I get really bad tingling in my feet and hands and it can go to other parts of my body when I have a bad flare up. my feet, hands, arms and legs turn beet red and swollen on a daily basis. I take Cymbalta, neurontin, and percocet just to keep it under control. Sometimes I get so bad that I have to take more than one 10 mg percocet just to calm it down. Well I ran out of my percocet over Christmas weekend on friday and due to Christmas the Pharmacy counld not refill it until Monday. I flared for 3 days and was up with no sleep the whole time. I went to the ER twice with no help and after climbing the walls from the severe tingling and swollen limbs with no sleep, my mind mentally shut down and my family had to watch to make sure I did not leave the house without clothes on, I once got angry and threw things at my husband, and did many other odd things I do not remember. I lost 2 days that I can not remember. I finally flared so bad that my whole body was extremely hot and I looked like I was severly sunburned. My husband found solar cane in the winter to spray on my body to cool me down. my arms stomach, legs, feet, hands and other parts of my body swelled and my skin looked as if it split. When the flare was all done, the splits in my skin looked like scratches and scabbed over. my skin looked scally and very dry. Monday I got my percocet and calmed to get the sleep I so needed. The flare up finally went away. My dr. now has me on lyrica and so far it seems I need less percocet durning the day and the tingling is alot more under control. Because of all this I can't work and I will be applying for SSD in the next few days. I hope lyrica can help stablize the tingling and pain because it is taking it's toll. I cry every time someone mention's the flare up. The emotional turmoil I have faced lately is unbareable. I have had this since birth and I really try to anticipate the future as positive as I can.
I’m so sorry you had to go through such a nightma and I’m angry that the ER didn’t offer you more help. My thoughts and prayers are with you.
Tina
I AM ALSO SO SORRY......I STAYED IN MY ROOM FOR CHRISTMAS AND I TRY TO RELAX...I also Stay away from the Family and the NOISE and the ALCOHOL...ONLY WATER......IT DOES WORK
I am still waiting for an official diagnosis...after over 12 years...stopped seing doctos for about 6 years as got tired of them not knowing what to do or how to diagnose it.My first symptoms started when I was in my early 30's. Started seeing a new doctor...he ordered all kinds of blood tests...good luck..nothing shows up in blood tests...you would think that the visual evidence would be enough to get him to look into EM...time will tell...no meds just pain...mornings are brutal...feet just burning and burning...hard to wear shoes but cold here so have no choice....TEA sent me a doctors name in Toronto area so trying to see her...perhaps she is more versed in this ailment. have this in my feet and legs, my arms and hands ,(tingling and numbness) my chest and even the sides of my face...it is highly visible...will post how this round of doctors does. My sympathy to all you others who suffer this horrible condition...hopefully I will get some kind of treatment eventually.
THANK YOU AND GOOD LUCK...I have it for almost 10 YEARS NOW...I can not do anything...I just sit in my RELAX chair and wait........If I do something...MAKING UP MY BED....MY BODY GOES CRAZY...Sometimes it is very bad......YEA WINTER IS BETTER FOR ME ALSO.........GOOD LUCK IN TORONTO.......I LIVED IN TORONTO in 1979.....
Your post brought me to tears. I'm so sorry you had such a horrible, horrible flare & no help from the ER which seems to be rather typical. The average person doesn't realize how if some people don't get enough sleep for a few days that it can make a person delusional. I'm grateful that you had someone to make sure you were okay during those 3 days and that you didn't harm yourself. I'm rather surprised with you having this all your life that you aren't already on SSD. I will pray that you get approved quickly.
Thank you all for your prayers and support. I was born with this and only had burning feet and tingling occassionally. My mom took me to many doctors and was told it was in my head, athletes feet, arthritis, etc. I was diagnosed about 12 years ago when symptoms were getting progressively worse with bad tingling and burning pain. A neurologist took about 3 to 4 visits and I had a diagnosis. At first I did not believe it because I had more tingling than anything else. But the more I reasearched it, the more I knew he was right. I use my faith to try and stay strong. Prayer when I am at my worst can help keep me calm. I am on my 4th day of lyrica and for the past 3 days have taken my percocet alot less. Went from 6 a day down to 2 to 3. Best of luck to all of you. My prayers with you all and God Bless. Wish me luck applying for SSD.
Have you also tried just plain aspirin? I have Polycythemia Vera with EM following - terrible flare up last July, but when I began the aspirin therapy - again, it has gradually subsided. OF COURSE, my EM is nothing compared to your situation, but I just wonder if the aspirin might also "help" a little. I'm afraid of the meds you mention as I always seem to head right to the horrible side affects. My legs hurt 24/7 and I am up frequently in the night with pain....but still, nothing like what you've described! So sorry you has such an experience! And no, doctors don't seem to know about EM, but finally, my hematologist did diagnose my EM, but I was first made aware on MPDchat group for the PV....A friend also has this and his dr. told him to soak his feet in cold water, but TEA vehemently advises against this practice, so I hope he listened and shares that info w/his doctor. It took him ver 10 years to receive a dx! Sheridan