Vasculitis UK

Any night owls out there?

I would like to know if anyone else who has Cutaneous Vasculitis lays awake at night or has to get up becuase of discomfort with itching/rash or pain?

Was in remission for a while but this last week it has flared up again. Not sleeping. Currently sitting on sofa tryingto keep my legs cool. Just wondered if I am the only one. Feeling alone and wide awake.......

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I am a night owl and often get the itchies when trying to sleep. My doc says

my disease destroyed the subcutaneous layer. My lower legs have no fat layer.

Before that happened my legs literally felt like I was walking in fire. They were so hot. I could not use commercial creams or lotions then. So I started using coconut pure and let it melt on my legs. I was so desperate for relief I even tried putting cold yogurt on my legs.

The relief was brief but welcoming while it lasted. I do not know what type of vasculitis I have.

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Thank you for your message. I am having a terrible time at the moment. So tired as awake so many times in the night. I was diagnosed last summer but started in February 2015. I know there are different types of Vasculitis but after many biopsies this is what they came back with. My legs are so hot, I sit with my feet in ice cold water to keep cool and have shorts on. Seeing my consultant next Thursday but I know there is not much else they can do. I am on Colchicine but although at times seems to work I then get these flare ups. In some ways it is nice knowing someone else is sharing the same issues

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lou1972,

This is the first time I have had swelling behind my knees and burning in my thighs. All this week has been really bad for me, with an unexpected flare up of my vasculitis, burning hot in my thighs and ankles. OMG, I totally identify with the putting feet in a cold ice or water pail. I have never met anyone else that has this. My dr says I lost the subcutaneous layer of fat from my ankles, it's as if the heat in the limb melted the fat. It's so odd. I get swelling but not in the ankle it's in the thicker part of the calf and shin. I have a lot of tibia pain and my ankle sometimes feels like it is in the vice grip and the skin is too small. So tight, burning,itchy, stinging, red and occasionally lumpy. I have only had one bad ulceration and thank heavens I have not had anymore. I do have some nerve damage in my legs from chemo.

My dr was thinking it might be panniculitis, but I will mention that we should consider the possibility of the Cutaneous type of Vasculitis. I do not have any scripts yet for my vasculitis as they haven't decided what I have yet. I do have gallstones and ulcers in the gut plus hyperthyroidism. (among other problems) Does any of this sound like Cuta.?

Like you, I am so happy to know someone else actually has experienced this. My thermometer internally doesn't work. I am usually way hotter than other people, yet my body temp is chronically and sometimes dangerously low. I don't get cold often but when I do my body seems to go in crisis mode. I cannot tolerate the heat or the cold now.

Please let me know more about cutaneous and what you have suffered with. I have many other symptoms but its hard to know what relates to that or something else. I will google it and look up the med you mentioned.

Thank you! Red

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Hi

I know when this first started my doctor assumed it was Eczema. I have suffered from Eczema on and off for many years but I knew this was different.

Me and my family were all treated for Scabies at one point as that was somerhing else they came up with. But after variois visits to the doctors then the hospital things staryed to be looked at deeper. My issue is mainly from my knees down. I had a doppler test done on my legs so they could hear the flow of my blood

They are saying my veins/arteries are not how they should be and the blood stops in places and when it does it makes my legs ger warm and thats when the itching and rash starts and red lumps on my legs and feet.

I get pain also. I have had pain in my right hip but the rheumatologist saidnir is where I have been over compensating on my leg which has now created discomfort in the hip.

I have to have bloods every 6 weeks to check liver etc is ok as I have been prescribed Colchicine.

I have been standing outside to cool my leg. Its the only thing that calms matters. And then it will be the bowl of cold water. My friend is sure all this is down to stress. Not sure she has the answer.

I know what you mean about tight akin. I was cleaning a cupboard and my skin is so tight it was too painful. Hope things get better very soon

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