I am glad you and Barb have taken the time to speak of this. I too suffer from exhaustive fatigue. Besides the Lupus, Sjogren's Syndrome etc combo you can see below, I also suffer from Porphyria, an acute and skin form. I am affected by the sun from 3 darn diseases, Sjogren's I believe the sun sensitivity is from SSA antibody. I sit in the dark and wait for night to go out. So I never know whether it is day or night and messed up sleeping patterns we get does not help. I also am not able to take alot of meds that most people with lupus can. Porphyria is an iron overload disease and if the wrong med is taken, I am in iron-overload on the way to the local ER, who knows me by name.
So not only being tired, but living like a vampire, LOL, people don't always get it. My lupus almost killed me 3 years ago. Also the Plaquenil used for my Lupus/Sjogren's is a contributor for the Porphyria flares, but with out it I am much worst. The pain is hard to describe, because like everyone else here is mentioning, we don't look sick. I hate when people say well, you look good, unless it is a friend who understand that this day really sucks because I don't feel good, then when they say I look nice I know I do and I smile.
Speaking of understanding, when my Rheumie's PAC started seeing me she said you have one of the most difficult pain combinations I or he have ever seen. Lupus is already considered a bit less common, but then she couldn't understand why I was crying after being at an 8/9 out of 10 with pain levels for days.
I am thinking woman you couldn't make it a day like we do. Now I see my rheumie and he knows I have rare things. He is awesome. As for the hubby well, we are seperating right now. 3 years ago, when the Lupus was flaring, I lost the support of my job, friends, but not close family. My parents are awesome and I can call anytime to vent. I lost all but 3 good friends. It has taken me 3 years to get the friends that I have now who definitely understand. But it was lonely when all the others bailed. I also rid my life by choice of all negative people who could not support me. I can say my friends are great, yes they push me to do more, but only when they know I need to start exercising to recover and feel better. They know their limit or else. LOL.
I also understand of the spouse situation as stated, we are seperating. But without all of you here, I don't think I would make it some days. Even though I do not really post, I am always reading, and sending good thoughts everyone's way. This group made me realize I am not crazy, but a good person with a nasty illness. This is my family, and I hope you all will find the support you need, the strength to make it when people are not getting it, and that you all are well soon. Sorry I rambled.
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescript
ion 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.