I get hot cheeks, ears, hands and at times feet. I havent been diagnosed. What is the procedure for this? Ive been to drs, basically blaming these "rashes" on a virus. They look no further into it. I feel quite ill getting these flares and cant do much. Im not sure if Erythromelalgia is what i have, but id like to get to the bottom of this. Not lupus. I do have signs of peripheral neuropathy and raynauds, also in the family.
@januaryjane Hello,
I’m sorry you’ve been having problems and can’t seem to find help. Have you talked with your doctor specifically about the rash and neuropathy? Make a list, related to those two things, of what’s bothering you and the specific questions you have. Then, make an appointment. Have you read through all the past posts on this discussion? They could be quite helpful to you. Can you call and get an appointment?
@januaryjane Hello,
I’m sorry you’ve been having problems and can’t seem to find help. Have you talked with your doctor specifically about the rash and neuropathy? Make a list, related to those two things, of what’s bothering you and the specific questions you have. Then, make an appointment. Have you read through all the past posts on this discussion? They could be quite helpful to you. Can you call and get an appointment?
@januaryjane I’m so glad you’ve got an appointment and that you’re thinking of questions! You want to be an advocate for yourself! Maybe take your spouse or a friend to the appointment. Two sets of ears are always better than one. Will you let me know what you find out, please?
Does anyone have flares in the face or ears? Or hands?? I see some affected by their feet, which i have, but face,ears, and hands are more often for me.
Does anyone have flares in the face or ears? Or hands?? I see some affected by their feet, which i have, but face,ears, and hands are more often for me.
Hello januaryjane, I do have flare in my hands, face, and ears from time to time. Usually they are in my feet. My symptoms have improved since I began taking Mexiletine. But I have found that certain foods, conditions, and stress/illness can still trigger flares.
Hello januaryjane, I do have flare in my hands, face, and ears from time to time. Usually they are in my feet. My symptoms have improved since I began taking Mexiletine. But I have found that certain foods, conditions, and stress/illness can still trigger flares.
Yes, I was diagnosed by a rheumatologist at Mayo Clinic, who I still see. The face/ear flares are similar to the ones in my feet. There’s redness, burning, and skin is very hot to the touch. Sometimes there’s some very slight swelling. I used to get swelling in my feet to the point where I could not walk. If you haven’t been diagnosed yet, take photos of the flares to bring to your doctor. It’s helpful for diagnosis. Hope this helps you.
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@januaryjane Hello,
I’m sorry you’ve been having problems and can’t seem to find help. Have you talked with your doctor specifically about the rash and neuropathy? Make a list, related to those two things, of what’s bothering you and the specific questions you have. Then, make an appointment. Have you read through all the past posts on this discussion? They could be quite helpful to you. Can you call and get an appointment?
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2 ReactionsI just saw my derm and she thinks its a rheumatic issue. Yes, Im putting together ?s for my appt with a rheum in march.
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1 Reaction@januaryjane I’m so glad you’ve got an appointment and that you’re thinking of questions! You want to be an advocate for yourself! Maybe take your spouse or a friend to the appointment. Two sets of ears are always better than one. Will you let me know what you find out, please?
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1 ReactionDoes anyone have flares in the face or ears? Or hands?? I see some affected by their feet, which i have, but face,ears, and hands are more often for me.
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1 ReactionHands yes. Face used to get sharp stabbing pains in brows and temples. Now ever so often since being on Lyrica.
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1 Reaction@rwinney I’m so glad to hear that Lyrica (Gabapentin) has helped you! Do you have any side effects that bother you?
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1 ReactionHi Becky
I felt tired at most but, acclimated. My exhaustion came with neuropathy prior to Lyrica anyhow.
Rachel
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1 ReactionHello januaryjane, I do have flare in my hands, face, and ears from time to time. Usually they are in my feet. My symptoms have improved since I began taking Mexiletine. But I have found that certain foods, conditions, and stress/illness can still trigger flares.
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3 ReactionsAre you diagnosed? Yes, mine is triggered by those too. What are your face and ear flares like??
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2 ReactionsYes, I was diagnosed by a rheumatologist at Mayo Clinic, who I still see. The face/ear flares are similar to the ones in my feet. There’s redness, burning, and skin is very hot to the touch. Sometimes there’s some very slight swelling. I used to get swelling in my feet to the point where I could not walk. If you haven’t been diagnosed yet, take photos of the flares to bring to your doctor. It’s helpful for diagnosis. Hope this helps you.
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3 Reactions