Urticarial Vasculitis

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Urticarial Vasculitis
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Hi, my name is Brunette_Rhyme. I've been diagnosed with and am a long term sufferer, I have other conditions but they are not on this radar however that does not surprise me. I feel out of 32 neurological and a mess of a muscularskelatal, my body is heading for another change. How long before we know what’s going to happen is anyones guess. My biggest obstacle right now is I seem to be my carer’s carer. I have a new set of carer’s coming on board. My new NDIS package has come through and finally I had and awesome LAC who knew what she was talking about. We have fought so hard and finally I received a package where I now might received the care I need instead of laying on the floor in a pool of blood in the morning whether I have an Apple Watch on or not. It is all dependant on the impact of the fall and mine are usually low by the time I hit hard. I have been on dexemethasone for nearly 3 months this time and it’s taking it’s toll and my doc does not get back from holidays for another month. I have to hang on as 2 hospitals have nearly killed me and I refuse to go down that road. I have an induction on Monday and really need these carers up to speed. I have one carer who is about to take leave and is on holidays to Italy. I hope she has and amazing time and sadly another one I have just lost as she had a fight with another carer to whom where previously friends. She put me in a very awkward position of choosing. I refused to and split them apart. It was not good enough so she resigned. I am very sad for this and I see her hurting right now but as the say with Pride come a fall. She knows I am very fair and kind however she needs to ask me. I guess I am reaching out for some moral support as I am truly exhausted and know I need to hang in there. I hope every is doing the best they can? If you are having reasonably good day, share and extra smile for the rest of us and we will do the same in return. J

#MightyTogether #Anxiety #Migraine #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #MultipleSclerosis #ChronicIllness #CentralPainSyndrome #MyofascialPainSyndrome #ChronicInflammatoryResponseSyndrome #UrticarialVasculitis #CentralSleepApnea #CentralSensitizationSyndrome #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #MultipleSystemAtrophyWithOrthostaticHypotension #HipDysplasia #DegenerativeDiscDisease #DentatorubralAtrophy #MyotonicMuscularDystrophy

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Mystery Hives

Please pray for me! I’m meeting with another dermatologist tomorrow. Hopefully he can help figure out what’s going on. I need some one I can rely on to take on my case, because these #Hives are the worst. Joint pain is one thing... They are so hot and itchy, I can’t sleep at night. Sometimes the whole site of the hives becomes swollen (mostly on my forearms). I’ve been exhausted, feel like I have something stuck in my throat and some days I can barely walk because my heels hurt so bad.

Have you experienced this?? Please tell me your story!

#MixedConnectiveTissueDiseaseMCTD #LupusVeins #lupusrash #Lupus #RheumatoidVasculitis #RheumatoidArthritis #UrticarialVasculitis #AutoimmuneUrticaria #Urticaria #HypocomplementemicUrticarialVasculitis


I was diagnosed with urticarial vasculitis and inflammatory arthritis last year. I am a young person in a rural area so there is no one I can ask for

advice on my condition. Going to school when I get a flare up is very difficult as it is hard to mask the hives and swelling especially when it reaches my face. It is also extremely painful. I have the vasculitis and arthritis under control at the moment but if I happen to get a flare up in the future, does anyone have any tips or advice to get me through the next round of torcher?! Thank you 😊 #InflammatoryArthritis #UrticarialVasculitis #Urticaria #Arthritis