Brain fog is wrecking my life help!

[katidid]

Can't remember names, places, events and so many details of my life and work. Sometimes it's so bad I catch myself drifting off for hours or constantly switching between tasks, never completing anything. I've tried supplements and none of my meds help. what else can I try? is it normal for it to get worse over time? i feel completely incompetent

[puffyface]

Do you feel better some days than others?

[Paul_Howard Partner LUPUS UK]

Hi katidid ,

We have a blog article all about brain fog which includes information and some tips for managing it. You may find it helpful. lupusuk.org.uk/coping-with-...

[Cann]

I didn't notice dehydration and toxicity on the list of causes. I find mine is caused by this - when I have been out in heavy traffic fumes and also it was terrible after surgery and drugs in 2000. I find sometimes when I think I am hungry, I am actually thirsty - not always water, but for nutrients. I need to keep hydrated.

Remember all the hi-tech mobiles, masts, smart meters dehydrate us these days along with all the other stresses on our bodies. All the suggestions are good in the Lupus site, but I find dehydration the worst problem for me and if I need to move - exercise or get out in nature - grass/beach/woods. All the best with helping yourself with horrible brain fog - I know how terrible it can be and that is why I don't spend too long on here - not good for my brain fog or body generally!!

[Cann]

PS I found supplements made mine worse - too dry for me and a therapist said my body did not know what to do with supplements - it needed food to get well!

[Shaysuekirk]

Lists. I make lists everywhere. It's essential or I would totally fail at my job. There are so many apps out there that help with checklists and to-do lists, and there's the gold ole pen and paper lists. Also, routines. My keys are always in the same place. I have a med "box" to help me remember if I told my meds. Good luck!

[Wendy39]

Hello.

I'm sorry for this being such a late reply. I spotted your post and followed it. But I was preparing for a family holiday and have been away for 10 days - so never got around to it.

You are definitely not alone with the lupus brain fog. I guess it's like all lupus symptoms, we suffer these on a scale, some get it very bad and others are mild. I don't think mine is particularly bad.

Looking back, with hindsight, I have suffered with this since before my diagnosis in Oct/November 2013.

I previously worked as a Lawyer in Personal Injury Law - my dream job - and had an amazing memory for my client's details, accidents and cases etc. Not any more. I then took a break and then worked as a part-time Teaching Assistant. I gave that up last July.

I cannot concentrate on much at all. I cannot do simple maths, I cannot focus on board games with my kids. Memory. Concentration. Terrible. I have also had a severe lack of patience with my children. I feel guilty looking back, at how my temper could flare up and I would shout at them, scaring them. I would have to calm myself down and remind myself that they were just young children and no worse than other kids. This would have been when they were little and I had no idea I had lupus. (I think that my lupus was triggered by the birth of my 3rd daughter in January 2008 - so I wasn't diagnosed for another 5 1/2 years).

But I didn't know anything about lupus until my husband suggested to me that he thought that's what I had in October 2013.

I think I was flaring and getting progressively worse the whole of 2013. I had started to get a photo-sensitive rash in March and then on a holiday in Turkey March/April 2013 it started to get much worse. By the time of my diagnosis later that year I had numerous symptoms, including brain fog. I couldn't think straight. Couldn't focus. Would drive and not remember my journey from A to B. Coupled with severe headaches and fatigue, etc it was a very frightening time.

One occasion, with my 3 children in the supermarket. I had my shopping list in my hand, knew I was looking at the right shelf. But couldn't remember what I was looking for. Couldn't see my list in front of me. Just felt like I was on another planet. It was very scary. I remember shutting my eyes and trying to will myself to focus. I neded the shopping. I just couldn't concentrate at all.

Once I got my diagnosis it made sense of a lot of what I was experiencing, but I had just thought I was losing the plot!

Since then, I have struggled to remember the names of every day household objects. I end up explaining what I want to my husband and he prompts the name of the object, for example.

I can have a conversation and forget the persons name I am talking to.

I have gone to introduce people and forgotten both their names. Complete blank. So embarressing. This can be people I have known for 10 years or more.

I forgot my work colleauge's daughter's name, when we were chatting at work. She knew about the lupus, so I actually said, I'm really sorry, I can't remember your daughters name, lupus brain fog and we had a giggle. But it can be so awkward!

I have forgotten the name of one of my children's teachers, whom I had known for 6 years. It took me 2 days to remember it.

One very scary day, it got so bad, I couldn't remember my age and then I thought to myself I'll work it out from my date of birth, but then couldn't remember my date of birth!!!! I was so worried. I had to ask my children the year I was born and check my age with them.

I still get brain fog with my lupus but my new treatment plan has meant that flares are fewer and symptoms less severe/frequent.

My GP tells me that I have a form of CNS involvement with my lupus (Central Nervous System). I get headaches, I have been investigated for 2 areas of inflammation on my spinal cord and am awaiting a 2nd MRI of my brain after they found bilateral white matter lesions during an MRI of my brain (to check for a Chiari Malformation as the cause of my spinal inflammation, luckily I didn't have that problem with my brain).

I have also experienced a form of tendonitis in both wrists and my ankles - which is inflammation of the tendons and I have had bursitis in my hip - inflammation of the bursa or sack of fluid around the hip which provides cushioning.

So all symptoms of CNS involvement.

But I do not believe that I have CNS Lupus. Which is very serious and involves seizures and paralysis etc.

I just think I have SLE with an element of CNS involvement.

So investigations are ongoing into the exact extent of my CNS involvement. And I need to see a Neurologist but GP dragging her feet and I need my NHS Rheumy to do this. Waiting list will no doubt be a year - 18 months.

By the way, I do not have Hughes Synmdrone or sticky blood as it's sometimes known. From what I have read, this can cause lupus brain fog to be a lot worse??

And I don't have Vasculitis either.

I too feel completely incompetent most of the time. When feeling well, I think I could hold down a job. The I'll have a bad day. Can't get out of bed. Or brain fog. Headache. Aches and pains. Then I think I'm kidding myself. And I could NEVER go back to legal work. I would not be able to function at that level. I can't function at any kind of intellectual level! I feel terrible that my husband is the only one working and I am not contributing financially. That I don't have my own money to spend. I have told my husband and my close friends that I feel useless. But they remind me that I am a good homemaker, a good mum, I can cook and bake better than most of them, that my children adore me, my husband loves me. And they are right. I must accept the new me. But it's really hard. I am still a human that contributes. I just have to be realistic about my goals. Take simple pleasures. Enoy being home to raise my kids and being here for them. I have started helping the PTA when I have the energy. I am also starting a new Lupus Support Group in my county, first meeting in September and I am really hoping this will give me a boost and a focus, as well as helping others. Make me feel worthwhile.

I hope I have helped and made sense.

As with any lupus symptoms, you are never alone.

Best wishes

Wendy

[katidid in reply to Wendy39]

Hi Wendy and thank you so much - truly - for your detailed reply. I apologize for not responding sooner ... I had forgotten that I ever wrote this post! Talk about reinforcing the point. What you have described is exactly what I'm living. Sans the children, I too was a professional who has had to sideline her career because the fog and (for me) the pain became too much. I still try and work but in all honesty I'll be laid off soon for lack of ability. It sucks, but I have to recognize that while my smarts aren't gone, per se, I just can't access them like I used to. And, like in your profession, my mind was my money maker and without I can't do my job properly.

I was diagnosed with CNS Lupus b/c I do have seizures. These preceded any Lupus symptoms by many years and were under control within a short period of time. However, starting about 10 years ago, my medical records show me continually complaining about my memory. Like you, it tends to be specific: what things are called, when things happened and if things happened. That last one I call biographical memory loss. I simply don't remember things about my life as others do. It's kind of like havng "islands of memories" with lots of water in between. Whereas other people have large land masses and countries they can travel.

I had to laugh a little about how you and your husband get your to recall the names of things. I do that as well - I sit there and describe it until eventually I either give up and he tells me, or I figure it out. I also empathize with the embarrassment. Forgetting people you've known for years (for me it can be both the name and how I know the person sometimes) is mortifying.

[katidid in reply to katidid]

Oh, forgot to add: I also have sever tendonitis and bursitis. Also, a lovely case of sacroiliitis. Because the soft tissue inflammation and joint pain was so widespread, I ended up receiving a dual diagnosis of Psoriatic Arthritis, specifically Spondyloarthropathy. It’s not related to Lupus at all and the cross over is rare. Not sure how many of your tendons and joints are affected, but you might want to discuss it with your doctor. I have found I can tell the difference between the Lupus “reactive arthritis” pain and the PsA joint/tendon pain.

[Wendy39 in reply to katidid]

I do get tendonitis and bursitis - suffering at the moment - and suspected sacroillaic joint inflammation - although nothing showed up on MRI. It is mainly under control with the lupus at the moment but bursitis has reared it's ugly head again. I am learning to keep a very open mind. I went to London Bridge at the end of October and for the first time the doctor mentioned the possibility of underlying sojogren's. Our journey's take us all on such different journeys with the same disease! No wonder it's such a complicated field. Best wishes. x

[katidid in reply to Wendy39]

Interesting. My mother has RA and now diagnosed with Sjogrens. I just had my lastest pelivic MRI. It's clear (not surprising). Always strange to have so much pain but no trace of it. It's comforting to know that most Lupus and PsA joint stuff doesn't show up on imaging for most people. Have you had steriod injections for your bursa? If it's recurrent and on the outer hip, they are now even removing them. It's a simple procedure and actually helps your body grow healthy bursa. It regenerates quickly. I wish we were candidates for PRP therapy, but it's useless in autoimmune cases, unfortunately (and $$$, at least here in the US). Let me know if you have an bursa soothing tips. Would love to be able to lay on my right hip again someday! Best wishes to you as well!

[Wendy39 in reply to katidid]

I have never heard of the operation to remove bursa before. Thanks for that. At the moment it has settled again. I have only ever required one steroid injection in it. But if it gets that bad again, I wont hesitate to ask for another injection. There is no reaosn to suffer now that I know somehting can be done to relieve it. I find it very frustrating that thigns don't show up on xrays and scans etc. The way my local Rheumies work, if it doens't show up in a test it doesn't exist. Yet I know other doctors who would say Lupus doesn't always show up but we do beleive you and will treat you anyway. Thanks for getting back to me. x