Johnny

[Johnnyfay]

just been diagnosed with lupus . I’m 55 and would like advice on how to control symptoms and what foods or supplements help

[Spanielmadlady]

Sorry for your diagnosis. You will over time notice your patterns, triggers and boundaries and its important to take notice of them. Stay out of the sun and cover up head to toe in clothing inc hat and sunglasses and wear factor 50 all year. Pace yourself (Google the spoon theory) and sleep as much as possible. Food issues and intolerance are common some foods contribute to flares for me it is dairy for some its gluten to name just 2. Keep stress to an absolute minimum as that is one of our biggest triggers. To most people it all sounds like faff but to us lupies it can make a huge difference as to how many spoons you have at your disposal.Keep in touch with your HCPs . Kind regards SML xx

[Pippydo]

Sun and sugar are bad news for me. I’m fairly strict with diet, gluten free and minimal dairy, no sugar, hard to begin with but after a while I realised I felt better without these things so now a lot easier. All the best to you.

[marypw]

‘Let whatever you’ve done in a day be enough’

Not sure where I got that from but it’s the best advice I’ve ever had. Do not try and do too much - no rushing around getting stressed and exhausted. Otherwise you can get to a state where your batteries are completely flat! Read up on ‘spoons theory’.

I’ve never noticed that food has any effect on me, but I do avoid caffeine due to the energy peaks and troughs it can create.

Sunshine is a trigger for most of us.

Take your hydroxychloroquine regularly and get your eyes tested annually.

Best wishes

[Eddie66]

Agree with others that sunlight UV does affect me, so strongly advise a hat even on thin cloud days. Sun cream of minimum factor of 50 is a must and use moisturiser at night.I've had SLE since 1998 so happy to chat 😀

[Eddie66]

PS symptoms will vary and after a period of time you'll better understand what your limits are. I'm 58 and my main issue after 20 odd years is overdoing it, suffering extreme fatigue and forgetting I've got Lupus and I'm not as young as I once was 😆

[JenniferW]

Hi Johnny

I find my energy levels swing around much more than pre lupus. Making sure I eat regularly to keep my blood sugar levels even is helpful, no skipping meals.

Supplements - If you have a look at the blood tests they have done you should be able to see which ones you are low on. GPs only make a fuss if you are under a range, but in fact being at the low end of some vitamins can affect you.

It's common to be low in vitamin D, ideally you should be over 70. Also it's common to be low in B vitamins and iron, ask your GP or rheumy about your levels as the desired levels can vary by sex and age. Rheumatologists prefer iron levels to be kept higher, but make sure you get a full iron panel done before supplementing with iron as there is an uncommon but serious condition where someone has a low level of ferritin, but high levels of iron in storage.

I also supplement with magnesium glycinate, it helps with my thyroid and anxiety levels.

Hope this helps,

Jenny

[Poshcards]

I have had sle for over 31 years now, only supplement I take is Vit D, as we stay out of the sun, be careful and follow your rheumies advice and steering as to any extras besides meds they give you x

[KnitSewPurl]

Hi Johnny , sorry to hear about your diagnosis. As others have mentions about Sun and Vit D. Suggest to try SPF 50+ la Roche Posay whilst they come in very small bottles they are travel size . But do try others if you feel that they are too expensive for you. As for Vit . D it is definitely I find a must for me with out it I definitely feel very tired and energy levels drop alot. I am on a higher level of Vit D dose. Because I am also taking Calcium as I have Osteopenea.

As for food wise , I have avoided Garlic , mushrooms gluten,and dairy they have made a huge differences to my body especially since removing gluten . Garlic and mushrooms I found made my hands and body inflamed and swell. Gluten including oats caused alot of inflammation and diarrhoea so did dairy.

As every one is different, I suggest, you try a good dairy and see which one of your food helps and doesn't . It takes quite a while to weed out those that causes inflammation. Because you have to pin point the exact one . I don't have pepper at all now . I used ginger and onions instead of garlic in all my food. I frying them in either ground nut oil or olive oil until they are lightly brown for some dishes . There is alot of gluten free sauces but you need to check the labels as they are not dairy free.

But most shops are getting better now at separating them .

Hope you get some where with you journey.Just remember everything is trial and error . You will get there in the end

[Johnnyfay in reply to KnitSewPurl]

thanks very much it’s a mine field at the moment 😩😁

[KnitSewPurl in reply to Johnnyfay]

Yes it certainly is🤣😅

[AnonLupi]

Hi Johnnyfay

I was diagnosed last November and its been a period of some transition and learning! I stay out of the sun, wear spf50 suncream all of the time, a wide brimmed hat, long sleeves etc,. I take a vit D tablet and a b12 injection once a month. I'd definitely check with your Dr before taking any supplement though. I take rest when I can and take my medication strictly.

The hardest thing for me is staying out of the sun (I live in Greece). It's turned me upside down and caused me great sadness. I've found talking with family and friends very helpful. Educate yourself about Lupus as much as you can. Try to stay positive... it's hard as hell but seems to make a difference. I hope you find some good coping mechanisms, best wishes 😀

[Johnnyfay in reply to AnonLupi]

Thanks for the message must be hard keeping out of the sun especially in Greece . No t so much a problem in uk😁. At the moment I get a rash on my arms and chest after a couple of days in the sun that’s been going on for years. Looking to go on holiday this summer with family but all I hear is stay out of sun . I always sit in the shade and experimenting with different sun screen brands

[AnonLupi in reply to Johnnyfay]

Enjoy your holiday! Treat yourself to a great hat (I bought myself a Stetson!), shirt and sunglasses, keep applying spf50 and stay in the shade as much as possible and you'll be good! 😀