Went to my general doctor today to follow up on what the rheumatologist found. After reading other postings, I’m more confused than ever. I do not have uncontrolled flare ups, my feet become red if I’m on my feet too long or if I sit (especially if the chair is hard and puts pressure on the back of my legs). When they are red, I can change positions and the redness goes away in a minute or so. I also have achy legs from the hips down. My legs ache more if I’m lying down for some time. Night time is the worst as my feet burn and legs ache and on top of that, I get restless leg which is supposedly part of my Narcolepsy. All this triggers hot flashes which make my feet burn even more. I have changed medications and no change. I’m just not sure if this is EM, something else, or I’m just so tired that I’m going crazy. Any suggestions?
It still sounds like EM to me. I have the same thing I call positional EM. It just happened last night and happens all of the time . If I am sitting in my recliner but lean to one side for more than a few minutes the side I am leaning on flares! My foot or hand or both. My EM usually occurs on both sides but when brought on by position it only happens to one. I thought I was the crazy one because no one else seemed to have this problem. I even asked about it in a previous post. Maybe I didn't word it properly but no one responded they knew what I was talking about.
The fact it is worse at night and with walking is classic EM.I am not a doctor and can't tell you one way or another I am just saying it sounds like it could be EM to me. I hope I am wrong but your not going crazy :)
Take care,
Alina
I also feel like I am "going crazy" and I put that in quotes so you all would understand the emphasis properly
I am getting ready to see my EM doc next Friday and I have a lot to talk about with him. First of all- my feet and lower legs started to burn last July (2014) when I was deep in the throes of my eating disorder- weighing 75 pounds and not able to eat much because my entire digestive system was shutting down.
I had no redness or swelling - but my toes went numb a year before - in August 2012 and my feet and toes were blue as were my hands. This "faux Raynaud's" is classic ED symptoms. My toes started to swell a little but only after I started to eat in Mid July 2013 - which is also an ED symptom- in refeeding you get a huge amount of edema. I still had no redness.
The redness didn't start until I was about 6 or 7 months into recovery - in February 2014.
Also, these days, the time when my feet feel the best is when I take a very hot bath at night. My feet- really just my toes hurt and burn all day and they are red and a bit swollen. During the day,my thighs are freezing cold and in the evening also. I think that everything feels good in the tub because my legs are finally all the same temperature- all of each leg is hot rather than the toes and the sole of my feet being hot and the rest of my legs being cold.
Once I get on the bed to sleep I have rebound pain from having gotten out of the tub and my toes feel like they are being put in a vise and squished. And they are all pins and needles - but once I fall asleep - by the first time I awaken around 2 p.m. ( 3 hours later) my feet feel OK - just a little stiff- I do keep the air conditioning on and keep the feet outside the covers and then in the morning after I have been at rest for 8 hours, my feet almost feel normal till I get up and start to walk around. Then they feel weird but not yet burning. They start to burn on the bus to work because I can feel the heat of the undercarriage of the bus through the floor and it starts my toes flaring.
So Is this really EM??? I never have worse pain at night. I just have to darn toes going all the time -except in the tub and sleeping and also the pain seem less when I walk and worse when I stop walking and sit. Elevating the feet doesn't stop the flares or the pain. Nothing does except the warm tub and sleeping - off my feet completely for 8 hours. I still have some edema from eating.
One other thing I realized- my doc said that EM is about not being able to regulate your body temperature properly. Well, I never ate during the day in my life until last year - I would only have a banana and come yogurt. and I didn't eat real meals either. So my body was always cold. Now in "recovery" I have to eat little things all day long so my body is constantly processing the food and the core temperature increases.
I think what I am saying is that being "warm " is a new state for my body and I don't think it is used to it and hence that is wny I think I developed EM...
I am confused and hope that my doc can help me next week. Anyone else have symptoms like this????? I doubt it but just asking.
Thanks,
Jordy
Hi Alina,
I'm laying in bed on a cold winter morning in a soft old pair of summer pj's. Blankets are kicked back and although a bit too cold on the top of my body - the back of my head, neck, upper back, bum, back of legs and heels - wherever my body , including my elbows, are feeling pressure from the bed are burning. Does that sound like what you experience? BtW, inside my mouth is also burning too. I'm about to get up because it's really starting to hurt.
Blue
Hi Jordy, just wanted to say that I've experienced the same thing with my feet while on a bus. Having to keep them down is not good for POTS or EM, but the heat coming off the floor in an unairconditioned bus, even in winter, can be very uncomfortable for my feet. I remember once saying to my mother that the floor of the bus was too hot and she looked at me like I was crazy. It does sound nutty to many people, i guess.
I think baths can be a different experience for many of us. I can't put my hand into a bath that is the right temperature for my little granddaughter to bathe in.
My hand will go red straight away and I pull it out very quickly. My showers have to be on the coolish side.
From what I've read here, we all have similarities and differences in regards to EM.
Glad to hear you have a specialist appointment. I make lists before I go to mine now, so I Don 't forget anything while I'm there. This stuff is so complex and in my case, if a symptom is not happening to me while at the doctor's I will often forget to mention it.
blue
blue
Jordy516 said:
I also feel like I am "going crazy" and I put that in quotes so you all would understand the emphasis properly
I am getting ready to see my EM doc next Friday and I have a lot to talk about with him. First of all- my feet and lower legs started to burn last July (2014) when I was deep in the throes of my eating disorder- weighing 75 pounds and not able to eat much because my entire digestive system was shutting down.
I had no redness or swelling - but my toes went numb a year before - in August 2012 and my feet and toes were blue as were my hands. This "faux Raynaud's" is classic ED symptoms. My toes started to swell a little but only after I started to eat in Mid July 2013 - which is also an ED symptom- in refeeding you get a huge amount of edema. I still had no redness.
The redness didn't start until I was about 6 or 7 months into recovery - in February 2014.
Also, these days, the time when my feet feel the best is when I take a very hot bath at night. My feet- really just my toes hurt and burn all day and they are red and a bit swollen. During the day,my thighs are freezing cold and in the evening also. I think that everything feels good in the tub because my legs are finally all the same temperature- all of each leg is hot rather than the toes and the sole of my feet being hot and the rest of my legs being cold.
Once I get on the bed to sleep I have rebound pain from having gotten out of the tub and my toes feel like they are being put in a vise and squished. And they are all pins and needles - but once I fall asleep - by the first time I awaken around 2 p.m. ( 3 hours later) my feet feel OK - just a little stiff- I do keep the air conditioning on and keep the feet outside the covers and then in the morning after I have been at rest for 8 hours, my feet almost feel normal till I get up and start to walk around. Then they feel weird but not yet burning. They start to burn on the bus to work because I can feel the heat of the undercarriage of the bus through the floor and it starts my toes flaring.
So Is this really EM??? I never have worse pain at night. I just have to darn toes going all the time -except in the tub and sleeping and also the pain seem less when I walk and worse when I stop walking and sit. Elevating the feet doesn't stop the flares or the pain. Nothing does except the warm tub and sleeping - off my feet completely for 8 hours. I still have some edema from eating.
One other thing I realized- my doc said that EM is about not being able to regulate your body temperature properly. Well, I never ate during the day in my life until last year - I would only have a banana and come yogurt. and I didn't eat real meals either. So my body was always cold. Now in "recovery" I have to eat little things all day long so my body is constantly processing the food and the core temperature increases.
I think what I am saying is that being "warm " is a new state for my body and I don't think it is used to it and hence that is wny I think I developed EM...
I am confused and hope that my doc can help me next week. Anyone else have symptoms like this????? I doubt it but just asking.
Thanks,
Jordy
Hi Jordy. I don't have the SAME EXACT symptoms But I understand how strange it is that you would prefer to be burning all over than burning and freezing spots. That is me in a nut shell. As I am typing this my fingers have Raynaud's and my feet are burning. I will get episodes of the same body part both burning and freezing. Often it is the inside of my fingers are freezing but the rest of the hand is burning. I am NEVER comfortable EVER. I am burning or freezing and often both all of the time. I understand when you say you like the bath because it makes everything burn although I don't share your preference I just understand it, It is enough to drive you crazy being both!!! The tingling pressure you feel after a bath is what happens to me during a bad flare which doesn't surprise me that it happens to you after a hot bath. Elevating doesn't stop my burning it only helps with the tingling pressure. I can't tolerate the tingling pressure. It makes me feel as if my hands or feet even my knees get it . It makes me feel as if they will literally explode so when it happens I always stop and elevate.
I find that when I stop what I am doing my burning gets worse first before it gets better. I can't explain it but it happens. I still get so bad if I continue what I am doing including stabbing pain and cramping so I have to stop but when I do the actual burning gets worse before it gets better. It is really strange. It makes you feel there is little you can do other than not do much. I am disabled by this and can no longer work or play or anything really. All I can do is try to prevent it by staying in a cool home and doing little activity which works but still not all of the time. I agree Jordy it is enough to drive you crazy. I am so sorry you are having to go through this. I hope you get the answers you need when you see your doctor next.
Hi Blue. that is exactly what happens to me. I have always sworn pressure makes it happen but no one believes me. It makes sleeping difficult because you not only have the temperature to deal with but you have to move around a lot to alleviate the burning from pressure. If I am sitting in the recliner and just lean to one side a bit that area of my arm that is pressed into the arm of recliner starts burning. I have found helpful chillows . You can find them online. They are cooling with pressure. pressure is what seems to activate the cooling in it. If you just lay it on you it isn't as cool as under you or if you wrap it firmly on you. I only have 2 but I want to get enough to lay my whole body on it.....probably about 10 or so. I wish I could figure out a way to sew them together so they are one long body size mat but they are filled with water and sewing would puncture and ruin them. They still loose their cooling ability over time then you just readjust to another section and it is cooling again. So you will still have to move around in the night to keep it cool but it buys you time before the burning begins.
I too get burning in my mouth. The tongue specifically. It is awful. I have found a name for it. simple enough it is called burning tongue. It is listed as it's own disease but I am sure for some of the patients it is part of EM. My doctor gave me something called magic mouthwash for when it happens. At first I thought he was giving me a hard time and thought it was a joke. MAGIC MOUTHWASH???? That sounds like something you might try to give to a crazy person! It helps!!! Once again only for a short time but when you can't eat because of the pain it helps long enough to eat. It is actually a mouth wash with lidocaine in it to numb your mouth.
I am sorry blue you are having a hard night. I hope it gets a little better for you and you can get some more rest.
Take care,
Alina
Thank you to all that replied. It does help to know there are others out there that may feel the same way I do, or that you may experience different symptoms and yet we are all in the same EM boat together. I don't know if what I just wrote makes sense, but anyway, thanks for the support.