I'm wondering if I need to see a dermatologist on top of everything else. Ok, so my cheekbone area gets red after being out in the sun AND if I rub my fingers over the area. I get the sun exposure thing, but just gently rubbing my fingers over the area?? I look like I have a sunburn after drying my face with a towel. I'm also noticing I'm itching more than usual. Places like my knees,upper arms, soles of my feet, scalp and across the bridge of my nose. I haven't seen any kind of lesions. I do take Plaquenil, and my skin did itch like crazy when I was first on it, but I've been taking it now for almost 2 years.
Yesterday I spent about 3 hrs. (from 9-12) outside. While it was humid here in the South, it wasn't sunny at all. Once I got home, I HAD to take a nap for at least an hour, but could have slept more! I was sooo exhausted the rest of the day! I ended up going to bed at 8:45pm. So I guess the sun doesn't have to be shinning for it to make me feel like a truck ran over me, huh??
I understand exactly where you are coming from! I have found that my skin gets dry and itchy a whole lot more lately and I end up using lots of lotion on it to try to stop the incessant itching that wakes me up at night. I had to go to an appointment in Birmingham yesterday which is a 2 hour drive one way for me so today I'm really hurting a lot and wiped out energy wise. I have 2 appointments up there next week on different days so that is going to be really tough. One is at 8:20am so that means I'll have to leave no later than 6:15 am in order to get there and mornings are always so rough on my body. Yesterday I had to fight to stay awake and on the road the whole way up there and back. I just got a call from the clinic telling me my Rheumy wants me to see a vascular surgeon before my appointment with her because I have a toe that turns purple with cooler temperatures. I'm having surgery the following week on my jaw for bad TMJ. My body just hates cartilage and seems to do away with it where ever it can like my knees, hands and toes. I sure wish I knew someone in Birmingham that I just stay with so I wouldn't have so many separate trips there, this is really getting hard on me!
As far as you turning red, I do that as well with any kind of extreme temps. If it's cold my face turns red, after a hot shower it's just as red. I keep a redness on my cheeks and nose 90% of the time now.
Thanks for letting me vent! Sometimes you just have to I guess. Good luck with your itching. I would try a good moisturizing lotion for awhile to see if it helps.
I think it was the sun probably. I am guessing because I am down today and was outside way too much yesterday. I wasn't smart so now I pay. I have been sleeping most of today and last night I couldn't sleep in bed due to GERD. Plus for two weeks my back above the waist has been hurting so I think I make have some sort of infection just because of that and the fatigue. So, I'm saying all this because I think this is what is doing it for me so I am guessing the same for you. Not fun, is it?
So sorry to hear that you are not feeling so good. About sun "exposure"...remember that even on a cloudy day the burning rays of the sun pass right through the clouds, still able to burn our skin. This is the same story with sun coming through car windows. Sunscreen and cover up whenever we step outside, 365 days a year, 8am-6pm. =sigh=
thanks for everyone's input. went to my gyn today for my annual and she's asking me about losing weight. I would love to but add in PCOS, tons of med's including the occasional use of steroids and the pain and fatigue, how exactly am I supposed to lose weight?? I am looking into water exercises. We'll see.
I always wonder to myself when doctors have to tell us about our weight as if it is a huge surprise to us that we are overweight. And they also know that we all see several doctors and yet they have to mention it each time. They are also very slim and never have a problem gaining weight and I have asked them and they admit they don't or never have had a weight problem. I finally told one to walk a mile in my shoes and he of all people knew me when I was at a great weight and also knows everything I have gone thru but he doesn't relate. Anymore I just let it go in one ear and out the other just like most of them let my issues go in one ear and out the other and focus on my weight instead. When they don't know what to do they grab onto something to gripe at you about.
Anglewing. Hi, I had a problem with raynauds and my hands and feet would go purple. I went to my internist for a check up on my bp, because it had been high. Long story short, she put me on Norvasc. It is a calcium channel blocker and it stops the spasms in the capillaries that result from raynauds. I still get cool hands and feet but I have not turned purple for a couple of months and itis great. It also really helped my hbp. A twofer! I hope this helped.
Nates mom,I'm sorry that I dont have anything to add to your itching skin as I get it too. There are times I draw blood from scratching and I still itch! I will be following this thread to learn something new i hope. Take care of yourself. xx
angelwing said:
I understand exactly where you are coming from! I have found that my skin gets dry and itchy a whole lot more lately and I end up using lots of lotion on it to try to stop the incessant itching that wakes me up at night. I had to go to an appointment in Birmingham yesterday which is a 2 hour drive one way for me so today I'm really hurting a lot and wiped out energy wise. I have 2 appointments up there next week on different days so that is going to be really tough. One is at 8:20am so that means I'll have to leave no later than 6:15 am in order to get there and mornings are always so rough on my body. Yesterday I had to fight to stay awake and on the road the whole way up there and back. I just got a call from the clinic telling me my Rheumy wants me to see a vascular surgeon before my appointment with her because I have a toe that turns purple with cooler temperatures. I'm having surgery the following week on my jaw for bad TMJ. My body just hates cartilage and seems to do away with it where ever it can like my knees, hands and toes. I sure wish I knew someone in Birmingham that I just stay with so I wouldn't have so many separate trips there, this is really getting hard on me!
As far as you turning red, I do that as well with any kind of extreme temps. If it's cold my face turns red, after a hot shower it's just as red. I keep a redness on my cheeks and nose 90% of the time now.
Thanks for letting me vent! Sometimes you just have to I guess. Good luck with your itching. I would try a good moisturizing lotion for awhile to see if it helps.
Thanks lablover, my Rheumy did mention the possibility o f Raynauds so I'm not sure why s h e wants me to see the surgeon. We'll see.
lablover said:
Anglewing. Hi, I had a problem with raynauds and my hands and feet would go purple. I went to my internist for a check up on my bp, because it had been high. Long story short, she put me on Norvasc. It is a calcium channel blocker and it stops the spasms in the capillaries that result from raynauds. I still get cool hands and feet but I have not turned purple for a couple of months and itis great. It also really helped my hbp. A twofer! I hope this helped.
Nates mom,I'm sorry that I dont have anything to add to your itching skin as I get it too. There are times I draw blood from scratching and I still itch! I will be following this thread to learn something new i hope. Take care of yourself. xx
angelwing said:
I understand exactly where you are coming from! I have found that my skin gets dry and itchy a whole lot more lately and I end up using lots of lotion on it to try to stop the incessant itching that wakes me up at night. I had to go to an appointment in Birmingham yesterday which is a 2 hour drive one way for me so today I'm really hurting a lot and wiped out energy wise. I have 2 appointments up there next week on different days so that is going to be really tough. One is at 8:20am so that means I'll have to leave no later than 6:15 am in order to get there and mornings are always so rough on my body. Yesterday I had to fight to stay awake and on the road the whole way up there and back. I just got a call from the clinic telling me my Rheumy wants me to see a vascular surgeon before my appointment with her because I have a toe that turns purple with cooler temperatures. I'm having surgery the following week on my jaw for bad TMJ. My body just hates cartilage and seems to do away with it where ever it can like my knees, hands and toes. I sure wish I knew someone in Birmingham that I just stay with so I wouldn't have so many separate trips there, this is really getting hard on me!
As far as you turning red, I do that as well with any kind of extreme temps. If it's cold my face turns red, after a hot shower it's just as red. I keep a redness on my cheeks and nose 90% of the time now.
Thanks for letting me vent! Sometimes you just have to I guess. Good luck with your itching. I would try a good moisturizing lotion for awhile to see if it helps.
Yes, that is probably a flare, trying to come. If you want to be outside , put on long slevees(white), and a hat that will cover your face from the sun. I’ve had sun exposor, which caused me to rub sore spots on my face, and that was no fun at all. Also try not to stay out that long, take breaks (like 20 mins,go in rest for a moment then go back out, -you know) , that is how I do it. But hope that you feel better soon…Beverly L.
I skimmed the replies about itchy skin I have it too most of the time after being in the sun. As for the rash on your face it may be a rash called roesata I know I did not spell the right. Your rash sounds exactly like the rash my mom and sister have. They do not have Lupus so maybe the reash is not related to Lupus. I hope you feel better soon!
Thank you for the information Ann. Putting on sunscreen was an afterthought even when I was a healthy teenager...suffered lots of sunburns and still never learned. Now that I'm in my 40's I've got to make myself do it!! :)
Ann A. said:
Dear Natestired Mom, I sometimes feel as though my name should be Cassandra because I so often seem to be the bearer of unhappy news. But here goes anyway.
Our sun emits light at a number of different wave lengths. Only some of the light wave lengths emitted by the sun are visible to human eyes and create what we think of as a "sunny day."The portion of the sunlight that causes a problem for people with lupus is the Ultraviolet (UV) wavelengths - UVA, UVB, and UVC. UV cannot be seen by the human eye. Some UV is able to penetrate even dense cloud cover. What determines the amount of UV that is hitting the earth is largely season of year, latitude, and time of day. This is the season of the year when UV is hitting most of the US for most of the day. In the US South UV rays are hitting you even on a cloudy day. The advice to protect yourself from sunlight is really advice to protect yourself from the UV portion of the light. Clouds will not protect us from UV and neither will "staying in the shade."
Ann, your reply here has helped me too. If I forget the sunscreen I figured one time wouldn't hurt. And I thought being in the shade was fine. I paid dearly the last two days for forgetting my hat and being in the direct sun two days ago. I was sick to my stomach, had a low fever and slept all day yesterday. Today I am fighting to stay awake and have succeeded so far but I have sunscreen on and I am staying inside. You know, too many of us are not being educated enough. I have read and read about lupus but I don't remember things very well at all. Doctors know less then I do and then when you question them about something they act like I should have known all this. I am learning here so thank you one and all.
Ann A. said:
I have taken much of the thought out of applying sunscreen. I wash my face and I apply moisterizer (it comes with sunscreen). I wash my hands and I apply lotion that contains sunscreen. Sunscreen is not a separate act.
You scare me Natestiredmom. The damage done to us by UV is cumulative.
Thanks some more, Ann. Being a redhead, I have always been cautious with sun exposure. When I was 20 I got a very,very bad sunburn even with sunblock. I couldn't wear clothes for a week and had a sarong type thing I made with a sheet. The blisters were huge and I probably should have seen a doctor but back then we didn't do that so much. I was so sick. I now wonder if that did a lot more damage then I realized. I look back and know that I ached all the time back then too. Last summer I was hardly ever outside and I don't want that again but maybe I will have to be or hopefully find a compromise without doing harm to myself.
A nurse told me that lupus would be very hard on my skin. She said that if I could stand it I should take a shower only every other day and slather myself all over with a very good lotion every day (I use Curel). Sometimes I can't stand not having a shower but I use very little soap and then unscented Dove. I cannot stand to go more than 2 days without shampooing my hair even if it means having the itchy scalp. I have a problem with fatigue anyway but being outside does make it worse. It doesn't matter if it's sunny or not - if I go outside then I'm out like a light.
All the information about protecting myself from the sun is much appreciated. I used to think that I would only get fatigued if I were active outside, now I realize that just being in the sun 10 or more minutes will have me sooo fatigued I gotta sleep at least an hr. There is so much that lupus affects that I don't think it can all be related...but I guess it is. Good to know I have a great resource amongst all of you. Thanks!
I scratch so much sometimes that I must look like a coke fiend. I think much has to do with both the disease and the meds.
However, humid or not, cloudy or not, the UV rays are still reaching you. Some of the worst sunburns I had living in Southern CA were during June when we had what we called "June gloom"...virtually overcast the entire day. It's deceiving because it feels cool whereas sunny days remind us to go inside much more quickly.
Always, wear the highest sunscreen you can find and limit outdoor activities, rain or shine.
They make some very good real cloth disposable washcloths for those days when you cannot shower. Some days I simply don't have the energy, but like you hate not taking a shower. CVS also makes a foaming shampoo that does not require rinsing and works surprisingly well. It has really helped with my hair loss as my hairdresser told me that washing every day was contributing to the loss. When I do shampoo I use a very good shampoo and it's starting to look a lot better.
grandma14 said:
A nurse told me that lupus would be very hard on my skin. She said that if I could stand it I should take a shower only every other day and slather myself all over with a very good lotion every day (I use Curel). Sometimes I can't stand not having a shower but I use very little soap and then unscented Dove. I cannot stand to go more than 2 days without shampooing my hair even if it means having the itchy scalp. I have a problem with fatigue anyway but being outside does make it worse. It doesn't matter if it's sunny or not - if I go outside then I'm out like a light.
Wow Ann! You're a fountain of info and I love it! Thanks so much. My new mantra will now be: "Sunscreen is my friend" :)
Ann A. said:
Dear Nates tired mom,
You just hit on a very important point. Trying to understand what health conditions are the direct result of lupus, the result of lupus medications, and those that are the result of other factors can be a daunting challenge. I think that trying to keep it as simple as possible can be very helpful. And the simplest approach is to understand that the human body is a system - every part of a system interacts with and is interdependent on the other parts. A change in any part of a system has the potential to produce change in every other system.
Sunlight kills and damages the cells of every human being. Even in otherwise healthy people it can damage DNA and cause cancer - or the proliferation of cells with damaged DNA. That is why dermatologist recommend sunscreen and limiting sun exposure to everyone one. Most of us people with autoimmune diseases are a more sensitive to it than healthy people and it damages and kills more of our cells producing a higher level of inflammation. The immune system plays a large role in removing dead cells, rejuvenating the ones that are damaged, and bringing inflammation under control. Our immune systems do not do a good job of this because when it is supposed to be removing dead cells and rejuvenating damaged ones and reducing inflammation, it is doing the opposite. It is killing our own cells, damaging our own cells, and increasing inflammation. At some point I think everyone who wants to live well with lupus has to learn the word "cytokines" in order to understand the importance of their role in inflammation
The immune system is not located in one specific place in our body. The cells of our immune interact with each and every part of our body. If the immune system of a person with autoimmune disease gets triggered in one place, it can easily cause damage in another.
This is a neat little animation that talks about how the immune system works - with cells moving through our blood and through our lymph throughout our bodies. It focuses on how the immune system responds to bacteria entering the skin because of a splinter and talks about the inflammatory response. It points out that in autoimmune diseases the inflammation is chronic. It should also point out that with lupus it is possible to have what my rheumie calls "full body inflammation." Being in the sun can cause full body inflammation and result in damage anywhere in the body. The itching is about inflammation. Immune cells travel around our bodies looking for something to kill - I kid you not - There are Natural Killer Cells and "Killer T Cells." When the immune system responds to inflammation in a person with lupus our killer cells start killing our own (auto).
UV kills and damages cells in everyone who is exposed to it. A little sun exposure goes a long way for almost everyone. For people with lupus it goes a long way in turning our immune systems against us.
I also like this short crash course on the immune system, it explains that our immune systems are composed of highly mobile marauding assassins. It also points out that our intestines belong to the integumentary system, just like the skin on the outside of our bodies. This is important because just like sun exposure can trigger our immune systems to attack us, so can the foods that we eat. That is why so many people with lupus start looking at gluten free and gluten limited diets and various forms of anti-inflammatory dietary systems. We don't have that many choices. We either learn to behave in ways that limit inflammatory responses or we take antiflammatory medictions. The medicines are no fun (praying for Meg cause I remember that you are in Prednisone Hell right now). There is no 100% guarantee that avoiding UV and inflammatory foods will preseve our hearts our kidneys and our brains - but some of us are willing to give it the good old college try. We ain't gonna let the killers in our immune systems take us down without a fight.
I get itchy skin also. Feels like I itch everywhere. The more I scratch it the more it itches and swells up. I have taken allergy meds to help. also using Ice or hand sanitizer. I guess the alcohol helps relieve the itch. Not sure why it happens but it does.
I also so a comment on HBP and raynauds. I have raynauds and just started having hbp. I am going to ask about the medication for raynauds. Worth a try. Thanks for posting.