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Sticky Blood-Hughes Syndrome Support
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APS and healthy lifestyle

Hi everyone,

I wondered if anyone else has struggled with having a healthy lifestyle with APS? I'm really struggling - I think partly because I had a really healthy diet and exercised before my mini stroke which led to me being diagnosed with APS and part of me thinks whats the point? I was healthy and still got sick. My husband says having a healthy lifestyle may have prevented me from having a bigger stroke but I just can't get my motivation back. I have struggled with coming to terms with having APS and the mini stroke so I think food was a bit of comfort and not exercising seemed 'safe' as I wasn't straining myself. But the weight has crept up and my symptoms are worse. Does anyone else struggle with doing the whole healthy/anti inflammatory lifestyle? Any tips or advice are really appreciated.

Thank you x

13 Replies

Hi Fliss

I was a racing cyclist until 1991 and still cycle for pleasure now.

I eat natural, organic foods where possible. I eat very little carbs and avoid refined, white carbs altogether. Having read 'The great cholesterol con' is stopped taking statins and feel much better and have lost 7 - 8 kilos. I eat good quality butter, never eat spreads (which are not a natural product), I have olive oil but, if I'm cooking steak I pan fry it in beef dripping and baste it in butter for the last minute. I have organic porridge for breakfast, cooked with whole milk and a spoon of coconut oil. Walking, cycling and avoiding processed foods, refined carbs and margarine spreads is my philosophy, I look and feel better and I have lost my excess weight.

Best wishes.



Well since my last do in hospital . ..woke up with balance and walking issues with involuntary movements . I am now wheelchair bound outside so that's stopped the walking Hols . I've always struggled using my hands with having RA and Fibromyalgia but I could get out the house for holidays I think doing little walks.Now I can't even walk on my own outside my door so exercise is nil.I try to do little exercises but am soon exhausted .

I try to eat what I think is healthy and just have a treat now and then.I know we have to be careful with the vitamin K overload . I still have a couple of red wine now and then but no more.

Anyway life is too short so why be miserable


I had a stoke last year, I baffled the doctors because I run( competitively) eat as healthy as I can or want!! not over weight worked/cycled/walked etc so came as a real shock they tested me for everything then eventually I was diagnosed with APS so I could have treatment. I'm told because of my fitness I recovered remarkably well, but it took me awhile to accept this, as I have always been active and enjoyed it, so was never an effort, I did get back to running and still compete although my left leg drags a little but only I know!! You will get back to your fitness, do what you enjoy



Wow! You are truly inspiring!!! Good for you!!!


I had an arthroscopy on my left knee due to a meniscus tear last june 2015, since then have felt i cannot crouch down or bend my leg sideways. I also had a cortisone injectip into my kneecap which was painful. Both my legs are quite swollen and i am worried i may have aclot within my leg. The doctor just refers to the ostearthiritis within my knee and says i am too young at 51 to have a knee replacement which he offered me initially on my first visit. I try to walk the dog each day to exercise and keepy weight down but ive pain in my foot too for which i am Seeing a consultant at the end of november. Hope your pain resolves itself soon. Julie.

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I am glad that you can walk up and down stairs again. I just wonder as I have learnt that it is not good to walk DOWN stairs but UP stairs is ok and very good.

I wonder if you should walk down the stairs as exercise?

Kerstin in Stockholm

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When I had my mini strokes which led to my diagnosis in2001, more than one of my friends commented that it seemed so unlikely and unfair that I – the one with good weight, good eating habits who exercised regularly -- would be the one to be disgnosed with a serious chronic disease.

But my father had lupus, at least one of his sisters had RA, so autoimmunity runs in my family. Genetics! You can't control it but you can try to mitigate bad genes with good behavior.

But it wasn't just a friend who were saying this was so unfair. I was screaming to myself – and sometimes to the world – that this was so unfair! I was eating right! My weight was good! I exercised daily! How could this happen?

Well it did happen. And coming to terms with this has taught me to be much less judgmental about other people and their health and lifestyles. I still watch what I eat. I still exercise regularly. I still wash my hands faithfully many times a day, floss my teeth, wear healthy supportive shoes, etc. in other words I control what I can control. And so should we all. But the line between what we can control and modify and what we can't is blurry and beyond mortal comprehension.


I was the same, fit and healthy but now realise there is many other factors that impact. Genetic disposition is one of them. Toxins and stress. The antiperspirants , perfume, soaps, make up, moisturising creams are all full of toxic chemicals. Air pollution is really bad and we breathe that in. The biggie for me was stress & that will override any healthy diet or exercise. The positive though if you weren't eating healthy & exercising I am certain you would be worse off.

Take care


I was healthy before I had a full blown stroke too I didn't have a diagnosis of aps until after the stroke , I too have put lots of weight on even while still in hospital and not really eating much I put weight on and now I can't exercise due to left side weakness this was6 years ago and my weight gain really depresses me but I really can't exercise sorry I know this is not helping you but it helps me to know I am not alone in gaining weight

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Hi FlissS

I was diagnosed with APS in 1995 aged 22. It took weeks in hospital after months of weird symptoms to get a diagnosis.

Prior to this I was very healthy, I was a competitive bodybuilder having competed for the first time 6 months prior...I'd taken years to get to that point, then it was gone. I had mini strokes too all manner of tests however I didn't know I'd had a mini stroke until it slipped out during a conversation with my then GP as no one ever told me!

Fast forward to 2013 aged 39 when I got rushed to hospital on New Year's Day with a cerebellar haemorrhage which progressed rapidly to further complications and a diagnosis of CAPS....

I was again very fit, healthy & strong prior to this and felt cheated that I'd looked after myself when many don't....I had a hang up about it and constantly complained what was the point until a young nurse shot me down simply saying....you ever thought you might of survived because you were were healthy! I'd never thought of it until then too busy indulging in woah is me. In 3 months time it will be 4 years on and I can honestly say my life is brilliant now. I've found my true self, a new perspective and gained a sense of what matters. Don't give up, take each day as it comes, one step at a time. If I can anyone can.



What a friendly response with all of that positivity I can understand how your doing so well! Remember your body believes what your brain tells it. TELL IT GOOD THINGs:

1. I am strong

2. I get better every day

3. My family loves me

4. I am worthwhile

5. I smile every day for life is my gift💕


Thank you everyone! You've made me feel less alone and really appreciate all your tips and advice. I know being fit and healthy will reduce the chances of another stroke but I seem to have a 'life is too short' mentality now and I need to find some balance. Really inspired by your stories of getting back into being active and eating well - going to go for a nice autumnal walk tomorrow and read some of my old healthy eating books. Best wishes to you all x

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Hello FLIssS

So sorry to hear what you are going through. I agree with most of the postings but I know that usually experience lights only one person.

In my case it is yoga daily practice and walking what I enjoy the most and helps me dealing with symptoms physically and mentally. When I am going through a flare it is meditation what I cling to exclusively.

Our condition is a Sisyphus one.

Good luck with the journey.

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