Greetings dear friends. I have SLE among many other medical issues. It has been at least two yrs since my last post. I have been on a journey of diagnosis and treatments as I see all of you have. My main concern at this time is that my skin itches so severely that I CANNOT get relief. I have been there, done that with different disciplines and treatments. My fear, other than going completely batty, is that I am having an aggressive attack of the largest organ on/in my body. Rheumy has no answers. Can it be as serious as an assault on a major organ inside my body? Insides are in pretty good shape for the shape they're in!
I do not have discoid lupus or symptoms of it. I have electric charges of itch/pain that comes from inside and so topical products do not touch it. Having worked in a Cancer Center, I even tried rubbing Emla cream all over my arms and to our surprise, it didn't touch the offense.
I just found out that a lady in my mother's nursing care center was having itching so bad, she was screaming for help for days on end. Finally yesterday they sprayed her affected area (back) with a glycerin product and it appeared to give her temporary relief. Does anyone have anything to share regarding glycerin? I am also going to try eucalyptus/coconut oil rub. Anything on that?
I feel I have aged ten yrs in my two yr absence and am in real need of some answers as to why my skin is suffering so. My legs have lesions and scars always. Also I bruise everywhere without cause. But the itching and trauma to my arms especially is taking a toll. I would be grateful for any advice!
I’m sure yor rheumy would have mentioned this but have you been evaluated for fibromyalgia? It’s a common companion disease for many people with lupus (along with lots of other illnesses as well). When I saw you mention electric charges of pain and itching I immediately thought of some of my symptoms. My fibro pain takes many guises, usually corresponding to where I am in my lupus flare cycle as well as worsening during times of stress and anxiety. For me it can be anything from a deep unwavering itch, electic shocks, burning skin and the worst is what I call electric needles. That is when it feels as if every hair follicle on my body has been pierced with tiny needles that are not only electrified but also red hot. The pain can be so bad that just the weight of a tshirt can be excruciating.
The good news is that I have found some relief from Lyrica. Some other things that help me are anything cold, like ice packs, cold baths (showers are not an option because the streaming water is really painful) and lowering the air conditioner in ,y house or car. I’ve also found that while light touch like clothing is painful, heavy pressure gives me relief. I have an extremely heavy, like 40 pounds heavy, blanket I got while living in Korea as a child to keep warm during the bitterly cold winters. I fold it up and lay it over the length of my body. I have a small weighted lap blanket in the car to use when I’m away from home. It also helps to be wrapped up very tightly in a blanket similar to how you swaddle babies. Even my dog joins in on the effort on bad days by laying on top of my legs or my back. Lastly I use creams and lotions that have a cooling effect. A really good one is emu blue, it doesn’t smell like you’ve been swimming around in a grandpa’s medicine cabinet, and lasts for a bit but I have noticed that if I use it regularly it loses some of its effectiveness (as do most products like it do) so I tend to use it on bad days that I can’t be at home curled up under my blanket.
I hope you are able to find some relief!
Oh thank you VDD!
I have tried everything except the Emu Blue, so will give it a try! As much as I hate hearing that you suffer from this, it's nice to know I'm not totally alone. Yes, I have had fibro for 25yrs. It is crazy in and of itself!!
Thx for sharing!!