Fog

[smveit]

Hello, my name is Stephen and I was diagnosed with lupus 5 years ago (I am 38 now) I think I had it for longer, but I couldn't find doctors that would believe me since I am male and that is rare. I am having real problems of late with thinking of words and names. I guess "lupus fog." This is a new concept for me and was interested in advice.

[Barnclown]

Hello stephen...lupus brain fog is something almost all of us experience in one way or another...whether mainly related to our meds, or to our individual version of immune dysfunction & connective tissue disorder...eg in the decades before my infant onset lupus diagnosis was recovered, I experienced brain fog when I was tired (due to my lupus, fatigue happened to me more easily & often than it did to those around me...especially when I was under pressure & feeling excitable) and also due to the prescription NSAIDs + analgesics my GPs were prescribing which further fogged my brain 24/7 for years (while barely damping down my muscle & joint pain).

5 years ago when I was in my 50s, a brilliant rheumy recognised lupus was underlying the cumulative multisystem debilitation caused by decades without daily systemic treatment. We spent 2 years developing the combined therapy treatment plan which is now damping down my brain fog v effectively...but I still must lifestyle manage a go go: avoiding stressful situations & over exertion, pacing all activity including the mental 😉 Etc etc. I take long naps, meditate and generally go gently. At 63, I'm a lot older than you but now I'm feeling better than I have since my 20s thank to my meds....and my mental function has more resilience & stamina!

It's important you discuss your brain fog with your GP & consultants, so that its degree & persistence is monitored & documented, and the underlying cause considered. Eg. my version of brain fog seems to be part of a complex of neuro cerebral vascular symptoms affecting my whole bod

Am sure you'll get some great replies. Am glad you're here!

Take care 🍀🍀🍀 coco

[MargaretGail]

Hi Stephen, the best advice I can give is to not let it get you down. I replace words with the unlikeliest. .....I'm genuinely sitting here scratching my head looking for the right word - 5 minutes later - SUBSTITUTES! Your colleagues will get used to it, mine did and friends just laugh. You just have to laugh with them. X

[Paul_Howard Partner LUPUS UK]

Hi Stephen,

We published an article on our blog earlier this year with some information and advice about 'lupus fog'. You can read it at lupusuk.org.uk/coping-with-...

[Hidden]

Hi Stephen... I also get this problem..it is so frustrating & the more you become aware of it-the worse it gets. For me, the issue of forgetting words (& at times completely losing my trainof thought) is often an early sign of an upcoming flare. I used to really stress & get quite embarrassed about it but have learnt (with the aid of meditation techniques) to just go with it & accept that my vocabulary will be along the lines of your average lazy teen 🙄. I work as a receptionist in a busy office & seem to manage ok but have to write everything down & use a more methodical approach so everything doesn't get chaotic.

Although the lupus will always pull the rug from underneath us at times & we won't be able to stop that, I think getting enough rest, being realistic about what our own body's limits are with stress etc & recognising the sometimes tiny warning signs (that I personally have been known to just plough through)will help keep the flares under control in the long run.

At one point, when my memory & thinking abilities were at an all time low, I did have the antiphosholid test & was told to take aspirin on a daily basis..I have to say..it made a huge difference for me.

Hope some of this is of use

🙂