went to my doctor today to ask about Brain Fog and he said he has never heard of it, well I have got it/had it for a few years, anybody esle

[harrywebb1]

had this experience with GP?

[Wendy39]

Yes, unfortunately! I'm sorry to have to say that my experience so far is that your average GP knows virtually nothing about Lupus. I have brain fog issues, ie memory problems and difficult to concentrate at times, not helped by headaches, dizziness or nausea. I have had a sore throat for months and my GP didn't know if it was a symptom of Lupus or not. I ended up having an appointment with ENT and camera up nose/down throat to confirm it was probably Lupus. Have you got any books about Lupus that you could take to your next GP appointment? I'm sure I've read somewhere on here or in the Lupus UK information that they have an information leaflet for GPs. Good luck.

[kate47 in reply to Wendy39]

Lupus UK have a book specifically written for doctors. If you email them with your docs name and practice they can send it to them. My doctor has found it very helpful x

[Whathappned]

Yes, I am always getting brain fog. It comes and goes but mainly when I'm trying to keep going and I should stop. So that's great when I'm at work. I ended up dropping a days work because one day off in the middle of the day wasn't enough and the fog took over quicker. I work in a GP surgery and constantly struggle. I think they just think I'm thick and I'm useless at communicating at times. I'm not sure if they know that it's all part of the Lupus (GP's included). Some days i find i cant think and make decisions whilst other times i find I just talk rubbish with the wrong words coming out all the time. Assure him it's a known common symptom( and Suggest he updates his knowledge)

[Barnclown]

Good question!

I think you've got some good answers here!

Last year when I stopped calling it Brain Fog & started calling it Cognitive Impairment my medical contacts suddenly seemed to Wake Up to what I was trying to explain to them...and we adjusted my treatment plan....hooray guess what: the meds I'm on now have reduced my cognitive impairment more than anything I've done all my adult life suffering from this commonplace symptom of lupus & most other autoimmune conditions (hypothyroidism, RA, crohns, diabetes etc etc)

[loretta1106 in reply to Barnclown]

What are the meds?

[Barnclown in reply to loretta1106]

I feel I gotta mention that my version of cog imp occurs in a sort of 'complex' with chronic fatigue & vertigo symptoms, all of which flare & subside together. I tried flippin everything in the way of lifestyle management for YEARS to cope with these symptoms & other typical lupus stuff, including emergencies, before my infant onset lupus was finally recognised & treated 3 years ago. I'm 60 now.

At first, Rheumatology put me on 400mg hydroxy (plaquenil) daily which does reduce some symptoms but not those of my cog. imp. complex

2 years later, rheumatology & my gp got me to try 4 week low dose oral pred tapers (starting at 10mg), 3 of which so reduced my cog imp complex that rheumatology then decided to try me on myco starting this past January....1000mg myco mofetil daily seems to be my therapeutic dose....myco has consistently reduced my cog imp complex symptoms as well as other symptoms that hadn't responded so much to hydroxy....6 months on from starting myco, I wake up ever morning amazed....who knows what will happen next....

Hope this helps

[loretta1106 in reply to Barnclown]

Thank you. It does. I am on warfarin, Plaquenil (brand name of hydroxy) and Lipitor and find that at times I also have brain fog but thankfully not all the time yet.

[Barnclown in reply to loretta1106]

Not all the time is good! Seems to me you're doing things right...pacing yourself is so important

Do take care...one step at a time etc

XO

[loretta1106 in reply to Barnclown]

I really have to remember that--one step at a time. Thank you.

[adrian_holland]

I have a question for you.

Taken from my symptom diary;

Didn’t feel well enough to drive especially as driving made me feel sick and unsafe the other day with me having problems with visual perspective and special awareness, so partner drove. For the first time ever (I think) as we were swooping in and out of villages and the deeper field of view moved against the foreground I started to feel sick and apprehensive.

What is this? I used to suffer it many years ago when driving up to and back from Scotland, as the mountains moved around in my field of vision, but have experienced it very rarely since. I used to put it down to tiredness but is it vertigo or agoraphobia or something?

[mstr]

Hi, yes I find lupus brain fog quite hard at times. I know my concentration levels are not what they were. Yesterday when I was driving to pick up my prescription from the chemist.....twice on the 1 mile journey I had to think 'where am I going'? I also went the wrong way when driving yesterday when I knew I was going to the local park....doh!! So yes I find it is a part and I can often do one thing and I have to concentrate solely on that. For example I just had to turn the news down on TV so I could write this post as it's difficult to concentrate on both. For me minor flare ups even and fatigue makes it worse......so in the mornings I try to have peace and quietness as that stills my mind and saves up my energy for when I need it. I am at the rheumy today so plan to ask about the fatigue element again as for me although it is not as bad as in the early days (when I could have permanently been horizontal) it is still there (maybe it just never goes, or maybe it's just a bad day).....I find there are a lot of 'maybe's' with this condition anyway. To answer your query though it is most definitely there.....I find if you look at the MS symptoms that says that cognitive impairment is a part of it.....so I wonder when GP's will completely also acknowledge that this is a part of lupus too. So....you are completely right! xx

[Judylynne]

Hi. I'm in the USA and have the same issues with brain fog. My GP refers to it but my rheumatologist refers to it as something more scientific. I can't remember what (my memory fails me). My employer asked if I was drinking or using drugs because of my foggy days. I found different info online and printed it up to share with him and others that ask. It is a real and sometimes scary thing. I'm not sure how to control it other than not getting upset about it and I plan more rest until the fog clears.

[Cann]

I get brain fog when I stay too long at the computer, the weather is thundery, I travel too long in the car or I eat too much for the amount of exercise I'm doing. I link it to inflammation in my gut/gut flare-up as that is my weakest point although get lots of trouble in other parts, too. Sometimes a walk in the fresh air can help away from traffic fumes. I just try everything because I don't think there is a cure for it, unfortunately.