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Are there any patients with erythromelalgia? Have you been successfully treated at Mayo?
The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening… and I would like to hear from others with this malady of Erythromelalgia.
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Hi @hotfooted, I add my welcome. As @johnbishop recommended, I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases group so that you can meet others like @katelynntiff @summershaddow @txbren @jcmoffatt.
You may also be interested in this discussion
– Burning Feet syndrome https://connect.mayoclinic.org/discussion/burning-feet-syndrome/
Hotfooted, have you had any treatment or seen a specialist?
Thank you for moving my post to autoimmune issues.. As for diagnosis of Erythromelalgia, I had talked with my doctor about the problem, but until I had an actual big red flare in his office I don't think it was taken seriously.. Now he has a picture of my feet in a file and it's listed as another of my health issues. As for treatment, I was already on Cymbalta for depression and have been on antidepressants for years and was also taking Magnesium for constipation. Then we added Gabapentin and it seemed to help my burning feet in the beginning. But a couple of months ago I started itching all over so badly, so I did what I normally do and went on a search for the cause of that. Finally discovered that itching was sometimes a side effect of taking Gabapentin and Magnesium together. So I stopped both. I have lost weight, almost 10 lbs now and am unable to eat more than a few bites of food every few hours, altho when hunger hits me I MUST eat something fast. Just feel that urgent need and start to feel shaky. I am tired and weak and in neuropathic pain up through my thighs now. My husband would like to have his wife back and I don't blame him..
The erythromelalgia started April 24,2018. It is absolutely stopping everything I am able to do, even walking inside, because of the burning heat & pain. I am searching for new medicine, on Gabapentin now and it does nothing, and researching for a successful treatment!
@txbren It seems you and I have been trying the same treatments and searching for answers. Yes, this has definitely changed our lives, hasn't it! I carefully calculate how long I'll have to stand up before starting anything and expect you do the same. And I'm very careful about what I eat.. leaving out almost all sugar except for some fruit. Mangos seem to satisfy my sweet tooth best.
No, I haven't seen a specialist.. but have discussed my problems with my osteopath. He prescribed gabapentin for me, but I developed bad itching and had to stop that med. Now I'm only taking Cymbalta and Lisinopril. Cool my feet by spraying with cool water in shower mostly. For some reason I have been losing weight over the past couple of months and that may have helped some, too. The neuropathy has moved up my legs, past my knees and up to my groin. I am depressed more, and frightened..
@hotfooted Hae you sen a specialist yet?I think its in you best ibtrest to see a sugestion of a endocinologist or neurologist Let us know how your doing ter seing. Dr
Hi @hotfooted, I'm not sure if it's an option for you but Mayo Clinic Rochester has an Erythromelalgia Clinic that may be able help you.
Erythromelalgia Clinic in Minnesota
In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo Clinic – Jacksonville. It was a relief because my Rheumatologist in Chicago had misdiagnosed me. Since then, I relocated to Jacksonville area and continue to follow up with my Rheumatologist at Mayo. I’ve also been diagnosed with Fibromyalgia (FM) and Ocular Migraines subsequently. The past year has been full of emotions and chronic pain. EM and FM have been tough, especially trying to figure out personal triggers, and losing the ability to have the very active/athletic life I once had. My kids are still young, so I miss running around with them. Sometimes the flares are so bad I’m unable to walk properly. Currently I take aspirin, gabapentin, and CBD oil. They all help slightly, but I’m still searching for a better medicine. To anyone newly diagnosed: You are not alone. I wish for you a clearer path to health.
Hello, I noticed that you mentioned itching. Some of your symptoms sound like what I went through for the last 4 years. It turns out that my severe and ongoing itching was caused by my liver and I was diagnosed with Primary Biliary Cholangitis with Autoimmune Hepatitis overlap. Have you had your liver enzymes and liver function tested? It wouldn't hurt to rule out that problem with a simple blood test. Also, I wanted to ask you about your ocular migraines!!!!! I couldn't believe my eyes when I read that you were diagnosed with that. I was too!!! But the ophthalmologist that told me just said that's what it was and that was it! Were you prescribed anything for it? Did the doctor tell you that it was autoimmune as well? I have been so worried about this. Thank you for sharing.
Thank you for the suggestion. My regular blood tests all come back surprisingly normal. I agree with the diagnosis of EM for me though. I have textbook symptoms such as the flares (redness, swelling, heat) caused by increased activity, salty or sugary foods, exhaustion, sitting too long, high heat or humidity, etc. I forgot to mention in my original post that I also use a pain cream with imipramine, cyclobenzaprine, and lidocaine applied directly to flares. It helps, but does not much reduce the occurrence of flares.
The Fibromyalgia, Migraines, and my Multiple Chemical Sensitivities actually all fall under the Central Sensitization umbrella. Other disorders such as Restless Leg Syndrome, Chronic Fatigue Syndrome, etc. are in this same category. I was told that once a person develops one such issue, then they are at risk for developing other disorders falling under this umbrella. Try googling it for more details, but researchers point to minute damage to the pain receptors in the spinal nerves, as causation.
Anyway, the pain of Ocular Migraines is certainly taxing and worrying. The first time it happened, I thought one of my retinas was detaching due to the showers of white sparks I kept seeing! Luckily I still have my eyesight… I hope you can find some relief from the Migraines.
Hi hotfoot, I too have erythromelelagia it has changed my life actually turned it upside down no standing for over 20 minutes, no hot showers, no swimming I. warm pools, I spend most of my days with my feet propped up fans going day and night and sometimes run cold water in the tub and soak my feet until the burning stops. I take gabapentin, cymbalta and propananol 3x daily, if I miss one does of propranolol I'm up in the middle of the night soaking my feet. Horrible disease.
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