LUPUS UK
21,657 members17,171 posts

Undiagnosed

Hi everyone. I'm new here.

I'm waiting to see rheumatologist. I had blood tests in December and my c3 was low which indicates lupus or rheumatoid arthritis. I have rash on my face, hair falling out and scabs on my scalp, fatigue, swollen ankles and legs ache soo much going uphill or stairs. My face goes red in the sun and depression is so bad some days. I have a disabled daughter who needs me. I just wanna get better. I am doing lupus diet. This is avoiding inflammatory foods. I don't eat potato, bell pepper, tomato. So you avoid nightshade. Also no gluten or dairy. If you get inflammation down in your body symptoms should improve. Anyone else doing diet? Oh I also take omegas 3, 6, 9 as they are good for inflammation too!

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Hi keiraleigh you seem to be doing everything to help inflammation keep it going. It is bad and difficult until your put on medication. Try taking general pain killers like paracetamol to help with pain avoid doing anything strenuous. The one thing I learnt was the energy levels if you run out of energy then that's when it starts to flare up so limit yourself to 2 hrs then take a rest and start again the sun is the worst it'll drain you avoid until you can get it under control I know it's hard with the weather we've had sun is a God send but unfortunately not for us the flare up on face and hair is usually the sun for me personally anyway. Little changes in everyday life will help to keep the symptoms under control my kids are grown up I can't even begin to imagine what's it's like for ppl in your circumstances other than take as much help offered so you can help yourself aswell. Hope you begin to feel better soon take care x

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Having a disabled daughter is difficult when you aren't well yourself and it is good to eat well for your energy. You also need to watch your stress levels because high ones can set off a flare, too, though I know it is difficult.

I eat an anti inflammatory diet, too, but can occasionally eat a tomato cooked now, as easier to digest and not losing nutrition, apparently.

I eat a little potato, too, but mainly sweet potato or veg. I eat no grains because most grains contain gluten, but I eat beans usually the small ones.

I eat only my own prepared food because I find that everything prepared has something that causes inflammation for me. I don't eat dairy either other than an occasional small piece of cheese or egg. I make my own almond milk.

I get my omegas from fish, nuts and seeds. I can take no supplements. I saw a nutritionist/kinesiologist and she said my body didn't know what to do with supplements, drugs, too, so don't take any. Paracetamol and other prescribed drugs wrecked my liver.

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Hi Cann

Thanks for your reply!

So glad to hear someone else is on a clean diet. My daughter is autistic and she is on diet too. How long have you been on this diet and what symptoms has it helped? I take omegas for dry eye syndrome. I also have iron overload! Of late I feel more thirsty a nd feel like I've got a sore throat and constant cold. When do these symptoms go?? How long did it take for you to get diagnosed and what lupus have you got? Sorry for all these questions

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I was having lots of blood tests and my arms were swollen, black, blue and painful, so I gave up, but doctor said it is immune problem, but not sure which.

I get skin, breathing, nail, hair problems, muscle, joint problems, tiredness, etc.

I was diagnosed with thrombocytosis, anaemia, hypothyroidism, but one doctor said Hashimoto's as can be hypo or hyper, asthma, allergies, etc.

I could not take the drugs and changed my diet going complementary.

I have been on diet 18 years, but it is not a diet as such; I muscle test what and when to eat it, but whole food and organic where poss.

It is like a balancing act for me.

For sore throats I use garlic, onions, herbs and lots of fruit, but only what I can take from muscle testing.

I was taught to do this by a nutritionist / kinesiologist who said I needed to be careful what I ingested for the rest of my life.

Dehydration can be a problem for me from chemicals, heating systems, Wi-Fi, technology, traffic fumes and pollution, etc. so the fruit helps there and water, of course.

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Hi Keiraleigh07,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

For information on the specific tests and criteria that are required in order to make a diagnosis for lupus, please read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

Skin involvement is common in lupus; it affects around 60% to 70% of patients. We published a booklet on lupus and the skin which you may like to read lupusuk.org.uk/wp-content/u...

Sometimes certain situations can be tough which is why speaking to someone can help relieve any worries and anxiety you may have. We have LUPUS UK contacts who can chat with over the telephone, these contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would a contact to speak to, you can email me at Chanpreet@lupusuk.org.uk with your name and address.

Drastic changes in diet can cause potential changes within the body, have you discussed the AIP diet with your GP?

We published an article on our blog about diet and healthy living which has a section on foods that some people with lupus feel like they’ve benefited from, in terms of managing their lupus. To read this article click here: lupusuk.org.uk/diet-and-hea...

Below, I have included some information links which I hope you find useful:

Coping with light sensitivity: lupusuk.org.uk/coping-with-...

Depression & Anxiety: lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

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No I have not really discussed my diet with GPS I eat meat, fruit, veg and sweet potato. All organic and sheep's yoghurt organic, eggs and ghee. I don't eat bread, rice or pasta. No sugar, no gluten. In my opinion the NHS guidelines are wrong. I reintroduced rice back in july and was having dark chocolate and white potato and I started feeling ill again. You are what you eat!

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I can see why, a GP told me she only had one session of nutrition training in the whole of her seven years training - that is why most don't have a clue and aren't interested in talking nutrition.

My father was fed large cheese sandwiches with thick bread when he was in hospital with gall stones. He said he couldn't eat it. I said I could see why.

When I asked the doctor if he could have a more suitable diet with gall stones, he replied, 'Don't ask me about diet, I don't know anything about that, you will have to ask a dietician!' My father died in hospital even though he walked in to have the treatment!

When I asked my GP if I could see a dietician about my IBD health problems, she said 'You know more about diet than our dieticians, so she referred me to a gastro-enterologist - a very nice man, but he knew nothing of diet either.

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