New to Lupus Forum

[bubs007]

Hi All

I am 35 years old male who suffers with SLE. I have struggled with my illness for about 6 years maybe more as they diagnosed me with Rheumatoid Arthritis first.

I usually struggle with fatigue like most, but I have started going to the gym and fighting my illness with exercise and it has really helped. Unfortunately it has not helped with the mental issues I have. I thought I might have Bipolar Disorder, but everyone just blames Lupus as it is diagnosed.

I have severe headaches what really hurt and brain fog is impossible. I can't study anything to progress in life, as I cannot remember anything. Just the other day I forgot a person's name who I speak to him every day for 10 months. Can't remember films I watch or books I try to read.

I take:

prednisolone

Adcal

hydroxychloroquine

mirtazapine

lansoprazole

Migraleve

Naproxen

Please does anyone have any suggestions to help?

[Penguintaz]

Dear Bubs007,

I'm glad to hear you are fighting the fatigue! With exercise it is always important not to push yourself, so be careful to not overwork!

If you have mental disorders already I think you need to talk to someone, some of the medication can cause depression, anxiety and other issues. If your memory seems worse than before then that could be a sign of deterioration. I am not a doctor or expert but the leaflet that comes with my medication says if I worry about how it is affecting my mental health see a doctor immediately! It was up there in importance level with blood in poop.

For now keep notes and a diary, maybe use post it notes for reminders of daily activities?

Do some brain training, your brain is a muscle too!

[bubs007 in reply to Penguintaz]

Thanks for the reply. I do train my brain. I have been using luminosity and other brain games about 30 minutes a day. I have tried reading too but i just forget what i read and gets me totally frustrated. I do work part time and they have put me through my nvq business but its opened my eyes how out of my depth i really am

[Penguintaz in reply to bubs007]

Hmm, it does not sound great..

Have you thought about seeing a therapist or talking to the rheumatologist about an MRI/ brain scan?

It is possible for you to have mental disorders and have Lupus but Lupus meds and the illnesses it self can cause issue. You should explain not everything that happens is Lupus related!

I have read from previous forums that when their brain fog gets too bad to concentrate on a book they listen to the audio book or podcast

I hope you can feel more focused and yourself soon

Do update!

[bubs007 in reply to Penguintaz]

Thank you for taking the time to reply. I will climb the ladder again soon. Just hate this fog. I do listen to audiobooks at the gym. I love them. Still cant remember what went on the day after. Like that part of my brain dont work. I will keep training my brain with those brain games.

[Penguintaz in reply to bubs007]

Keep working on it! Will do my best to see if there are any other tips or tricks

[Paul_Howard Partner LUPUS UK]

Hi bubs007 ,

It is great to hear that exercising is helping you to manage your fatigue. I'm sorry that you are struggling with these other symptoms though. We published an article about brain fog in lupus last year which may be helpful for you. You can read it at lupusuk.org.uk/coping-with-...

Have you had any investigations for your headaches such as blood tests for antiphopholipid antibodies or an mri?

Have you had a referral to a therapist to discuss your mental health?

[bubs007 in reply to Paul_Howard]

Thank you for replying and i will read the above link later when my head is less foggy. I thought i had bipolar but the specialist suggested it was lupus or my medication. Its like because i have lupus is tje cause of everything

[Paul_Howard Partner LUPUS UK in reply to bubs007]

It can be difficult to tell what may be caused by lupus and what may be separate. Certainly lupus can cause psychiatric disturbances, though these would usually improve with treatment. You can read more about lupus and the brain at lupusuk.org.uk/wp-content/u...

[Bronagh2015]

I'm so sorry you're going through all of this, it's utterly miserable! Have you had your vitamin D level checked? Many of us are insufficient in this and it really contributes to fatigue and brainfog.

[bubs007 in reply to Bronagh2015]

Thanks for your reply. I have not had vitamin d checked but i do take adcal tabs. The brain fog and headaches together can be horrendous. I must admit the physical part of lupus is not as bad as the mental in my case. Ill keep doing my brain training and hope it helps. As someone said above. We have to train out minds like we do our bodies.

[Bronagh2015 in reply to bubs007]

Which is easier said than done when you are feeling so awful!!

[bubs007]

Bronagh2015 totally agree. Not sure how i managed it but i was really bad about 2 years ago fatigue. Joint paint. I was 18.7 stone. I decided to go into weight lifting. Mad i know. Maybe a bipolar moment. But it has been a godsend. Its helped me lose 3 stone so far and i love it. I went 1 day with a bad flare in my wrist and just decided to jog on the treadmill and the flare vanished. Not every1 is the same i know. But exercise has helped me physically