so scared about SLE..very depressed a lot of the ... - LUPUS UK

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so scared about SLE..very depressed a lot of the time.

BklynEvie profile image
8 Replies

well i was diagnosed with sle about 12yrs ago and i do get a lot of flare ups especially on my right hand.my question is does anyone experience stomach pains and migraines? i spend a lot of time in the hospital due to the stomach pains. i was told it was IBS and now in december i was also diagnosed with hiatal hernia. can lupus cause all this? please in need of answers i feel so depressed and it hurts to see my family hurting because of all this i go through.

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BklynEvie profile image
BklynEvie
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8 Replies
janiceray profile image
janiceray

I don't quite know if Lupus cause's it but a lot of us who have Lupus suffer

from this and take meds to control and change of diet,taking small sips of water does help a lot.

My doc says this was brought on by using anti inflam drugs.

Hope all goes well

nerri profile image
nerri

Hi there, i am new to lupus, but since i have been ill i have had alot of problems with my tummy. Iv lost alot of weight and get alot of acid and stomach pain. I take omeprazole to help with the acid and i did try an antispasmatic for ibs symptoms. I dont know if this is part of lupus as i have been ill for just over two and a half years but have only just began tretment for lupus.

I hope you feel better soon. Stay strong X

Thaddeus profile image
Thaddeus

Hello there

For me it was live yoghurt which was the break though for my digestive problems. So long as I ate them regularly things stayed relatively calm. Obviously this wont work if you have lactose problems. You could try lacto-fermented veg ( pickles) from a health food shop.

Jude65 profile image
Jude65

I have had a lot of stomach trouble due to the drugs (steroids) which do damage the lining. I am on lansoprazole which is similar to one you are on which reduces the acid in the stomach and I also take ranitidine in the evening.

It is common for people with lupus to get migraines; I did for years until it was discovered that I had sticky blood (anti-phospholipid syndrome). Once treated for that I never had another migraine.

Good luck with getting everything sorted out. Don't worry, most of us survive and its OK if you can get good experienced lupus specialists to treat and support you.

MandaM profile image
MandaM in reply to Jude65

I take ranitidine too, once in the morning with my 5mg steroid dose. Essential to protect the stomach lining. Having a volcano of acid pouring up into your mouth continuously at night is no fun, so i make sure i don't miss a dose now. Steroids are not a nice med to take!

The only sort of migraine i get are painless ones which involve visual disturbance, akin to having colourless kaleidascopes in my eyes. Luckily too they only last about 30 mins but i have been told these episodes are migraines.

DivaSassytree profile image
DivaSassytree

hello there,

I have had Sle Lupus for 19 yrs now and yes I have stomach problems and IBS also. I also suffer from migraines and fibromayglia. So I know how you feel about being depressed. I try not to think about it alot just try and enjoy the day to the best of my ability. Cause if you sit and think about it you will get more depress and that is not what you need to do.

BklynEvie profile image
BklynEvie in reply to DivaSassytree

Thank you diva for the kind words. But what keeps me feeling down is this IBS i get a lot of pain really bad every month or so and it hurts too that these doctors think that i am drug seeking. They don't take many lupus patients seriously just because i look fine on the outside doesn't mean i am suffering i take levbid, methotrexate,prenidsone put it this way its a lot of meds. I feel as if i am not being heard and that truly hurts. I dread hospitals but my husband hates to see me in this much pain. I rather suffer from pain that to be labeled. Thank you for hearing me out.

sharonsimmonds profile image
sharonsimmonds

my auntie had sle for 25 years and i watched her suffer and struggle to london every month and yet she taught me how to be strong and always stay positive in the face of adversity she died four years ago aged 67 little did i know then i was going to be diagnosed myself 8months ago after being ill with different illnesses for years i am now 55 and they have told me i have had sle since i was 11 years old when i was in hospital with juvenile arthritus i am now also being tested next week with addisons disease which looks like i am suffering with also but i will always have my auntie with me and remember her with such courage and strength and she will always be there x

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