Does anybody’s Reddness ever go away in the feet, hands mottled look ?
The redness is my feet and legs never goes away, even when I cool them sat with my feet on ice packs wrapped in a towel. My hands aren't always red they are nothing like as bad as my feet and legs.
Even though my EM primarily affects my knees, I'll throw in my response. My redness does go entirely away if i'm lying down for an extended period. For instance, it's usually not present when I first wake up and haven't stood upright out of bed. That was not always the case. When I first started with EM earlier this year, in late winter/early spring, I was in a perpetual flare loop and the redness never went away. They always looked red and/or mottled.
When I have to stand, my foot becomes an angry red, with dark blotches, and more painful. When lying in bed, or in a swimming pool with 80 degree water, the foot lightens up and looks almost normal, and the pain subsides to a more tolerable level. My doctors, who had not heard of EM, call my problem CRPS, or RSD, because it is mostly in one foot and leg. EM is supposed to present unilaterly. But I had no known injury start this, and warm water or bedding increases the redness and pain, so my symptoms are more like EM.
When I walk and especially when I stand in place, my feet get bright red and burn, particularly my right foot. The burning can go up the side of my right leg too. Both legs get mottled all the way up. Sometimes my feet look mottled too, even when I elevate them. My neurologist diagnosed me with EM even though my right side is worse.
Have you had your circulation checked? It's just that yours sounds exactly like mine and I have poor circulation. I have just had stents put in my left leg. It's called peripheral arterial disease and can cause EM. I first had a dopler test and they found I had no pedal pulses, then an ultra sound scan.
It sounds like mine, too, sheltielife. My knees often return to normal now if I am sitting or lying down. Particularly when I wake up from sleeping, they will look and appear normal. I can move around in bed and it doesn't reactivate. However, the moment I stand up and get out of bed the redness returns. They seem to bother me upon waking until I take an aspirin.
Mine used to be like that better sat, but now as the yeas have gone on it's there all the time, unless I sit with my feet on ice packs wrapped in a towel then they go OK. It's over six weeks since I went in hospital and no report yet so I didn't even know if they had done stents or just balloons. So, I paid to see the original vascular man who I liked a lot better last Thursday. He looked up and still no report! He did find the pictures of the angiogram and found it was only balloons, which don't last forever, plus he said my main arteries didn't look bad, it's more my veins and capillaries due to me having Cushing's Syndrome which damages them. My adrenal gland is now removed but too late. He also thought I might have small fibre nerve damage and is looking into lidocaine infusion to give me some relief from the pain.
I had my circulation checked this summer by my cardiologist, Sheltielife, and it was fine, no peripheral arterial disease. Beth br/>
Have you had your circulation checked? It’s just that yours sounds exactly like mine and I have poor circulation. I have just had stents put in my left leg. It’s called peripheral arterial disease and can cause EM. I first had a dopler test and they found I had no pedal pulses, then an ultra sound scan.
Mine used to never go away, too, sheltielife. That was prior to my phlebotomies. It's really difficult when it never goes away. I hope the lidocaine infusions provide you some relief. Mexiletine (which I take) is the oral analog of Lidocaine.
CarterDK It appears that Mexiletine was discontinued in the UK in 2008. I searched for it in various places couldn't find it and so I looked up NICE guidelines then I found this info. It didn't say why, probably cost. I am afraid the NHS is rapidly going downhill here, hence the reason I paid to see the vascular man. I was refused phlebotomies no reason given. However, for some strange reason my high red blood cell count is normal now. I still don't know the real cause of my EM. They won't do the skin biopsy to see if it's small fibre nerve damage due to my poor healing the reason my ulcers on my feet are taking a long time to heal. I also have rheumatoid arthritis so it could be that. I suppose it could be a variety of things. I just hope that I do eventually get the lidocaine infusions to relieve the pain.
I read that on Wikipedia. I think the reason it's not available is related to side-effects and not cost. Mexiletine is very cheap. It's an old drug used as an anti arrhythmic agent. Wikipedia says the following:
(Mexiletine) is now no longer freely available as a licensed product in either the US or the UK. It can be imported to the UK as an unlicensed, 'named-patient' drug. Its use in arrhythmias is restricted to use in life-threatening conditions only.
Being prescribed mexiletine for something like EM is considered an "off label" use. It's not approved for that purpose. There may be better, more safe, options for heart arrhythmias now, which could be why it has fallen out of favor. It is considered for use only in life-threatening arrhythmias because it can create fatal side effects in such individuals.
I don't think you can take mexiletine if you have heart disease or have previously had a heart attack or stroke. Even if it could be made available, a doctor might be reluctant to prescribe it to you because of your concomitant conditions.
So bad side effects is the reason, I just assumed it was cost. So, the infusion would be better I think, unless that carries the same side effects, which you might know the answer to?
After waiting more than 6 weeks today I got a letter from the vascular surgeon who did my angioplasty on the 9th October. He is making an urgent appointment to discuss the procedure he did. He hoped that it had helped the pain, but it hasn't. He does say that if it hasn't then he will look for further causes of the pain and problems I am experiencing. So he hasn't given up on me which is good news. As a lot of people find there hasn't been a single specialist that I have seen that has even heard of EM.
I'm not sure. I think the harmful side effects are only if you have an arrhythmia, but that is not clear. NIH (which is the US government's biomedical research facility) puts the following warning on the drug:
Antiarrhythmic drugs, similar to mexiletine, have been reported to increase the risk of death or heart attack, especially in people who have had a heart attack within the past 2 years. Mexiletine may increase the chance of having arrhythmias (irregular heartbeats) and has not been proven to help people without life-threatening arrhythmias to live longer. Mexiletine should be used only to treat people with life-threatening arrhythmias.
Talk to your doctor about the risks of taking mexiletine.
My doctor didn't mention any of that when he prescribed it. I haven't discussed it with him basically because the drug has worked so well for me. I don't have any choice. I have to take it. Without the drug my symptoms are disabling.
I would think the infusion would have similar pharmacological effects, but I don't know that for certain. There are reports in the medical literature of the 2 being used together in combination, with a Lidocaine infusion tried first and daily mexiletine therapy used to maintain improvement. The following is a case study of a 25 year old male with severe Primary Erythromelalgia. It's worth a read if you haven't already.
I hadn't read that before. I feel much the same as you in a way that it's worth a go as my life is more or less non existent as I am. My heart beat is regular so that's good, just fast. I currently am in a wheelchair even around my house and don't go anywhere other than hospital. So, thanks for the info it's given me some hope.
The individual in that case study I linked to had a very severe case of EM. His was about as bad as you can get. If that can turn around, anything is possible.
Yes, that's what gave me hope. Mine is pretty severe in that I have to sit with ice packs wrapped in a towel all day long and I have ulcers on my left foot. Part of the problem is that it's been going on for 10 years now and only in the last year or two have doctors been taking any notice of me, apart from doing a nerve test, which only showed as mild nerve damage, but the skin biopsy that the registrar suggested the specialist refused it saying it wasn't necessary. Had it not been for here I don't think that they would ever have considered it due to them never having heard of it.
I'm curious how yours started, since you said it's been going on for 10 years and only began having doctors take notice in the last 2. Was it initially mild and has gotten worse? What was the level of disability in the first few years?
Mine was immediately very disruptive. I was afraid of the night, afraid to go to sleep. I'd wake up with my knees on fire and have to race to the freezer to get ice. There was a frenetic pins and needles like sensation that accompanied the flares. I was completely terrorized. It wasn't something I could ignore.
It was mild at first, well when I say mild I mean compared to now! It started with burning painful red feet in the evening and overnight, plus first thing and then went better nothing at all the rest of the day. I reported it to my GP but he wasn't interested as during the day there was nothing to show and I had other things going on. So disability wise at first I wasn't affected, it was just the pain.
As I said other things going on more important so I suppose I didn't push it too much. Then there was my adrenal gland problem and my GP kept saying he would think about my feet problems after that was sorted out. By then I could walk with a walker. A year last May I had my adrenal gland removed at the same time my husband was diagnosed with terminal cancer. He passed away last November. It was only when he could see I needed the walker that he started even thinking about it. Over the 10 years it's just got worse gradually. I ended up having to use the wheelchair around March this year.
I hope this answers your question and you can understand what I have been going through.
Sheltielife, I am so sorry to hear of all you’ve been through, especially the loss of your husband. This month must have been very hard on you. Your strength gives me hope I can persevere, too.
Take care, Beth