Does anyone with erythromelalgia suffer from dry mouth? Driving me crazy. I also suffer from extremely dry skin where erythromelalgia flares.
Hi Maddie. I have the same problem. I have been so thirsty before that I couldn't get enough water. I kept drinking and drinking but my mouth was so dry I couldn't speak. I was drinking so much water It was making me sick to my stomach so I had to start putting it in my mouth and spitting it out! My doctor prescribed me Cevimeline and this has helped a lot .
He also suggested sucking on sour sugar free candy. This helps too but sometimes it hurts my tongue.
I also get that strange alligator skin when flaring. I will look as if I had aged 40 years and it will be dusky if that makes sense. It returns to normal shortly after flare is gone .I know I have taken pictures of this strange dry skin and if I can find one I will add it to my photos so you can see if it looks similar. I will post back if I found one. I am curious if others have this same problem.
Take care,
Alina
Maddie And Alina.
I didn't have dry mouth until I started medication about a year ago. I find that chewing sugarless gum really helps and also increases GI motility which is a good thing because so many of these meds slow down motility.
I have experienced extreme dryness of my skin (alligator flesh really describes it well) since last year when my EM moved into a new stage of multiple daily flares literally over a period of a couple of weeks. At the same time the sebum I produce became very thick and is especially a problem around my eyelids. I have had several nasty styes (hordeolum) inside my eyelids which have taken nearly a year to heal. And the sebum buildup on my scalp is also very heavy (I've never had this problem before). I thought that it was possibly just due to aging, but it literally happened over night -- like someone had thrown a switch. One wonders if this isn't part of some hormonal change. I find the only thing that keeps my skin from cracking on my feet, hands and lower legs is Lipikar Baume (La Roche-Posay). Everything else seems to cause more flaring and burning.
Dragica
Hi Maddie!
Actually, your question was one of the reason that I joined to group to answer you. Since my symptoms were started with dry mouth, dry eyes, dry skin and anhydrosis (Normally, I was sweating a lot). Later, burning skin and flushing-flaring face. First, I went to rheumatology and ANA was 1/100 positive, doctor suspected from Sjögren Syndrome and she gave me Plaquenil. However, I was not fully sure about that I went 2nd doctor. At that time, ANA was negative, but I used Plaquenil for 8 months, it didn't work. I went neuro surgeon because of cervical discal hernia. I was suspecting if there was pressure on nerves. He gave me Neurontin 300 mg, I used for three weeks. Side effects were tolerable and it gave some relief but when it was increased 600 mg, I could not bare it. It was suggested to examine by endocrinology. I did VMA test, it was normal. Then, I went to immunology, autoimmune tests were made. Everythings were normal. Neurica 75 mg was given, again it didn't work for me because of similar side effects of neurontin. I had very bad experience with Cymbalta 30 mg, after taking one pill I had to be taken off to emergency room. Side effects disappered after 3 days. I also tried neural therapy, after 250 injections, which consist of procaine and lidocaine, they didn't change anything. Finally I went to neurology again (since they had told me that come to us after finishing autoimmune and VMA tests), they saw my face and diagnosed. This time, lidocaine was applied as a cream for face and it made worse. I explained all this if you have not done these autoimmune tests etc.yet. Unfortunately, I don't have solution for dry mouth and burning tongue except that drinking cool water and chewing gum without any sweeteners. If you have also dry eyes, I suggest you to be made Schirmer test, at least you can make your eyes relief using by eye drops. For dry skin, my dermatolog gave me Bioderma Atoderm Creme for dry to very dry sensitive skin. I use after bath to apply all my body and face whenever I need it. Beside this, I use Coresatin Nonsteroidal cream for dermatitis (I don't have dermatitis but I think only they are able to moisture the skin) twice a day. And off course I press the ice pack, which is covered by cheesecloth made by cotton, on my face very carefully. Do you have also burning urine problem? I have it and don't know what to do. I hope that this small information is helpful.
Ejderha said:
Hi Maddie!
Actually, your question was one of the reason that I joined to group to answer you. Since my symptoms were started with dry mouth, dry eyes, dry skin and anhydrosis (Normally, I was sweating a lot). Later, burning skin and flushing-flaring face. First, I went to rheumatology and ANA was 1/100 positive, doctor suspected from Sjögren Syndrome and she gave me Plaquenil. However, I was not fully sure about that I went 2nd doctor. At that time, ANA was negative, but I used Plaquenil for 8 months, it didn't work. I went neuro surgeon because of cervical discal hernia. I was suspecting if there was pressure on nerves. He gave me Neurontin 300 mg, I used for three weeks. Side effects were tolerable and it gave some relief but when it was increased 600 mg, I could not bare it. It was suggested to examine by endocrinology. I did VMA test, it was normal. Then, I went to immunology, autoimmune tests were made. Everythings were normal. Neurica 75 mg was given, again it didn't work for me because of similar side effects of neurontin. I had very bad experience with Cymbalta 30 mg, after taking one pill I had to be taken off to emergency room. Side effects disappered after 3 days. I also tried neural therapy, after 250 injections, which consist of procaine and lidocaine, they didn't change anything. Finally I went to neurology again (since they had told me that come to us after finishing autoimmune and VMA tests), they saw my face and diagnosed. This time, lidocaine was applied as a cream for face and it made worse. I explained all this if you have not done these autoimmune tests etc.yet. Unfortunately, I don't have solution for dry mouth and burning tongue except that drinking cool water and chewing gum without any sweeteners. If you have also dry eyes, I suggest you to be made Schirmer test, at least you can make your eyes relief using by eye drops. For dry skin, my dermatolog gave me Bioderma Atoderm Creme for dry to very dry sensitive skin. I use after bath to apply all my body and face whenever I need it. Beside this, I use Coresatin Nonsteroidal cream for dermatitis (I don't have dermatitis but I think only they are able to moisture the skin) twice a day. And off course I press the ice pack, which is covered by cheesecloth made by cotton, on my face very carefully. Do you have also burning urine problem? I have it and don't know what to do. I hope that this small information is helpful.
I have had a dry mouth as long as I can remember and use ginger ale to help at night. Just a sip every time I wake. At the Lupus clinic (I don’t have Lupus but was referred there)they did a tear test and said I had no tears at all. He said dry eyes and mouth are associated with my nodal osteoarthritis. My rheumatologist has never linked them though. Very dry skin only happened to me along with EM. It wasn’t a problem before.
Thanks for sharing your history. Very helpful. I do have a dry throat as well. I drink and I drink and I drink. I do suck on sour hard candies which seems to help some. I do not have burning urine problem, a praise there! I do have dry eyes!! Sometimes my eyes are so dry they are red, affects my vision as well.