Memory problems are a fairly common symptom experienced by patients with lupus or Hughes syndrome (anti-phospholipid syndrome). The experience is often referred to as brain fog or lupus fog. Brain fog can vary from subtle (“I couldn’t remember what I had gone into the shop for”) to severe memory loss. It can also affect the person’s ability to speak (words can become slurred) and write. The cognitive problems are often worse during flares.
Lupus doctors are now beginning to realise how common and important this aspect of the disease is, however there are still many physicians who may attribute the symptoms to depression, stress or difficulty coping, rather than to lupus. Any patient who feels these symptoms are a major feature of the disease requires a full neurologic examination, possibly including MRI, as well as testing for Hughes (anti-phospholipid) syndrome.
LUPUS UK has some information about lupus, the brain and brain fog available;
- Our factsheet, ‘Lupus and the Brain’ is available to read at - lupusuk.org.uk/images/pdf/1...
- A few books which contain some case studies and information are also available;
• The Lupus Book by Dr Daniel J Wallace - lupusuk.org.uk/lupus-uk-sho...
• Hughes Syndrome – A Patients Guide by Prof Graham Hughes - lupusuk.org.uk/lupus-uk-sho...
• The Brain and Other Animals by Prof Graham Hughes - lupusuk.org.uk/lupus-uk-sho...
There are some things that you can do to help improve your lupus fog symptoms. Here are our top tips;
• Stay organised
Keeping a daily planner can be much easier than making notes on lots of scraps of paper. Use it to make a manageable ‘to do’ list and consult it throughout the day. Many smartphones also have useful applications now which could be a handy alternative.
• Write everything down
If you get into the habit of writing everything down, then you won’t have to worry so much about forgetting something. Write down everything; appointments, birthdays…anything you need to remember. This can also be a good practice for Doctors’ appointments.
• Prioritise
This is also important to help manage fatigue and stress. Split tasks into things that must be done and things that can wait, then just do the things that must be done.
• Keep good habits
Taking naps when needed, avoiding stress and ensuring you get enough sleep at night could help you to relieve brain fog symptoms.
• Keep your mind active
Playing word and number games such as crosswords or Sudoku can help to sharpen your memory.
• Plan ahead
If you know that you are more able to do things at a certain time of day, plan your day so that you are most active around this time. Perhaps you can work out when you are most efficient by timing yourself doing an activity at different times in the day.
We asked you to share your tips and experiences with us. Here’s what you said;
- “I use the following tips when I have brain fog, particularly during a flare up:
1. I’m honest to family/friends that know the situation so they are aware that I am not thinking as I usually would. They can usually tell by themselves now, but I don’t feel so bad if I am upfront about it.
2. Write notes/lists
3. I try to keep conversations a little more low key/shorter and try to contribute to talks/discussions by putting in short comments without rambling on and losing my thread of the conversation.
4. When brain fog is really bad, it helps to go and sit in a quiet room for just 30 minutes. I find this calmness allows my mind to rest and head not to feel so foggy.
5. If there are a lot of people in a room, all talking across each other, then it can be very difficult to concentrate. I try to ensure I sit near to whom I am talking to. This is often the hardest situation I find when I am having brain fog.
6. I try to do relaxing, quiet activities when my mind is like this to enable it to rest. Peace and quiet when possible and if able relaxing music can take my mind off the brain fog.
7. I try not to get frustrated when I feel I cannot participate in discussions as I normally would. I am learning that the brain fog will ease up and I try to just let it pass over like a wave. When it has lasted for weeks it is frustrating, but it does ease.”
- “I use my phone to set reminders and make notes of things. At work I use post-it notes. I try to do things that need writing or thinking about earlier in the day, as I find that my cognitive abilities get worse as the day goes on. At work I try to take some time out at lunchtime and not have to try and keep up with understanding and interacting with people.”
- “I use a big wall chart, diary and reminders on my phone. It doesn’t always work, but it’s better than nothing. I also do lots of puzzles.”
- “I use post-it notes and a whiteboard. I’d be lost without them. My hubby fumes at me ‘cause I ask the same question over and over. By the time he’s finished answering I’ve forgotten, but my long term memory is excellent. I also eat walnuts which are meant to help.”
- “I make sure I have a calendar that I can clearly write appointments, direct debits from the bank etc. on. I also use notes – I write a post-it note and stick it to the kitchen cupboard door that has the tea and coffee in, so first thing in the morning I see the reminder.”
- “I have a couple of different pads and a diary. I write out important things I need to remember to do, then highlight anything urgent – that way it jumps out at me. I also write down at night anything I may need to do the next day so I see it in the morning. I now try to remember to close windows and doors half an hour or so before going out. If I leave them to just before going out I can forget! I have also learnt never to make major decisions when I am foggy. When I forget what I am saying mid-sentence I simply say to whomever I may be speaking to that I have forgotten. I also find a bit of tranquillity helps to clear the head and soothe the senses.”
- “My fog has been considerably reduced by going [b[dairy-free. My gastric upset cleared too.”
- “…as many of my issues are verbal, I also ‘work around’ the word I can’t say, restructuring my sentences real time to try to not get caught on words.”
- “..thinking out loud eg, if I walk upstairs to get something, I’ll sing to myself ‘Upstairs to do the (whatever it is)…’ and I just keep repeating it.”
- “I use the brain tonic Gotu Kola herb, known also as brain food. I find it is really great for me. It means my brain functions better, is sharper in its thinking processes, my memory is better and the fog is non-existent these days.
Taking Ester C, slow release vitamin c three times daily helps clear the ‘dull brain’ particularly if I’ve eaten something not good for the brain.
Another herb, withania (also called ashwagandha), as a tonic helps by boosting brain function, being an immune modulator and gives greater energy.
Fish oil capsules make a noticeable difference when I take them, so does increasing the number of times I eat oily fish in a week. Increasing fresh greens is also helpful.”
- “When I forget a word, I go through the alphabet to think of the word, that usually helps. Or I picture in my mind the object or person and it might take a while, but it works for me.”
- “My brain fog has been massively helped by having an iPhone – it’s on me all day. Every time I think of something, I write it in the notes or put it in the diary bit and set bleeps to remind me in time. Each morning I read the diary. It’s got all my meds and all my regular commitments and then odd reminders too like, go to the GP, or order coal. It bleeps at me all the time, so I think my brain could go on holiday and my life would still work. The flip side is that you must back it up regularly or life grinds to a halt when you drop the jolly think in the loo, as I did in February.”
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everybody that submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article.
If you try any advice from this article and find it helpful, we’d love to hear about it. Please also let us know if you have any other tips to share.
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