Sticky Blood-Hughes Syndrome Support
8,080 members8,321 posts

Fed up

I have an emergency appointment today with consultant. I don't hold much hope that I will come away feelin positive . My foot feels stuck when I move or walk really painful. My ankles have what I think is fluid bags around them. I feel like my lungs are grateing on my ribs when I breathe. I'm sure though the Dr thinks I am imagining it . I'm not I think I make myself worse by pushing my body to breaking point to prove I can do it. Then suffer. Don't know what to say any.more to them.

10 Replies

Hi Pauli,

As it is the first time you write here I wonder if you believe you have got APS? Is this Consultant specialized in this rare illness? We are not Medical trained here but all of us have APS.

Where are you from?

Best wishes from Kerstin in Stockholm

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Hi I have been diagnosed with aps a year ago . I see a rhumatology consultant in Morpeth. I don't know what is going on a min like I am thinking clearly. Went to see her yesterday and it is today. I also have hypermobility and had several operation to remove bone spurs. Feel exhausted and in pain. Walk like a baby deer for the first hour of the morning dues to weakness and pain in feet which are getting more blue /red marks on like livido but not going away. I'm sure that they think I am imagining it all. Don't know what to say today. X


I have a lot of the same problems. I also have hypermobility and sore joints.

I also walk like a baby deer when I wake up. I'm also quite foggy often. I don't have discoloration in my skin, but I'm half black, so It probably wouldn't change anyways

I'm curious was info you find


I get so frustrated. I just received my review letter. Bollocking me for wearing high heels. (Kitten ) stating it is making my joints worse the alternative is to wear non feminine unattractive shoes. I'm in pain that never leaves so I've got to the point where I think so what.

Do you so any thing that helps with the pain .



First of all you must have a Doctor who understands APS, that is a Specialist. Do you live in England?

Look at the Charity website and also read "Sticky Blood Explained" by Kay Thackray.

If your doctor knows APS she will take a lot of bloodsamples. Perhaps you may have SLE or Sjögrens syndrome or Thyroid-issues that often are connected and mixed up with APS. It is a fight for several of our members to get a diagnose! You have a diagnose and now you must have a Doctor who knows what to look for.

When you get the right doctor and the right drug you can be fine. We have too thick blood and need to be anticoagulated. Also stay on this site as we have a lot of members trying to help and also we learn so much from eachother. I live in Stockholm.


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Been to see Dr. She said I have tested positive for lupus anticoagulant. Got steroid depot so I really hope it helps. Really in pain at the min do you know if hughes and lupus go hand in hand. Feel very alone at moment x


I too have a few hypermobility issues. My footware attitude is a complete opposite. I often wear those Vibram 5 finger shoes. They lessen the arthritis-induced inflammation and pain. A lot. But they're ugly. (IMO.) Really ugly. It doesn't help that Vibram wants to call attention to them by making them with bright colors, sometimes with contrasting colors between the toes. They want to draw attention to their shoes in (I presume) hopes that will increase visibility and sales. But I get so sick and tired of all the comments" Oh look! Your shoes! How cute! They have little toe thingees!" I try to be polite, but I've nearly had it with fielding those questions and comments every day.

Yesterday I rounded on someone in Starbucks -- (not her fault, I know. She was just being polite but I had reached some sort of temper saturation level regarding my footware:) THESE ARE MY SHOES! MY SHOES! AND ITS NONE OF YOUR BUSINESS WHAT THEY ARE AND WHY I WEAR THEM!"

I then had to go home and work on a sermon I'm delivering -- and the readings for this Sunday include that passage from James about being slow to anger.

So you may be annoyed at a doctor who tells you to wear ugly shoes. I am annoyed with an endless succession of total strangers who think they are being supportive by trying to say nice things about my ugly shoes!

(Maybe I should try using bread ties to just cover my shoes with plastic grocery bags?)

But moving to high heels? Naaah. I've gotten very used to the lower pain levels in my hips and knees. Even though those shoes are ugly.

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I just donated 120 pairs of the most beautiful 4 and 5 inch high heels. It hurts to know I can no longer wear them. I am just too unsteady to wear them and when I fall it is bad because of the coumidin.


Well been to see consultant. Had depot steroid injection. Hopefully that will help me with my pain. I think I'm in so much pain and had it since being young and had to give up so much due to lupas I hand on to the things I can. Aps is an add on another thing to worry about !


Hi Paulie,

I feel sorry for you having so much pain. I also have Lupus Anticoagulant but i do not have that pain with my APS, but neurological issues before Warfarin.

I know several members here who have pain, but usually when we have an appointment with that for us so important Specialist, who usually is a Rheumatologist or a Hematologist, we get the right treatment as he knows exactly what to look for. This illness attacks several parts of the body and we need to thin the blood.

Many here also have Lupus and also often Sjögrens syndrome and Thyroidea. These autoimmun illnesses are connected in so many ways and it can be very difficult to have the right treatment sometimes. But you have succeeded to get a diagnose and in a way you can be glad because so many here on this site have not had a diagnose because being seronegative but still with all the symptoms.

As Prof Hughes is saying: It is not the patients failing the tests but the tests failing the patients. (I think that was right!)

So many of us here have thought that we have met a Specialist and later find that he or she was not a Specialist as she do not understand us at all. I have been on this site for several years and know how difficult it is to find the right doctor but our lives are worth it and if we do not give up we will find that doctor.

Read that book i told you about. It is really good as Kay Thackray has got APS herself and tells about a lot of symptoms. I have it in pocket here in Stockholm.

Please stay with us here as so many here have been in your situation and know how you feel so you are not alone. We are in the same boat.



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