Running on half a brain

I'm so exhausted physically and mentally. It's been 5 yrs diagnosed with sle and 13 yrs fibromyalgia I don't like it. Lupus took me thru the mill and back before showing itself. I have a history of pericarditis, pleurisy, ckd, hypertension, chronic anemia, vitamin d deficiency, bipolar add/adhd and the list goes on and on. every diagnosis came with medicationEvery 3 mos I f/u with my rheumy it's the same thing. At one point I was happy thinking my esr went down by 5 points. Rheumy smiled and said it needs to go down another 100 pts to feel better there went my happiness.My pcp Dr and psychiatrist Dr. Passing the buck on writing for prior authorization for some of my meds. The main medication I need to keep me focus and functioning I no longer have. So now Im Scatterbrain doing a thousand different things and completing nothing. Its so frustrating because at the end of my day I end up with swollen ankles pain in both legs and nothing accomplished but another flare and severe headache.

I’m sorry you are going thru so much my prayers are with you. I just posted a question of what you have. So I’m thinking you can help me. My niece has Fybro she was diagnosed at 17 is now 19 and told me she will likely get LUPUS which I have SLE so from your diagnosis is that more than likely to happen to her? Or vise versa I will end up with Fybro? I will see my Rheumy at the end of this month and as you can imagine I just want to get some kind of insight on the matter.

Wow you’re going through a rough stretch! Hope it gets better soon!
What med helped you think clearly? I live in a continual lupus fog which does nothing to improve my lackluster job performance. I have a disability exam tomorrow, I think it’s going to be difficult to “prove” my brain is half of what it used to be.

I’m so sorry you are experiencing all of this. Just know we are here to listen. I can relate on the fog being so thick! It literally took me a minute the other day to name my place of work! It’s awful. But be your own advocate and don’t let those doctots pass the buck.



Nikki said:

Wow you're going through a rough stretch! Hope it gets better soon!
What med helped you think clearly? I live in a continual lupus fog which does nothing to improve my lackluster job performance. I have a disability exam tomorrow, I think it's going to be difficult to "prove" my brain is half of what it used to be.

The medication that helps me focus, and think clear to process things is adderall xr . While attending college, I had a biology test in class my mind went blank, broke into a sweat and had a panic attack. the counselor recommended that I should see a psychiatrist who could do testing. results came back from the test and I was diagnosed with dyslexia, add/adhd. My psych prescribed the adder all and my brain could function without stressing to remember words, name or places. And the headaches go away. My rheumy Dr knew I was always fatigue, so he requested to increase the adder all to twice a day so I could try and complete an 8 hr shift. i worked 6 months with adderall while my health declining. 40 hrs a week to 16 hrs a week, fmla ran out, terminated. The lupus enhanced my learning disability, the adderall gave me my ability to file for my ssi, appeal the denials, speak to the hearing judge. It took 4 yrs but I did it and got awarded my ssi. and deal with all my physical, mental and learning disabilities. Now without it my comprehension is real bad, easily side tracked, and severe headaches.