Lupus - fog question

Hi there - just wondering if anyone has any experience of this lupus memory fog! I think that's what has happened to me recently and I'm struggling with it. Always had such a good memory and now I just sometimes can't remember things and really have to concentrate to get what I'm thinking. It's awful and just wondering if anyone with experience of it can offer any advice - thanks in advance

I was diagnosed with lupus (undifferentiated) last year and my main symptoms are skin problems on my face and neck, sore joints in my hands and feet, headaches and now this brain fog issue.

I have always had irritable bowel problems, which have recently got worse and i am wondering if this is now also linked.

I was put on tablets for all the skin and joint symptoms and took a severe reaction so am not on anything at the moment at all which is awful.

5 Replies

  • Hi Lee

    Sorry to hear that you are not so good at the moment. I hear you.

    I share some of your symptoms. It is too bad you reacted to the medication. Could you let us know what your meds were? Someone here may have had similar problems and can help perhaps.

    Vit D is my soap box at the minute. I had it checked and I was found defficient (well, that as well!) so I was put on a 5 day course of Vit D then one per month. It was only when I noticed that I was having recall and memory problems again that I put 2+2 I went back to GP and was checked again and I was low again. I then had one vit D a day for 15 days then one amonth which is on going. At the moment I am still feeling the lift I have noticed within me.

    So, whilst I can only share my experiences and mention that you may benefit from too, it is up to you if you want to pursue it with your GP.

    I dont think any doc has yet proved a correlation between the two things but I know how low I usually feel.

    If anything in this world can give us a little lift when we all suffer so much, I for one welcome it.

    Obviously, your syptoms etc may be very different from me so please ask your doctor. I am monitoring my internal liftometeor.

    Best wishes


  • Hi there the treatment i was allergic to was plaquenil i think?

  • Mine was worse than fibro fog. I spent days in bed with near delirium. Took hydroxy for two weeks. ALL symptoms gone, but heartburn was unmanageable. Finally obtained 15 days' supply of Plaquenil. Though cost is prohibitive, difference is night and day. No fog. Pain lines in my forehead and Sjogren's are history. Hope doc has discount coupins. From the States. Our pharma system is screwed. 2003_molly

  • Could you be dehydrated because that makes you foggy and forgetful?

    We don't need to feel thirsty to be dehydrated.

    I get very foggy when I need to drink, but I don't feel thirsty - just a thought - drugs are dehydrating to the body.

    I know you say you are off them, but may be your body needs to get them out of your system - do you have vegetable soups and I don't mean tin or processed ones - they are full of salt and sugar, dairy, etc. which dehydrate more and aggravates my autoimmune problems. I rehydrate with good liquids and no additives and water.

    Just a thought.

  • Yes I totally understand what you are saying. I've always had a very sharp memory and quick with brain function. Since being diagnosed and as my lupus has progressed I have noticed very bad brain fog. It's worse when I'm in a bad flare up. I can't always get what I'm trying to say out, and get distracted so easily. Like if I'm trying to explain something and get interrupted I will completely forget where I was or what I was talking about at times. I also forget what I was planning on doing constantly now and will mix my words up when talking. Very hard to deal with when you've always been the person who retains information. I also can't multitask well anymore. Like if the tv is on and I'm sending a text or talking to my husband I can only absorb information from one thing at a time now. I've learned that the only thing I can really do is slow down and concentrate on one thing at a time. It's hard and discouraging at times but it's the only way I've found to make less mistakes that I didn't used to have issues with. As far as the IBS thing I think they can be related. Lupus does effect our entire bodies. Before I got really sick I always had a super strong stomach and never had digestive problems. Now I do, the higher my disease activity and symptoms are the worse my stomach is. When in a bad flare it feels like all my intestines are inflamed and painful inside. It gets the the point I'm afraid to eat because it will make me feel unwell and then be very painful until I get it all out again. I don't have any advice in that department except that I just keep food intake to a minimal when it's really bad. Hope you find something that works for you soon. I know this is such a hard disease with so few answers. :(

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