I have had Lupus for 13 years. It affects mostly my mobility, I use wheelchair, walking stick, crutches and mobility scooter.
I am very claustrophobic and had a panic attack when I was made to sit in an old cell. The paramedic who was attending to me did an ECG and as soon as he read the results called in the ambulance and was rushed into hospital with blue lights.
After several tests I was told that I have PE on both lungs and it was very severe.
Does anyone have the same? If so how does it affect you.
Any theories on what and what not to eat?
Thanks for your expertise.
Written by
gracekunda
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Hi some people with Lupus also have Hughes Syndrome/APS which causes blood clots. I have both diseases plus three more. There is a forum for this on the same platform, many members are on that forum as well as this one and vice versa. MaryF
Hi thank you for the information. I am very interested to join. Can you please tell where and how to join this forum please. I am very worried and don't want to be eating the wrong food. When I asked the consultant Rheumatologist she said I should research online.....
If you have Lupus and are having blood clots you should have the test for Hughes Syndrome/APS , it's treatable.
Immobility can cause clots to form in the legs, which then move elsewhere , e.g. causing Pulmonary Embolism ... nhs.uk/Conditions/pulmonary... ].
I'm not aware of any specific food which reduces the odds of blood clots forming , ( other than a diet which avoids obesity ), but dehydration increases the chances of blood clots to form ... nhlbi.nih.gov/health/health...
I was reading your post with interest can you tell me how you actually found out that it's the lupus giving you mobility problems? You don't have fibromyalgia? The doctors keep telling me it's my fibromyalgia causing me not to walk but I'm not sure about that. I'm sorry to hear about the pulmonary embolism, my sister had the same thing at the very begining of her lupus. Hope you get this dealt with quickly x
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