Hi do any of you have emotional issues when you get overheated or out in the sun for long periods. Jenna came home from school today(they had a outdoor play day) Since she got home she has done nothing but cry about every little thing, no one likes her, her daddy hollered at her, I hollered at her, its like she is making stuff up in her mind. She has the maylar rash and her nose is just running.
I'm sorry to hear about Jenna. Would it be possible to discuss with her school or teacher that she cannot be in the heat/sun? Maybe a note from the doctor to reinforce?
I'm extremely sun sensitive. I get the rashes but I also get fever, nausea, chills, and fatigue. It's very similar to suffering from the flu and I know that my emotions are all over the place. I usually just want to be by myself because trying to talk or interact with someone just makes me feel worse. If she can tolerate it, I would give her a cool rag to use on her face and body. She may feel better doing it herself (I know how 4 year olds are :) ). Sounds like she needs to rest. Poor thing!!! :(
Aw, I hope she is feeling better soon. It is probably hard for her to express how she feels, being so young. xx
Thanks guys. Ive talked to the teacher and the school nurse they know about Jennas condition and that she cant tolerate the heat, but it gos in on ear and out the other. That whole she dont look sick thing. And now she is on plaquinil and I dont think you are suppose to be in the sun with that. Thank goodness school is almost out. Hugs and Kissess Jonnell and Jenna
Is it possible that the overheating and or sun has caused a migraine headache?
It could be she does complain a lot of headpain.
Does overexposure to the sun cause migranes in sjs?
Hi there
Poor little thing, sounds like she is having a miserable time of it. If I get too warm, or spend too long in the sun it can make me feel pretty lousy too so have to be careful. There was an article in a UK magazine a few weeks ago about a lady who goes stir crazy from the sun/heat who was eventually diagnosed with lupus, and I know a lot of SjS sufferers have very similar problems. It must be so hard for you to try to explain to a young child who wants to play out and have fun with all the others about her limitations. Try and make a game out of staying cool with wet flannels, here in the UK we can buy something called a chillow, which is like a pillow but has a special lining you fill with cold water and it remains cold. Fab for hot flashes so may well help her too as she can hug it close to her body to cool down.
Wen x
Wendy, thanks for the advice, im going to look into that pillow. Hugs and Kissess Jonnell and Jenna
I am retiring from teaching this year. The heat drives me crazy. My face get red and I become so tired that I can't function. That eliminates the outdoor time for me. Suggestion: Have the doctor write on his RX pad that Jenna can not be in the sun for long hours. Don't know where you live but in US the school must follow the doctor's orders. I teach special education. If you have any connection with that, the law must be followed. Good luck. Hugs to you and Jenna. Redetha
Just to let you guys know I ordered one of those pillows for Jenna Chillo(on line) Ill let you know how she likes it. Thanks for the advice about the teacher and school. Hugs and Kissess Jonnell and Jenna
Jonelle, i really believe that this complaint does make one very emotional indeed..
I can cry so easily now, and I know half the time it's just me being sorry for myself.
.I also get so easily irritated with my OH, who I feel sorry for at times, as he has his own problems to deal with..
It's when I visit this site that I feel guilty , reading about those who are so much sicker than I am,
So remember, It's a lot for us grown up's to deal with, let alone your little one to cope with..
Bless Jenna, hugs Dolly.x
Dolly, I think the hardest part is not being to do anything about it. There is no miracle cure with SJS u guys just grin and bear it, nothing really makes you feel better. That is the depressing part its like having the flu everyday. No matter how I try to fix things for Jenna I cant, I can just love her and try to make it easier for her. Thank you for all the hugs and well wishes for her. It makes us feel better. Hugs and Kissess Jonnell and Jenna
Jonnelle,
I hope Jenna gets better. Actually I've read that Plaquenil makes us more sun sensitive. Ask your Dr. that factual info should make the school nurse take notice.
Even without that fact, Most of use Sjoggies can't tolerate the heat and sun at all. I've been that way as a child. (I also remember the fibro symtoms early.) My mother kept me out of the sun whenever possible because she noticed I had trouble. AFter an hour in the sun, I have breathing problems. Not to mention that my fair skin would have blisters by then.
Good luck to you, Jenna and all your family who are trying to support her.
Coopwall (in Sunny New Mexico--i never go out any time of year without a hat!!)
When it's hot the heat feels like it just wilts my body. I feel drained and really miserable. Poor Jenna, too bad that she has uncaring school personnel. In our schools, the kids all are miserable. They don't like to turn on the air conditioning because of the electric bills incured. And 30 students in a class make it hotter and smelly, or so the teachers have said.
Thats totally understandable. The sun and heat just makes me feel grumpy and its just a really weird exhausting feeling. The sun to me is like acid on my skin. Also, someone else mentioned Plaquenuil and sun sensitivity and its true. You cannot be in the sun while on Plaquenuil.
Quote from: jonnell on May 22, 2009, 04:53:58 PM
Does overexposure to the sun cause migranes in sjs?
It has caused them for me. For me it is both overheating and bright lights. Triggers vary from person to person but once I realized I was getting migraine headaches and I had a list of known triggers I was able to identify what triggers them for me and I am a whole lot better off now.
Tuckerdog
I realy would like to know what it is about the sun and autoimmune disorders why the sun affects people so bad, has any research been done on that. Thank you all for the care and concern for Jenna. Hugs and Kissess Jonnell and Jenna
My Endo doc told me that my thryoid controls how my body controls heat and cold. When my immune system killed my thryoid, I can no longer regulate temperature. Metabolism is a thing of the past for me. When I get hot, I can't cool my self and when I get cold I can't warm myself. Hot baths and cool baths are the only way I can seem to control my temps.
Also my normal body temp is 96.4 instead of 98.6. Some times when I am getting sick it goes down instead of up. Face it, I'm backwards! lol :-\
Sassiecat....thats weird that you doc said that. My docs (as well as my own research) explains that it is your autonomic nervous system that controls and regulates heat and the processing of heat.
Steve
Steve,
I really never questioned it once the doctor told me. I used to complain of always being too hot and was freezing my family out. Then I started complaining it was too cold and was cooking them. It seemed that my internal thermometer was broken and the answer seemed to satisify me. I'm curious now and will look into it.
Thanks for the info!!
Sassie
Jonelle, I fully understand the hopelessness you feel for Jenna when she is so sick..
.
I felt that with my Daughter who suffered dreadful allergies, particularly excema as a child..
She was taunted at school and it ruined her teenage social life and still can upset her...
Has Jenna had her thyroid checked out. That can cause body temperature changes..I too suffer badly with heat and coldness, which I am sure is due to the SS... as my thyroid test showed nothing.. it's the pits !!
Bless Jenna, you too, Dolly
Jonelle-
I'm so sorry to hear that Jenna's having a hard time. I know that when I get really uncomfortable from this "gift" as Pooh calls it, I get weepy and cranky. It's only recently that my hubby has learned to just let me vent and offer a hug or supportive words.
I have to be very careful about being in the sun as I can trace several of my flares back to sun exposure. Even being in the car, I have to be careful to remember the sun screen on sunny days or by the time I get where I'm going, I'm flushed and have a raging headache. Not a migraine for me, just a raging headache that my rheumy has said is from my Sjs.
I hope the doctor will write a note for Jenna, and that her teacher will be smart enough to come up with some fun activities she can do inside, and maybe even let a friend stay with her occasionally. Does Jonell's rheumy have any literature on Sjogren's that you can give the teacher and school nurse? If not, the Sjogren's Foundation does have brochures available. I just checked my file, and I have 2 extra copies of "Questions and Answers about Sjogrens" that you're welcome to. You can just send me a private email or email me off-list if you'd like me to send them to you.
Good luck and please give Jenna a hug for me,
Tracy
Dolly, Jenna has had her thyroid checked it was ok. I think steve is right Ive done some research on the neuropathy and Jenna has alot of the symptoms. This disease is so frustrating. Tracy, Thank you for the hug for Jenna, This is a learning experience if nothing else. Thank you for the advice. I am trying to start a group on facebook at http://groups.to/sjogrenssyndrome if either of you are interested. Im trying to get people to put some posts up of there stories. Feel free to take a look. Hugs and Kissess Jonnell and Jenna
If you live in the US, then Jenna can qualify for special education guidelines under IDEA...since she has a chronic illness. You should investigate this. Also, have your doctor write to the school and give info to school nurse...Keep a copy for yourself of everything you do...They have to follow what the doctor says. Hope Jenna feels better. From this teacher, let her know that some teachers make plans for each student individually. No two students are alike. I have always looked at each child's needs. Sometimes it is hard to do but it can be done. Keep pushing forward with it. Wish I had been Jenna's teacher. Hugs. Redetha ;D
I didnt know that thank you my son is in spec ed for PDD(pervasive developmental disorder) Feel free to join by site address is up in a earlier post, Jenna and I need all the friends we can get. Hugs and Kissess Jonnell and Jenna