Lupus and nervous system involvement

Is there some info on the symptoms of nervous system involvement please?im suffering multiple flares on a weekly basis ,a few day recovery before the next hits .I get complete neuro exacerbations with every flare ,more than any other symptoms ,is this typical of lupus nervous system involvement?and can something as simple as a heavy conversation or even a good old fit of laughter trigger a flare ??as in my case ?thankyou ,brave

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  • Brave so sorry you are having a hard time of it:( I can't answer your question fully but I do know that if I'm in a noisy environment/lights on, or a room has quite a few in with lots of loud talking, or I have been in company too long - infact anything that causes over stimulus of the brain and I can feel a flare up. That's why now I like calm, tranquil environments when possible. I'm hope the caravan we are about to buy will do the trick with this. Re nervous involvement I do often get cognitive involvement now and only last week I kept saying it was as though my brain was 'not thinking' properly and I found it hard to concentrate. I found this hard to cope with as again people can't see it and we look ok. Only I knew that I was limiting what I was saying as I couldn't feel as though I could think properly. Again like all aspects of this odd illness it feels ok again the past few days......very strange. A good question Brave and I too look forward to some of the responses xx

  • Thankyou mstr;))it feels like im intolerant to living in terms of nervous system overload ,and i cant control it ,what medications could tone down the autonomic system i wander?

  • I don't know Brave but am keen to see other responses. For me the environment plays a big part and how much I take on myself. Last week I caught up with 4 friends on different days and it was too much by the end of the week. It reminds me to pace myself, listen to music, be in calmer places. Some weeks are harder but I like to keep up with friends too even if that means lupus wins that week;) Take care Brave x

  • i get you mstr ........seeing freinds kills me i have pulled away of late but also feel sorry for myself that i dont socialise ,such a downward spiral in last 12 months ,;(((lupus winns hands down at the moment , i keep wishing a remission ,but i dont think im that lucky ?wish you well ;))

  • I really hope that you get a remission too Brave. I too stopped socialising for nearly two years except for family and a few close friends. With the right meds now I feel like they are helping.....but I still have to pace myself massively and yes conversations, noisy environments etc like Roobarb said below can be draining. From last week I promised myself to always keep a Friday free for me so I can go into the weekend with some energy and with no flare ups. I also am going to try and spread seeing my friends out so that I don;t end up doing that again as it's so draining. By the end of last week I was really struggling cognitively and just trying to 'act' as though my brain was working. Still those friendy/familu have kept me sane otherwise I would have felt very isolated throughout the diagnosis process and up to now. Good luck Brave and keep us posted with how it goes. xxx

  • Hi brave

    I find my symptoms are also made worse by simple things like having a conversation, or even having a good laugh. Sometimes this is better than others, but I try to avoid noisy & busy environments as much as possible.

    In terms of treatment, I have found that when a medication dampens down my lupus symptoms over all, I am more tolerant to these stimuli. I hope to try yoga too, when I have a bit more mobility & energy. But on the whole, I try to strike a balance between quiet rest & spending time with friends who don't talk too much!

  • thankyou roobarb,i never thought it would come to this ,im such a different person of late ,i miss my old self;(((

  • I know what you mean brave. It's hard not to long for our old, healthy & active selves. But this illness does go through fluctuations, so you will have some good times again. They just won't be quite the same as before.

    I try to remember that life would have changed whether I had lupus or not. I would not have remained the same person, & would have had to adapt in other ways. Grieving is part of the process of coming to terms with our illness & Sara Gorman deals with this well in her book Despite Lupus. She also has a really positive blog, that I like to follow.

    There are many good things that can comes out of lupus, I have met lovely inspirational people through my local support group. I have learned so much about the world & about my self. I have learned to slow down & appreciate the small & precious things in life, which before I would never have time to even notice.

    Lupus is a journey along a very bumpy road, & we all wish we could get off this bus. But at least we've got each other to support us, & in my experience lupies are very good at that.

    Take care. X

  • So well put Roobarb and just what I was thinking today. I wouldnt choose to have lupus but I am now learning to appreciate the small things in life, people more, notice the environment and be thankful that I can achieve a swim and a room tidy up in a day. I would never have slowed down before as I wouldn't let myself. It's hard but with the right meds and lifestyle changes they do help a lot. Long may this remain though and I never get too hopeful as lupus can just come around and bite you on the bum just when you least expect it xx

  • Ha ha Roobarb I love your way of dealing with it.....yes quiet, reflective friends are the way forward:) Though I still do like laughter and a bit of mischeviousness in my day.....I just have to work harder with this now xx

  • Too right about the biting on the bum, mstr! Expect the unexpected from Mr Lupus, but a good laugh along the way really helps, doesn't it. x

  • It sure does:) x

  • We've got a little bit of information about lupus and the nervous system available in our factsheet on the brain. You can take a look here - lupusuk.org.uk/images/pdf/1...

  • Thankyou for your time

  • For some reason I'm having trouble posting - brave I have bad neuro probs just been put on neurontin/gabbapentin please message me then will get back to u for some reason I'm having probs posting

  • Paul can I ask you to post a link about lupus and the feet.

  • You certainly can. Here you go - lupusuk.org.uk/images/pdf/1...

  • Thanks Paul I have planter fasciitis in both feet I ask my rheumy if it was down to having lupus he just muttered so not really sure if it is connected.

  • Maybe you could ask your GP for a referral to a podiatrist? They may be able to help with it?

  • Hey Brave - yes I do have very bad neuro problems, I have just seen a neurologist and he has put me on neurontin/gabbapentin - starting dose 100mg once a day at night for 3 weeks to see how I tolerate it then the dose will be upped to 3 x 100g xxx I tried to send u a message to yr inbox and typed it all out but it didn't seem to do anything. I also started the same as u with ME so we have a lot in common with the progression of our health problems.

    Please feel free to message me - and I will fill u in - dig deep honey xxxx

  • thankyou ,im seeing neuro this avo ,im scared he wont take me seriously

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