NOT the same! If your doctor has told you that they are the same, he/she probably has never heard of EM. Many doctors have not.