Sticky Blood-Hughes Syndrome Support
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Hello everyone,

I am trying to get use of this new social network. I recently went on vacation to Disney. My legs and back were very painful. My son in law rented me a stroller which I used for the next 3 days. I swelled so badly in my feet ankles and legs. I t was concerning to me since I am diagnosed with APS. Has this happened to anyone else. I'd so what did you do about it? I have been swallen ever since. I did make an appointment with my primary care doctor. Thanks all

10 Replies

Hallo again,

So you have been to Disney now. Was your husband with you also? It must have been an adventure.

As you have APS I think it is very important that you can have an APS-doctor. Could someone help you to find a specialist for APS. I guess you live in the US?

You can look at (doctors in different countries that know APS)

I have special stockings for when my legs are a bit swollen. Good luck at the Primary Care Doctor

Good to hear from you.

Hugs from Kerstin in Stockholm


Yes my husband went with me. Our daughter, son in law and two grandchildren also went. My husband and I shared the ride with him when I got stif. I do have an APS doctor. I am using my PCP right now because I am in the process of changing my APS doctor. It is also good hearing from you Kerstin hope you are well. Thanks Hugs right back to you, Ruth


Hi, it is very important that you see your doctor and main consultant as soon as possible as the swelling can be for a variety of reasons, some serious and some not so, make sure they really look into this in terms of blood tests, move sooner on it rather than later. MaryF


Hi again, I hope you listen to Mary who is so wellinformed on APS and how to act when it is necessary.

Good to hear you have an APS doctor which you do need but sorry you have to change! If you have to you have to of course.

Take good care of yourself Ruth. I am seeing my APS-doctor on Tuesday next week and have a study of my heart/lung-situation later on that week also. We do as much as we can.

Hugs again and take care from Kerstin


Thanks so much Kerstin and Mary. I have an appt. Tonight. I will let you know the outcome. Ruth


I would suggest an appointment or phone call to your Rheumatologist...also when I travel I "up my dose" of Aspirin ..but I would take any swelling as a "red flag".....


Thanks everyone. I just went to see a new Hemotologist. He was the most detached from what I was asking him. I guess I will stay right with who diagnosised me. This doctor I saw today said swelling could be for any reason. He did not suggest blood work or anything helpful. He said you can go on a trip. He also said he can not add anything to my history. My husband agrees that he was very unconcerned. I think I will just keep things the way they are. I will pray nothing happens and take a easy 6hr trip with a lot of stopping to walk. He did even say this I just know. Thanks Mary, Kerstin and Luisa. Take care. Hugs Ruth


Hi Ruth - you may well be home now but if I were you if you are going to take any long journeys I would buy some flight socks even though you are not actually going on a plane. These will help you to not form a DVT. Also make sure you stay hydrated. prof Hughes told me this is more important than the moving around. Having said that it is important to move around!! So as you said frquent stops (every hour) with a five minute brisk walk about. Whilst in the car you can do the same exersises that you do on the plane with your feet - circulating, up and down, you know the drill.

I wear the Ted stockings they give you when you go into Hospital for an op. They are disgusting but they do the job! I hope you made it back ok and your legs are feeling better now.


Thanks so much for your concern. I will take your advise. I am going on a six hr. Car ride tomorrow. I have the stockings that were prescribed. I did not know about hydrating myself I sure will. Walking will be on the agenda as well. Thanks so much for your concern. XXX. Ruth

Oh my legs went down. My chin is still sore, but better.




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