Hello, I am new to this board and have found everyone here to seem so kind and encouraging. I am still listed as having undifferentiated connective tissue disease. My worst symptoms are neuro related. My rheumatologist (as well as former rheum) say I likely have CNS involvement affecting the cerebral spinal fluid. I get brain fog, my head feels swollen at times, headaches, head pressure, very bad lightheadedness even when just sitting and doing nothing, vision goes black, confusion, and severe brain fatigue. Usually 20 mg prednisone takes care of a flare but not this current flare I am in. My MD increased my prednisone to 40 mg for a few days hoping it will help but I can't get the rest my brain so desperately cries for as I'm still exhausted having to go to work every day as I work full time and the work day goes on as usual despite me being in a flare. Any one else dealing with anything similar or having any coping techniques?
Welcome, Lilac. I am not dealing with this but I will pray that you will get answers and relief very soon. Gentle hugs!
I have CNS lupus. Please feel free to contact me but know it gets better! When I first went to my rheum, right before I was diagnosed, he now says I was honestly like a 94-year old with dementia, psychosis, severe headaches, etc. And keep in mind I was going to Stanford so it wasn’t like that was my normal…since then I’ve had strokes, meningitis, my MRI shows lesions and spots indicative of CNS lupus, I’ve had pseudo tumor cerebri, it attacked my autonomic nervous system so at times my hr/bp/temp are way too high/low and digestion in my stomach and small intestine is damaged so at times I have to be on tpn. But like I said things get better, I’m on the best treatment for me now and still working towards my goals, just with a more creative approach that makes it even more rewarding! I’m actually teaching myself three foreign languages at the time. I’m not perfect and working to get to a good enough physical baseline but it’s waaaay better than I was (not remembering my last name or dad’s cell number, or going into comas). Anyhow, with right combo you’ll feel more secure about the wolf you ARE conquering! Xoxo feel better!
Hi Lilac
Welcome 
I just started seeing a neurologist for many of the same symptoms. Prednisone and plaquinel have helped my symptoms. I have not been able to work for many yrs now. I recently removed gluten, dairy, all processed foods. This has made a huge difference in mental fog. I still have CFS. I will be getting results from test next I am not sure what neurologist will say.
Wish you a wonderful day!!
Hi, I go through the same thing. I take Rituxan infusions which help all the other issues but not as much the CNS mess. I see a great neurologist. I started taking Aricept which helps some of the brain fog as mine doesnt show so evidently on tests. I always show as fine on tests but always have such problems. I also have numbness and redness everywhere and burning sensation that hurts so bad. I may start IVIG soon which is suppose to help too. You are not alone. I did prednisone but it did not always help I am off it at the moment, but I am sure I will be back on it soon. I am going to cognitive therapy, you may want to try that, just so you do not feel crazy like I did. I work full time as well :-) it is tough but we all get through it. It comes and goes, we have good days and bad days. On the bad days take it easy and work hard on the good days. Hope you find the right combination for you, keep asking your doctors for help! Take care.
Hi, I’m just starting to deal with this. I’ve had horrible headaches for years that my neuro attributed to migraines but I know the difference between the two. These feel like my skull shrunk. I really struggle with vision issues, memory loss, difficulty finding the right words, and I don’t recognize places I see everyday. It’s very scary to be driving somewhere and not recognize anything around you. Oddly, I don’t panic, I just keep driving until I remember where I am. I know where I’m going just not where I am. I’m too young for Alzheimers (43) but my brain CT didn’t show anything other than a small cyst on my pineal gland. I’m currently undergoing tests to try to figure it out. Very frustrating. I can’t work like this as I get sooo tired and can’t remember how to do things. I hope you get answers soon. Gentle hugs, Annemarie
I would REALLY strongly urge you to use sick leave and/or disability and/or leave of absence under FMLA rights while you’re getting this under control. It is possible to work, even full-time, in many cases of lupus, but that’s when it’s controlled. You stand very little chance of getting it controlled while pushing yourself to keep up with life! I would say try sleeping 10-12 hrs per night, plus any naps you need, and doing self-care things like cooking healthy anti-inflammatory foods (if I have the energy, I find cooking can help me focus a scattered mind on my bad brain days!) Stay away from much screen-time and probably reading too, it’s a stress on not only your eyes but also the rest of your brain. Listen to music you like, Dance if you can Walk and move to the extent you are still comfortable. Or just lay in bed as much as you need, working on not judging it as “lazy,” but actually working very hard at getting better so you can return to your life at a better level of performance.
I would bet that would make the difference for your prednisone dose… Going from 20 to 40 is where you really cross the line on nasty side effects and harm over the long run. A higher steroid dose is the type of thing that carries you through as a stopgap, but is a vicious cycle that can’t solve anything without rest and recovery. If you do have CNS lupus (which would definitely have to get diagnosed before proceeding to this level of treatment… And time off from work will allow you to track symptoms better to see if it really is severe even while resting more), it’s commonly resistant to most standard treatments and Rituxan works well to control it (though it hasn’t been able to show that in clinical trials. But neither has methotrexate or a variety of other immunosuppressives used all the time… Trials are just fundamentally tricky because the disease is so varied, plus CNS disease is usually am exclusion from studies!) I’m sure by now members here think I get kick-backs from that company ;), but it’s really what took me from a point where a trip to the doctor or grocery store or exercising for a bit were each a “big day” for me that could only happen about two days in a row before I needed a day or two off, to now being back in school working toward a master’s in a new field (undergrad classes thus far, easing into school again after 4.5 yrs out and 1.5 out of life in general!) plus working half-time at a standing-intensive, physical and most of all mentally tiring job! Now my days “on” are 8-10 hours, though I still need the 2 days on/1 day off pattern (have it most weeks, Wed and weekends off unless I switch work to Wed to free up Mon.) I learned all my “patterns”, recipes for success and failure, during my active recovery period. Since you are currently able to work, I’d guess yours would be much briefer than my year and a half!
Best wishes to you, and please put your health first… Without it, nothing else can work, and your best chance to be able to keep working in the long run is to take care of yourself now. I argue that pushing through an “keeping at it so you don’t lose it” is a total myth (except for exercise! But your self-care time will allow more of this not less!) Hope I’m not intruding too much or too directive, but I really feel strongly that our work culture is what makes us so prone to health collapse in the first place, and totally impedes getting back to our best possible functioning. If you have a job you are worried will judge you as weak, undedicated, making excuses, first of all f-them! 
But really we all deal with that misunderstanding and maltreatment leverywhere we turn (for me it isn’t school or work but rather my family!) so you should quote that to the criticizers. I’m stepping back so I can truly recover and put my best foot forward again, because my job performance is important to me." It leaves you less vulnerable to explaining “how sick you are” when nobody cares to hear you.
Brynn
Also, use the little bit of book time you allow to read “How to Be Sick”, a Buddhist-inspired Guide for the Chronically Ill and their Caregivers by Toni Bernhard, a former lawyer and esteemed law professor who lost her career when she became a severe Chronic Fatigue Syndrome-sufferer (yes, part of this book is accepting suffering as a reality of life, some more than others, which dwelling on unfairness does not help, etc. while grieving for it is healing!) Fantastic help for not only dealing with but truly thriving inside despite having to accept a really bitter pill you never deserved.
Brynn....You give sound advice and are an excellent writer. I always look for and read your posts. Thanks so much for all your time and feedback to fellow "Lupans." LupanCatwoman
Thanks, reef! I appreciate it!
reet said:
Welcome, Lilac. I am not dealing with this but I will pray that you will get answers and relief very soon. Gentle hugs!
Wow, Tara! You have been through so much and have come so far! That is great! Thanks for the encouraging words,hope, and for letting me know I can contact you if needed. I so appreciate it!
Tara J. said:
I have CNS lupus. Please feel free to contact me but know it gets better! When I first went to my rheum, right before I was diagnosed, he now says I was honestly like a 94-year old with dementia, psychosis, severe headaches, etc. And keep in mind I was going to Stanford so it wasn't like that was my normal.....since then I've had strokes, meningitis, my MRI shows lesions and spots indicative of CNS lupus, I've had pseudo tumor cerebri, it attacked my autonomic nervous system so at times my hr/bp/temp are way too high/low and digestion in my stomach and small intestine is damaged so at times I have to be on tpn. But like I said things get better, I'm on the best treatment for me now and still working towards my goals, just with a more creative approach that makes it even more rewarding! I'm actually teaching myself three foreign languages at the time. I'm not perfect and working to get to a good enough physical baseline but it's waaaay better than I was (not remembering my last name or dad's cell number, or going into comas). Anyhow, with right combo you'll feel more secure about the wolf you ARE conquering! Xoxo feel better!
Hi Flower,
Sorry you're struggling with this too. I too have removed gluten and dairy, but not all processed foods. It's been two months. I'm glad it helped a bit for you a bit. Good luck with your test results!!!
Flower said:
Hi Lilac
Welcome :) I just started seeing a neurologist for many of the same symptoms. Prednisone and plaquinel have helped my symptoms. I have not been able to work for many yrs now. I recently removed gluten, dairy, all processed foods. This has made a huge difference in mental fog. I still have CFS. I will be getting results from test next I am not sure what neurologist will say.
Wish you a wonderful day!!
Thanks for the helpful input, Michela! Although I'm not glad to see others have the same problems, it's good to know I'm not alone in this and not crazy.
Michela said:
Hi, I go through the same thing. I take Rituxan infusions which help all the other issues but not as much the CNS mess. I see a great neurologist. I started taking Aricept which helps some of the brain fog as mine doesnt show so evidently on tests. I always show as fine on tests but always have such problems. I also have numbness and redness everywhere and burning sensation that hurts so bad. I may start IVIG soon which is suppose to help too. You are not alone. I did prednisone but it did not always help I am off it at the moment, but I am sure I will be back on it soon. I am going to cognitive therapy, you may want to try that, just so you do not feel crazy like I did. I work full time as well :-) it is tough but we all get through it. It comes and goes, we have good days and bad days. On the bad days take it easy and work hard on the good days. Hope you find the right combination for you, keep asking your doctors for help! Take care.
Hi Annemaire,
Sorry to hear you've got similar issues. Yes, so frustrating! I hope you get some answers and treatment very soon!
Annemarie said:
Hi, I'm just starting to deal with this. I've had horrible headaches for years that my neuro attributed to migraines but I know the difference between the two. These feel like my skull shrunk. I really struggle with vision issues, memory loss, difficulty finding the right words, and I don't recognize places I see everyday. It's very scary to be driving somewhere and not recognize anything around you. Oddly, I don't panic, I just keep driving until I remember where I am. I know where I'm going just not where I am. I'm too young for Alzheimers (43) but my brain CT didn't show anything other than a small cyst on my pineal gland. I'm currently undergoing tests to try to figure it out. Very frustrating. I can't work like this as I get sooo tired and can't remember how to do things. I hope you get answers soon. Gentle hugs, Annemarie
Brynn,
Your message hits home! I know I need to rest. Thank you so much for the helpful advice. So important to remember and I'm glad you are doing so much better! That is encouraging.
Faladora said:
I would REALLY strongly urge you to use sick leave and/or disability and/or leave of absence under FMLA rights while you're getting this under control. It is possible to work, even full-time, in many cases of lupus, but that's when it's controlled. You stand very little chance of getting it controlled while pushing yourself to keep up with life! I would say try sleeping 10-12 hrs per night, plus any naps you need, and doing self-care things like cooking healthy anti-inflammatory foods (if I have the energy, I find cooking can help me focus a scattered mind on my bad brain days!) Stay away from much screen-time and probably reading too, it's a stress on not only your eyes but also the rest of your brain. Listen to music you like, Dance if you can :) Walk and move to the extent you are still comfortable. Or just lay in bed as much as you need, working on not judging it as "lazy," but actually working very hard at getting better so you can return to your life at a better level of performance.
I would bet that would make the difference for your prednisone dose... Going from 20 to 40 is where you really cross the line on nasty side effects and harm over the long run. A higher steroid dose is the type of thing that carries you through as a stopgap, but is a vicious cycle that can't solve anything without rest and recovery. If you do have CNS lupus (which would definitely have to get diagnosed before proceeding to this level of treatment... And time off from work will allow you to track symptoms better to see if it really is severe even while resting more), it's commonly resistant to most standard treatments and Rituxan works well to control it (though it hasn't been able to show that in clinical trials. But neither has methotrexate or a variety of other immunosuppressives used all the time... Trials are just fundamentally tricky because the disease is so varied, plus CNS disease is usually am exclusion from studies!) I'm sure by now members here think I get kick-backs from that company ;), but it's really what took me from a point where a trip to the doctor or grocery store or exercising for a bit were each a "big day" for me that could only happen about two days in a row before I needed a day or two off, to now being back in school working toward a master's in a new field (undergrad classes thus far, easing into school again after 4.5 yrs out and 1.5 out of life in general!) plus working half-time at a standing-intensive, physical and most of all mentally tiring job! Now my days "on" are 8-10 hours, though I still need the 2 days on/1 day off pattern (have it most weeks, Wed and weekends off unless I switch work to Wed to free up Mon.) I learned all my "patterns", recipes for success and failure, during my active recovery period. Since you are currently able to work, I'd guess yours would be much briefer than my year and a half!
Best wishes to you, and please put your health first... Without it, nothing else can work, and your best chance to be able to keep working in the long run is to take care of yourself now. I argue that pushing through an "keeping at it so you don't lose it" is a total myth (except for exercise! But your self-care time will allow more of this not less!) Hope I'm not intruding too much or too directive, but I really feel strongly that our work culture is what makes us so prone to health collapse in the first place, and totally impedes getting back to our best possible functioning. If you have a job you are worried will judge you as weak, undedicated, making excuses, first of all f-them! ;) But really we all deal with that misunderstanding and maltreatment leverywhere we turn (for me it isn't school or work but rather my family!) so you should quote that to the criticizers. I'm stepping back so I can truly recover and put my best foot forward again, because my job performance is important to me." It leaves you less vulnerable to explaining "how sick you are" when nobody cares to hear you.
Brynn
Thanks, Faladora. I'll look into this book!
Faladora said:
Also, use the little bit of book time you allow to read "How to Be Sick", a Buddhist-inspired Guide for the Chronically Ill and their Caregivers by Toni Bernhard, a former lawyer and esteemed law professor who lost her career when she became a severe Chronic Fatigue Syndrome-sufferer (yes, part of this book is accepting suffering as a reality of life, some more than others, which dwelling on unfairness does not help, etc. while grieving for it is healing!) Fantastic help for not only dealing with but truly thriving inside despite having to accept a really bitter pill you never deserved.
Do any of you get where your brain actually feels swollen or some sort of increased pressure (not pain) when you feel REALLY foggy? I even get pressure around my ears like my hearing will go out. It's a very bothersome feeling. And when I sleep and have this,I'm so exhausted that I'm even exhausted in my dreams. What a strange condition this is. Do you know what causes this?
Lilac, I get that heavy brain feeling quite frequently. It feels like my brain is wrapped in cotton and I just can’t think. My eyes feel the pressure too. Sometimes drinking a large glass of water helps but not always. Napping is about all I can do when my head gets that bad. It makes my whole body feel heavy like I’m walking through oil or something. I’m scheduled for psych testing soon to see what areas of my brain are being affected. Hugs, Annemarie
I used to get the pressure thing too, and interestingly enough, when I had my spinal tap to look for conclusive evidence of CNS involvement (it was suggestive but not entirely conclusive), one thing I had was elevated intracranial pressure. Along with so many other symptoms that have improved with treatment, I don’t feel that one much anymore! And truly, most times I have mini-flares are from overdoing it, getting too much sun, or getting ill with some kind of infection. All of which are associated with venturing out into the working world…
A new symptom I had in the last few weeks was a transient episode (2 weeks or so) of dermatomal neuropathy (dermatomes are just the section of skin & body underneath served by a certain nerve.) It started off as burning hypersensitivity to gentle touch, including my clothes touching me (more like a sense of really irritating irritation rather than pain) along a really specific strip of my left lower ribs then spread out and slowly faded. I’ve also had rotating areas of numbness and similar irritation that were smaller or quicker to resolve, but all of them suggest potential for peripheral nervous system activity (the primary doc suggested seeing my rheumatologist for it rather than starting to look into the typical causes/treatments for non-lupans… Shout out to LupanCatwoman!) I also have had (undiagnosed) autonomic problems since I hit puberty, which is also peripheral nervous rather than central. Well, technically there’s the control-center for it in the brain, so it could be either central or peripheral based on whether it’s in the control center itself or the nerves doing its bidding (I studied neurobiology in college, hence the details!)
A question for Tara: first of all, I’m sorry to hear your CNS lupus was more advanced before treatment, and I’m so glad to hear it improved! Since you are/were in the Bay Area, I’m wondering if you by chance saw or knew of dr. Neuwelt in San Leandro (who does research on CNS lupus and is affiliated with UCSF.) I feel so lucky to have nabbed him as my doc, but there are really long waits for appointments! I’m sure Stanford has a great Lupus clinic too, so maybe you were there, or went to stay at home again… I had a stretch of that going back home to Seattle for 6 months.
Notes to all: I have also found removing gluten to be very helpful, and that slacking on it causes instant repercussions in brain fog or even awareness/level of consciousness and autonomic issues when it’s a large dose. Sun overdose does the same. The miracle-drug for me has been Rituxan, so that’s interesting it didn’t help Michaela! I also take two mood-stabilizing drugs for my bipolar pattern (it also runs in my family, so it may or may not be very CNS lupus related but often is… And it worsened when my lupus reared its head, then improved a lot when I started steroids, and even more with Rituxan!) They’re actually in the anticonvulsant class, so as an added benefit I’m protected from seizures (never had one anyway) and they tend to help with migraines to boot! Lots of brain buffering, I guess.
To those of you not yet diagnosed, it just depends on the doc if they’ll try treating based on symptoms vs. testing first, but according to my doc (see above in the note to Tara) they often don’t show things that aren’t already very apparent (MRI and neuropsych testing especially, though spinal tap can miss things the same way as our blood work can vary!) Those are the three tests though, CT isn’t very helpful, should be a brain MRI with contrast (most expensive), neuropsych testing (most time-intensive), and spinal tap (most invasive and painful.) All are a huge pain and expense, but worth it to know how aggressively you need to be protecting your brain from damage that can become permanent and severely debilitating! Early detection and management is a really great thing!