This is great news Dryad. I am so pleased that you are feeling well, & that your last remaining symptoms have disappeared too. It's wonderful that your rheumy is interested, & helping you with your referral to the homeopathic hospital.

I've just been scanning back through your posts to see if there is a website or book about the ant-inflammatory diet. Like you I was diagnosed with ME prior to lupus. But I do think it was lupus all along, as I've had auto-immune problems all my life. I also have trouble tolerating meds, so my options for treatment are becoming very limited.

I've made some general adjustments to my diet over the past year, which I can feel the benefit of. But would now like to follow a plan more specific to my illness. Please can you point me in the right direction to find out more information?

Best wishes. X

Yes, see my latest comments below.
I would have a read up, and then develop a strategy. Always get support from health professionals before starting anything new, and get support from friends and family too. Be aware that it's a journey, with many twists and turns, but a worthwhile one. It sound like you have already started on it.

Do ask me any questions and I'll try and answer. I don't have all the answers, I'm not a professional, but I'll do my best to support you.

x

Brilliant, well done for sticking with it and thank you for sharing. PT

Thank you Dryad and I am happy that this is working for you. Ialso agree that diet is a big factor and would be interested if you can recommend any books. I do try and cut out dairy, sweet things, caffeine and know red meat isn;t meant to be good but I think doing more may help. It is a dilemma isn;t it re what to do. I was having too many flare ups and desperately needed extra meds but I would love it if I didn;t need them. It's a frightening thought to see about coming off them and soley relying on anti inflamatory diet .....is this a thing to do when your illness is more stable? I would never come off without GP advice anyway but am interested to know more. Thank you for letting us know and after sharing your steroid experience with you its good to hear that you are doing well. Take care xx

Thank you.
You are wise to be cautious. Take small baby steps. Have a look at the books I've recommended, pick and choose what seems to suit you, and get support before you make any new changes to your diet or lifestyle.

x

Hi Dryad, so pleased that this lifestyle change is working for you

I would love to be able to get to a point where my diet was able to control my Lupus, but unfortunately it would take nothing short of a miracle. I think that this is the kind of thing that you would phase in slowly I presume? and under the guidance of your rheumatologist? I would be scared to stop my meds for fear of something bad happening.

Recently I made the decision to cut artificial sweeteners from my diet, and I'm surprised at how much of a difference this has made. I did not read the Facebook article until after I cut them out, but I think what they are saying makes sense, certainly I am able think more clearly than I have for a while and it seems to have helped. I have also considered the low gi diet as part of my treatment but not instead of it. I don't really know what foods cause inflammation, so like the others, would appreciate more info

Have considered a couple of supplements but again am not prepared to do this without back up from rheumatologist. But then I do have a cautious nature!

So pleased that you are feeling so much better

It's very interesting that you noticed cutting artificial sweeteners had a positive effect. That's good anecdotal evidence that they are harmful to the brain as the article says.
Yes I would recommend a low GI diet. That's essentially what my diet is and it does help. There are many books out there that can help you with that.
Don't bother with supplements (except may be Vit D). Eat healthy fresh veg and fruit, and choose whole foods over refined or processed ones. Be aware that you need lots of Omega 3 (I get this from soaked chia seeds on my breakfast, and from oily fish). This does help the joints and the brain.

Hi everyone, thanks for your feedback.

Yes I would never recommend that you stop taking your medication. I have never had organ involvement, so I don't feel at a high risk of kidney failure, so I could feel more confident about trying to reduce my drugs in small steps with guidance of my GP and rheumatologist, and I have seen a private Nutritional therapist. What I am describing in my blog is a very long journey of self discovery here. It's taken many years of listening to my body and fine-tuning what I put in it. However, there's no time like the present to start that journey:

As a first step I would recommend that you keep a food/mood/symptom diary. This can give you some valuable feedback about what foods you might react to. It's not always as simple as 'eat--reaction' because sometimes our bodies react slower to certain foods and it may take a few days for the reaction to show up as an increase in symptoms, but it's a good first step. Sometimes it can be simple: I've noticed that within a couple of hours after eating red meat I'll usually get nausea and flu-like aches.

There's a book called 'The Lupus Recovery diet' that I read last May. Here's the link:

www.amazon.co.uk/Lupus-Reco...

it's a useful book in that it talks about how important good diet, sleep and exercise is for people with lupus, and it gives examples of how others have recovered. That's encouraging to read! However I found the diet to be rather brutal: no meat or dairy, no gluten no sugar, just fresh vegetables and wholefoods. I had a go at it and found it really tough. My symptoms were continuing to get worse at the time, although I now think that was to do with the sunny weather and my photosensitivity. However, from there I adopted a new diet: I went from being wheat free to completely gluten free, cut out sugar and most dairy, and ate more fresh veg than I did before. I was still on 3 x 250mg Naproxen per day at that point and was getting lots of pain and weakness in my arms. After the disastrous 2 week long episode with steroids, I became more determined to give the diet a go as it seemed like my only option.

In July, my nutritional therapist recommended I have a look at the GAPS diet. This is all about the theory that all auto-immune diseases and other neurological ones start in the gut. The gut wall becomes more and more damaged over time, with increased food sensitivities, and it becomes 'leaky', letting through large proteins that the body attacks along with your own tissues, causing inflammation. To help heal the gut, she proscribed a diet with lots of probiotics like sauerkraut, kefir yoghurt and making chickens stocks, as well as sticking to my no-gluten, no-sugar, low-dairy, low-meat diet and including lots of fresh veg. This has helped, over time (August-December) I noticed a reduction in pain and inflammation. Here's a link to the website:

gapsdiet.com/Home_Page.html

and the new book:

www.amazon.co.uk/Gut-Psycho...

Beware, it's rather full-on! I'm glad I had my nutritional therapist to guide with this.

Then over xmas I realised that the 'fast' I had in December had increased my energy levels and reduced my neurological symptoms. So using the new book, I started the 5:2 diet. Here's a link to the book:

www.amazon.co.uk/Fast-Diet-...

this book gives you all the research and science behind why this is so good for you. I feel a difference and I'm going to stick to it. It's so good because it's only 2 days a week that you have to restrict your calorie intake, the other days you can eat as much as you like (but you still lose weight!). I'm still eating my restricted diet as above, but it's great. I've made a great recipe for gluten free pancakes, which are really yummy and I eat them with lemon and honey as a treat quite often. I made a gluten free cake with the kids on the weekend with sugar in it and my body complained afterwards from the sugar (increased joint pain, but not so bad that I needed painkillers), so I won't do that so often.

I should add that I never drink diet sodas, I rarely eat chocolate because it gives me awful headaches, I don't drink caffein (makes me feel really unwell and moody) and I don't drink alcohol (well may be the odd sip, but never anything more). But cutting these things out does not bother me at all these days because I know that feeling well is much more preferable.

So you can see that it's a long personal journey. I did not make these changes to my diet overnight, that would be impossible. I know this because at times when I've tried to change things too quickly, I've felt so overwhelmed that I get depressed. But bit by bit, small step at a time, I've finally got to a place where I feel like I've got a good quality of life without taking any drugs, where I feel like I can start to live the life I want to live. I know when the sun starts shining I'll have to be careful again (I'm very photo sensitive), but for now I'm really starting to build confidence in my health. And that's a massive step forward.

I hope this inspires you to have a go. Take one small step at a time. Get support. Practice listening to your body, trying to discern what is a food craving and what is a nutritional need. Talk to your family about how you might introduce changes to eating habits and get their support before you start. Read books and research what foods cause inflammation (I've listed many here). Above all, start believing in yourself as having some power over this illness.

...and by the way..
I'm not sure what work you do or not, but it's good to be aware that there are other causes of inflammation; injury, over exertion, and stress. If you have a busy job and you are on your feet all day this will give you higher inflammation levels. Diet can help a lot, but these other factors need attention. I manage my stress levels as best I can, but this too has been a long journey of self-discovery! It's been hard to develop enough self-respect to give myself the time and space I need to get well. I've had to learn how to put my needs first, even when that seems selfish in that moment, but it pays off in the long run. To get to that point I needed support from my family, which took time.

I read this with interest as I am a vegetarian who does not drink alcohol or smoke, and have been since before my diagnosis with Fibromyalgia and Lupus. I used to drink lots of squash due to dry mouth and not wanting to drink lots of tea. I generally only have about 3 cups of tea a day as that makes my mouth dry. After reading the article about Aspartame I have stopped drinking squash now having watered down juice instead. I also have had problems with steriods and on taking Azathroprine...made me violently sick...have been on Methotrextate, which at increasing doses also made me feel very sick. I am now waiting to be shown how to inject Mtx. I have been off any medication...due to how slow the NHS is now because of all the awful changes. I am very very fatigued, and have a lot of pain and just rely on paracetamol for pain relief. My GP keeps trying to get me to take anti-depressants but I am resisting, am using a counselling service instead. I am in danger of losing my job so implications are vast and huge. My point being, the first time I have felt more in control of my illness was when I was put off sick for a month instead of the usual couple of weeks. The relief of knowing i wouldn't have to fret about a doctors visit and outcome for a whole month made a major difference. I came to the conclusion that although I can still be extremely ill some days, the general lack of stress seems to have been a main contributor to both conditions. My diet had always been good and that has been a source of jokes from friends that I look after my diet but have still managed to get these conditions! I always homecooked all my food until recently as now the preparation of food causes me pain. I think a healthy diet has got to be better for you what ever your health, and cutting down on chemicals had to be good....however I am NEVER giving up my chocolate biscuits..they are my only treats...and you've got to have those in our life!!!!

Hello Dryad

I was really interested to read your blog post here and the successes you have found through treating your condition using diet and natural approaches. I have been taking a similar path and I really take inspiration by your use of the phrase using 'baby steps' with whatever you do.

I have currently been diagnosed with primary sjogrens syndrome at age 46 which my consultant thinks I have had most of my life although this has previously been called juvenile arthritis when I was 16 and lupus when I was 36! Apparently these autoimmune diseases should be seen in terms of a spectrum of symptoms which can take on a different character at different times of our lives.

I was getting along with life just fine until about 4 years ago when the 'Sjogrensy' symptoms decided to rear their ugly head - for me this has meant dry mouth and throat and losing my voice, IBS pain, sluggish digestion, piles (yes - I will admit to them in writing for the first time!), anxiety issues and panic attacks, heart palpitations and pericarditis. After being refused a referral by the GP for about 6 months despite the cardiologist telling me to ask for one, I finally saw the rheumatologist and got 'back in the system' last August (this despite my medical history going back 30 years with autoimmune stuff!).

Anyway, after seeing the rheumy, I decided not to take Hydroxychloroquine as I have not had problems with joint pain and fatigue and I didn't see how this could help and saw that it could only cause more issues on the digestive front. When I saw her last week, I was presented with three other drug options: azathioprine, mycophenolate or rituximab (via a clinical trial so possibly would be a placebo). Having done some reading about these drugs I find the possibility of nasty side effects too scary at the moment. It's so hard knowing what to do for the best - apparently the drugs are only effective whilst you still have glandular function.

I went wheat-free last September after the gut problems became so severe that the GP thought I could possibly be coeliac - I wasn't but after eliminating wheat, it seems that I do have an intolerance. I have gradually been improving my diet by going organic as often as I can and not eating so much 'rubbish'. I take various vitamins and herbs and have just started using natural toothpaste and taking flaxseed oil every day - this is very good for Omega 3. Obviously it's difficult to find hard and fast evidence about the efficacy of natural remedies but I would rather empower myself to try and find natural ways to improve my health rather than using cytotoxic drugs just yet! I already feel (and think I look) a lot better - my skin is clearer and I have lost weight and the bloating I had before. I have also started doing Tai Chi which is very good for people with rheumatic diseases.

I really look forward to reading further updates about how you get on with your own regime.

Lucy x

. . . I forgot to add that I have always been very 'anti' any artificial sweeteners - they have no place in our diets. That includes saccharine and sucralose too, not just aspartame. In an ideal world we should cut back on sugar wherever possible although it's hard to re-educate our palates. Although I know it's just as sugary, I do try to substitute sugar with honey and have managed to change to having porridge for breakfast with no golden syrup . . . it is possible to change the habits of a lifetime!

Hi Dryad,
Good to hear you are doing well on the natural foods. As I said before, it is the best way to look after ourselves is by eating foods that our Grandparents would recognise. That means avoiding all artificial rubbish especially artificial sweetners (they can also cause cancer).Like you I eat a healthy natural diet and I do really well with my Lupus. I have managed for 14 years without drugs by simply changing my lifestyle and diet., avoiding stress, getting plenty of exercise and fresh air and sleep.
I am a bit concerned tho about the Michael Moseley diet??? I watched that programme and I was not impressed at all. He made out as if you could eat what you liked for 5 days as long as u fasted for 2. I don`t believe that fasting 2 days a week is good for anyone. In fact I wish we could get rid of this `diet` word. It should be replaced by `healthy eating` and it is for life not just for a few weeks or months. Of course it does take time as you say to make changes but as we know it is well worth it. I would not have the energy to teach exercise, do the gym and cycle to all my classes, and run if I didnt pay strict attention to my nutrition. Unfortunately the medical profession dont seem to put this forward as an option to us. So it is up to us to help ourselves. So to all our Lupie friends, take a look at your nutrition and see if you can make any changes for the better. x

It's really great to hear that you have been managing your lupus without drugs for the past 14 years! That's encouraging to hear.
I agree that the emphasis needs to be on healthy eating and good nutrition. And I also agree that we have to help ourselves. Lets face it, the medical professionals are trained by pharmaceutical companies to sell their products, so they mostly think in terms of what drugs they can give, rather than basic preventative measures.