So Many Questions

General
1

1. Is EM usually progressive? Though I am generally doing better during the day now that the weather is cold, I have noticed that my flares are worse and I have more problems with my hands than I did when all this began last Spring. (For the first time in my life, I am not looking forward to the weather warming up!)

2. Does anybody else awaken in the morning with very swollen, but not particularly red, hands and feet? It is terribly painful to walk when I get out of bed, but the redness is more common in the evening, particularly if I have to be on my feet.

3. Any recommendations for soft-soled sandals?

4. Is it common to have constant pain in between flares? I almost always have some pain in my feet, which gets worse when the weather warms and in the evening even if my feet don't turn red.

Thank you in advance for any words of wisdom! I am so grateful to have somebody to talk to.

2

YES IT IS BETTER WHEN THE WEATHER IS COLD AND DRY....BUT HUMID AND COLD ARE BAD ALSO

Yes I am in constant PAIN.......I TRY TO RELAX when I have Flares and Pain...HAVE A GREAT 2012 JAN PETER

3

HAVE A GREAT 2012 WITH NO MORE PAIN PLEASE....I have Pain for the last 10 YEARS NOW.........

4

1. It depends on the person, but in my case it is slowly progressing. I have had some success with reducing sodium in my diet, since additional sodium induces water retention and greater pressure on nerve endings. I also have had success with prescription gabapentin at low doses. I have also had some success with lidocaine patches which act as a vasoconstrictor to reduce redness.

2. My feet and lower legs usually hurt upon waking in the morning. At night, our bodies tend to puff up as we retain liquids, so it's normal morning to be a bit puffy for a few hours upon waking. If the pain is worse when I wake up, I simply turn around in bed and put my feet up on the wall for a few minutes and massage down the extra fluid retention out of my feet and lower legs. This provides immediate relief.

3. Don't have any input here.

4. I've heard that it is common for greater pain in the evening, and I usually experience that as well, though less so now that I have significantly reduced my sodium intake. My focus on sodium is that the latest research indicates that the pain is a result of malfunctioning "voltage gated sodium channels" in our nervous system. Plus, I noticed that when I would have high sodium meals throughout the day, the pain would be worse in the evening.

Hope this helps.

5



TANGHE JAN PETER said:

HAVE A GREAT 2012 WITH NO MORE PAIN PLEASE....I have Pain for the last 10 YEARS NOW.........

Good evening!

Tullilou, am so sorry to hear that your EM is getting worse. I have been suffering with this awful disease for nearly 3 years and have recently noticed that my hands are flaring up too

Shoe wear is just soft flip flops. It doesn't seem to matter whether it's winter or not for me. I have 4 kids and everyone complains if I turn off the heating..

Also what I have noticed recently is that I am unable to put any pressure on my heels or the back of my foot. The skin seems to have thinned so much that it's becoming really difficult to drive.

Good luck peeps, and let's hope for a pain free New Year.

6

I am also curious as to if EM is a condition that progresses for others. I started with redness in my hands a couple years ago. Then tingling, and now burning in both hands and feet.

I LIVE in "Yellow Box" sandals!

7

Hi,

I can feel like I'm having a pretty good day with my feet pain & then when I go to bed the pain increases & also they aren't necessarily red.

I highly recommend Birkenstock sandals. They have great arch support & are very comfortable. I also have Fibromyalgia & Chronic Fatigue Syndrome & have been disabled with that for the past 23 years. I used to have to wear my tennis shoes with personalized arch supports all the time because of plantar fascitis. Thank goodness I don't have that anymore because I live in my Birkenstock's & slippers now that I have EM plus my feet are elevated most of the day & this helps tremendously. I also wear Clark clogs which are open heeled & can slip them off without people really noticing & this helps too. I get the ones that only have about an inch heel because they are a softer more cushy sole. They don't have a very big selection with that heel though. Oh, Cabela's catalog sometimes has a good selection.

I hope this helps some.

Lisa

8

It does help. Thank you! I am now taking a close look at my sodium intake. I don't think I eat a lot of salty foods, and my blood pressure is on the low end. But, a little over a year ago I began eating organic lunch meat most days. I think I should take care to only have it a couple of times a week in case that is contributing to my pain.

Don Jones said:

1. It depends on the person, but in my case it is slowly progressing. I have had some success with reducing sodium in my diet, since additional sodium induces water retention and greater pressure on nerve endings. I also have had success with prescription gabapentin at low doses. I have also had some success with lidocaine patches which act as a vasoconstrictor to reduce redness.

2. My feet and lower legs usually hurt upon waking in the morning. At night, our bodies tend to puff up as we retain liquids, so it's normal morning to be a bit puffy for a few hours upon waking. If the pain is worse when I wake up, I simply turn around in bed and put my feet up on the wall for a few minutes and massage down the extra fluid retention out of my feet and lower legs. This provides immediate relief.

3. Don't have any input here.

4. I've heard that it is common for greater pain in the evening, and I usually experience that as well, though less so now that I have significantly reduced my sodium intake. My focus on sodium is that the latest research indicates that the pain is a result of malfunctioning "voltage gated sodium channels" in our nervous system. Plus, I noticed that when I would have high sodium meals throughout the day, the pain would be worse in the evening.

Hope this helps.

9

Thank you for sharing your experience and the shoe advice! I know others who swear by Birkenstocks. Are they soft/cushiony? Most sandals I've tried have thin, hard soles and with the hot weather are miserable to walk in. It's also impossible to wear heal cups or other inserts with most sandals since they shift and fall out.

It's funny you should mention Clark's clogs because I purchased a pair to wear at work and I love them!


lisers said:

Hi,

I can feel like I'm having a pretty good day with my feet pain & then when I go to bed the pain increases & also they aren't necessarily red.

I highly recommend Birkenstock sandals. They have great arch support & are very comfortable. I also have Fibromyalgia & Chronic Fatigue Syndrome & have been disabled with that for the past 23 years. I used to have to wear my tennis shoes with personalized arch supports all the time because of plantar fascitis. Thank goodness I don't have that anymore because I live in my Birkenstock's & slippers now that I have EM plus my feet are elevated most of the day & this helps tremendously. I also wear Clark clogs which are open heeled & can slip them off without people really noticing & this helps too. I get the ones that only have about an inch heel because they are a softer more cushy sole. They don't have a very big selection with that heel though. Oh, Cabela's catalog sometimes has a good selection.

I hope this helps some.

Lisa

10

Thank you for sharing your experience and for the "Yellow Box" tip! I will look into those.

Libby W. said:

I am also curious as to if EM is a condition that progresses for others. I started with redness in my hands a couple years ago. Then tingling, and now burning in both hands and feet.

I LIVE in "Yellow Box" sandals!

11

Thank you for sharing! I have also have a difficult time resting my foot on the back of my heal. It's more comfortable to prop my calves on a pillow and let my feet hang off.

Janice Garbutt said:



TANGHE JAN PETER said:

HAVE A GREAT 2012 WITH NO MORE PAIN PLEASE....I have Pain for the last 10 YEARS NOW.........

Good evening!

Tullilou, am so sorry to hear that your EM is getting worse. I have been suffering with this awful disease for nearly 3 years and have recently noticed that my hands are flaring up too

Shoe wear is just soft flip flops. It doesn't seem to matter whether it's winter or not for me. I have 4 kids and everyone complains if I turn off the heating..

Also what I have noticed recently is that I am unable to put any pressure on my heels or the back of my foot. The skin seems to have thinned so much that it's becoming really difficult to drive.

Good luck peeps, and let's hope for a pain free New Year.

12

Hi Tillilou,

I've had EM for 27 years, since the age of seven so I hope that I can help. My dad is a doctor, so I often ask him about stuff people post. Due to my illness, he had to become an expert on EM! (He's a GP, what is called a family doctor in the US, I think)

1. Depending on what kind of EM you have, it can progress. If your EM is caused by another disease (secondary EM) then it can get worse as the disease that causes it gets worse. It also tends to go through a period of progressing after it first appears, due to causing tissue and nerve damage, but then stabilises.

You also have to wait and see how the seasons affect your EM. Some flares are triggered by the blood vessels shutting down, so cold weather can make EM worse! Without knowing exactly what type of EM you have, it's difficult to say.

2. I often have swollen hands and feet but it is really important to mention this to your doctor, as it can be a side-effect of medication or a problem related to something else you have. My dad once said that one of the worst parts of his job was people with diseases like ours not mentioning things like this. This was because they could either be something he could treat easily, symptoms of something else or symptoms of the disease that just don't get mentioned to doctors, so they don't know about them.

3. I'm probably not much help with this as I live in the UK, but I'll try to find you something similar to what I wear.

4. With my EM, I feel like it's in a constant state of readiness, like a car that has the engine going but hasn't been put in gear yet. It may not be a true flare but it is sore.

This can also be due to nerve damage, but it does sound more like low-level EM.

I think all of us here feel the same way about this site. This is the one place I know that I can post things about my EM and that people will understand. This site can't take our EM away, but it can take away some of the loneliness of having such a rare disease.

13

I need the Birkenstocks because of the good arch support but they are made of cork with a thin rubber sole so maybe they would be too hard for you. I looked at the Yellow Box sandals someone mentioned & the soles look soft & cushy but I know I couldn't wear them because of being flip flops & no arch support. I would suggest whatever you try to wear them around the house first to see how you do with them & if they don't work you can return them.

I'm glad you like the Clarks. They are perfect for me because I have two different size feet & they don't slip since they are opened heeled. :)

Tullilou said:

Thank you for sharing your experience and the shoe advice! I know others who swear by Birkenstocks. Are they soft/cushiony? Most sandals I've tried have thin, hard soles and with the hot weather are miserable to walk in. It's also impossible to wear heal cups or other inserts with most sandals since they shift and fall out.

It's funny you should mention Clark's clogs because I purchased a pair to wear at work and I love them!


lisers said:

Hi,

I can feel like I'm having a pretty good day with my feet pain & then when I go to bed the pain increases & also they aren't necessarily red.

I highly recommend Birkenstock sandals. They have great arch support & are very comfortable. I also have Fibromyalgia & Chronic Fatigue Syndrome & have been disabled with that for the past 23 years. I used to have to wear my tennis shoes with personalized arch supports all the time because of plantar fascitis. Thank goodness I don't have that anymore because I live in my Birkenstock's & slippers now that I have EM plus my feet are elevated most of the day & this helps tremendously. I also wear Clark clogs which are open heeled & can slip them off without people really noticing & this helps too. I get the ones that only have about an inch heel because they are a softer more cushy sole. They don't have a very big selection with that heel though. Oh, Cabela's catalog sometimes has a good selection.

I hope this helps some.

Lisa

14

Yellow Box does have a few varieties that aren't flip flops, so I'm ordering some. Fortunately, my daughter wears the same size shoes as I and she thought they were cute when we looked at them online. So, if they don't work for me they will become hers :)

lisers said:

I need the Birkenstocks because of the good arch support but they are made of cork with a thin rubber sole so maybe they would be too hard for you. I looked at the Yellow Box sandals someone mentioned & the soles look soft & cushy but I know I couldn't wear them because of being flip flops & no arch support. I would suggest whatever you try to wear them around the house first to see how you do with them & if they don't work you can return them.

I'm glad you like the Clarks. They are perfect for me because I have two different size feet & they don't slip since they are opened heeled. :)

Tullilou said:

Thank you for sharing your experience and the shoe advice! I know others who swear by Birkenstocks. Are they soft/cushiony? Most sandals I've tried have thin, hard soles and with the hot weather are miserable to walk in. It's also impossible to wear heal cups or other inserts with most sandals since they shift and fall out.

It's funny you should mention Clark's clogs because I purchased a pair to wear at work and I love them!


lisers said:

Hi,

I can feel like I'm having a pretty good day with my feet pain & then when I go to bed the pain increases & also they aren't necessarily red.

I highly recommend Birkenstock sandals. They have great arch support & are very comfortable. I also have Fibromyalgia & Chronic Fatigue Syndrome & have been disabled with that for the past 23 years. I used to have to wear my tennis shoes with personalized arch supports all the time because of plantar fascitis. Thank goodness I don't have that anymore because I live in my Birkenstock's & slippers now that I have EM plus my feet are elevated most of the day & this helps tremendously. I also wear Clark clogs which are open heeled & can slip them off without people really noticing & this helps too. I get the ones that only have about an inch heel because they are a softer more cushy sole. They don't have a very big selection with that heel though. Oh, Cabela's catalog sometimes has a good selection.

I hope this helps some.

Lisa

15

Thank you for your reply! I find your words of wisdom a great blessing.

Though the cause of my EM hasn't been confirmed, my neurologist suspects it's secondary. I also have small fiber peripheral neuropathy and paresthesia.

The cold isn't pleasant for me either, and I have a hard time keeping my hands or feet at a comfortable temperature. Either they are uncomfortably cold, or when they warm up they begin to tingle, then swell, then flare when I try to walk/stand or work with my hands. It will be interesting to see how warmer weather effects me. Last summer was pretty awful, and I spent a lot of time on the couch with my feet hanging off of a pillow. At that stage, my hands hadn't yet flared though I did have pain when using them, so I feel that the EM has progressed since then.

Thank you for emphasizing the importance of telling my dr. about the swelling. I did tell the hematologist and my neurologist. I wonder, though, if I should see my primary care (GP) doctor again. Sometimes I worry that specialists are so specialized/focused that they miss anything out of their realm of expertise. But the wait to see my GP is a couple of months unless I call with an acute illness and request to be seen the same day. I'll have to give this some thought and decide what to do.

starsmurf said:

Hi Tillilou,

I've had EM for 27 years, since the age of seven so I hope that I can help. My dad is a doctor, so I often ask him about stuff people post. Due to my illness, he had to become an expert on EM! (He's a GP, what is called a family doctor in the US, I think)

1. Depending on what kind of EM you have, it can progress. If your EM is caused by another disease (secondary EM) then it can get worse as the disease that causes it gets worse. It also tends to go through a period of progressing after it first appears, due to causing tissue and nerve damage, but then stabilises.

You also have to wait and see how the seasons affect your EM. Some flares are triggered by the blood vessels shutting down, so cold weather can make EM worse! Without knowing exactly what type of EM you have, it's difficult to say.

2. I often have swollen hands and feet but it is really important to mention this to your doctor, as it can be a side-effect of medication or a problem related to something else you have. My dad once said that one of the worst parts of his job was people with diseases like ours not mentioning things like this. This was because they could either be something he could treat easily, symptoms of something else or symptoms of the disease that just don't get mentioned to doctors, so they don't know about them.

3. I'm probably not much help with this as I live in the UK, but I'll try to find you something similar to what I wear.

4. With my EM, I feel like it's in a constant state of readiness, like a car that has the engine going but hasn't been put in gear yet. It may not be a true flare but it is sore.

This can also be due to nerve damage, but it does sound more like low-level EM.

I think all of us here feel the same way about this site. This is the one place I know that I can post things about my EM and that people will understand. This site can't take our EM away, but it can take away some of the loneliness of having such a rare disease.