Sticky Blood-Hughes Syndrome Support
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I am suffering after a femur fracture and unplanned major surgery with swelling. Is it worse as I have APS ?

Following a terrible fall in December I am trying to get some life back. However my knee and thigh keep swelling up and it is affecting my return to mobility. DVT has been ruled out but I cannot bend my knee even a little bit.

The swelling is awful and the physios have little patience with me as they say I should be walking well with crutches now but I just cannot. I wondered if anyone else has experienced a similar situation. It is depressing me so much but at least I have survived the surgery, which placed screws and steel rod into my limb.I would be really pleased to know if anyone else had a similar fracture and a rocky recovery. I am 5 weeks now since surgery and scared stiff. There is little support here for me as APS is considered a mystery by most clinicians where I live. Best wishes.

7 Replies


Sorry to hear of your troubles. Where are you from?



Please let us know where you are located, so we can attempt to help you with some more information. MaryF x


My sympathies are with you. In the last 20 mths I have had 2 falls with 2 dislocated shoulders on top of the APS. The Drs forgot to take me off warfarin for one of them, and I had massive bleeding into the joint. Now am having to consider surgery for all the soft tissue injuries. Luckily my fracture was impacted, so no repair needed. Still struggling to get some normality back. I am convinced having Hughes doesn't help. Where are you based?

Keep going! I hope you have family support.


I broke my leg 3years ago. It was a simple break with no dislocation and no operative repairs. I fared fairly well, but the point my story coincides with yours is the sustained lack of total joint motion. I was in a cast for 3 months and even after physical therapy, even now after 3years of on and off trying, I can not bend my knee past a certain point. This affected knee was broken when I was a child and was never set properly then. In my case, I believe my joint issues are a result of inflammation and irritation from all the joint crude built up from scar tissue.

As autoimmune patients, we do tend to suffer from the results of more systemic inflammation. Which is why I 2nd suggestions that you locate and see a doctor who has more APLS experience.

Good luck and let us know how you fare.


Hi Everyone

Many thanks for the replies. I am based near Chester but not very mobile in recent years due to a type of agoraphobia with my APS.

I have excellent support with my husband who was looking after me prior to the injury but he works full time. His company are great and allow him to work from home a lot which helps.

Yes, the knee stiffness is really holding me back and I am awake in the early hours with burning nerve damage from the surgery. I was terrified about the operation but at least the surgeon and his team listened fully to my "instructions" and did exactly what I asked as regards heparin and compression aids. I had a large blood transfusion too and my husband jokingly said "Wouldn't it be great if all the new blood stayed clear of the antiphospholiid antibodies !"

I wish !!! .

I am very new to the site and I can see that my Rheumatologist is on the APS list, which I was not aware of. That is good to know. I am due to see her in February and I have a fracture follow - up with a Chester hospital due any time now so I will ensure that I "grill" them about the stiffness in the joints.

My worst fears are necrosis and PE (had one about 9 years ago), so being so immobile is scaring me silly.

I so appreciate your replies and I am determined to try and get going on this walking frame as soon as I can.

I managed about a third of the lounge and back to my Chair today with help and encouragement but I felt a bit faint and dizzy, as my APS is the neurological variant. At least I got there in the end !

I will keep updating any progress or problems and send my very best wishes to all for a positive and problem-free 2014

Kind regards J.


I am sorry to hear of your pain. This sounds very familiar to me. I too had a fall just over a year ago, 3 fractures in leg; pins and plates. Had lots of swelling and bad burning pains and neurological pains, this was diagnosed as Complex Regional Pain Syndrome by the surgeon who operated and it needed special and intensive physio which helped me with my recovery. The surgeon was pleased with my progress 6 months later even though I was still having pain and swelling, this is a difficult thing to deal with and I was told it could be a couple of years before its recovering to anything like normal. You may need to ask about CRPS as a possiblility because I understand that many doctors know nothing about it, though my rheumatologist knew a little. It may be nothing to do with our APS.


Thanks so much for your very informative reply.I will check out the CRPS. I suspected that the burning and tingling would be something neurological again ! I am so sorry to hear that you also had a nasty fall. I fell in a holiday cottage down a very dubious staircase. The horror of the fall is very much still with me.

My Rheumatologist is quite well informed so I will write to her and ask her if she is familiar with CRPS.

I can see that recovery is going to take a very long time.As long as I can get around the house and into the car eventually, I shall be pleased.My husband is really good and helping me as much as he can but my independence level is nil presently. My knee swells up so much it is quite frightening. I am due to have a Physio out to my home later this week. She was supposed to come today and ended up as a hospital admission herself apparently ! Nothing ever goes smoothly with me ha ha!!

Thanks again and very best wishes to you.


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