Hello everyone. I have truly missed you. I have truly missed the encouragement and support. I hit a very rough patch with the Lupus and MS and was close to giving up. I am thankful to God that somehow he keeps digging down deep in me and pulling out strength that I didn't know I had. I have had new systems attacked. I had to have an emergency surgery due to failed mediport and no accessible veins. I couldn't eat, walk, and was in severe pain. I said I was tired and prayed for God to take me home. But God just kept pushing me to fight on. I recently had a manifestation of the disease that I have never experienced before. I was in the sun about 85 degrees for 15 mins. My face felt like it was on fire and like somebody had thrown acid on it. It swelled. My leg swelled and was in pain. I also had the same feeling to my scalp. I keep getting the feeling now even when I don't go in the sun. I also had to have my immunosuppressive meds doubled. I have noticed more of my hair coming out, sore spots on my scalp, and my teeth extremely sensitive and painful. I am not sure if this is meds or disease. Has anybody else experienced this?
Latasha,
I'm sorry you are going through this. Definitely keeping you in my prayers, and I'm glad you are back!
i am praying for you to latasha, i am so sorry you are having to go thru this pain and suffering, wish i could take some of it away from you just keep on keepin on, hugs, kel
Latasha, you are in my prayers. I have never had this either. My best to you.
Sounds like a combination - the sun may have touched off the beginning of a flare and the increase in your immunosuppressant may be causing side effects. Did you wear a sun hat and cover up when you were in the sun?
I went for a walk with my kids and our 3 dogs last week and it was very hot, sunny and windy. I wore a sun hat, but as soon as I got out of the car the wind blew it off my head and onto the ground. I couldn’t wear it after that because it got dirty. I break out very easily, so I wasn’t going to wear it now. The walk lasted about 30 minutes in 90 degree weather with no shade from the sun. We found a shady spot after the walk and rested. That’s when my face began burning very badly like you described, on fire and acid. It itched, too. I told my kids and we went home a little while later. When I got home I looked in the mirror and noticed my face had red blotches on it and I had red circles under my eyes. I looked very sick. I washed my face to calm the burning. I felt so tired and went to sleep and slept for about 5 hours. When I woke up the blotches were gone and my face felt better. The red circles under my eyes were gone, too. I thought the medicine I use on my face (epiduo) combined with the sun was what caused the reaction. Epiduo specifically states to avoid prolonged or excessive exposure to direct and/or artificial sunlight while using this med. plus, we are sensitive to the sun because of lupus itself. I can’t use sunblock on my face because everything makes me break out. That’s why I normally wear a sun hat, to protect my face. I’m going to add some string to my current sun hat so the wind won’t blow it off my head next time. I hope you start feeling better soon. Keep the faith.
Oh Latasha I know how you feel about giving up but God is not finished with us yet. I am so glad to have the chance to talk with you. take care
You are in my prayers. Have you had your Interluken 6 level measured? My daughter had similar symptoms and had a high IL 6 level. Hugs. Carolyn
My scalp has heated up like that but it didn’t last long. And every time I get even a small flare my teeth ache and play up. My rheumy said its just part of your body being under attack by lupus - even your teeth can hurt. I hope you start feeling better soon. Hang in there!
Yes Latasha! I get that too. Plus burning in my mouth. It is Lupus flaring. The only thing that helps me when this happens is to increase my steroids temporarily. Sometimes my rheumy gives me shots and sometimes he gives me a medrol dose pack.
My personal thought in this exact scenario is that I was starting a flare to begin with because other times I can be in the sun and not have such a violent reaction. Not sure if my theory is right though. It just seems so strange that sometimes I can’t even be in the sun 5 minutes without scalding my skin and other times I can be in it for an hour (with sunscreen of course and a hat) and I am okay.
Be sure to tell your rheumy so you can get a temporary steroid increase to help get you through this. These flares also seem to be longer in duration. Especially when my hair comes out and my scalp hurts.
Praying for your relief soon! -Hugs Tina
Hi Latasha! ,hope that you feel better soon-smile. Those things that you are going through , is related to Lupus and wanting to die comes with it(lupus). My exp. when that happened the first year , every time I went outside even in the shade, I felt as though I was a burning fire. Not forgetting that my face exp., the Butterfly flare for the first and I wanted to take all my meds., and just die. But some how God always take that thought, and forbid us to carry that out, so we are forced to deal with this Lupus stuff , which I wish I could put in a box for whatever day I want to take a break . There is something crazie living day to day Not knowing how , or what , when, and for how long the flares will last ! So to sum this up God knows that we are special people and are able to handle this. Let’s make him Proud and do what we can to make him HAPPY!!! We can do all things with the Faith of Jesus and Jehovah God. Take care and get some rest things will be okay soon…Beverly L.
Praying for you"
So sorry to hear your Lupus & MS are flaring. I'm very sun sensitive as well. I use a 45-50 sun block & try to stay out of the direct sun. My hair falls out a lot too. I take Vit D for low level do to not being in sun. I take Keratin for my hair. Hope you feel better soon. Will be praying for you. Don't get discouraged. God Bless
Hi Latasha,
Sorry you have been going through so much.
If I'm in direct sun, my skin burns in a minute--only go out at dusk or night time. I wear spf 50 hat if I have to go out early in the day and am completely covered. I also had some precancerous spots removed from my scalp. When you asked if it's meds or the disease, it's both.
Been going through rough stuff too. Continuous back-to-back infections because my immune system is so suppressed.
Every day is a blessing. We've got to hold on.
This happened to me the first time I had a very bad flare. I wasn't diagnosed at the time and I thought there was something wrong with my mind. I was getting sensations of sores on my scalp and burning sensation and pain in my face. At the time there were no sores or facial rash but I felt it, I kept describing it to my doctor but they blew it off. It was a month after that, that I began getting the lupus rash on my face and under my eyes were swelling up like I had been beaten up. I started documenting everything in photos and video. I have not had that sensation again. It had followed after a severe headache that lasted about 5 days. I was having problems walking and balancing also. They tested me for MS because they were symptoms. Im so sorry that you are feeling so awful. I always wondered if anyone else experienced that.
Hello all, I’m not as sun sensitive in a lupus perspective, I’m pale so I’ve always avoided long sun exposure. But I too get scalp sores and they get worse in the warm weather, I’m getting hats! Thanks for all the posts, I know that I’m not alone!
The sun has been horrible to me too this year. I can tell you, some medicines and soft drinks can rob you of
calcium. Try Crest Pro Health. My teeth are uber sensitive and it really.has helped me. Best of wishes dear.
Awwww Thank you guys so much for the support. I ended up back in the hospital this weekend. My teeth and scalp were warning signs that the disease was flaring again. I ended up swelling and had bruising all over. When ER attempted to access port, my blood clotted up in the tube. So its affecting my blood again. I still am refusing that 13th hospital stay. So I got a treatment there. My teeth have stopped hurting & my scalp is not so bad anymore. I still have a ways to go but I am hopeful. My doctor called me today which is a new thing normally the nurse calls. I think she's getting worried too. I told her that I know I need to be in the hospital but I just cnt do it right now. I have no control over my body I guess I'm trying to control the one thing I still can. I am all smiles & still trusting God for healing. Have a blessed night everyone! :-)
My thoughts and prayers are with you. May God bless you and heal you with healing hands. Keep on smiling!
Hi, yes at sometime or another some of us have been through all or most these situations. But it good that we all can have the comfort of venting to people that won’t judge us when we try to explain how we feel. I think this on line site is very helpful, I enjoy it very much…Beverly L.
JAZZYDIAMOND7 said:
This happened to me the first time I had a very bad flare. I wasn’t diagnosed at the time and I thought there was something wrong with my mind. I was getting sensations of sores on my scalp and burning sensation and pain in my face. At the time there were no sores or facial rash but I felt it, I kept describing it to my doctor but they blew it off. It was a month after that, that I began getting the lupus rash on my face and under my eyes were swelling up like I had been beaten up. I started documenting everything in photos and video. I have not had that sensation again. It had followed after a severe headache that lasted about 5 days. I was having problems walking and balancing also. They tested me for MS because they were symptoms. Im so sorry that you are feeling so awful. I always wondered if anyone else experienced that.