Food, Inflammation and Swelling in My Lipoedema - By Jacqueline Smith

In this blog Jax talks about which foods and drinks cause her "swell hell" - a term she uses to describe a breakout in swelling because of something she has eaten or drunk during the course of her day. Jax also talks about the difficulties faced in ordinary social circumstances around her food choices, holidays, eating out, picnics, etc...

Jaqueline Smith, lives with with Lipoedema in her knees, upper and inner thighs, hips, buttocks and arms

It is for me, my greatest pleasure, food. And when I say that. It is also really important to me that it is not mistaken for "I overeat" or that I'm "addicted" to food.  I've most probably exhausted all kinds of diets in my lifetime and I feel I could quite easily earn a degree in nutrition! Only now, with my knowledge of a Lipoedema diagnosis can I for the first time see beyond the stigma imparted on me around my size, weight, which by many is presumably caused by bad/poor diet choices. Only now, has that helped me to see beyond the lack of understanding all those years ago and make better choices that suit my body today. 

By listening to my body and recognising for the first time, that weight gain doesn't, after all, actually mean fat gain. It can mean I have new fat deposition. Or it can be fluid gain because of the way the affected Lipoedema responds to certain food types.  Oh yes, I'd just love to be "normal"  - to go and eat a burger like most folk, or have a lovely meal out. Be 'wined and dined' and just have that bloated belly to cope with for my sins. But no... When you have Lipoedema, you not only have to battle through the food choices, you are also expected to have a will of iron. This was the strict way I've lived most of my life. Yo-yo after yo-yo diet. 

If I had a normal functioning body, I'd say my daily diet would keep me slim. Should keep me slim. When I've dieted in the past, the type of diets I have done, would see the average person underweight and unhealthy, and possibly described as having an 'eating disorder.' My body was starved of nutrition. Yet my image, my weight, suggested I'd have another 3/4 stone to lose. Which gives you a good idea of the seriousness of Lipoedema and how it masks what is happening in your body. 

In some ways, I'm glad I didn't have an early diagnosis of Lipoedema, given how slow it has been for treatment to become barely available, even after the medical community knew about Lipoedema in 1940 and the NHS recognised it in 2012. If I'd known, back in my youth that I had Lipoedema, I truly think I'd have given up long ago. Trying to lose weight, that is. Trying to figure out why it is just not coming off; trying again and again. Sound familiar? So, in many ways I'm glad I kept on pushing, ignorantly so. Pushing for Answers. Telling myself "I know it's not me". Yet visually, there was no proof that it wasn't me. And trust me, I get it when women who have been so focussed on reducing their size, their weight all of their lives, give in to saying "Sod it!  I may as eat what I want"  And done exactly that, to then go on to be crying in pain the next day. Because they've got 'swell hell'. 

It’s not easy being around people who want you to be involved in their lifestyle. Yummy meals out. Christmas parties, birthday parties, festivals, days out. After all, food is fun, it's social. But knowing you are going to feel miserable because you’re the one who can't drink alcohol. No fizzy drinks. Or eat Christmas goodies. Cake!  God who doesn't love a slice of cake. Or a Chinese takeaway? Well we do but we can't. Who wouldn't love to sit on the ground with a lovely picnic? Well that'd be lovely but "not only cant' I eat that kind of food- pastry pork pies, bread, the usual picnic basket goodies, contents, I'd not even get on the ground to begin with like most lipoedema sufferers, struggling with painful knees, legs. I can say with good understanding that this torment hits hard and it impacts every part of your social life. And it is a lifelong. 

If I chose to have fizz, any kind. My legs swell. My face swells. And I'm in Pain. The feet hurt like tiny fingers pinching all at the same time at my thin skin. As a result, I can't get shoes on, I can't walk. And you just don't know how to stop the nerve pain, because there is so much swelling from drinking a bottle of pop. Alcohol is the same. I'd rather not and have to focus on then getting the fluid away. A pizza... Who doesn't love a pizza?! Well I'd love to have the choice. Go out with friends. I'd love a pizza. But I love my pain-free body way more, ha-ha - so that'd be a no! 

I have begun to notice what causes inflammation in me. And it's not always food. If I just sit around I swell. The lock down was a nightmare for us Lipoedema sufferers. It was for me. It’s so important I've realised to be able to move around, walk about, if I don't want to swell I have to have my legs raised above my heart for a half hour, at some point in the day.  Some swelling, pain is  food-related.  I can eat a small amount of some things and get away without swelling. Like I'm not massively affected by eating potatoes. I expect if I was eating great amounts all week I'd feel rotten. 

When I become swollen it affects my mobility. My bad knee feels blocked by the swelling restricting my movements. Calf swells and then I'm really in trouble. Before having the deep oscillation unit to get on top of it right away that swelling would just grow! It would push veins up, causing pressure them and in the past causing thrombophlebitis. Obviously sometimes heat, being stood on my feet for long periods affect swelling. And no matter what I've eaten that day they are going to swell. But the difference is pretty much that this kind of swelling will disperse easily. When its food related it takes days. And it is hard. Lots of self-care is needed to get on top of the swelling. Feet up. Reduce diet to bland foods. Staying home, because leg is so swollen and I could sleep for England. So, I'm extremely tired when I swell. 

I know everybody is different and I guess what I'm saying is LISTEN to your body. Watch what happens to it and see, note the triggers. Because it is really important and is the difference between being mobile, feeling lighter in your body, if not on the scales. And that has great importance. Feeling Lighter in body, if not on the scales, is a huge relief to us. It is more important I'd say than any BMI bible. Diet Bible. Nutrition you've probably got a degree in already. Feeling lighter gives you strength and confidence and mobility to move. And to move is a must. 

It's the next stage of the process once you've got your diagnosis, the understanding what triggers inflammation and pain in "you". 

There are a few foods I swear by and keep in my fridge and a few naughty things in moderation. I've learnt to stick by that rule. That helps me.

It is NOT a diet. But it is what makes me feel LIGHTER . Gives me energy and I don't feel restricted.

The inflammation zaps you. Pain zaps you of energy. And we need to feel awake and fresh if we want to make good choices. Yes, I'm learning. And no, I'm no Saint. I do have days when I feel sorry for myself and say Sod it still. But they are less. So please don't follow my daily diet. But do try start thinking about your body. I have to talk to mine as a human part, each its own character function ha-ha. When my right leg was harmed, hurting. I'd talk about how my left leg was my hero!  Doing all the hard work. I think it helps to visualise your body as your saviour sometimes, a body you love. Especially after years of hating they way it looks without taking into account its suffering too... . I believe when we do this, we find we accept the Lipoedema more easily, that it's not been our conscious choices that have harmed it. So, we learn to be the nurturer of our body like nurturing a child. Feeding it good nutrition.  It sounds silly I know, but sometimes the most bonkers ideas are genuinely helpful. 

For Breakfast

I love a yoghurt for breakfast, my favourite is a hazelnut yoghurt, the ones from Asda Farmdale, thick creamy and natural. If I have time, I enjoy a cooked breakfast or an omelette.

For Lunch

A SlimFast shake, 'Cafe Latte'. I do genuinely love these shakes and though they cause my face and stomach to bloat they don't my legs! A nice salad for lunch is my favourite, with a low sugar salad cream. I'll maybe have a small bag of of low fat, low salt crisps. But if I'm out and about, I grab something and if I'm honest, that is where I come unstuck and if I try and fit in with others, I will just end up suffering for it.  

My Evening Meals

My most enjoyable meal of the day. I know what I can and can't eat and I love to cook. I'm not a Mum that goes to Iceland lol, not anymore. I love stir fries with noodles. I am good with pork chops/pork mince and I'm fine with chicken. Tuna is good, salmon, all white fish, sea bass and fish fingers.  Never tried lobster, but it looks nice! I love prawns, cockles and squid. One of the diets where I actually noticed my weight reduce on the scales was a period when I'd just finished chemotherapy and I ate lots of fish and I just replaced meat with Quorn. I use herbs all time. And turmeric in everything, as it is suppose to be a good anti-inflammatory.

Vegetables wise: potatoes, peas, carrots, lots of green leafy veg is all fine.  I am not a huge fan of vegetables, I have to say, but I eat them to be healthy!

I avoid heavy things like pasta because its bloats me and cause swelling. I find beef makes me swell, gives me tummy ache, feels like it gets stuck in me. Most processed, if not all, processed food causes swell hell, I avoid tinned food in the main. Packet sauces are a no no. I cannot eat pastry at all, neither can my daughter.

Sometimes I will have ready meals, some of the healthy M&S ready meals suit me, especially their fish dishes. 

Takeaways 

Not found one yet that doesn't bloat the heck out of me! To be honest, the odd McDonald’s hasn't hurt me, it just doesn't fill me up and makes me feel sluggish. Like most high salt content meals.

Drinks

I have a cup of caffeinated coffee a day with breakfast with semi-skimmed milk, no sugar.  The reason I drink caffeinated in the morning is for a reason. It goes straight through me. And yes, that probably means it is not tolerated. But when you are on Co-codamol, you become constipated and times when fibre isn't in high quantity in my diet I feel it helps. I drink decaf the rest of the day. I'd say I have around 4 to 5 cups a day. 

I probably have two cups of caffeinated tea a week, when I don't fancy coffee. don't drink fruit tea. I'd drink green tea if I had to. Occasionally do. I've got teas of variety in cupboard but rarely drink them to be honest. In Winter, I do like a sugar-free hot choc night time drink. 

I drink apple juice and any diluted drinks are fruit and barley sugar-free.

One strange thing I've noticed is when I have a stout with a blackcurrant mixer, something my dad would let me have as a teenager ha-ha! When I have the stout, the only drink of alcohol I can have without swelling, I've noticed the next day my legs don't ache. You know the humming ache that you don't really take notice of because it's always been there. It goes. For a day. And I feel really energetic. Stout has something in it that helps. So, a bottle of M&S Irish stout is twice a week is on my menu. I've actually mentioned it in the lipoedema group forums so that others can put it to the test. It'd be interesting to see if it did help others. Because rather than meds taken. I'm all for something better for our bodies that is holistic rather than damaging the gut. 

I notice when I'm not drinking enough water (tap) that I swell and I know that sounds upside down. Drink more, to bloat less, but truly when I've not drunk enough, I feel sluggish, tired and I ache. Especially in my arms. Where Lipoedema for me feels most lumpy with sharp pain and my skin is dry. My under eyes are darker and I just ache everywhere. 

Fruit 

I don't eat enough fruit to know if it really affects me. I know black grapes make me feel good. Banana goes straight through me. Not a big apple eater. Nor oranges. Pineapple is another fruit I'd eat but not in good quantity or regularly enough to notice the affect on my body.

Dairy

I am fine with all dairy but then I haven't cut it out, so I am not sure if it would make a difference. Cheeses I use - cathedral City light. I use phily, paneer, Halloumi. 

Peanut Butter  - my super food!

I always have peanut butter in my fridge, I'll have it on a thin bagel. Something my Dad taught me to love from a child and it makes me feel great. Lots of energy. A good food.

Bread

I can't eat bread. I bloat badly. Feel sluggish all day. And it causes constipation and spots. It just feels like bread slows everything down inside so I avoid it.

Snacks

Sugar is my weakness. I do love chocolate. A nice cake. A sweet treat. I'm still eating less of that, but I can't say I've removed it from my diet totally. But I find that what I have in moderation isn't affecting me too much. It tends to be the fizzy drinks, probably the sugar and fizziness in them and the sugar in alcohol, rather than sugar in a choc bar. I have battled the need to have a sweet treat of an evening, an ever and ongoing battle, but everything in moderation as I say! Crisps, especially high salted ones, cause inflammation and actual pains in the skin. Probably the inflammation pressures on the lipomas that I have and they then nip at nerves, veins. I'd say salty food is a bad thing for us Lipoedema ladies. It feels strange to say, but it feels like it shrinks the skin, impacting on pain.

I enjoy walnuts and I always have full fat hummus in my fridge, I love it with lentil crisps as a dip.

My Top Best Advice?

So, if I was giving you my Top Best Advice from a patients perspective living with lipoedema for over 35 years I'd say this.......

Don't always feed your mind with the ideas of others telling you that you feel the way you do because of your size, your weight. It's not for me to say or for me to tell you how you feel but it's more likely, that what you are eating will be a big part of why you feel bloated and if you’re not moving about the best you could be doing.

This disease would best be described as the disease that robs you of your body, a living hell. But we definitely shouldn't let it rob us of our rights to say I AM AMAZING Too. Every day, we fight for our right to say I AM Living! I have a life. However, that looks. And if it makes sense to you, that is your power.  It doesn't have to make sense to anyone else but you!  Remember that. 

Love Jax 

X 

Closing Editorial Note

"In asking Jax to write this blog, I wanted to find out whether a Modified Mediterranean Diet (mMeD), as described by Di Renzo L et al (2021) [1] in their study was the type of diet that Jax was perhaps naturally following. This diet has shown to 'improve overall nutritional status and quality of life, reducing weight, arms’ and legs’ fat mass.' The main features of the mMeD are as follows: Eating primarily plant-based foods such as seasonal fruits and vegetables, whole grains, legumes and nuts; replacement of butter with healthy fats such as olive oil; use of herbs and spices instead of salt; foods rich in polyunsaturated fats. Avoiding: Preserved and processed foods such as cold cuts, cured meats and canned products, frozen ready meals, cheese (apart from ricotta), potatoes, high glycemic index (GI) carbohydrates, alcoholic and non-alcoholic sweetened drinks"

The study also noted and very importantly:

"For the improvement of the quality of life of lipoedema patients, it is essential to find a dietary strategy that can be accepted and followed, aimed not only at weight loss and reducing fat mass in the areas of the lower and upper limbs, but above all at the reduction of pain that is accompanied by the expansion of inflamed subcutaneous tissue and orthostatic oedema."

On looking through Jax's diet, and I am not a nutritionalist (!) and comparing it with the foods groups recommend/not recommended in the study I observe the following:

Processed foods of any description are not tolerated by Jax so she avoids them as much as possible. Jax admits to not really liking fruit and vegetables, though she will include if hidden/disguised/grated and prefers them as raw, rather than boiled.  Whole grains and legumes are missing from her diet, mostly because she doesn't really have the confidence to cook with them nor the real desire to find the recipes. She avoids salt and has alternative low salt products.  Jax includes a variety of cheeses, butter and potatoes and the occasional treat of stout (which is full of antioxidants and flavonoids) but none of these are recommended foods in theModified Mediterranean Diet.

Jax takes an iron tablet daily to make up for shortfalls in her diet and to help with tiredness and fatigue. NHS guidelines indicate to perhaps include liver. Jax has recalled that she used to have liver as a child and is going to try this again. Together, we found a great helpful guide at https://www.lipedema.com/self-care/nutrition

An areas that Jax struggles with is her sweet tooth and rather than having real sugar, she will have an artificially sweetened product, as she feels its the lesser of two evils but really it isn't and it does cause her to swell.  With Jax's consent, I have written to the lead author of the study to see if we can get a copy of the diet plan implemented, to see if there are elements that will help Jax to improve her diet, energy levels and most importantly, satisfy her appetite and love of food, which in turn, will improve her quality of life. I have sent Jax a receipe for energy balls that are no bake with natural forms of sugar which she is also going to try.  Very kindly, after reading a draft of this article Bel Hardman has kindly suggested looking at some refined sugar free recipes here  @heal.fibromyalgia

It has been a very interesting blog to work on with Jax, it really has made me think even more deeply about how difficult life can be for ladies with lipoedema.

References