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Gullian Barre syndrome

(6 Posts)
Francium Tue 23-Jul-19 22:05:59

Anyone out there had Gullian Barre syndrome?

I'm looking for others who've had it to see if their long term symptoms are similar to mine or if i have something else going on.

I had it 4 years ago. Month in hospital and back at work in 2 months.
A few mjnir neurological issues hanging about but I have left sided lower back pain thats been developing for the past 4 years. This is now having a major impact on my life as i can't stand up for more than 5 minutes or walk for more than 10 minutes without crippling pain. I also can't bend forward far which makes washing difficult.

Phyiso thinks it might be lingering nerve damage but the GP disagrees. Chiropractor tried to do an x-ray today but couldn't get a clear picture. At the moment my GP just gives me painkillers (which don't work)

I'm hesitant anout blaming every subsequent health issue on the GBS but it just seems to coincidental not to consider it.

Has any one here had GBS? Did you have anh pain issues afterwards?

MedSchoolRat Tue 23-Jul-19 22:13:31

Since your backpain started well after the GBS, it sounds independent. Are standing & walking the only things that make your pain worse?

What self-help have you tried? Pilates type exercises (youtube) helped me, worth a try.

Francium Tue 23-Jul-19 22:24:05

The back pain started about the same time as the acute phase of the GBS eased and its on the side that recovered slowest which is why I thought there might be a connection.

I've not been able to do any self help exercise really... if i manage get down the the floor ( large struggle) I need someone to get me up and I live alone.. I also have a lot of knee pain when kneeling- unrelated issue. I have tried to go back to doing yoga but its too painful.

lljkk Wed 24-Jul-19 08:41:01

I don't think GBS continues on in the background. Maybe you carry your whole body differently b/c of the pain that started then, and slowly that misalignment is making things worse. If you can't stand & can't walk & lie down, in what position do you spend all day? Sitting? Long hours sitting is pretty bad for your health. This is probably making things worse.

Francium Wed 24-Jul-19 12:23:35

No it doesn't hang about that's true. But it can rearrange the nervous system a bit and I was very asymmetric about the spine afterwards.

Sitting is ok, bit uncomfortable but manageable. Standing is OK for maybe 5 minutes, walking 10 minutes. bending forwards or back is challenging. Lying down on back or front is uncomfortable but manageable. Lying on side is fine. I just can't get down to the floor to lie down there. I can do some exercises lying on the bed but that's not ideal.

I just wondered if there were other people out there who had had GBS. I know its rare but it's not super rare so thought there might be someone.

weegiemum Mon 16-Sep-19 22:13:34

@Francium

I've @ you as this is quite an old thread that I just found!

Sorry to hear you had GBS. I have the chronic form of Guilin Barre called CIDP. You rarely come across people with either.

Lots of people live with residuals from GBS. I'm in a support group on Facebook run by the charity GAIN (Guillian Barre and Associated Inflammatory Neuropatjies) and you might find that useful. GAIN also have literature and telephone help.

There's also the chance that your acute episode has changed into CIDP and there's lots that can be done for that. Did you have ivig treatment when you were ill? I now get this monthly and it keeps me mobile, helps with my sensation and balance and also with pain.

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