Hi
Lately I've experienced waking up with hands and feet (in particular) that are not hot but somewhat stiff/tight - almost like a swollen feeling but they're not swollen.can get the bottom of the calves being a bit stiff and aches/throbbing for short periods...
Seems to be in the ankle joint mostly...
This usually comes and goes a bit but can clear in the morning. Today it carried through most of the day.
Just wondering if anyone else has this/experienced this?
Craig
Hi Craig, I have experienced this for a long time. I haven’t found any solutions, I thought maybe it was the fact that we keep the house a different temperature at night, but that wasn’t it. The only thing I found that helps a little is the Chillow pad I keep for my feet. Only problem is that it doesn’t stay Chillowed all night!
I would love to hear if anyone has found a better solution, thanks, Sue
HI,
I have this problem with my hands due to Chilblains and what I found works is moving them. A couple of the docs I saw told me I may even be able to regrow the veins and get more circulation by doing the following...I'll try to explain this...I open them really wide almost like stretching my fingers and then make a fist ...I continue to do this really quickly over and over again until my hands are fatigued then I stop, sometimes I stretch my forearm because it can get tight when doing this...when my hands are ready to go again, I do it again...I do this quite often during the day also...for the rest of your body, have you tried pilates or yoga? I know that helps anything that I wake up with go away!! Eve
I do get the stiff feeling sometimes when not flaring, I tend to rotate my ankle joints for a few minutes to relieve the symptom. Not sure if this is EM symptom or my MS.!
I have been waking up with stiff and painful hands that I can’t move at first. They feel as if they are broken. I force them to move little by little. After they have moved enough the pain and stiffness goes away and it’s like it never happened. This particular type of pain only happens when I sleep and has happened every night for the past 2 years. I find compression gloves while sleeping helps but it’s difficult to get my hands cool enough to keep them on. I always thought this has to do with my autoimmune but I have been on meds that have helped a,it of other autoimmune symptoms but I have no relief from this pain. I also ge the pain and stiffness on the back side of my ankle as I heard mentioned lower calf area. This can happen to me not jyst when sleeping but any time I sit too long. After walking around a bit it too just goes away. I have to think it has something to do with a circulation problem that may be related to EM. I noticed Oker state it can last through the day. Mine has always gone away after a certain amount of movement. I’m sorry. I wish I had more suggestions on how to help but you are defiantly not alone with this problem. Take care , Alina
My toes feel like this when I wake up. They feel swollen/stiff but look normal (well, as normal as they can). As soon as I lower my feet to the floor, however, I have an instant flare from gravity rushing blood to my feet. This "gravity flare" goes away after a few minutes of walking around, unlike flares that are triggered by heat/activity. I have milder (and less frequent) EM symptoms in my hands and face, and they look and feel completely normal when I wake up.
HI,
I am wondering if any of you have tried using a sauna or lymphatic massage? I learned how to do the lymphatic massage by getting a prescription from my doc to see a PT...it has made a huge difference for me if I do it daily. I also find that the sauna helps me significantly!
Eve
I am surprised you are able to endure the heat from the sauna… I wouldn’t dare out my feet through that amount of heat when slight temp changes causes em flares. Glad you’ve found something that works for you eve.! 
This was one of the first symptoms I had... before my toes started going red. My feet would feel very stiff in the morning, like they had been curled up in the same position all night long. It would last very long, but those first 10 steps were killer. Now it occasionally happens, but it's almost always in the morning when I wake up. it's interesting to know that others experience this as well.
I have something different than you I think...Childblains is kinda of an extension of Reynauds...Chilblains creates bumps that turn into sore on the fingers and toes from a combination of lack of circulation and cold/wet. The condition affects the hands and feet. I'm a very avid nordic skier, runner, biker, paddler and live in Duluth, MN where it is really cold. I love to ski so I have just found ways to deal with the condition. The activity actually keeps me healthier all the way around. The sauna is something that actually pulls toxins out...I have to keep a wet cloth on my feet when in there and one over my mouth, the rest of me gets the benefits!
I wake up to tingly tight feeling feet, too. I think they're hot, but they're only slightly warm. I also foll my ankles and wiggle my toes. Then, in plastice bags, soak them for a few minutes. It improves and though I still feel it, I can ignore it for an hour or two until the red and heat start up again. (They are elevated on the coffee table if I'm not up).
Ah so have you got chilblains as well as erythromelalgia..?! No wonder it confused me :)
slushsucks said:
I have something different than you I think...Childblains is kinda of an extension of Reynauds...Chilblains creates bumps that turn into sore on the fingers and toes from a combination of lack of circulation and cold/wet. The condition affects the hands and feet. I'm a very avid nordic skier, runner, biker, paddler and live in Duluth, MN where it is really cold. I love to ski so I have just found ways to deal with the condition. The activity actually keeps me healthier all the way around. The sauna is something that actually pulls toxins out...I have to keep a wet cloth on my feet when in there and one over my mouth, the rest of me gets the benefits!
The thought of going into a sauna makes me feel ILL !! ..... I can just manage a tepid shower with the window open wide
lauraflora1 said:
I am surprised you are able to endure the heat from the sauna... I wouldn't dare out my feet through that amount of heat when slight temp changes causes em flares. Glad you've found something that works for you eve.! :)
I only have the Chilblains, somehow I got put into this group with having Chilblains...
No worries, were you recommended to this group. I don’t know much about chilblains but maybe some symptoms are similar so that’s why you joined. You are welcome here for friendship and support regardless just hope people will be able to answer any questions you have. Maybe you could start a discussion to see if anybody else has clilblains and if they did then did they then go onto having EM…? Laura
I was just looking online for a Chilblains group and this is what I was directed to...I don't know anything about EM but it doesn't sound fun! I do wonder if anyone has tried Lymphatic massage...that has really worked for me...it is supposed to work for autoimmune stuff...
thanks
Eve
Hi Slushsucks. I get Pernio in my feet. I think that is the same thing as chilblains. I also get raynaud’s,levido reticularis and EM. They say it is some sort of neuro vascular instability. When my feet get pernio they go completely numb from about the arch of my feet up through my toes. It doesn’t seem that anything will warm them.2 pairs of socks and slippers under covers? No still numb! I have to be carefull because I also get EM so I try not to warm my feet too quickly because it usually leads to an EM flair. I have spoken with a lady here that does get weekly lymphatic massage. She says it helps her sever Edema she gets quite a bit. The lymphatic massage lessens your episodes of Chiliblains ? I should definitely look into that. Thank you so much for sharing! Take care,
Alina
Hi Guys,
the ankle pain- calves tightness etc... seems to be one of the ensuing side effects of long term flaring( e.g. swelling-vasodilation-constriction ), and seemingly causes shortening of connective tissue ie: tendons, and muscle. Looks as if lymphatic fluid also may seep into soft tissue due to flow blockage . I have these problema and have been having lymphatic drainage for 3 months now - will be posting my findings and any research links in few weeks. Just quickly- for slushsucks - the massages or butterfly touch manipulation( can hardly perceive touches!), is definitely helping with chronic swelling - edema . As it helps with circulation per se- should theoretically help chilblains.Another therapy is myofascia release- its dreadfully painful - but if you can stand it , it does help with flexibility of fascia - ie: connective tissue. Very expensive too!
God bless
mads
I am relieved to see talk of chilblains!
My EM started in the first place with chilblains. 3 Winters ago, my toes got painfully cold one evening, and when I got home, I put them in front of a little space heater. A few hours later, I started noticing little tender, itchy spots (which I at first thought were some kind of insect bites, until I noticed their symmetry between my feet).
Soon (maybe next day, maybe a few days later - don't remember) the itchy redness, now hot and swollen, covered the entirety of my toes. I believe this was the beginning of my EM. This initial itchy flare was constant - unrelenting for 2 weeks, before settling into the heat/activity-triggered episodic (non-itchy, just hot/tingly) flaring I have had ever since.
Now, I have gotten chilblains each winter that I have spent in a cold climate ever since (just getting over a batch of them now). I'm one of the folks who seems to have Raynaud's and EM both, so I probably let my toes get too chilly sometimes when I go out in normal shoes instead of warm boots to try to keep a medium temp.
So far I've been "lucky" it sounds like to be at the Reynaud's and Chilblains ...I sure hope it stays there! A PT can teach you the lymphatic massage...the only time it has not worked was when I was under a stressful situation...or if my body suffered stress...last year I got a concussion and had the flare of a lifetime! I found I have to do it daily for it to work.
I keep the heat pack people in business...as a nordic skier in Duluth, MN I'm out in the cold constantly. I use toe heaters, boot covers and electric socks at times! People like to say...keep your core warm...well for me ..I'm always warm but when the fingers and toes lack circulation the core does nothing! Have any of you had any loss of feeling in the fingers for an extended period? I had some just at the tip of one last year and luckily it came back. For my hands, I always wear a thick triple fleece mitten and normally use two hand warmers, one in the thumb and one in the finger part. I also put a wind mitten on top. I teach winter dressing and coach winter sports so I kinda have to know what to do. Have any of you tried a heated mitten or insole?