Hi all

This may sound really stupid but I have ET so can I please ask any fellow sufferers if you ever get 'sore skin'!? I know that sounds silly but i get a horrible feeling mostly on my legs but at the minute i have it on my arm and hand..... It normally lasts a couple of days. If feels bruised/burnt but its not!!!...

Is this just me or am i not alone and going mad!!! 😀


Elaine x

8 Replies

  • Hi Elaine - Not sore but very itchy at times...

  • Hey Elaine... :)

    This might take a moment or two but please bear with me...

    I was diagnosed in early May 2016 w/ Post ET (pre-fibrotic) MF.

    One of the symptoms that I have had for many years was something that resembled a nail fungus on my toes and fingers.

    Retrospectively (today) I now know that this condition is actually associated with having an MPN, pls see below:

    Erythromelalgia (EM) is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterised by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks. The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders. Primary erythromelalgia may appear to occur randomly for unknown reasons (sporadically) or may be familial, suggesting autosomal dominant inheritance.


    '...The exact underlying cause of erythromelalgia is not known. However, evidence suggests that it results from abnormalities in the normal narrowing (vasoconstriction) and widening (vasodilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities in blood flow to the extremities.'

    This is the link for the above, might be worth a further read by you...

    It has become apparent to me today that I have had that (EM) condition misdiagnosed consistently over the past 10 years... and it was not until I became diagnosed with ET that I learned it was also associated with my EM disorder.

    Elaine, what drug cocktail are you presently adhering to...?

    The main reason I am asking is because I have also suffered from a severe form of Pruritus since I first started taking Interferon every two (2) days via self-injections etc...

    In any event, I hope something here might assist you.

    Best wishes and have an a brilliant day.



  • I feel that skin problems are part and parcel of having an MPN, in my case ET. Before diagnosis and being prescribed HU with asprin I had itching on my arms and thighs (not bad) and began to wonder if it was the washing powder I was using. I also had what I now know to be erithromelalgia. Since medication the erithromelalgia seems to have gone away (that didn't happen for some time) as did the itching. However, I do have problems with the skin on the bottom of my feet.

    If I walk any distance, have a wrinkle in my sock etc, I can feel blisters about to form. Actually 'sore' dscribes the feeling well. I have bought special 'thin' but well-fitting socks from Rohan and wear trainers for walking which help but basically I can feel the blisters just waiting!

    I haven't noticed anything on the rest of my body except the skin is very dry.


  • Yes, I have had exactly what you describe!


  • I have exactly this. The skin on my inner arm or my side torso gets extremely sensitive - like a burn. I used to think I was getting shingles, but nothing ever showed on my skin. It typically lasts a day or so and then fades. I am not sure if it has to do with ET (I actually hope not, because my 16 year old daughter gets it as well).


  • How interesting. I have MF previously PV and for a couple of years now I have had a very sore skin under my nose (as if I had had a cold) it does not hurt unless touched and then it is like a burn. Sometimes it goes for a few days and I forget about it and then back it comes.

    Very strange indeed. I camouflage it with good makeup.

  • Hi Elaine you are not alone. I have had that exact feeling in my right arm just this week. Kept looking to see if there was a bruise or mark but nothing there except sore skin. Didn't really think anything off it until now when I noticed your post. I'm just recently diagnosed with ET jac negative and joined the forum a couple of days ago. It's amazing to know others are experiencing similar symptoms.

    Take care


  • Thanks Mandy and welcome to the forum.

    I mentioned it to my husband and he thought i was mad!!.... sore skin....... but thats the only way i can describe it and its really painful but thankfully it doesnt last too long....and i guess if this is the only reaction i get i cannot complain when i read of others peoples issues!!...

    Take care

    Elaine x