I have EM for 4 years now. It started after my second pregnancy (9 weeks after delivery) en i have it Always (24 hours a day and not in flares).
I had my children by IVF. The EM started with uticaria and thick fingers...a few days later it became EM. First in hands and later in feet.
I have been tested on everything, also a bownmarrowbiopsi. I had.
They were looking for the disease mastocytose. I don't have it.
I had every painkiller, antihistamine , prednison etc. Nothing works. I had a skin biopsi and I had to much histamine in my skin. But anithimstine medicine don't help me.
In the first week I had EM (4 years ago) i tried asprine because I read about it. It worked!!! I had to stop from my docter because he wanted to test my blood. After that I tried asprine again and it did not work. again!
Why????
I found soms help in the alternative docters. It helped me!
I reacted on many food and that I don't do anymore beacause of her help.
Magnesium doesn't seem to work for me.
Anyone who has a great tip??
I don't go to a hospital anymore..they can't help me and know nothing about it. they only give me painkillers.
Beacause I also sometimes have lichen sclerose I thing it's a kind of auto immune ...
Good to say is that I take macrogol (medicine for my intestine) . I stopped a few weeks but it did not seem to change my EM.
Hallo Brenda ,ik las dat jij ook EM hebt Dat heb ik ook sinds ong.5jaar .Ik ben alleen op zoek naar lotgenote hier in Nederland .ik woon in Wijchen ,en zou het fijn vinden als we gegevens zouden kunnen uitwisselen,en misschien elkaar helpen wat je kan doen om het te verlichten .de dokters kunnen voor mij ook niets meer doen geen enkele medicijn helpt bij mij.ik hoop iets van je te horen gr.Annie
There is no real "cure" medicine for erythromelalgia and I tried a trial of aspirin for a few months and didn't seem to have much luck either. My doctor suggested trying low blood pressure medicines, but couldn't guarantee anything would improve my situation. What foods did you try from the alternative doctors? I have found cold water helps when my hands burn. It's just so frustrating and I feel for you since there isn't a real cure at the moment.
Hi Brenda, I am sorry that you have to deal with EM and I know what you mean by saying that you don't go to the Hospital/doctors anymore - they can't help. I never even started to have tests done because I know there is no cure for EM. We can only try to help ourselves. I have symptoms just like you - always visible, always burning (hands and feet) but depending on room temperature sometimes more , sometimes less. Direct sunlight or warm summer temperatures (anything above 75 degrees Fahrenheit/ 23 degrees Celsius is painful. I don't take any medication. Quite a lot of people get relief taking antidepressants, but I don't want to deal with medications like that - too many side effects. I use fans or frozen gel packs (mostly bought from Amazon ) to help keep my feet cool especially late evenings/nights when the burning usually increases. Anti-itch creams help keep my hands and feet from drying out. Good luck to you. If you are on Facebook you may want to join another group run by a Lady from Scotland : Erythromelalgia- A helping hand. We talk about everything that happens to us, that helps us or that we come across and think it could be of help.
I have had really good success with a herb called paeonia from a herbalist. Available in capsule or liquid forms. For me it works much better in liquid form. My doctor knows I use it and he said if it works keep using it. Kept the burning completely under control all last summer. It is always mixed with at least one other liquid herb as the herbalist says they do not work as well on their own.
I have had really good success with a herb called paeonia from a herbalist. Available in capsule or liquid forms. For me it works much better in liquid form. My doctor knows I use it and he said if it works keep using it. Kept the burning completely under control all last summer. It is always mixed with at least one other liquid herb as the herbalist says they do not work as well on their own.
What other herb do you use with paeonia? Ik want to try this.
I often have withania in the mix which helps me to sleep. Sometimes Echinacea, rehmannia, zanthoxy, cramp bark, marshmallow and turmeric. She varies the mix. Last summer when it worked really well it had zanthoxy, turmeric, Echinacea, paeonia and cramp bark. I was also having vitamin B injections over that period and perhaps that also helped.
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Mari-Annie Van Zeeland said:
Hallo Brenda ,ik las dat jij ook EM hebt Dat heb ik ook sinds ong.5jaar .Ik ben alleen op zoek naar lotgenote hier in Nederland .ik woon in Wijchen ,en zou het fijn vinden als we gegevens zouden kunnen uitwisselen,en misschien elkaar helpen wat je kan doen om het te verlichten .de dokters kunnen voor mij ook niets meer doen geen enkele medicijn helpt bij mij.ik hoop iets van je te horen gr.Annie