Hot feet

[Leonne]

I'm a 67 year old male who has struggled with this demon all my life. I have too many stories to relate so I won't.
I'm most interested with the problem of "hot feet". When RLS is worst, my feet are so hot, that it is worse than the RLS. Those of you who have hot feet please give me some insight in how you handle it. I freeze my wife out of the bed room, kitchen and living room.
When I was 5 years old (our family still talks about it) I insisted on going outside bare footed in snow. They asked what kind of feet I had and my answer was always "hot ones".
Two years ago I had a valve replaced in my heart. Yes, the drugs augmented my RLS. The first night, before I was conscious, it was impossible to keep me in bed. I'm told that I "demanded" a fan for my "hot feet".
One more thing. I am on Mirapex. I augmented on this treatment. I stopped using it for 4 days. The forth day there was no sleep at all. I went back on Mirapex at half dosage and am getting alone fine two months later.

[jan3213]

Hi Leonne, it's Jan

Welcome to our family! I'm glad you've found us, but sorry you have RLS. First of all, I also have "hot feet". Have had all my life--well, anyway, as far back as I can remember. I can never stand having my feet under cover! I feel as if you can almost see heat coming off of my feet like you see heat rising off of newly paved roads in the summertime! That's the way mine feel. My feet also sweat profusely. So, no matter how hard I try, no matter what product I use, well, my feet don't smell very pretty! I am also on Mirapex and have been for a long time. I am also experiencing augmentation. But, I'm scared to take a drug holiday because I have RLS so badlyI don't think I could stand what would happen if I went off entirely. I would be literally climbing the walls! Once again, welcome. You'll find some great people here. We have members who are great researchers, members who have a lot of knowledge about pharmaceuticals, and many of us are here to share our personal experiences, some of them may include non-pharmaceutical methods which may seem different, but may help you. If you need an ear to listen or a shoulder to lean or, please come to us. That's what we are here for. WE UNDERSTAND WHAT YOU ARE GOING THROUGH!!! We are a family! Welcome!!

Jan

[Sara]

Leonne--

My auntie and her father (my grandpa) both experience(d) the hot feet you describe, and have/had RLS. I think that their experience was very similar to yours, but the only thing I've heard my auntie say that helps is what Jan just said... leaving her feet out of the bedcovers. I'll ask, though, if she's had luck with anything more specific, or if Gramps did while he was alive.

As for me, I got the familial RLS, but I actually seem to have more RLS symptoms if I let my feet get cold. It's like the shivering almost "triggers" the creepy-crawlies.

Nice to meet you. Best --
Sara

[Leonne]

Thank you both for responding to my request. I have been reading this discussion board for some time. I feel like I know many of you. RlS is a family thing with our family and extended family as well. The "hot feet" is harder for me to handle than the RLS. I can move, but sometimes there is nothing to do for the wet hot feet. I never wear the same shoes two days in a row, sometime I have to change then during the day. I slip my shoe and socks off even when I visit folk I don't knw after asking them if it is OK. My wife worries about that, but it works. Sometimes at night I get so wet, that when I get up, I get chilled, but my feet are still hot.

I wonder if somebody could invent a "leg cooler" that would go up over the knees that one could wear during the day. That would be heaven.

I get so much out of this discussion board. It helps to get past those tough times.

To illustrate how tough it is to deal with these things. I grew up in a family that didn't show emotion. I was writing to a relative, explaining some of the things that RLS did to me. All of a sudden I broke out crying. I wasn't in pain, RLS wasn't bad at the time, but I was overwhelmed with all the things I RLS had done to me. A male in our family doesn't do that. For the first time, my wife understood how hard it is to live with.

I am so glad this is out in the open. Keep up the good work.

Thank you.

Leonne

[jan3213]

Leonne, it's Jan

I'm so glad this board is helping. I hope you register and join us!!!!!

I felt the very same way you do, and still do! Have you ever read any posts from a person named Becat? One of her favorite sayings is:
"We're all in the same boat, let's just take turns rowing." (I'm sorry, Becat, if I didn't get that exactly right.) In other words, Leonne, we're here to help each other, and, if you've read any recent post, you've seen that I needed help and several members came to my aid right away. That's the way we are all. That's what makes us a family. We understand each other and know what each of us is going through like no one else--not our family members, even though they love us; not our friends; not our co-workers; not even our physicians. Unless you have RLS, you can't imagine what it is like. You really need support. It's called the "invisible disease", did you know that? We look like there's nothing wrong with us, but when you get worse, and, unfortunately Leonne, unless you are VERY LUCKY, it usually does get worse as you get older, you'll be so glad you became part of us. And, believe me, there is sucha blessing in being able to help someone else in need. So glad we've been of help. Please consider becoming part of us!

Jan

[Sara]

Leonne and Jan--

I asked my auntie if she'd found anything that helps her hot feet, as I told you I would do. She said that it wasn't fool-proof, but she had had a little relief from one topical product.

Aloe vera gel with lidocaine. Usually this is packaged as a sunburn remedy, and there are a couple different brands I've seen (and Auntie mentioned others in her area than I've seen.) Usually it's green and comes in a pretty large pump bottle, and not too expensive either.

This product does NOT work for RLS... at least not for me... I have some (good for sunburn, shaving, mosquito bites, etc.) and I have tried it a couple of times for my RLS, just in case. But Auntie said that it did give some relief for her hot feet. The gel does feel cool going on, and dries nice, not sticky or greasy. Might be worth a try, and if it doesn't work, you're all set for sunburns or bug bites anyway, right?

I keep thinking about the hot feet issue, and although I do not have hot feet now, with any frequency (as I said, mine tend to be cold, actually, and I keep them warm on purpose a lot of the time). I HAVE remember lately one or two isolated incidents where my feet all the sudden got sweaty in my slippers in the evening or morning, and I had to take them off right away, even though the house is always coolish. Makes me wonder now, since hot feet is on both sides of my family, maybe, if those were actually hot feet episodes, not just that I got hot, if you catch my meaning. Hmmmmmm.....

Well, anyway, for what it's worth...
Sara

[Leonne]

Thank you Sara and Jan. Isn't it interesting what we can learn from each other. I'm typing at 6:00 AM in a room at 64 degrees. My feet are so hot that I can hardly stand it.

The reason I am so interested in all I can find out is that I come from a large extended family. After talking with even 2nc cousins I find almost half of them are dealing with this problem to some degree.

Sara, I'm going to try "auntie's" suggestion, however, I have had no response from other topical solutions.

Thank you again.

Leonne

[Sara]

Leonne--

When I was a teenager, my mom used to keep the thermostat at 58 and run around barefoot, while I could barely bear to wash my face at that temp, let alone disrobe for a shower. She's since survived cancer, and isn't quite so much that way about cold... but you do sound familiar.

What's interesting is that the auntie and grandfather I know have/had hot feet are on my dad's side of the family, so like you, I have a lot of relatives with similar issues. My mom's mom MIGHT have had RLS, but she was sort of private about ailments. One of my cousins has a daughter with RLS... need to ask her about the hot feet, because something she said about this little girl's symptoms could perhaps indicate that.

I've not had much luck with any kind of topical product for RLS, and I don't know about the hot feet thing, either, of course, but the one thing that has helped mine a bit might be a similar thing to how the aloe/lidocaine MIGHT help with hot feet....

I sometimes use pH neutralizing gel to soothe my RLS. So far it doesn't really "stop" the symptoms, but what it DOES do is, if it's REALLY bothering me, say right before bed or right before I have to sit through something, using the gel seems to calm or soothe the RLS enough for a short term to let me fall asleep, take my mind off my feet for a tv program or conversation, etc.

Since my auntie does seem to sleep better, more like me (say 5-6 average, not like some here who barely sleep at all), it sounds like this is the sort of thing that might just take the 'edge' off enough short-term to let you feel comfortable "enough" to concentrate on something, fall asleep, etc. I don't think, unfortunately, it's likely to really "solve" the hot feet problem. <sigh>

Take good care, Leonne (and everybody!)
Sara

[nelly]

Hi Folks,

I'm a relative newbie here. I posted before about trying mirapex for 4 days(made me too nausseous to continue) and it not working on the "tingles" and Jan and others gave me some great reading material on RLS.

I have had a breakthrough in my case that may be helpful to ohters where this tingling etc is related to hot feet. In my case the area where I have sensation does not tingle when it is cold, only when warm, the hotter, the worse it is.

I have had some sucess with massage (full body, craniosacral, reflexology) releiving or making my tingling much less for a day or two.
What I discovered on these days of waking up with no interruption to sleep (a rarity!) that my ankles below the ankle bone were not bright red or felt hot even though my feet were warm from being under the covers all night.

I found that only when the area flared up red, which made it feel hot relative to the other areas around it up my leg and down to my toes, did I get the tingly crawly itchy sensation. My mom suggested that maybe this was a circulation thing and when I did some research came across a condition called Erythromelalgia that totally fits the bill (with the exception that I don't have actual "ouch type pain" just the uncomfortable tingle-itch).

So I urge all of you with hot feet to get that possibility checked out!
Google it and you will find info.

I go the the neurologist next week to explore this more. Some folks get releif by taking aspirin or many of the same drugs that help folks with RLS. The trademark things that work for most folks with erythromelalgia are:
1. getting the area cold again (with ice water, cold packs, pulling the covers off the feet etc) and
2. elevating the affected area

both work for me but neither are very practical when it comes to sleeping for me.

Erythromelalgia can be hereditary (autosomal dominant) or caused by other underlying conditions like diabetes, lupus, or other blood disorders.

Just another possibility for folks to explore for those of us who have mysterious tingling with hot feet and are looking at RLS and other things.


best wishes to everyone,
nelly

[Anonymous]

Hi- I'm new to the site but not new to RLS. My RLS started immediately following major back surgery in 1992. I too, noticed that my feet and my thighs would become so hot during a RLS episode, I would have to sleep without covers on until the RLS made it impossible to lay still anymore. It's so interesting to read that others have this symptom. Wild, isn't it? I also get RLS in my left arm, and this too, oddly enough immediately followed neck surgery in 1998. Anybody else notice a connection with surgery? I've always believed it could be related to nerves cut during surgery and not being totally regenerated.

[Betty/WV]

Hi All: Was just reading some of the messages. I'm new to this site, but as one message said , "not new to rls." I was reading Leonne's message about the "hot feet". I don't have that problem, but something new started happening to me. The rls has moved to my feet. Just a short trip to the grocery store will cause my feet, (the tops) to go wild. At first I thought maybe my shoes were causing my feet to hurt but then I realized it was the good ole rls, only now its in my feet. I really like this site, it does feel like family. Not too many people understand my problem. Even my husband doesn't, and he see me up and down all night. And there have been times I was so tired and couldn't sleep and I would set on the edge of the bed and cry. Sometimes I just feel helpless. I have done everything I can to find help, sleep studies, meds, etc. etc. I now take neurontin and vicodin. I used to take clonazapam, but it stops working. I can't do the things I used to do, or the things I want to do. I am usually so tired that just to do the very basics is a chore. This site is so wonderful, its somewhere to go and someone to talk to, when you feel so desperate. I remember once, many years ago, I went to a doctor for another problem, and I told him about my legs, and he made fun of me, he said, "where did you hear about that on the Oprah Winfrey show"?. I had done some research and read about rls and thought that was what was wrong with me. But doctors now are beginning to believe that there is such a thing as rls. Thanks all for "listening". It helps. BETTY/WV

[becat]

Hi Betty,
Boy, I tell ya, we'd be doing good to get this on Oprah. What a boost that would give us to have that many people hear about it at once.
Your right, we are like family here. And too, not many people understand this disorder. Your husband may not understand it yet, but some day he can. Hope is the word here Betty. We have to educate so many that don't suffer with this.
WE know all too well the Hopelessness RLS can bring. Seems like your never going to live a normal life. But you know by now it's all a matter finding what works for you, that can change from time to time. I'm not going to tell you it's been a quick fix for many of us here, but there are some that have found things that work for them for extended good periods of time. I'm one of the ones that had to work for a while to find something that worked for me. I'll take it for as long as it last.
The best part is now your here. You can vent as you please. Share what works and doesn't. You'll find some wonderful information on this board. You may find things that you can enlighten the rest of us about. No matter what it is, your welcome to share.
When I showed up here last Apr., I was hopeless, without sleep for 9 years or so, and in pain all the time. This place, these people helped to change my life. I wasn't crazy or alone in this. These people will open their hearts, lend you a shoulder, and bring you comfort. You have to admit it's hard to understand something you don't have. It's even harder to understand something you can't see. But guess what, we are gaining our voice and won't take this lying down.
So it's the basic chores get done, good for you. There was a time that was no longer important to me. Now with better treatment I'm gaining strenght. It can't all be reversed in a short time. It took you a while to get to this point, right. So with better treatment, you'll feel better and get back to the New You Living Well With RLS. For now, take a nap when you can. Protect your health as best you can.........ANd never think your alone in this again. You have us now.
Hope tomorrow is a better day............Welcome to the group.

[Sara]

Hi, Betty!

Glad to see you posting! Hope all's going okay out your way.

You and I talked before about feet specifically, and that's really where my RLS has been most all along. You mentioned to me about changing to sneakers from sandals, and it feeling worse. I'm noticing that different shoes feel worse/better to me different days, since you mentioned that, too!!!

I always tried to just take OFF my shoes when my RLS was bad, but sometimes now (old age creeping up? ), sometimes something DIFFERENT on my feet is better than nothing on them.

I'm having more trouble with rough surfaces exacerbating my RLS, so the experience I had the one night on the gravel wasn't a fluke. And the "contact-irritated" RLS, if you all know what I mean by that, seems to tend to creep up my legs more than my "normal" RLS (which usually stays in my feet and ankles only. )

Betty, you take care and hang in there. I'm talking more about my RLS to my husband, family and friends... not in a complaining way, but in a frank and matter-of-fact way. I THINK some of them are starting to understand at least a LITTLE better (although,I'm with YOU... seems like your hubby ought to have a good idea of what's going on with you after all those nights you were up crochetting or crying on the side of the bed, right?!!!) At the very least, I feel like more people are realizing that RLS exists and isn't (somethiing my husband said to our kids once)... "Just something everyone gets occasionally when they get overtired."

Keep posting, honey, and take good care.
Sara

[jan3213]

Hi, it's Jan

I'm sooooo glad you found us, Betty. I'm sorry you have RLS, BUT you've found a great support system right here.

Having RLS can, as you know, interfere with your life in so many ways. I won't repeat what it does to you physically and emotionally. BUT, it is also frustrating when loved ones and friends don't understand what you are going through. I'm sorry your husband isn't as understanding as he SHOULD be. I know what's that like. But, hopefully he'll come around. Have you tried giving him information to read, or just read the info to him? That's what I finally had to do (I've recently been diagnozed with fibromyalgia and my hubby didn't want to talk about it at all). Fortunately, my hubby is coming around! Hopefully yours will too.

As far as doctors are concerned, it's absolutely shameful how some of them treat us!! However, there are good doctors who will listen. Just remember, you HIRE them--something they forget!! And, the best defense is an offense!! You're already doing something about that--researching RLS. The more YOU know about RLS, the more informed you will be about finding the RIGHT doctor! Sleep deprivation is dangerous. It can do damage in so many ways and your health is so important!!! Sounds like you're on the right track in that area.

Now, as far as support is concerned, I wish I could wave a magic wand and make your familiy and friends understand what you're going through. Obviously, I cant--BUT, you've come to the right place, as others before me have said!! This is a wonderful place, full of understanding people who WILL listen to you (don't EVER feel like you're complaining!), offer advice (which you can choose to try or not, it's up to you), and even help you do research. We may even tell you some of our personal experiences in hopes that what we have gone through will help you, too. Sometimes, I think this site should be called Restless Leg SUPPORT Foundation because I cannot tell you how much support I have found here!!

You've met Becat and Sara--you'll read many posts written by them. They are two of our best members. There are others you haven't met yet, but I'm sure you will. We are like a family here, Betty. We have members who check this board regularly, and if you post a question or just want someone to "talk" to, SOMEBODY will see your need and respond! I PROMISE!!!

Once again, welcome!!! You've found a home!

Jan

[Betty/WV]

Hi: Just read your message. Thanks for the support. I need it. As we all do. Not too many place you can get it, when you have rls. I do have good days and bad days. But getting older, I'm 68, and have several health problems, our old bodies start going sour. And with rls legs on top of everything else makes it tough. But someone once said, "Old age isn't for sissys." Amen to that. It seems like the nights are so horrible, night times seems like hell. I hate to see night time come. I am able to lay down during the day and take a little nap. NOt always, but sometimes. Today looks better than last night when I wrote the message on the message board. That is when I probably will get on here and write LONG messages, during those long night times. I have even got on the computer and used it standing up because the rls won't let me sit down. Thanks again. I will be on here often but we are going to be away for about a month, so I'll get in touch when I get back. Good sleeping. You sound like a very positive person, and that is what you need to be with this condition, or any illness for that matter. Thanks, thanks, thanks. BETTY