overheating

[Billydude]

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.   

[tuckerdog]

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

[jonnell]

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

[SassieCat]

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 

[Billydude]

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

[SassieCat]

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

[Dolly Dimples]

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     
                                                                     
                                                                     

[ktfabian]

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

[jonnell]

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

[Redetha1]

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

[jonnell]

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