Nauseating nausea! : Hi, I've been suffering... - LUPUS UK

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Nauseating nausea!

creaky profile image
creaky
β€’19 Replies

Hi,

I've been suffering lately, it starts the moment that I open my eyes in the morning. I haven't changed any of my medication or diet.

Husband, (bless him) brings me toast and coffee in bed before he trots off to work as I am always a bit ropy in the morning, but that has more to do with pain and stiffness.

I've been trying to eat it as it feels almost as if I'm very hungry, eating doesn't seem to make it any better or worse really, and I continue to feel nauseous all morning, by the afternoon I feel better.

Starting to dread going to bed and starting the whole cycle again!

Is this just yet another thing I have to learn to deal with? πŸ€”

The pic is of one of my recent needle felt sculptures.

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creaky profile image
creaky
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19 Replies
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Coffeetime profile image
Coffeetime

Try ginger biscuits. They seem to work for some women when they are pregnant. Something to do with the ginger.

creaky profile image
creaky in reply to Coffeetime

As good an excuse as any to get some biscuits in! πŸ˜€

I did have some ginger ale yesterday which did help for a while, but I was hoping to just get rid of the cause, if I can find out what it is.

Thankyou.

Barnclown profile image
Barnclown

Hi creaky! I love your little friend!

I’d lived with nausea 24/7 getting worse & worse from the early 1990s until it finally began to be convincingly diagnosed & effectively treated during the past few years. Life with persistent nausea is miserable. It can have many different underlying causes. For what it’s worth, here is my story:

Until recently, medics blamed my version of this on my chronic upper GI conditions (had been investigated & diagnosed mouth to duodenum). Treatment with daily PPI + domperidone helped to minimise the severity of my persistent nausea, but i still had it all the time and needed to lifestyle manage it v conscientiously: meals little & often, high fibre/low fat/low protein LOW FODMAP diet etc etc. Ginger in any & all forms was key to keeping my nausea damped down...ESPECIALLY:

- ginger tea made from fresh roots (i made big jugs daily & sipped it hot & cold 24/7)

- Gin-Gins chews

amazon.co.uk/Ginger-People-...

Then a few years ago immunology started me on daily prophylactic antibiotics (coamoxiclav) ongoing forever due to my Humoral + T cell Antibody Deficiency Illness (the PID hypogammaglobulinaemia). At the very same time NHS multisidiciplne investigations into my complex abdomen/visceral manifestations were figuring out that my childhood onset mouth to a*s slow transit dysmotility had always been causing SIBO (small intestine bacteria overflow) which had been the main cause underlying my decades of 24/7 nausea! And from the very first weeks of taking them, Immunology’s daily antibiotics have consistently stopped my 24/7 nausea...so much so that i haven’t made ginger tea for several years! But i do have to continue all the other conscientious GI lifestyle management/self help

Hope something in there is useful

πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€ Coco

creaky profile image
creaky in reply to Barnclown

Thanks Coco,

Very helpful, I think it's the sudden onset that has made me wonder what's going on, I've always suffered if I take my mmf too early or without food, hence my breakfast in bed habit, but this just feels new.

I think I may take a flask of ginger tea to bed with me tonight so I can sip it as soon as I wake in the morning.

My daughter thoughtfully bought me some ginger shower gel at the weekend too, which is very refreshing.

However I guess I will have to go to see my long suffering GP if it doesn't settle soon. πŸ˜€

Barnclown profile image
Barnclown in reply to creaky

Good plan...my version of this is mainly about SIBO, but chronic AID-related gastritis is one of my chracteristic long term issues and that can flare suddenly & severely...and when it does i see the GP pronto...especially if this affects my appetite/swallowing etc πŸ€πŸ˜˜πŸ€πŸ˜˜

creaky profile image
creaky in reply to Barnclown

That's the funny thing, eating doesn't seem to make it better or worse, I've just ordered myself some gin gin crews x

Barnclown profile image
Barnclown in reply to creaky

Hmmmm...do i remember you saying you have slow transit dysmotility?

cause:getting going in the morning, even if you aren’t doing a lot of moving about physically, can ease motility along, thereby easing nausea...

whisperit profile image
whisperit

Hello creaky

I had nausea every day for a year or so, gradually getting worse on waking, to the point where some mornings I was waking up retching. Turned out that I had developed adrenal insufficiency, and the nausea was a function of simply not having enough cortisol. Early morning is the time when your natural cortisol levels should be peaking, so that's when you have the biggest deficit. I was on 4mg pred at the time, and after increasing my pred dose, the nausea completely resolved.

I am not suggesting that this is your problem - adrenal insufficiency is not common - but it may be something to bear in mind. Being an incorrigible experimenter, I wonder if its worth seeing if anything improves if you take a small dose of steroids immediately on waking (10mg of hydrocortisone is how many people with AI start the day!)? x

PS Those gin-gin chews are like Fisherman's Friends. Stick with the ginger root tea!

Barnclown profile image
Barnclown in reply to whisperit

SO TRUE about the Gin-Gins! I literally have to chop them up into tiny slivers so i can bear them at all...but OMG can a tiny sliver do a great job! XO

PMRpro profile image
PMRpro

" adrenal insufficiency is not common"

I suspect it is a lot more common than they think. They don't look for it. So they don't find it..

whisperit profile image
whisperit in reply to PMRpro

Yes, our cortisol production will be down-regulated to some extent when we are on steroids, and it will take a little while to up-regulate again when we stop. That's why we are (usually) advised to taper down slowly. What is concerning is that there seems to be little acknowledgement that there must be variability between individuals in how quickly and how completely adrenal function is restored. In my own case, I remain shocked that my rheumy dismissed the possibility that I could be struggling with adrenal function after a year on steroids ('not long enough') and preferred to give me a new diagnosis of fibnromyalgia and refer me for physiotherapuy rather than even consider a cortisol or synathen test. I suspect others may be left struggling for a similar reason. x

PMRpro profile image
PMRpro in reply to whisperit

Exactly. usually it wouldn't happen after a year - but that doesn't mean it doesn't. And was there maybe por adrenal function in the first place? They don't check - because they don't think about it. And when it is asked about - they deny all responsibility...

AnnNY profile image
AnnNY

Nausea, fever & loss of weight were my first symptoms & not enough "objective" symptoms to do anything about it. It took longer to find that ginger was very good for it. If you have Jamacain ginger ale it is really good. Also, there is Chinese candied ginger which is helpful. I was in my 20s then and I used a few puffs of MJ. It was purely medicinal and didn't take much to get through the day. (There was no seperating CBD from THC then.) I took some heavy duty antinausea meds, and nothing worked as well as a few quick puffs. Finally, after 7 years, a rheumatologist put me on a small dose of plaquenil. It was the last symptom that went away, but it mostly has. Recently, I was having some stomach discomfort that I thought was meds. I'm back on MMJ (legal) and much to my surprise, it has helped with the functioning of my intestinial track. Sorry for typos. A bit tired.

Barnclown profile image
Barnclown

Here’s a Gin-Gins link...when i was coping with persistently extreme nausea + projectile vomiting for 2 weeks last march, sucking teeny-tiny slivers of Gin-Gins kept life just that important bit more bearable. They also make a hard sweets version, but my sjogrens dry + hEDS mouth is so fragile & sensitive it tears sucking anything hard....

amazon.co.uk/Ginger-People-...

Loving the thought of all that walking helping you! XOXOXO

creaky profile image
creaky

Thankyou all for your replies and support.

It so good knowing that you understand without me having to explain all the other background problems that others just don't get.

I really hadn't considered adrenal insufficiently, I've been taking a base level of 7.5mg pred for about 4 years, so this really could be significant, I'm going to take my pred as soon as I wake tomorrow and see how it goes.

Im really not a morning person these days, but I'm set a plan in place tomorrow! πŸ˜€

If that doesn't help, my GP will being having the pleasure of my company very soon.

Once again, many thanks πŸ’

Lily77 profile image
Lily77

Hi Creaky, so sorry to hear about your nausea. It is something I suffer from really badly in reaction to pain, especially in waking, so I really empathise. If you need medication, you could ask your doctor for prochloroperazine (buccal) tablets which are slipped up next to the gum to alleviate nausea. Really hoping that you find an answer soon....with very best regards, Lily.

creaky profile image
creaky in reply to Lily77

Thankyou lily,

Sorry that you are suffering too.

I just feel that I am taking so much medication anyway, that the last thing I need is more. Hopefully it won't come to that.

Thank for you reply, wishing you nausea and pain free days πŸ’

Bebe76 profile image
Bebe76

I used to have the same problem. There were two things causing my morning nausea - undiagnosed Coeliac disease, and excess stomach acid. Once my Coeliac was diagnosed and I was gluten-free, the nausea was a little better, but it was only after my GP prescribed omeprazol that my stomach started feeling better in the morning. I didn't realize acid was the problem, as I never had heartburn. My nausea also tends to show up again when I am having a lupus flare. I hope you find some relief soon!

creaky profile image
creaky in reply to Bebe76

Thanks Bebe,

I already take Omeprazole morning and evening and I don't think I have any other signs of coeliac disease, I hope not anyway!

Sorry to hear that you also suffer with nausea, I think I may be flaring a bit, mouth full of ulcers and very tired today, bloods on Friday, so will see then.

Hope that you are staying well.

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