My Journey with EM
My symptoms first started in October of 2010. I began to investigate my symptoms on the internet. After searching I came upon Erythromelalgia and ALL my symptoms matched. I then began my search for a doctor who could and would help me. I finally found a wonderful neurologist who agreed to help me. I spent two years confined to a recliner due to my pain. My neurologist tried various things to help me including Ivg therapy. Nothing seemed to help. He then started me on a large dose of Gabapentin (4800mg). After about a year on it I began to improve. I remain on 3600mg of Gabapentin today. I also receive pain medication to further improve my quality of life. Don't get me wrong I have my days but I am no longer confined to my recliner. I can now do my laundry, bathe myself, drive some, run errands with my family, and attend family events for which I am so grateful. I pray things will not change because I do not want to be confined again but there are no guarantees. Living with EM is a huge challenge. Walking, standing, exercise, warm to hot weather, bathing and sometimes just being are tremendous challenges. But I try to just take things day by day.
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