Dehydration

[sifre4]

Any Sjogrens sufferers here? I'm so dehydrated I'm getting headaches and using dioralyte every day. Just wondering if it's ok to do this? It's the only thing that helps

[phil_54]

Hi, I think i have same symptoms constantly dehydrated also very irritable eyes but not to many headaches if you think the dioralyte works ok then i would carry on but just mention to the doctor if your over concerned, I recently noticed a large gap appeared between my 2 front teeth and my gums started to receed not sure if this is sjorgens or side affect from MTX.

Best wishes

[sifre4 in reply to phil_54]

Sorry to hear about your teeth, mine have been pretty good the last few years. I hate mtx although I don't get side effects that I know of. I can only take a low dose, 4 a week. All the best

[helixhelix]

I'm not a doctor, but I don't think it's a good idea to use dioralyte for more than a few days. It contains a huge amount of salt, and that in itself is not a good idea. The purpose of dioralyte is to bring your body back into balance after a bout of diarrhoea or vomiting. (and for people who drink water to excess) In itself it doesn't really affect the level of hydration in your body.

First off, are you sure you are dehydrated? SJorgens affects the moisture in mucus membranes like eyes and mouth, rather than the overall hydration levels in your body. A good way to check is the colour of your urine. If it is very dark then it's a pointer to being dehydrated but if a normal straw colour then headaches are due to something else and you need to get that checked out.

[sifre4 in reply to helixhelix]

I should have mentioned my six food intolerances lol, I get lots of diarrhoea so always have dioralyte in the house along with Imodium 😐

[Hidden in reply to helixhelix]

Thanks for 'splaining what dioralyte is Double H - I was a little confused and getting ready to head out to Dr. Google - ha ha

[Barbara17]

Hi, I've had sjogrens for many years now and find fybogel is kinder than anything else.

[sifre4 in reply to Barbara17]

I have six food intolerances and get diarrhoea from most of them so fybogel wouldn't be good for me.

Thank you though xx

[Hidden]

I have Sjögren's as my primary disease with some RA and Raynauds overlaps and many neurological features. The craving of your body for sodium is not, as far as I'm aware - a particularly Sjögren's thing.

However it can be due to other autoimmune diseases such as Addison's Disease (endocrine - adrenal failure) or it can be part of the autonomic dysfunction closely associated with Sjögren's and other autoimmune diseases such as type1 diabetes, Hashimoto's and MS - see PoTS. The autonomic nervous system regulates important functions such as our heart rate, digestive system, whether we sweat, how often we pee etc.

Please do report this to your doctor asap. As Helix says, it's not usually advised to continue with this treatment for a long period. You probably should have your sodium levels checked.

I often feel dehydrated and I do crave salt and my blood tests often show me to be potentially dehydrated - but I'm really not. My pee is entirely normal looking. I'm just very dry and this effects every part of my body, including my peripheral and autonomic nervous systems, BP, thyroid and GI system from top to bottom.

[Matilda7]

I have secondary Sjögren's and find that taking a probiotic helps with the gut problems. I use Optibac which is expensive but very effective. Waitrose often has a two for one offer. Once I've stabilised I find I can cut the dose a bit.

[sifre4 in reply to Matilda7]

I use promax 30 because I have so many food intolerances, it helps with the stomach cramps

[Matilda7 in reply to sifre4]

But not with the diarrhoea?

[sifre4 in reply to Matilda7]

Nothing helps apart from avoiding the trigger foods. Wheat, gluten, dairy, sugar, honey and yeast