I’d really appreciate hearing your experiences. I was diagnosed with Lupus in 2022.
Six months ago I was feeling really well, I take Hydroxychloroquine and my bloods were looking good.
Over the past couple of months I’ve been feeling absolutely exhausted beyond explanation and have terrible brain fog. I can barely cope at work (only working 2 days). I went to my gp and had tests to check everything (apart from the usual lupus bloods) everything else was fine so I assumed that my Lupus must be flaring up. I saw my rheumatologist today and she has told me that my brain fog etc can’t be anything to do with Lupus?! She told me that my bloods were fine… but these bloods were done six months ago! After a back and forth conversation, I left feeling very lost and now have no idea where to turn. My rheumatologist spoke to me like I was an idiot. They have redone my bloods so I suppose I just wait for those.
Does anyone have any experience of brain fog etc being caused by something else? Does anyone have any tips or tricks which help them feel better?
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CharlotteGB
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Brain fog can be caused by many things - your underlying chronic/autoimmune condition, the medication are on, and your adrenals if they are struggling (depending what dose your medication is).
Hi Charlotte! I'm in a similar situation as you and I get the same response from my doctor. They look at tests from 6 months earlier and use those results when they talk with you. Lupus is more complex than that. As for me, I work at getting 7 to 8 hours of good sleep and try to exercise(even a short walk with the dog.) Those seem help with the fatigue. My cardiologist recommended more salt and that has helped as well. Hope you feel better.
yes I get that! Drs hard to see Got an appt after waiting 4 weeks only for Him to refer me re sleep clinic!
Feel like a drained battery and am now considering a private blood test. NHS is of no use because I had my annual full bloods done afer months ago and they were within nhs range.
Hi mate, I was diagnosed 2 years ago too and everything is still quite new with me also.
I do have the brain fog myself but on a lesser scale than you by the sounds of it but I get it’s frustrating and embarrassing too. I think it is just an unfortunate part of the condition because even without a flare up I still suffer from the fog and fatigue.
I know I’m not giving advice here but just letting you know that others experience it too and you’re not alone on that aspect of things.
I’m afraid that is how they are now, no one care about us patients anymore. They don’t listen or do anything. I find going for appointments depressing nowadays
I was diagnosed a couple of years ago too and I am finding my way with it all.
I’ve not been able to get rid of the brain fog and like you, feel like a drained battery, I have random swelling too.
Before diagnosis I have always suffered with allergies and have been reading lately that histamine can cause all kinds of issues, including fatigue and brain fog. I have taken anti- histamine in the past but not regularly. I’m going to ask my Rheumatologist about it when I next go as I think it’s a contributor for me. Maybe something to consider?
Hello Charlotte. I’m in the US and I do find my rheumatologist to be deficient in some areas of lupus expertice but not the issue of brain fog. I’m experiencing it right now and the last 2 weeks. Nothing has changed in my meds and I’ve not gotten too much UV rays or over exercised. I have experienced stressful times and probably eaten too much sugar/carbohydrates. I know this can induce brain fog for me. Fatigue seems to be brain fog’s best friend. You are not alone. This is a Lupus symptom. My diet plays a role as noted above and emotional situations cause something to go haywire. You are in good company. If your blood tests and meds and adrenals are all unchanged it’s just …..lupus. MM
Like you trying hard to get local doctors to take more notice and help. Last week I shared the Lupus UK webpage on Diagnosis with my GP surgery in an eSubmission now uploaded to my Patient Record.
I also included a link to Dr Kaul's talk on blood tests, which is a the foot of the diagnosis page. In the talk he says it is also important to listen to reported symptoms.
I have just posted on Goal setting as realise it is biggest barrier at the moment.
Hello my fellow sufferers. I've had lupus and all of the nasty gifts that lupus brings for decades. As for the brain fog, it is definitely related to lupus. I'm not in the UK . I'm in the USA so I'm not quite sure how appointments and referrals differ, but you may want a second opinion. Last week I had a few days where I wondered if I was having a stroke or something worse. I was in Walmart in the produce section trying to get a plastic bag from the roll and I couldn't! It wasn't broken. I was broken! I felt like there was a spotlight on me and everyone was watching. That just made me feel more lost. A clerk finally noticed me and pulled the bag out for me. When I tried to open it to put my broccoli in.....I couldn't do it! I was starting to panic a bit ! What the heck was going on? I finally licked my finger and pulled it apart as I blew into it. Such shame and panic! I left the store after that. I missed my street driving home and had to do a U-turn. I had several episodes like that last week. My Rheumatologist, Dr. Carl Gauthier, returned my call and calmed my fears. He said that I was experiencing brain fog. He sent me for labs that day and called 2 days later with the results. My ANA is 1:640! I didn't know it could go that high! If your Rheumatologist is going over old labs in a new visit talk to him about changing the schedule. I get labs done about 4 to 5 days before the office visit. At least he's looking at current conditions.
Thank you everyone so much for taking the time to respond and share your experiences. It's really sad to hear that these issues seem to be so common, and it sounds like rheumatologists generally aren't addressing it as a problem. Thanks again, it's not nice to hear that other people are experiencing the same thing but it's nice to not feel alone.
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