Hello. I was wondering if anyone else has had this happen and if so what were you able to do to help? For a little over a week my feet have been frozen to the bone no matter what I do aside from standing too long or walking too much which just causes burning. I have tried wearing socks and slippers and wrapping my feet in blankets but they are painfully frozen.
Just the balls of my feet and toes are frozen but from the arch of the foot back I still have the typical EM. Even though my toes are freezing the toes sweat profusely soaking the ball of the foot area of the sock but the arch and heel that are hot have no sweat and are bone dry. Every night in the middle of the night the entire foot starts burning including my toes and I have to take them out of my covers and socks and slippers to ease the burning. Finally I am able to sleep a few hours and when I wake up they are frozen again and the cycle starts over.
I have developed extremely painful swollen toes even when cold. I can't even walk anymore because I have to lift the swollen toes up from contacting the floor. I am in pain every day as I am sure most of you are but this is getting to be too much even for someone used to chronic pain.
I don't know what to do. If I take more measures to warm the toes I have terrible EM . If I don't I develop these painful sores on my toes.
Raynaud's and erythromelalgia together sounds so painful, Alina. I took a look at the literature -- sometimes if EM is being treated with SSRIs, it can bring on the Raynaud's. On the other hand, sometimes SSRIs can be helpful -- it's an individual thing. Please contact your doctor and see what may be tried for combined Raynaud's/EM. I hope this awful combination of symptoms passes soon.
Thank you so much for your reply. I broke down and made an appointment and they got me in today. I am in the waiting room now. I don’t know what can be done if anything but I’ll find out soon. I will be sure to post what I find out.
Thanks again dancermom.
Take care
Alina
I just got out of the doctors office. He said he can't tell for sure but it could be ischemia . He says I need vascular studies to determine if it is. As my doctor saw my feet are purple when not burning so my circulation is poor. I already knew that much after my last 2 DVTs and am now on Coumadin. He just said keep them warm! HA! Funny thing my feet are so bad I do try to keep them warm to prevent the painful sores. As much as I try they will not warm during the day but they warm up fine and burn all night! I am now just waiting for vascular studies and keeping an eye out for ulceration needing emergent treatment.
Raynaud's is episodic ischemia -- didn't he mention Raynaud's?
The other things I read about combined EM and Raynaud's are that Lyme Disease can sometimes cause that, or it could be a forwarning of limited systemic scleroderma. Or neither. No absolute guidelines with EM, I guess.
I'm sorry your feet have turned into a torture machine. I hope they settle down soon, Alina!
Do you think those sores might be chilblains? Are they tender swellings that stay painful for 1-4 weeks? Mine start off bright red then slowly turn purple.
Chilblains happen when extremities warm up too fast after being very cold, and I think that going from Raynaud's to a bad EM flare can cause them (usually it happens to people who get too cold, then put their toes in front of a heater).
I have deduced that showers are what cause most of my chilblains (since showers cause a very sudden EM flare). I only get chilblains in winter (when my toes are icy cold in between EM flares). Hope this helps!
Alina, since I just joined this group, I am only now reading your post. I have no suggestions, and I hope it's ok on this site to just offer my sincere sympathy for your baffling symptoms. How aweful. Reading what you are going through makes my symptoms seem inconsequential. Are you on any meds at all for your symptoms?? ~Marie
Of course it's ok and very much welcomed that you offer sincere sympathy for symptoms you may not be experiencing Wearsahat. It is always good news to hear that others aren't having to go through the same thing. It's encouraging knowing it can be better. Thank you for being so thoughtful.
I have tried without success a few different meds and I am still trying. Before they knew I had EM they thought I was allergic and I was put on a concoction of 3 different antihistamines . After EM diagnosis I tried Gabapenton ,Lyrica, a few different auto immune meds including prednisone and a couple more I can't remember at the moment. I just started aspirin this week but it hasn't made a difference yet. To my understanding if it is going to work it works right away so I don't think it will help. I am also on Coumadin for recurring DVT's so I shouldn't stay on it for too long. I just wanted to see if it would help.
I am going to try lidocaine infusions soon I hope. My doctors think it could help but it takes some time to get it set up.
It is just a game of trial and error when it comes to what helps each one of us.
Take care,
Alina
P.S please Marie... your symptoms are not inconsequential. Even the mildest case of EM is nothing I would wish on anyone.
Alina, yes, I have learned that the treatment process certainly is a game of trial and error. I hope they come up with something soon which will have some desired relief for your symptoms. It's amazing how many variables there are to EM. Only just today in my research did I come across the reference to EM symptoms in the scalp. I can't tell you what a relief it is to me to know that the scalp symptoms are also connected to EM -- I was presuming that to be related, but to see it in black and white is so validating. Best of luck to you!!!! ~Marie
Alina Delp said:
Of course it's ok and very much welcomed that you offer sincere sympathy for symptoms you may not be experiencing Wearsahat. It is always good news to hear that others aren't having to go through the same thing. It's encouraging knowing it can be better. Thank you for being so thoughtful.
I have tried without success a few different meds and I am still trying. Before they knew I had EM they thought I was allergic and I was put on a concoction of 3 different antihistamines . After EM diagnosis I tried Gabapenton ,Lyrica, a few different auto immune meds including prednisone and a couple more I can't remember at the moment. I just started aspirin this week but it hasn't made a difference yet. To my understanding if it is going to work it works right away so I don't think it will help. I am also on Coumadin for recurring DVT's so I shouldn't stay on it for too long. I just wanted to see if it would help.
I am going to try lidocaine infusions soon I hope. My doctors think it could help but it takes some time to get it set up.
It is just a game of trial and error when it comes to what helps each one of us.
Take care,
Alina
P.S please Marie... your symptoms are not inconsequential. Even the mildest case of EM is nothing I would wish on anyone.
This really is a terrible syndrome. Raynaulds does tend to coexist with EM. Especially severe or systemtic cases of EM.
Really a case of damned if you do, damned if you dont. These two are bipolar opposites linked by the same damaged thermoregulatory response and triggers such as stress. Both are intolerable. I agree with our resident physio miss Tizzy re: swimming pool and flexing to act as calf pump. Going to put this as a discussion guys. See if we get any helpful ideas on better management of co existing EM and Ray.
THank you Tizzy for the wonderful suggestions! I wrote in your yoga post about how I have started in the pool and it feels great! My sores are all cleared up at this time but it did take a good month of barely being able to walk. The massage and ankle movements help when walking isn't much of an option.
Thank you Mads. I posted on your discussion on EM and Ray with the best advise I have to offer. Thank you for getting that started. It is definitely something I think a lot of us can use a few tips on.
Take care,
Alina
Tizzy said:
Can you try gentle massage of feet with some sort of cream? Can you try to bend toes up and down and massage under the balls of your feet as even that kind of manual manipulation helps circulation.Keeping doing foot and ankle exercises in sitting when your feet are elevated is great as moving feet up and down activates the calf pump. Trust a physio to never let anyone rest,in the midst of my most difficult times I have had friends who insist on making me move. Even tiny bits help. The pool is fantastic as walking in water is good for circulatory return. As you walk the greatest water pressure is at your ankles and decreases at knees etc- like compression stockings ,but better,and reduces swelling like nothing else. Water temp of pool has to feel slightly cool so the rest of you doesn't flare ,while your feet should get a workout.
My toes get icy if I don't move them- really white,but vascular studies are fine,don't know how ? My fingers tend to do the same.At one stage I tried propanalol and that was a disaster ,should have taken a photo for medical journal - forefoot white as marble and almost at a neat junction from middle of foot to heel swollen huge bright red. Looked like two mismatched feet joined to make Frankenfoot.
I know the keep moving , even in sitting can be difficult but a patient in hospital is never left still for long as that brings its own problems. Long term intubated patients have regular passive movement sessions to keep range/circulation and spinal patients are tilt tabled for circulation and autonomic function . So to all that read this please wriggle ,stand as much as you can - its not a sexy topic like SCB ,but it is so important.
Sorry , kind of ran away with enthusiasm - metaphorically,of course ! Hope you can do some bits for your toes,to get the blood flowing. I have been seen in my recliner with liner socks perched over my toes. have you tried Effexor at all ? Tizzy
Just curious, have you had what's called a QSART test done?? It's an autonomic nervous system test. I have the same symptoms sometimes & through this test is how my small fiber neuropathy was diagnosed prior to my EM diagnosis.
I just spotted what you said about taking propranolol Tizzy. Ever since my big operation I have been taking Bisoprolol and if I don’t keep moving I am all day freezing, until going into sudden and really bad flares so that I am tearing shoes and socks off, no easy matter when my right leg still has very little flex and getting shoes on and off is a pantomime. Then I am back to freezing. There is nothing in between. . Do all beta blockers have this effect on people with Raynauds do you think? I have overdone it today and am on the bed now, freezing down to my ankles and with wildly flaring feet which burn from the inside and chill from the outside.
I have started swimming again but the leg won’t let me go more often than two or three times a week as it swells up so when I exercise. It’s all so frustrating.
Alina Delp said:
THank you Tizzy for the wonderful suggestions! I wrote in your yoga post about how I have started in the pool and it feels great! My sores are all cleared up at this time but it did take a good month of barely being able to walk. The massage and ankle movements help when walking isn’t much of an option.
Thank you Mads. I posted on your discussion on EM and Ray with the best advise I have to offer. Thank you for getting that started. It is definitely something I think a lot of us can use a few tips on.
Take care,
Alina
Tizzy said:
Can you try gentle massage of feet with some sort of cream? Can you try to bend toes up and down and massage under the balls of your feet as even that kind of manual manipulation helps circulation.Keeping doing foot and ankle exercises in sitting when your feet are elevated is great as moving feet up and down activates the calf pump. Trust a physio to never let anyone rest,in the midst of my most difficult times I have had friends who insist on making me move. Even tiny bits help. The pool is fantastic as walking in water is good for circulatory return. As you walk the greatest water pressure is at your ankles and decreases at knees etc- like compression stockings ,but better,and reduces swelling like nothing else. Water temp of pool has to feel slightly cool so the rest of you doesn’t flare ,while your feet should get a workout.
My toes get icy if I don’t move them- really white,but vascular studies are fine,don’t know how ? My fingers tend to do the same.At one stage I tried propanalol and that was a disaster ,should have taken a photo for medical journal - forefoot white as marble and almost at a neat junction from middle of foot to heel swollen huge bright red. Looked like two mismatched feet joined to make Frankenfoot.
I know the keep moving , even in sitting can be difficult but a patient in hospital is never left still for long as that brings its own problems. Long term intubated patients have regular passive movement sessions to keep range/circulation and spinal patients are tilt tabled for circulation and autonomic function . So to all that read this please wriggle ,stand as much as you can - its not a sexy topic like SCB ,but it is so important.
Sorry , kind of ran away with enthusiasm - metaphorically,of course ! Hope you can do some bits for your toes,to get the blood flowing. I have been seen in my recliner with liner socks perched over my toes. have you tried Effexor at all ? Tizzy
I'm new to this, but where I'm at right now, I can't even tolerate socks touching my feet! :( Before I was given Nifedipine (NEVER TAKING THAT AGAIN!!!) I had the frozen toes that hurt like there was no tomorrow, so I put socks on and like you, the EM just went into overdrive and I was out of my mind with pain.. :(
I had sores popping up on my toes, too, so I had to take the socks off.. It was a happy accident that one of the nurses treating me in the hospital figured out that heat hurt me, so maybe ice would help me.. It was the ONLY thing that brought the pain down to a 5 on the pain scale..
Are they giving you anything for the pain? I'm on 800 mg's Neurontin 3 times daily and it seems to help take it down a notch or 2.. I understand what you mean about this pain being too much; it's horrible! :( I truly hope you can find relief from it..
Wishing you a less painful, or better yet, pain free day!
It was done a few years ago. They did a tilt table test and a sweat test as well as some sort of sensation test with heat , cold, and vibration. My tilt table test was normal and my sweat test showed patchy areas where I wasn't sweating and the sensation test showed some abnormities but it was chalked up as inconclusive. They told me it was possible there could be some sort of small fiber neuropathy but the results were not enough for a diagnosis.
My neurological symptoms seem to come and go and my neurologist said that isn't possible and she doesn't see how she can help me. I have had 2 different nerve conduction studies from three different doctors and they all came out different! One said I had carpel tunnel tunnel in both arms ( this is when I was more symptomatic and they only did my arms)
That neurologist just wrote off my other non arm related symptoms as crazy and told me to sleep with braces on my wrist. The next doctor did my hands and feet. She said my hands/ arms were normal ( I wasn't symptomatic in arms at the time) She said there was possible small fiber neuropathy in my feet but not conclusive enough for diagnosis. I told her about my past positive test in arms and she just said it is impossible to be intermittent and that obviously the last doctor was mistaken! she pretty much wrote me off too.
I have been waiting to see a new neurologist until I have more significant neurological issues because if they are mild at the time I can't burn through another one. There are just not enough Neurologists in the area to be turned away again. My neurological symptoms come and go and in varying degrees so I am just waiting. I am sure they will be back.
May I asked what showed up on your test that led them to your diagnosis?
I am sorry you are having this problem as well SAB.
It can be so frustrating when what helps the one it hurts the other ! I am currently on morphine for pain but it only helps so much and certainly not enough. My burning hurts more than the cold problems but the cold problems are more of what I would call uncomfortable. When I say uncomfortable it's not doing it justice. I mean a deep down discomfort that stops sleep from coming and makes me squirm. Maybe uncomfortable is the wrong word but it's not like the pain of burning. I don't know how to explain it. I almost but not quite welcome the burning because that gets rid of the uncomfortable freezing!
I am glad your meds have helped to some degree. Like I have said mine helps just not enough to keep me sane!
Take care,
Alina
SAB said:
I'm new to this, but where I'm at right now, I can't even tolerate socks touching my feet! :( Before I was given Nifedipine (NEVER TAKING THAT AGAIN!!!) I had the frozen toes that hurt like there was no tomorrow, so I put socks on and like you, the EM just went into overdrive and I was out of my mind with pain.. :(
I had sores popping up on my toes, too, so I had to take the socks off.. It was a happy accident that one of the nurses treating me in the hospital figured out that heat hurt me, so maybe ice would help me.. It was the ONLY thing that brought the pain down to a 5 on the pain scale..
Are they giving you anything for the pain? I'm on 800 mg's Neurontin 3 times daily and it seems to help take it down a notch or 2.. I understand what you mean about this pain being too much; it's horrible! :( I truly hope you can find relief from it..
Wishing you a less painful, or better yet, pain free day!
Do you approach bedtime with a kind of dread? It’s 10pm and I am drop down tired but night time is so fraught that I hate the thought of it. Last night was freezing and so I hardly slept but my feet cooked as usual. What I would give for a good night’s sleep…
Yes Nel. I dread night time too. I think most of us do. Even if I manage to have an OK day when night comes all bets are off! I can only dream about getting a good nights sleep! Ha! I hope you are able to get some sort of rest.
Good night Alina. I have been fiddling around for hours putting off the inevitable. The baby’s a bit poorly so I wanted to see him go down for a few hours, then I raided the freeer for icecream as a nice day left the house too hot. Which made me crave a piece of bread and cheese and then there were emails to check out. Now is the hour of my discontent…
I think you are a long way behind us so have a lovely rest of the day
Nel
I think I know what you mean: it felt like my toes were so swollen they would explode at any minute, and I was not beyond wishing they would, just to relieve the pain.. Moving my toes was a new adventure in burning pins and needles.. I spent 12 days in the hospital while they tested, poked and prodded me every which way from Sunday.. Every time I'd get up, they tell me to get off my feet; to be honest, they looked pretty gnarly, but I couldn't take sitting in that bed..
I wish I could take morphine, but I am allergic.. I hallucinate with it, so I guess it could *almost* be funny to see what my mind would concoct as my torturer if I did take it. ;) I was put on Toradol and Percocet, and Lidocaine patches; I had my doubts about the patches, but I grew to like them.. My toes still tingle when I wiggle them, and just the sensation of the blanket touching my feet bothers.. Is this how this always goes? I *think* this flare is subsiding, but I don't know: I don't recall ever having something like this before..
I was tried on propranolol as well and had a bad reaction to it: apparently I held a 10 minute conversation with a CNA that I do not recall at all.. I swear; I'm so sensitive to medications that all I need do is hear the name to have a reaction.. >.< It's nuts! I try to find something, anything, that can be remotely considered funny about this, so I won't be so scared, or angry, but I'm sorely lacking this time..
I also have more problem with the burning than the cold: I'd PREFER it they were cold because it would be much easier to take.. That burning crud is for the birds.. I see we're all "night owls" from this: I'm actually kind of dreading going to bed, and I know I should as it's 1 am here.. Ah well, I've put it off long enough, I guess.. Tomorrow, I begin my search for the "perfect" cooling cream for my feet: We tried Capsaicin cream when I was in the hospital, but it was a no go for me..
Night all.. Pleasant dreams..
S.
Alina Delp said:
I am sorry you are having this problem as well SAB.
It can be so frustrating when what helps the one it hurts the other ! I am currently on morphine for pain but it only helps so much and certainly not enough. My burning hurts more than the cold problems but the cold problems are more of what I would call uncomfortable. When I say uncomfortable it's not doing it justice. I mean a deep down discomfort that stops sleep from coming and makes me squirm. Maybe uncomfortable is the wrong word but it's not like the pain of burning. I don't know how to explain it. I almost but not quite welcome the burning because that gets rid of the uncomfortable freezing!
I am glad your meds have helped to some degree. Like I have said mine helps just not enough to keep me sane!
Take care,
Alina
SAB said:
I'm new to this, but where I'm at right now, I can't even tolerate socks touching my feet! :( Before I was given Nifedipine (NEVER TAKING THAT AGAIN!!!) I had the frozen toes that hurt like there was no tomorrow, so I put socks on and like you, the EM just went into overdrive and I was out of my mind with pain.. :(
I had sores popping up on my toes, too, so I had to take the socks off.. It was a happy accident that one of the nurses treating me in the hospital figured out that heat hurt me, so maybe ice would help me.. It was the ONLY thing that brought the pain down to a 5 on the pain scale..
Are they giving you anything for the pain? I'm on 800 mg's Neurontin 3 times daily and it seems to help take it down a notch or 2.. I understand what you mean about this pain being too much; it's horrible! :( I truly hope you can find relief from it..
Wishing you a less painful, or better yet, pain free day!