Just wondering has anyone experienced memory loss or more to the point forgetfulness.. since being diagnosed with Lupus Ive missed appointments,forgot to collect kids, certain words im trying to say don't come to the forefront and if askedto get items for kids for school etc unless written down will forget.
Just wondering is this a side effect of plaquenil,or a symptom of the disease,or perhaps its a case that since diagnosis Ive allowed this disease to consume me mentally and things have just taken a back seat.
Also on a different note,my God. Its amazing when i tell people of my diagnosis everyone seems to know someone with it and they seem to be "fine ".. I find this so frustrating as I don't know if they are saying it to help or if I'm overanalysing thinking they doubt my pain. Has anyone experienced this?
Another day of pain and fatigue! In my bed now,definetly my favourite place to be these days 😂
Written by
Lupusfrustrated
To view profiles and participate in discussions please or .
I too suffer from short term memory loss. It's soul destroying as I'm constantly apologising to people because I have forgotten what I was talking about 5 mins ago, never mind yesterday. I forget why I walked into a room with my husband always telling me that the question have asked him, I have already asked twice before. I want to tell work colleagues so I get some understanding and support if required but scared in case they think I'm not up to the job! I was told what causes it, but guess what...I have forgotten! (Sorry for the rant but I was literally moaning about this a few hrs ago)
As for telling people about the condition, I avoided it long enough because I didn't want people to see I was a potential burden but I got over that and the people close to me have read up on lupus. The people who pretend to know lupus don't lupus at all, so I usually give the headlines of what it means.
You are definitely not alone. Bed rest can be the best medicine at times.
Keep smiling. Sending healthy thoughts and hugs to you.
Yes totally soul destroying. I was a very very organised person and didn't ever need to write any apps down as my mind was like a mini calendar so find this aspect frustrating. The kids saw the funny side at the start but now get a nit worried for me. I dont know how many times I've passed a turn forgetting where i was meant to be going. Other thing is with the pains I can do very little housework and again I'd have always been houseproud. Perhaps even a tad OCD and now I'm just about able to keep things looking okish 😃
PS My husband gets asked the same question over and over....
I have let all my beautiful plants/flowers in my garden die! It's reprogramming our mind to not care about things e.g. housework and gardening which, like you, is really difficult.
It's a common symptom of Lupus - usually referred to as Lupus Brain Fog. Lots of us suffer with it. You just need to find a way of dealing with it. Like you I find that writing lists help. Usually once I've written something down I find I remember it even if I don't have the list in front of me. Of course, having to deal with children doesn't help - so much to remember ! The most important thing to remember is that, in spite of this horrible condition, you are still YOU ! Don't let Lupus rule your life - fight back !! Good luck x
It is a very common problem with many autoimmune disorders and as Hazel says for you it is Lupus Brain Fog. And some of the medications don't help so you may get a double whammy.
There are ways of helping you cope - maybe your doctor to refer you for assessment and training?
Yes, 100% I get forgetful and at times this can cause anxiety but I find ways to manage it.
One example is if I get a bill and I pay it online I will file the bill and write on it, paid on **** date.
Or if I get an official letter from DWP or HMRC or something that needs action I will deal with it and write on the letter the date that I dealt with it, who I spoke to and the outcome. Its a reassurance thing for me.
I go through phases of forgetfulness so when that happens I use lists as a tool and tick off what I've done. I'm only 36 and this all started when I became ill with lupus and couldn't remember my then partners name!
I empathise with your pain. I find a bath with epsom salts really helps because the magnesium is a smooth muscle relaxant and is absorbed by the skin, our biggest organ. But you must be well hydrated before hand and I only use half a handful because I have low blood pressure. They help but don't take the pain away.
Everyones experience of lupus is different. I was medically retired aged 35 and it was devastating and I'm not "fine". I'm far from fine. Everyday is a battle. I regularly get told by people with good intentions to take this supplement or do mindfulness. Great, but so far my heart is still inflamed and my kidneys aren't behaving.
Take it with a pinch of salt. Do what's right for you. Bed is sometimes the best place, however I find pottering helps pain too. Its your body, your disease and your call and you don't need to justify your decisions to anyone .
Thanks so much for all the info and advice. I really appreciate you taking rge time to reply. I hope your journey improves and best wishes to you for the future.
In answer, to your question, what was it again?....Oh yes, about Memory loss....that's right. I'm not sure about this....let me think...….What was the question again?
Seriously though, we ALL get, a 'level' of Memory Loss. The exact amount depends, very much, upon your exact condition, medications and, funnily enough, circumstances. This may, very well, sound Daft but- somehow you Remember about the Dinner Date, with Mary but, honestly forget that Dental Appointment. This is NOT a conscious action, even if Forgetting about the Dentist seems a good idea. Memory is a, VERY strange, 'thing'- an odd smell reminds you of Aunt Carol, her long black hair, you 'see it' so vividly. (what was her dogs mane?) But, for the life of you, what was the name of that Lovely New Doctor?
To be honest, very often, it is Others- those around you- that notice these things. Simply put, if you have forgotten 'Something', how would you know? On the other hand, the person, that you Promised, to see, at three fifteen Sharp DOES notice. Your Lame Excuse, 'Sorry I Forgot', may not placate Mr Smith- who has travelled two hundred miles, to see you- very much! Alright if you Simply forgot, to get the bread, you might just have to 'dig out' the crackers….. Forgetting to tell someone, to turn off at junction four, may, or may not, be a problem. Do you see, what I'm Driving At?
I hope that I have managed to, to some extent anyway, answer your question. Basically put, we are ALL in the 'Same Boat', and so long as you can 'Plug', most of the holes- most of the time, you won't 'sink'. (by the way, if you DO start to sink, we will 'do our best', to bail you out.) I hope that this has helped, to some extent anyway.
Finally, a funny story, to cheer you- this is true. A friend of mine, some years ago now, returned from the Supermarket, put away the shopping and make a cup of tea. After a time, nature took it's course, and she went to the loo. Only, to find, ALL the bead stacked behind the Toilet- worse still the Loo Rolls were in the Freezer! To this day, she can't explain it, not a clue. So, you see, we all 'do' these things. Now that I've hopefully 'raised a smile', I'll close now.
Thanks for your lengthy and humorous reply. It brightened my day to no end. Its so nice to chat with others who whilst might have differing symptoms and different variations we are all on the same boat so to speak. Since joining its been easier to remain positive as trying to remain positive on one's own is draining. And whilst I have a very good support network its hard for them to fully understand the diaease without experiencing it. Thanks again for reply
Hi Lupusfrustrated my main memory problems are talking and a word I know reall well I simply can’t remember, I find this very embarrassing and try to describe whatever it is using other words and it can be at times people’s names I know fairly well when I go to introduce them to someone they have never met.
I am not counting totally foggy days here I rest and try and have very simple conversation.
May I suggest if friends you know say they know someone else with Lupus that person may just say fine each time rather than laboriously hi into how they are really feeling to someone who probably wouldn’t understand & also if they are feeling a bit off they wouldn’t have the energy for an explaination of how they really feel,
Thanks for reply. Yes I too have been left red faced not being able yo remember words like trampoline,combats and duvet cover just a few I can now remember.
Thankfully Ive not forgotten a name yet and if I have i now cant remember
John here, being treated for Lyme with all the same symptoms and primary care missed it because of substandard test. Had test done by a Lyme literate doctor with ignex test and had Lyme rocket mountain spotted feaver with a host of other co-infections, mightconcider it.
I was initally tested for lyme disease actually as I'd just come back from holidays and with rash. Needleas to say it came back negative. Yes symptoms very similar indeed. Wishing you a speedy recovery.
As others have mentioned, this is often described at lupus brain fog and is a very common symptom. You can read more about it in our blog article at lupusuk.org.uk/coping-with-...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
bad memory
Lupus, Sjogren and Motherhood
Hair loss ? :-( 
Symptoms and misdiagnosis
