Hi everyone,
This is my first post here, so sorry if I bring up topics that have already been discussed!
My sister has EM and is now at home with my parents. You can read her story so far below. One question she has is if anyone else is experiencing an extreme sensitivity to soft touch of the skin of her lower arms and legs. Squeezing of these areas is fine, but soft touch from for example her blanket hurts a lot. Her doctor mentioned that it may be a side effect of the Gabapentin she takes - does anyone else experience this?
We are finding that her symptoms are changing so we think there may be an underlying illness, and that the EM is not primary, but so far there is no way to know.
Thanks for any insight or feedback anyone may have!!
XX Nicole
My sister Brenda is 26 years old and was recently struck down with disease. Her doctors believe she suffers from Erythromelalgia. It all started around seven weeks ago, when Brenda returned from a skitrip in Austria. While driving back home, she suddenly got what seemed like a fever attack with extreme throat ache. The pain in her throat was so bad she could almost not swallow. She took two Paracetamol and rested for a while on the backseat of the car, after which the fever went down and her throat got better. The improvement was suprisingly dramatic and fast, so much that she was able to go to work as usual the following day.
However, a few days later she started having terrible pain in her joints and stayed home from work. The pain in het joints lasted for about one week, and then the pain in her feet began. It was a hot, burning and very painful sensation. After a few days the same thing occurred in her hands. The only thing that helped was putting hands and feet in ice cold water. These pains progressed and got worse and worse (while the pain in her joints lessened), and she was prescribed various types of medication amongst which Prednisone, Tramadol, Ibuprofen, Oxinorm, etc. She was unable to sleep at night and got completely exhausted. She went to see a doctor who referred her to a dermatologist, who mentioned he thought it might be Erythromelalgia. After about two weeks she was admitted to hospital (the LUMC here in Holland) because the pain got so extreme she could no longer manage with my parents at home. There the diagnosis was also Erythromelalgia. The doctors had virtually no experience with this disease and at first focused solely on pain management. At first she got 30 mg of Methadone, but that was not sufficient, so they gave her a constant dosis of Morphine and an additional Morphine pump for self-administration. Sometimes (especially at night) she got severe pain attacks and was brought to the IC for a Morphine boost. Two days later they started her on Gabapentin and Celebrex. Later they also added Clonidine into the mix. Additionally she also got Paracetamol several times a day.
At first the pain remained, but one week after she was admitted, she suddenly improved dramatically and was able to get a few hours of good sleep for the first time in a while. The pain was less (where it was first a 9 on a scale from 1 to 10, it was now a 2 or a 3). They lowered her dosis of Morphine. One week later she was sent home. She has now been home with my parents for about ten days. The extreme pain has not returned, but the pain has changed. The past week, instead of a burning, painful sensation in her hands and feet, she now has severe stifness in her limbs (especially lower arms and legs), extreme sensitivity to soft touch (sqeezing her skin is fine, but soft touch from example her blankets hurts), and extremely painful "shoots" through her arms and legs. These shoots she describes as nervepain and she gets them mostly when stretching or when leaning on her elbow for example. She is still unable to sleep for most of the night.
This change in her symptoms made us think there may be an underlying disease to her Erythromelalgia, for example Fibromyalgia. However, her doctors do not seem to believe there is another disease.
Brenda currently takes Celebrex 2x 100 mg/ day, Gabapentin 3x 1200 mg/day, Paracetamol 4x 100 mg/day, Fentanyl patch 37 mg, Amitriptyline 25 mg/day. She is far from painfree, can hardly walk, can hardly move her hands, feels extremly drowsy and tired during the day and then cannot sleep at night, and is often feeling depressed.