Please can you share your helpful diet vitamin ti... - LUPUS UK

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Please can you share your helpful diet vitamin tips please. What can I do to help myself?

Lisalou19 profile image
79 Replies

Your advice would be much appreciated.

I need to make changes. If anything has worked for you wether it be vitamins, diet, exercise (minimum I’m capable of doing)

I really need some self help guidance. I feel poorly about 5 days out of 7 and my mental health is becoming hard to manage on top of all these dreaded symptoms.

Thank you xx

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Jetblack1 profile image
Jetblack1

Hi lisalou19, I'm sorry u are struggling. I have no advice as yet (wish I had) only diagnosed in April so I too would love to know answers to your question.

I'm also struggling, It really does grind u down doesn't it!!! Hope u find some answers x

Lisalou19 profile image
Lisalou19 in reply to Jetblack1

It’s awful. So frustrating. I just brought vitamin D, b12 and turmeric. Need to try. I know diet is a big factor too. Not sure what we should be eating x

Jetblack1 profile image
Jetblack1 in reply to Lisalou19

I hope diet isn't a big factor as that's the only luxury I have!!! 😏 X

Lisalou19 profile image
Lisalou19 in reply to Jetblack1

I know processed foods are not meant to be good. My diet is terrible and I think I over eat now because I’m so depressed and fed up x

overnighthearingloss profile image
overnighthearingloss in reply to Lisalou19

You can also overeat if your body is nutritionally lacking as your body will be telling you to eat to correct any deficiencies.

Best advice I have is to eat food in as close to it's natural state as possible for the greatest level of nutrients. The further it is away from its natural state the more it has been processed. Sugar is inflammatory so keep it to a minimum. That includes any sugar containing products.

Ready meals are processed foods.

In recent years I have retrained my taste buds to enjoy citrus fruit which is one of the best sources of vitamin c and better for you than buying orange juice.

One of my more recent pill additions is milk thistle. This works wonders for me when I get acid. And it's still too early to tell but it may be having a positive effect in stopping my migraines before they take hold.

You may well have not heard of the Gerson Diet. I am not suggesting you do that anyway, but proponents have suggested it has turned around cancer diagnoses. Anyway some really sick people follow it. BUT, they also suggest exercise. And one of the really gentle exercises is to just sit on a rebounder (a mini trampoline) and bump yourself up and down. Apparently this helps your body's lymph glands to be stimulated. And helps to remove unwanted waste products from the body. That's the most gentle of exercises. Or you could start out by doing the same on the edge of your mattress. If you go with the rebounder you can start with simple rebounding and build up gradually to increase overall exercise ability

Lisalou19 profile image
Lisalou19 in reply to overnighthearingloss

I’ve said for so long my eating habits feels like my body is screaming for energy as I’m never full, worse when I’m feeling really sick.

Some great information there. Thank you xx

overnighthearingloss profile image
overnighthearingloss in reply to Lisalou19

Careful if you take to bouncing on the bed. The neighbours may start smiling at you 😀

Lisalou19 profile image
Lisalou19 in reply to overnighthearingloss

😂😂😂😂 thank you for making me laugh. Xx

lupette profile image
lupette in reply to Lisalou19

You may want to try keeping a journal of what you eat and how it makes you feel afterward and the next day. Alternatively, you could try an elimination diet. I know someone with a pretty severe case of classic lupus, who tried the Whole 30 diet (You can Google this and find lots of stuff on it.) and is feeling so much better that she swears she will stay on it forever. (I don't think I could) There are programs that include meals and meal plans, but I expect they are quite pricey. . or you can just get the list of foods that are allowed, and go from that. I think you stay on it for 30 days and then begin adding foods back into your diet, one by one, to see if they cause a flare. If they do . .you will know to never eat the food. Using this method. you will get a pretty good idea of what foods cause you distress and what foods make you feel good. You will need some will power to stick to it though! Good luck!

Lisalou19 profile image
Lisalou19 in reply to lupette

Thank you.

I know tomatoes and alcohol are triggers so far x

Trilliano73 profile image
Trilliano73 in reply to Lisalou19

Try cut out all Lectins and consume Olive oil I mean like big amounts 500ml a week if you can , look up Dr Steven Gundry he hits the nail on the head!!

Lupiknits profile image
Lupiknits

I’m sorry I can’t help much. Have they ever checked your VitD? Mine is regularly too low and I need loading doses. I’d always thought D was something good for bones, but it helps with a lot of other things like depression. x

Lisalou19 profile image
Lisalou19 in reply to Lupiknits

I do take a vitamin D & C chewable everyday. Just brought a higher vitamin D supplement, turmeric and b12. I’ve really got to try something, the thoughts going through my head are pretty dangerous. The good thing is I’m aware of it and know I need to fix it or at least try xx

Lupiknits profile image
Lupiknits in reply to Lisalou19

I think Pro is our resident expert on how much D is needed - and it’s more than we think. I missed the discussion of it in Loulamb’s post below.

If the thoughts get much stronger or are there more often, my advice would be to seek help.

Cyberhug xx

Lisalou19 profile image
Lisalou19 in reply to Lupiknits

It would make sense with vitamin D, as I’m now avoiding the sun.

I will ask my GP to re check.

Thank you xx

eekt profile image
eekt in reply to Lisalou19

Hi Lisalou! It's so tricky to eat well in the throes of lupus, but as our GI tract is 80% of our immune system, it's really important!

Vitamin D is linked to autoimmunity and there's some research suggesting it's a risk factor*.

OTC supplements won't make up the difference if you're low - I had a loading dose of 25,000 units/ wk for six weeks then 1,000 a day prescribed indefinitely

Vitamin B12 deficiency can cause all manner of problems: Foggyme is our resident expert (thank you X :) )

Omega 3 is vital too, that's salmon twice a week (debates about mercury in wild salmon rage on...farmed salmon are fed anchovies, so I cut out the middle man...not everyone's cup of tea, I know)

Oats - superfood! If porridge doesn't appeal (what's not to like, with cream and smothered in honey) try soaking oats overnight with dried fruit, and eat it with fresh fruit and yoghurt - delicious!

This might not be what we would like to hear, but we need to eat dark leafy greens every day, or broccoli, as folate is needed in many processes...a pharmacist gave me great tip (the only tip I've had for looking after myself and SLE !)...stir fry kale with sesame seeds in linseed oil - a whole bag shrinks to a couple of spoonfuls, and it's TASTY!

We need seeds for minerals (zinc, magnesium) all important for the chemical reactions that go in nutrition absorption...linseed oil is very high in Omega 3 if you don't like fish

There are 10,000 super recipes on the BBC website for all occasions (bbc.com/food) as I think Louise-a pointed out (broccoli stilton soup, thanks, yum! X)

I'm not a nutritionist (Joy's our food scientist x), just have learnt from tips along the way as my GI symptoms were the first to make themselves known

Might be worth asking your GP to test for all the vits and minerals he/she can, as one deficiency can lead to malabsorption of others eg you need VitD to absorb calcium

All the very best xxx

*ncbi.nlm.nih.gov/pmc/articl...

lupette profile image
lupette in reply to eekt

The thing about vitamin D . . . it has to be vitamin D3 or it will not help. You can take all the vitamin D in the bottle and your blood work will still register low. (I know because I did this for a few years. Not the whole bottle at once, but mega dosed everyday for a couple of years and still got low numbers. When I read about D3 and started taking that, my numbers normalized.) Just make sure you are taking Vitamin D3!

eekt profile image
eekt in reply to lupette

Indeed! I have D3 on prescription! xxx

PMRpro profile image
PMRpro in reply to Lupiknits

How much you need depends on what your blood level is - if it is high enough, then just a maintenance dose will be enough. But if it is low, the RDA will never bring it up to a decent level and a loading dose is needed to fill up the store to start.

Just seen eekt's reply saying the same.

Lisalou19 profile image
Lisalou19 in reply to PMRpro

Going to make an appointment with gp and see if they will re run blood test.

As for eating salmon, can you eat like the tins of salmon? I’m not a fish lover x

eekt profile image
eekt in reply to Lisalou19

Best fresh-frozen salmon (Iceland does packs at a very fair price) as tinned counts as processed...you can curry it or stir-fry it to improve the flavour and texture, doesn't have to be poached (urgh!) xxx

Lisalou19 profile image
Lisalou19 in reply to eekt

😬 the exact face I’m pulling. Is there any substitutes? X

eekt profile image
eekt in reply to Lisalou19

😅 😘 sardine curry wouldn't go down well then !...make some chocolate orange flapjacks with the bairns and substitute linseed oil (omega 3) in this recipe: realfood.tesco.com/recipes/... (add a little orange juice and drizzle choc on top - great fun!) xxx

Lisalou19 profile image
Lisalou19 in reply to eekt

🤮 sardine curry!!!!! I just found a recipe that apparently even haters of salmon will eat. Will give it a try, twice a week you said?

I’m so willing and eager to make adjustments x

Lisalou19 profile image
Lisalou19 in reply to eekt

I’ve brought salmon steak to try for dinner tonight 😬x

eekt profile image
eekt in reply to Lisalou19

GREAT! Stick them in the oven as PMRPro suggests along with hedgehog spuds and wait till they're a little crispy! Bon appetite! xxx

eekt profile image
eekt in reply to Lisalou19

Did it go down well ? xxx

Lisalou19 profile image
Lisalou19 in reply to eekt

Morning eekt,

I cooked it in sweet chilli sauce. The smell while cooking kind of turned my stomach. I had new potatoes and veg with it so I kept hiding bits in with my other food. I wouldn’t say it was vile but also not enjoyable. Still if I can add it in twice a week I will.

X

eekt profile image
eekt in reply to Lisalou19

Well done...that's a fine recipe idea! The smell IS difficult! xxx

Lisalou19 profile image
Lisalou19 in reply to eekt

I’m thinking next time to wrap it in bacon, do you think the 2 will go together? X

eekt profile image
eekt in reply to Lisalou19

I'm coming round! bbcgoodfood.com/recipes/206... xxx

Lisalou19 profile image
Lisalou19 in reply to eekt

That looks good. I don’t think I could eat that big piece of salmon though 🤢. Good to know bacon can go with salmon. Always room at our table for one more 😉xx

PMRpro profile image
PMRpro in reply to Lisalou19

Have you tried "roasting" your salmon? I set the oven at 185/190C, put a bed of sliced veg in a dish and lay a piece of fish on top. I sprinkle some dried herbs on top - anything you like, Provencal is a good mix - and some olive oil (or a few knobs of butter). Put it in the over for half an hour ready to serve

The veg can be anything: courgette, fennel, tomato, asparagus, peppers, cauli/broccolli. The piece of fish can be still frozen (easier and less fishy to handle), it just takes a minute or two longer to cook.

No smell (even OH doesn't complain) and only one dirty dish that you can eat it out of if you like!

Lisalou19 profile image
Lisalou19 in reply to PMRpro

I just read about roasting it. Kind of makes it sound less fishy in itself.

The last time I tried salmon it was the raw stuff, it was awful x

PMRpro profile image
PMRpro in reply to Lisalou19

No - raw is not recommended for anyone who is at all ambivalent about fish!!!!! OH's father was a fish merchant - here OH eats frozen fish nuggets, nothing else ... In the UK the chip shop is acceptable!

GlasgowHen profile image
GlasgowHen in reply to Lisalou19

Yeuch, raw salmon. Definitely roast it. My apparently fish hating daughter will eat it. I just wrap it in tin foil with no seasoning for her but I quite like it with a bit of sweet chilli sauce

overnighthearingloss profile image
overnighthearingloss in reply to Lisalou19

What do you mean? Sushi style or smoked salmon?

I can't tolerate sushi of any type but can have small amounts of smoked salmon with some cream cheese in moderation

Lisalou19 profile image
Lisalou19 in reply to overnighthearingloss

I’m going to try some salmon steaks . My children want to try them too so that’s a positive. I don’t eat fish, you can bet your bottom dollar I will have an allergic reaction to it 😅 x

overnighthearingloss profile image
overnighthearingloss in reply to Lisalou19

As others have said, make changes gradually. Your taste buds do change over time and you may find that there are things you have hated previously that you suddenly find yourself liking.

Just don't expect to like all different food items immediately.

Break yourself in gradually. Sometimes the addition of a sauce or extra flavouring can help until you get used to new flavours or textures.

lupette profile image
lupette in reply to PMRpro

Sounds good! What time is dinner?

Jetblack1 profile image
Jetblack1 in reply to Lupiknits

I had a whole load of bloods done for thiroid, vit D etc when I'd seen specialist and nobody has the results. Not my gp or the hospital I had them done at. So frustrating. 😕.

I do feel better when it's sunny tho strangely enough. I know others that don't.

eekt profile image
eekt in reply to Jetblack1

I feel re-charged in sunlight - I'm lucky not be photosensitive (yet) xxx

PMRpro profile image
PMRpro

As good a place to start is to remove all the processed food from your diet - which immediately removes a lot of junk used by food manufacturers, loads of sugar and salt - and try to eat foods you prepare yourself. This recent article in the Guardian shows why:

theguardian.com/science/201...

Sugar and simple carbs (like the white flour used in manufacturered foods) are very pro-inflammatory so removing them may help your body be less inflamed. And the vitamins and trace elements found in vegetables and fruit are absorbed better by your body than any in tablets - they also seem to have a better effect, but no-ones knows why unless there are very subtle differences in the structures.

All starts are hard - but one friend did it by cutting a quarter of her carbs to start, after a months she halved the amount and then again after another month. It made getting used to the changes easier. After a couple of months you get so used to the new way of eating you feel less well if you binge on the "bad" stuff - and one friend even craves green veggies when she doesn't have her usual amount!!

Lisalou19 profile image
Lisalou19 in reply to PMRpro

Thank you

I binge on chocolate 🤦‍♀️ But I do think depression is to blame for this and I know the eating is most likely contributing to feeling so rough most days x

Jhpc profile image
Jhpc in reply to Lisalou19

Try slimming world, to eat healthier, no calorie counting, got lots of info on PinIntetest, doesn’t cost you that way.

Also you could do a list of things you would like to do for “me” time, things you used to enjoy....

Hope you feel better soon.

Onwards and upwards xx

overnighthearingloss profile image
overnighthearingloss in reply to PMRpro

I wouldn't have guessed that you could crave green leafys in the past. But it is definitely true for me these days. And yes to feeling less well if forced into situations where I am forced to eat less well for a period.

Roarah profile image
Roarah

IN the last six months I have done three things consistently so I do not know which works or if all three together have worked but my antibodies are almost now non existent. I have been having more better days than not. And my BMI is in the low 20s when for the last few years it was at 24.

I tested insufficient for vitamin d so I was put on 2000 ius per day. I was also low on my vitamin B's too. I added these through fortified cereals making sure to have 100 to 200 percent of the RDA of these.

I also added 40 grams of fiber per day to my diet after my immunologist mentioned a theory about gut bacteria being a possible cause to autoimmune disease. I do not have celiac or small intestinal bacteria overgrowth so it was safe for me but you should always mention diet changes to your GP.

Next I started meditating 15 to 20 minutes per day and taking a 30 to 60 minute brisk walk. I started with just five minutes on my first walk due to right sided paralysis and gradually built up. Plus I added a weekly Yoga class and weekly CBT therapy.

Oh and in my acute phase after stroke I found watching silly sitcoms really lightened my mood on days I could not face doing anything. After a few Big Bang episodes I noticed that I felt better. Laughter really might have medicinal effects.

I hope you find some relief soon. Xo

Lisalou19 profile image
Lisalou19 in reply to Roarah

I’ve started walking again ✔️

Minimal has my legs feel like they will break!

I do meditation ✔️ Although I fall asleep most times

Funny you should mention what to watch on tv! I never watch anything funny. It’s always crime drama based. Maybe that is something I can change because your right laughing is the best feeling. XX

Roarah profile image
Roarah in reply to Lisalou19

I do only 12 minutes of kk meditation, shown to improve cognitive decline in studies, during the day. You sing, whisper and silently chant so it keeps me awake :). Then 15 to 20 minutes of mindfulness at night specifically to fall asleep. So falling asleep is certainly ok! Also I have been going to sleep every night by 10pm and waking at 6am. Consistant Sleep hygiene is also very helpful with mood and health.

As to exercise just keep doing what you can do do not set a goal just doing what you can in great!

Lisalou19 profile image
Lisalou19 in reply to Roarah

Where can I find KK meditation? X

Roarah profile image
Roarah in reply to Lisalou19

I hope these links work

Article teaching how to do it alzheimersprevention.org/re...

Video I use to practice it, there are others on Google you may like better m.youtube.com/watch?v=jfKEA...

Study about possible effects of music vs kk meditation ncbi.nlm.nih.gov/pmc/articl...

Accumulation, meta analysis, of studies as to how meditation or yoga might improve the brain's nuero plasticity and studies of changes seen in short time meditators. ncbi.nlm.nih.gov/pmc/articl...

You do not have to try it and it is a bit new agey but it helps me even if a placebo effect I feel mentally healthier and my stroke caused deficits bother me less.

Xo

Laura

Lisalou19 profile image
Lisalou19 in reply to Roarah

Going to try this , I like meditation although I can never switch of my own thoughts. I’m a worrier so bed time is over thinking time !!!! Trying to train myself . X

Roarah profile image
Roarah in reply to Lisalou19

My therapist says stray thoughts are fine as long as I do not try to over think, deny or Judge them. I am suppose to accept the thoughts, acknowledge how I feel at that moment and then let it go.

No judgement is the key not no thoughts. I am a worrier too and I had butterflies every day most of my life until a few months ago. I now have stayed calm through my fathers serious diagnosis, the death of a favorite aunt and coming cancer scans for my husband's rectal cancer. I still cry, laugh, care but I no longer am pre occupied with health anxiety for my loved ones or myself. I just experience the moment and let tomorrow stay in the future until it comes.

The kk meditation is shown to shrink the amygdala, a large amygdala is thought to be characteristic of anxiety and depression. It might be how it is helping but who knows.

Lisalou19 profile image
Lisalou19 in reply to Roarah

I had a go last night. I eventually fell asleep but I was blocking out my thoughts, which is hard work isn’t it. X

lupette profile image
lupette in reply to Lisalou19

Good job Lisa! If you take just one extra step every day . . you will eventually be climbing the mountain!

Lisalou19 profile image
Lisalou19 in reply to lupette

I’m really strong at the minute. This is normally my worse time, time of the month 🙄 but I’m doing lots of meditation, riding my exercise bike and keeping my head space as clear as I can, ie not tackling all those phone calls that need to be made. Stress is no good.

Also have set my bed time to 9’oclock with 30 minutes winde down meditation, I think that’s helping xx

Roarah profile image
Roarah in reply to Lisalou19

I hope you continue to take care of yourself! Moms never seem to get enough sleep and it is so important for our wellbeing.

Xo

lupette profile image
lupette

Hi Lisa :) I am also very sorry you are struggling. You will find lots of empathy here. It's a great site. Here is what works (most of the time) for me:

1) Take fish oil - lots of it and make sure you get a quality brand. It helps with inflammation. It will probably take around 45 days for you to get the maximum benefit from it. (My old Gastro doc in Tacoma WA wrote a book about it: "45 Days to a New Life". It's worth reading.

2) Take vitamins D3, E, C, B, (B12 if you need it for anemia but it will not hurt to try it if you are not sure.), & Q-10. I also take supplements for Osteoporosis.

3) Get your thyroid levels checked.

4) Exercise regularly. It helps! I walk everyday and I try to find a mountain or a hill to climb.

5) Eat a healthy diet. You will need to figure that out for yourself. Everyone is different. Keep a log of what you ate prior to a flair up. Try to stay away from foods that cause them. For me it is sugar, too many carbs, too much alcohol, & lots of different grains. There are lots of elimination diets you could try if you want to. Just Google it and you will find many.

6) Try to stay away from toxic chemicals. This includes many cleaning products. These make me sick in a hurry! Also. . be careful of chlorine from swimming pools. Plan to stay away from your home for a day or two after the pest guy sprays. That will make you sick too!

7) The sun is possibly the worst trigger for me. I can handle around 20 minutes in it, but any longer than that . . . big time flair up!

I hope this helps! Good luck and stay well.

Lisalou19 profile image
Lisalou19 in reply to lupette

I going to put a 45 day calendar on my fridge to give me focus.

No hill climbing for me though. It feels like someone is dragging a knife up the back of my legs when walking up hills.

Hey actually I’ve got 44 days left 😉. Thank you.

Xx

lupette profile image
lupette

Smile :D Baby steps . . keep taking them . .. you will get up all the hills!

Weeg23 profile image
Weeg23

My mental health has been badly affected since going down hill this year. My citalopram has really helped calm my panic attacks down as i was having about 2/3 a day. Also i drink 2/3 cups of camomile tea a day its very calming helps me sleep at night too which is a bonus. It helps soothe my burning stomach, if i feel sick it helps with that and also helps with my heartburn. Its actually a really good anti inflammatory good for the whole body. Even use the tea bags on my scalp to calm the itching and redness down. My mother swears by it and now it kind of looks like i will be going down that same route. My partner also recently found this app on his phone that has helped us both sleep at night when we are struggling to sleep. It is actually really helpful its called breethe and it has meditation and nice calming noises. I was very unsure about it at first but when i seen my partner sleeping within 5 minutes of putting it on i was shocked and its amazing because it works for me too. It has got in app purchases but i think u can try it for free for a week im sure. Hope this helps! Take care x

eekt profile image
eekt

An article with 'the new food rules' <sigh> but it is very helpful in explaining some parts of nutrition! xxx

msn.com/en-gb/health/nutrit...

PCRHDRFDF profile image
PCRHDRFDF

Firstly go to your GP and get a blood test done, to see exactly what your body needs. Your GP should then be able to prescribe what you need. This will also give you the information you need to adjust your diet for foods good for your deficiencies and learn to listen to your body and pace yourself throughout the day.

Simply taking a bunch of stuff is pointless as your body will simply expell them through your number ones and twos.

The only other thing I will recommend is Dr Richard Schulze super food, it works. You can find it on Amazon.

I hope this helps and I recommend you take the super food with cranberry juice or get the tablets. There are no known side effects as it's just freeze dried food selected to boost your immune system, enrich your blood and boost your energy levels.

Hi lisalou19. I am so sorry your suffering so much but if your wanting change start with a diary of everything your eating and drinking. If you have the willpower and determination you will see a change. I have personally founds these things work for me but it’s not easy. Start the day with a glass of mineral water not tap with the juice of a freshly squeezed lemon and lime. Sometimes it’s the crap in the water or try getting a water filter. Try not eating all sugars until your well then try a little Manuka honey. Get to a steam or sauna room. You write down all your symptoms and eventually you see a pattern of foods making you unwell. Eat smaller portions as sometimes your body is overloaded. I have tried gluten free, diary free and free from all additives. It’s in everything but cutting it out helps, i know when I have eaten something I shouldn’t have such as yesterday when I fell off the wagon and had a chocolate bar. Never again till next time. 😂. I have tried to cut out anything artificial and have bought myself a juicing machine. Eat organic eggs and I had to give up anything in a packet or tin. It’s trial and error. For supplements a good multi vitamin, D3 and vitamin B 100 from Holland and Barrett. Read up on the anti inflammatory diet. There’s lots to find on you tube. I like the Jason vale ones. You sound just like how I can be if I have the wrong foods. I have had to give up so much. Let me know how you get on. I have dozens of vitamins herbs and supplements it’s the only thing giving me the energy. Try ashwaghanda and pure coconut water. Have a great day and I hope you feel much better soon. Elena. 😀

Lisalou19 profile image
Lisalou19 in reply to

Thank you. Only recently have I started thinking maybe in something in the water we drink 🤔

So many new diagnosis of these illnesses that my conspiracy theory brain kicks in x

Yes your so right to suspect the water. I had allergy tests almost 20 years ago and was told I was highly intolerant of water. If I go out and have a tea or coffee am so unwell. Read that Russell grant won’t touch water as it’s filled with medications, waste and bleach it’s something to avoid if you have an auto immune disease. Your fruit has to be washed thoroughly and put in a juicer. I have saved up and bought myself a vitamix but any will do. Try getting rid of anything like cleaning products too or use them and don’t buy anymore. I now clean with white vinegar, aromatherapy oils and eco washing up liquid. Get plenty of fresh air and try getting a rough sponge or loofah for the bathroom as it helps your lymphatic system. I have gone from so ill to better then back to I’ll again. If you can get your water in glass bottles even better but you will start to feel well. All the drs and specialists want to do is pump us full of drugs or fob us off unless your lucky enough to find a decent healthcare professional. Make your own bread if you can as I read they put embalming fluid in some breads. Try some pineapple in a blender with coconut water. Look for the 100 percent stuff with no additives. Look for jack Fulton’s or a herons store as I bough a lot of coconut waters that if I would have bought them at Holland at Barrett would have cost me over £80 but my bill came to £15. Stockpile with natural mineral water and try Evian, Volvic or spring water. I am just trying a water fast for a day followed by natural juices and coconut water I have tried it before as it clears my migraines. I am convinced that the it’s the wrong foods that making us all ill. I hope you can try it and let me know how much better you feel. It’s not easy as your limited especially when everyone around us is eating what they want but it will pay off. I am already seeing a different me which is great. If I find anything else I will let you know but a juicer and mineral water is a must. Have a great day and I hope your resting. Whilst you are so unwell you need your rest to get better. Take care. Elena. 😀

Oshgosh profile image
Oshgosh

I have only recently been diagnosed with Lupus. Started on immunosuppressants last week- everything crossed!!

When I saw the respiratory pharmacist,Inasked about talingbturmeric. She said yes,but advised waiting until established On Azathioprine

Googled diet for lupus.seems to be Mediterranean diet inspired.

So,am trying to eat fairly sensibly.

Thank goodness I’m not into chocolate / sweets at present,thank goodness. Hope this helps a bit,I’m new to Lupus,so am still learning.

SRiley profile image
SRiley

Hi Lisa,

Thinking of you. I’ve been feeling really down too, it’s a horrible head space to be in :-( So I feel for you.

One thing that I’ve found has helped me a little bit is doing yoga. There were a few days last week when my legs felt so heavy and I was struggling to do anything. I talked myself into doing a bit of gentle yoga and it seemed to get my circulation going. The pain seemed to ease a little. You can find some yoga videos on YouTube to follow- Yoga with Adrienne is good in that it’s slower paced and generally easy to follow.

Can’t give you any diet tips as my diet isn’t great...I’m a bit of a snacker! But I’m going to look at changing my diet too. My problem is that if I get really hungry, I start to feel faint and my vision goes blurred. So the snacks keep me going!

NewEngland3 profile image
NewEngland3

Dg with lupus at 22, musculoskeletal symptoms and light sensitivity, no internal organ damage, age 44 dg w/lupus nephritis(3 months ago)--I have done some research and apparently some people have done better with vegan or I should say plant based nutrition -you can google it. So for 3 months now I have stopped all dairy/eggs/meat(red meat-bone in was my last guilty pleasure in life I had to give up)/low salt, i also stopped gluten because i am desperate to get better---I felt better first month, but had cont protein loss in urine and have gone on cellcept 7 days ago, I am planning to cont this diet and see what happens....i agree that positive mind set, laughing, endorphins, loving life, where you are , people around you makes a lot of positive impact on lowering antibodies...I am struggling to become an optimist--just not in my nature--but I am going to restart therapy, possibly also do acupuncture and so on...so just stuff to make me number 1 in life....managing health anxiety thoughts has been a struggle.

NewEngland3 profile image
NewEngland3

PS plus 1/4-1/2 cup of flaxseed daily, decreased omega 6 foods and oils, use mostly olive oil now, was on fish oil but doc said can increase bad ldl and with nephrotic symptom also can go up--getting fasting lipids this week and based on that may go back on it

Lisalou19 profile image
Lisalou19 in reply to NewEngland3

I did try this oil once but it felt like I swallowed a mouthful of baby oil. Maybe I brought the wrong one x

Hi there, so sorry that you are feeling so bad. I have lupus and DO NOT take any medication because I have a heart condition the plaquenil I was taking was affecting my EKG. (Plaquenil made me feel terrific by the way). So for almost a year now I have used no medication. Here is my best advice and I've gleaned it from many sources:

Everyday I take-

Organic Apple Cider vinegar, tumeric (liquid form I buy at Costco) CoQ10 (liquid also from Costco), multi-vitamin, B vitamins (very important! I take the kind that dissolve in my mouth), garlic capsules, pro-biotics (very, very important) I keep myself hydrated, and I drink green tea with lemon and honey everyday. Honey is a miracle serum. I try my best to never eat sugur, it really is like poison to our bodies and causes inflammation. Eat lots of green veggies, an avacado every day, lots of eggs to feed your brain, nothing processed. I keep an apple with me whenever I leave the house. We all have rough days but hang in there, take little steps and keep looking forward. God created our bodies to heal. Try to walk a little every day. You'll see wonderful things that you miss if you drive. I pray too. I've been through some really horrific situations related to violent crime but God, who is faithful and mighty, has seen me through. I know for a fact that He cares about you. Lord bless you. We are all rooting for you dear heart.

maye1 profile image
maye1

I am a big believer in Turmeric. For pain and depression. But it may not be right for everyone. Also, I walk outside everyday, meditate daily, and spend time around people who make me laugh. I’m very sensitive to gluten so I’m strict GF. Again, everyone’s different - what’s right for me may not be right for you.

Treetop33 profile image
Treetop33

We can all sorts of Vitamin and mineral deficiencies, B Vits, Magnesium, D3 and potassium (if you are on Pred) are the ones I know about. Also iron. Best to get tested, if you can.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Lisalou19 ,

I just want to post a comment advising caution when trying an supplements, radical changes in diet or complementary therapies. It is always a good idea to discuss them with your doctor first so that you can be warned about any potential adverse effects or drug interactions you may have as an individual.

It is always important to bear in mind that everyone with lupus is different and what works for one person may not work for someone else, or could be potentially harmful.

Trilliano73 profile image
Trilliano73

Vitamin D is a must 5000iu 4 times a day

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Trilliano73

This is five times the maximum recommended daily intake of vitamin D which could be harmful. An daily intake of this amount has been shown to be harmful. Too much vitamin D can cause an abnormally high blood calcium level, which can result in nausea, constipation, confusion, abnormal heart rhythm, and even kidney stones.

Trilliano73 profile image
Trilliano73 in reply to Paul_Howard

It’s fine I’m under Dr Gundry the Vit D is a short term blast as he calls it for 7 days this is of course if yours are low

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Trilliano73

Hi Trilliano73 . Thank you for clarifying that this is a very short-term treatment course. It is important to be clear about this because otherwise the recommendation in your comment could be followed by someone.

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