Extreme sensitivity of the skin

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.

Hi Nicole

I'm truly sorry your sister is feeling all this pain and has to deal with taking all that medication.

Unfortunately I have not experienced all the symptoms your sister has, I suffer from the primary form of EM and have yet to find relief from the pain. I do hope they find whatever it is that your sister is suffering from.

Good luck and keep us posted

Hey Dominique, thanks for your reply… I did read the skin sensitivity can be a side effect of the Gabapentin. It is strange though she got it after being on the Gabapentin for a while already. She is also experiencing extreme nausea now and has lost nearly twelve kg in weight.

Dear Nicole
I’m not a doctor but it sure sounds like your sister is very sick and I’m not sure it’s EM
Since being on Gabapetin I have GAINED 12kg, not lost ? Are you sure the doctors are investigating in the right direction?
Good luck to your sister and family,
Hope they find what is making her so sick.

I hope that they find out what is wrong with your sister soon. I've lost weight since I was put on Gabapentin, I'm on the same dose as your sister but I've certainly not lost 12 kg. It certainly sounds as if something is wrong, whether it's the side effects of her medication or something else, these are not symptoms that are associated with erythromelalgia alone. Losing 12 kg in less than seven weeks would be something I would have thought a doctor would be concerned about, rather than shrugging your shoulders and saying it's the medication. While gabapentin can cause horrible side effects, especially at the higher doses, I found that they disappeared after I'd been on the dose for a while.

Perhaps Brenda needs to change doctors? The one she currently sees sounds like she is giving reasons not to investigate further and not to refer your sister to other doctors.

Yes, we also still find it strange that she has lost so much weight. We kind of contributed it to the enormous pain and stress she was in, the nights without sleep, the medication, etc. But 12 kg is quite extreme. It does seem like she has stabelized now.

Starsmurf - how long after being on the Gabapentin did you find the side effects disappeared/ lessened?

The doctor that my sister is seeing right now simply doesn´t know anything about EM. She is a dermatologist, and all the treatments and medication she has prescribed so far seem to come from Google. Also she does not seem very willing to keep looking for other, underlying diseases - although I am not sure what to look for and how right now.

I found that the side effects of the gabapentin would lessen after about a week or two, it's hard to give an exact time as they would just gradually reduce. I have lost weight when I am on these drugs, and am hardly sleeping and am stressed from the pain, although not 12 kg. Perhaps she has lost more than me because she was in much better health before her EM started and she had more muscle than I do. At least your sister's weight loss has stabilised.

I have had doctors who were like the one your sister is treated by. I have had doctors accuse me of being a drug addict, others who can't be bothered treating me, the list goes on and on. I am so sorry that your sister's doctor is so uninterested. I've had to suggest the last few forms of pain relief my pain specialist has used. I found out more by googling "erythromelalgia" and spending ten minutes looking at suggested pain relief than he had done in the previous ten years. He then tried to pretend that he'd been thinking of those drugs the whole time.

I hope that your sister will get a lot more help from Dr Drenth, and I am sure that if he cannot help her himself, that he will refer her to someone who can. As I said in another post, he wrote that he is driven to research EM by the terrible suffering those who have it go through.

Please do not hesitate to ask for support for yourself, as this situation is hard for you too. It must be a living hell for your sister and for your family. Watching your sister suffer like this is almost as hard as having the pain yourself. If I can help you in any way, please just ask.