During the summer, I struggled with my red feet and also achy legs. Now, in Buffalo, the heat is not quite an issue for me (it was 12 below this morning - ugh!) I am not getting the redness very often, but any time I lay down for more than a half hour, my legs ache terribly. I am waking up around 2:00 and again about every hour till morning. When I stand, my feet are almost numb and it takes a minute to go away. After that, my feet are fine and legs are ok. If I am on my feet for an extended period of time, my nights are much worse. My doctors are useless, so I am hoping that maybe someone will have an idea of how to deal with this. I am so tired and can't wait to go to bed, but dread the pain during the night. Any suggestions, or does anyone else have this problem?
Hello Tired.
I don't have the ache in my legs but I do get sleeping specific pain. In the last 5 years all but 1 year I have had the most awful pain in my hands only when sleeping. I wake in pain and they won't move. They are usually king of in a fist when I wake and I can't open them. It isn't just how painful it is that stops my from being able to open them they simply won't respond and move . I try and try and it hurts so bad then after a minute or two it slowly starts to move and it is like I have to work them little by little before they will move like normal again. After I can move them normal again the pain goes away.
This has been in my hands for years but in the last few months I am getting the same thing in the back of my feet/ ankles.
I am used to not getting sleep now, I normally take a nap. or two during the day. If my naps are shorter one hour or so I don't get that pain. My pain kicks in after sleeping longer and it sounds as if yours may too.
I hope you are able to get better sleep soon.
I get achy calves a lot and find a magnesium supplement makes a HUGE difference. Good luck!
I get the same kind of pains that Alina has described and it depends on the doctor for the diagnosis. Some just ignore it. The neurologist that diagnosed my EM, after some tests, ascribed the pain to small nerve fiber damage (SNF) in my hands and legs. The test only tests small nerve fiber damage and I have a lot of damage in my hands and feet. She also said that some of the pain is due to restless leg syndrome as a result of the SNF damage. Lyrica helped for several months and not so much now. She is weaning my off Lyrica and that has been...difficult. Requip (sp) is the next option. She has me on Tegretol for the EM which has some success but only in the winter. I try to stretch before I go to bed and as soon as my body will allow it when I get up. Not sure how much it helps but I am losing my hands and feet mobility to the pain, etc.. if I don't.
Blessings, Don
Alina Delp said:
Hello Tired.
I don't have the ache in my legs but I do get sleeping specific pain. In the last 5 years all but 1 year I have had the most awful pain in my hands only when sleeping. I wake in pain and they won't move. They are usually king of in a fist when I wake and I can't open them. It isn't just how painful it is that stops my from being able to open them they simply won't respond and move . I try and try and it hurts so bad then after a minute or two it slowly starts to move and it is like I have to work them little by little before they will move like normal again. After I can move them normal again the pain goes away.
This has been in my hands for years but in the last few months I am getting the same thing in the back of my feet/ ankles.
I am used to not getting sleep now, I normally take a nap. or two during the day. If my naps are shorter one hour or so I don't get that pain. My pain kicks in after sleeping longer and it sounds as if yours may too.
I hope you are able to get better sleep soon.
Hi Tired,
Since you mention that moving around eased your symptoms, maybe passive movement during your sleep can ease them.
There are mattresses designed to prevent the formation of ulcers, I think that by inflating and deflating different areas of the mattress cyclically; that should make one move a bit in bed, could that be of help?
Hi Tired,
My best evening routine goes like this: I fall asleep on the sofa for a few hours, and then wake up with my legs and feet hurting. I then sit up (usually on the computer) with a cooling rice/bean bag on my feet for about a half an hour until they've cooled down. Then I go to bed, putting my feet on another cooling bag. I have a bar on the end of my bed, which keeps the covers from touching my legs and feet, and that helps. I also take a small amount of Klonopin (.25 mg) twice daily for anxiety, and it also works for restless legs. And I also take a 5/325 Percocet before I go to bed. I realize this is not optimal, but I do get two stretches (3 to 4 hours) of relatively good sleep. Night is also my worst time, so I hope this helps you a little bit.
I also have sleeping problems but blamed them on a lose of my husband after a year long fight with cancer. Since reading this discussion I now feel it could be from achy legs and red burning feet. I have found that if I slather my feet with scent free Jergins lotion (by slather I mean I put a good amount of lotion on my feet and do not rub it in, just leave the extra amount on my feet). I also sleep with my feet out of the covers and I have considered getting a bar to hold the covers up. I have an a sleep ease air mattress. I keep a bottle of Gatorade by my bed and when my legs start aching I drink a good half a bottle. Within minuets the aching stops. I take Gabapentin 300mg in the morning and 900mg at night. I have found if I take the Gabapentin around 8PM I can go to bed between 10 and 11 PM and get to sleep quite easy. Than I am awake any time after 1AM. I don't know if Gatorade will help but I feel any thing is worth a try. I drink the lemon-lime Gatorade.
Thanks to all for your responses and suggestions. There are a lot of different things to try. I can start on some of the easier suggestions right away. I do go to the doctor on the 28th to discuss other options. Maybe it would be a good idea to take my laptop to the doctor and let her see all of your experiences to see if maybe she can connect the dots. I have to be careful of medication since I am on Provigil for my narcolesy. The side effects of that medication have me on a blood pressure medication (amlodypine besylate which is better for the EM than some of the others) and I have trouble sleeping also as a side effect so am taking Klonopin. I have tried many of the other medications that have been talked about but have had bad side effects so this seems to be the best cocktail at this point. I have unsuccessfully tried Requip and Gabapentin with terrible side effects. There is an over the counter medication called Restful Legs which is homeopathic and does help the RLS quite a bit. I also keep the sheets and blankets off my feet as much as possible but am interested in the bar for the blankets. Where do you get one? I also am thinking that the stress of the pain at night may be causing hot flashes which in turn aggravate the EM. Anyway, thanks for the input. I will get started on these suggestions and see where it takes me. I do appreciate you taking the time to tell me your stories and it's comforting to know that I don't suffer alone.
Tired
Dominique said:
I get achy calves a lot and find a magnesium supplement makes a HUGE difference. Good luck!
I'll second Dominique's advice. I was advised to take magnesium but not magnesium oxide (evidently it isn't absorbed as completely), so I get "chelated magnesium." If I skip or even decrease the dosage, I have bad cramps in my legs again. But I know cramps may not be quite what Tired is having.
You are the first person Daza that I have heard of with my specific sleeping pain. I am up now 3 am because of it. It may only hurt for a minute or two but the pain is so awful it’s often difficult to get back to sleep. May I ask Daza if you have any other condition other than EM? Do you know what causes this in you ?
I hope you,tired and the whole bunch of us are able to get some sleep tonight.
dazsa said:
I get the same kind of pains that Alina has described and it depends on the doctor for the diagnosis. Some just ignore it. The neurologist that diagnosed my EM, after some tests, ascribed the pain to small nerve fiber damage (SNF) in my hands and legs. The test only tests small nerve fiber damage and I have a lot of damage in my hands and feet. She also said that some of the pain is due to restless leg syndrome as a result of the SNF damage. Lyrica helped for several months and not so much now. She is weaning my off Lyrica and that has been…difficult. Requip (sp) is the next option. She has me on Tegretol for the EM which has some success but only in the winter. I try to stretch before I go to bed and as soon as my body will allow it when I get up. Not sure how much it helps but I am losing my hands and feet mobility to the pain, etc… if I don’t.Blessings, Don
Alina Delp said:Hello Tired.
I don’t have the ache in my legs but I do get sleeping specific pain. In the last 5 years all but 1 year I have had the most awful pain in my hands only when sleeping. I wake in pain and they won’t move. They are usually king of in a fist when I wake and I can’t open them. It isn’t just how painful it is that stops my from being able to open them they simply won’t respond and move . I try and try and it hurts so bad then after a minute or two it slowly starts to move and it is like I have to work them little by little before they will move like normal again. After I can move them normal again the pain goes away.
This has been in my hands for years but in the last few months I am getting the same thing in the back of my feet/ ankles.
I am used to not getting sleep now, I normally take a nap. or two during the day. If my naps are shorter one hour or so I don’t get that pain. My pain kicks in after sleeping longer and it sounds as if yours may too.
I hope you are able to get better sleep soon.
Hi,
I just did magnesium pidolate (nearly 300 mg of elemental magnesium a day in two doses) for 2 days. I don't usually have pain but magnesium can act as a vasodilator and it seems to have done just that: my feet swelled and I started having intense throbbing pain for 3 days when getting up, milder during the day. This morning the pain was finally gone and the swelling has decreased, so I'm very happy that I stopped the Mg. Everyone is different and some benefit from taking magnesium, others not so much.
Good luck!
Alina, I have the SFN and EM, but some other doctors simply say it is arthritis. I do not think they are correct. One thought it was "trigger finger" but it does not explain my feet. Another (I have been to too many doctors) said it was fibromyalgia (also debunked by my current neurologist). My pain in the morning is debilitating and excruciating for about ten minutes. I feel the aftereffects throughout the day and worse if I sit for very long. But during the night and in the morning are horrible. Of course, combine that with the EM flares and it is a challenge. I am no longer able to work. I was in a car accident over Christmas and I will have to have shoulder surgery...sigh.
Do you have other conditions, if you don't mind me asking.
Don
Alina Delp said:
You are the first person Daza that I have heard of with my specific sleeping pain. I am up now 3 am because of it. It may only hurt for a minute or two but the pain is so awful it's often difficult to get back to sleep. May I ask Daza if you have any other condition other than EM? Do you know what causes this in you ?
I hope you,tired and the whole bunch of us are able to get some sleep tonight.
dazsa said:
I get the same kind of pains that Alina has described and it depends on the doctor for the diagnosis. Some just ignore it. The neurologist that diagnosed my EM, after some tests, ascribed the pain to small nerve fiber damage (SNF) in my hands and legs. The test only tests small nerve fiber damage and I have a lot of damage in my hands and feet. She also said that some of the pain is due to restless leg syndrome as a result of the SNF damage. Lyrica helped for several months and not so much now. She is weaning my off Lyrica and that has been...difficult. Requip (sp) is the next option. She has me on Tegretol for the EM which has some success but only in the winter. I try to stretch before I go to bed and as soon as my body will allow it when I get up. Not sure how much it helps but I am losing my hands and feet mobility to the pain, etc.. if I don't.Blessings, Don
Alina Delp said:Hello Tired.
I don't have the ache in my legs but I do get sleeping specific pain. In the last 5 years all but 1 year I have had the most awful pain in my hands only when sleeping. I wake in pain and they won't move. They are usually king of in a fist when I wake and I can't open them. It isn't just how painful it is that stops my from being able to open them they simply won't respond and move . I try and try and it hurts so bad then after a minute or two it slowly starts to move and it is like I have to work them little by little before they will move like normal again. After I can move them normal again the pain goes away.
This has been in my hands for years but in the last few months I am getting the same thing in the back of my feet/ ankles.
I am used to not getting sleep now, I normally take a nap. or two during the day. If my naps are shorter one hour or so I don't get that pain. My pain kicks in after sleeping longer and it sounds as if yours may too.
I hope you are able to get better sleep soon.