Memory loss

Hi hope someone will be able to give some advice.

I have recently returned to work after being off for 7 months. I am a sales secretary and I am having difficulty retaining information now and when I speak I find myself forgetting mid sentence what I wanted to say. I am feeling very vulnerable as my job is fast paced and I feel I am now unable to cope .

I would be grateful to hear from anyone who has suffered similar situations and how they dealt with this.

Finally, I am not sure if this is because of my vasculitis or because I have been off work for 7 months and eventually I will improve.

Thanks for taking the time to read my post, and hopefully I will get some feedback.

Bye for now.

Foggy 56

17 Replies

  • I would think it's just a matter of getting back into the routine. This happens to me & it's my husband who has Vasculitis!!! Give it time, hopefully your employer understands what you've been through and are still going through.

    Good luck

  • It may be to do with medications you are taking or to the vasculitis - it will depend what sort of vasculitis as well. But it could just as well be having been off for 7 months, it is very difficult to say.

  • Hi there . I would just like to say that i am experiencing the same type of memory loss and its also affecting my concentration . Im sorry that i dont have any help or advice to give you as i havent got to the bottom of it myself . The last specialist i saw was interested though and has asked me to try and keep a record of any episodes so maybe you could do the same ?? i guess it may help down the line ? One thing that has been suggested is a poss side effect of steroids ?

    Sorry not much help but i often feel that when i learn of others with similar probs i dont feel quite as isolated .

  • I've been like this for ages. I have wg. When I Googled about azathiopine medication alot of people on forums said they feel the same as you described so I am putting it down to that for now. X

  • I work in public relations for a hospital and I face similar problems to you. My first episode of Vasculitis was four years ago. I don't feel I cope with the stress of my job as well and find it not so easy to concentrate in long meetings as well. I also find it hard to recall information. It doesn't make it any easier as my line manager has a brilliant memory for evry little detail. I've never been sure whether it's the medication - I'm on aziathioprine and steroids - or just getting older. I have reduced my hours a little. Hopefully it should improve a bit for you when you get back into the swing of work again. I was a bit like a zombie when I first went back. Best wishes

  • Hi, I have the same problem, I think it is known as brain fog, and it is a real nuisance I agree. I have had an MRI of my brain and will see my vasculitis specialist later this week. For the moment, all I know from my GP who has read the report, is that there are changes to my brain. Hopefully I will find out more and maybe see a neurologist. I have an undefined form of vasculitis. I was on Cyclophosphamide for a ten infusion course which was not successful and have now been on Rituximab for almost a year. Steroids for ever of course though a low dose now.

    If I find out anything helpful, I can post it.

  • Hi Amms43 thanks for your quick response. It is nice to know that others suffer from the same symptoms. Do you have the same problem of stopping mid sentence when you are talking because you forget what you were going to say. I will be interested to hear if manage to get any further results. Take care X

    Foggy 56

  • Yes, that does happen to me or sometimes I forget a perfectly normal word, get stuck on it and by the time I remember it I can't remember the rest of the sentence or what I was trying to say.

  • This is a very interesting thread. In my own case I can trace my "brain fog" symptoms to the onset of my other symptoms (whilst I was still working) and way before I started any medication. Very similar to what has been described above - memory issues, concentration issues, struggling with meetings, presentations and even emails (would have to read back the emails to check them for flow, etc). So in my case I know it's not based on being away from work for a long period of time.

    I have received many varied suggestions from consultants as to the cause - the fatigue, fibromyalgia and even that I'm not breathing correctly. But I think it's related to the various Vasculitis symptoms (perhaps even unseen symptoms) as one of my symptoms I suffered with before medication started was dreadful headaches (every day for over 6 months).

    In my case I'm not sure the medication (steroids, methotrexate) make any difference to the brain fog. Brain fog (together with fatigue and pain) are very much the symptoms I am left with now the other symptoms are under control.

    I can't suggest any magic cure, but only to know your limits, get plenty of rest when needed and try to plan around the brain fog as best you can.

  • As I said before - both autoimmune disorders and pred can often be accompanied by brain fog. It is also common with many of the chemotherapy medications.

  • Hi There

    I have the same and think its a combination of things for me. When I had nearly a year off several years ago I returned with my doctors suggestion of doing just 2 hours a day to start with, which at the time I thought far too little but by the end of my 2 hour shifts I was mentally exhausted and then bit by bit built up my hours until the brain fog improved. I am still the same now and get very quickly tired when I concentrate, forget things, get my words muddled up, forget names, forget what I was doing 5 mins ago etc. When I rest it all comes back to me.

    Give it time, I think its the combination of getting adjusted back into the work environment, I think the vasculitis does affect my ability to concentrate so it may be that too and I think the medication plays a part.

    I had wonderful employers when I returned to work and they would let me take breaks when I needed as long as I made up the time, I found just 20/30 mins sitting in the quiet and switching off would help hugely, may not be a possibility for you but maybe worth a try. I appreciate how difficult it can be though with employers.

    Take Care Jenny

  • I had the same thing when I went back to work after being off for 4 months I think it was mainly the fact that I was still recovering and had taken in so much information from doctors and hadn't really had much energy to focus on anything for too long but I definitely think it's just a case of getting back into the swing of things, I'd say it took me about 2-3 months to really settle back in and get back to 'normal'

  • Thanks to all for your comments and suggestions, most appreciated.

  • I had this very badly when undiagnosed and flaring as blood wasn't getting through to what passes for my brain. Then it was definitely pred as I got my mind back last week having tapered to 2 mg. Friday I was forced back to 30 mg and the side effects are instant, including the return of the fog. And the appetite, alas!

  • Hi Foggy 56. I too have this. I call it "unable to multitask" symptom. I do't seem to be able to focus on more than one thing. If I try to multithink (something I've always been good at) I end up forgetting what I wanted to do originally. So frustrating, Also, my brain knows what I want to say be ut can't communicate the sentence to my mouth, unless I take stock and think clearly before I speak.

    I've more or less overcome this by not focusing on more than one thing at once. If someone asks a question listen and only reply to the one question. If the person interrupts or ask another question. Politely tell them you with deal with that question after you've processed the first. This really works for me.

    Hope this helps

    Babs x

  • Hi Babs

    Thanks for your reply, great comments so I will give them a try.



  • Iv def got brain fog but on so many diff meds hard to know which one but methatrexate def made me diff.pred makes me crazy and impatient and morph one sweat like a pig and not a clue!

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