Sticky Blood-Hughes Syndrome Support
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Workout for LA postive

I am a male and LA positive. My deep veins in my right leg are all blocked with clots. I take Coumadin. I have had been told by my Dr.'s that under heavy stress my leg will fail. I used to run and bike. I am looking to start working out to get into shape. I am afraid of having issues with my leg. I am looking for help on what type of workout would be best for me. Thanks in advance.

18 Replies

I'll caveat this with the fact you should get some professional advice - your doctor and/or a physio to advise, if you can (you don't say where you are and that may cost).

Cycling and swimming are lower impact than a lot of exercising - swimming especially. In a gym, you should be able to structure a routine that deliberately doesn't pressure any areas of weakness. Again, a true health professional in a gym should be able to give you a workout regime without working out your wallet.

Good luck with it. I always found increasing activity and fitness accelerated recovery from issues (perhaps obviously), rather than sitting and doing a slow recovery - but always listen to your body. If it hurts, slow down a bit.


Thank you for the response.


The first answer gave good advice but I would add to that a recumbent bike would be better than an upright. I get pooling in my lower legs and had autonomic testing at the national hospital in London. They told me to never work out on an up right bike because of the blood flow from the heart back to the head and legs etc. I was more likely to feel faint because of the poor circulation once my heart rate went up. Again you may fall into the same bracket as POTS is something that APS people are suceptable too.

Another thing I might add is have you thought about talking to your Specialist about swapping onto LMWH instead of warfarin. You may find this better not only if your are going to start exercising but Dave our other Admin is also a keen cyclist and has found it better as have I.

I also wanted to add that my other half had a knee replacement recently and his excellent Physio recommended by his surgeon suggested a recumbent bike as well as swimming.

Let us know how you get on.

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Hi...This pooling....what do you mean exactly? Do the feet and lower legs turn purple and red, mottled looking when you stand ( or sit ) but turn to a more natural color as soon as the legs are raised? Very obvious difference.

Do you have the dysautonomia that Vanderbilt is studying? Do you think a disease such as lupus is behind this pooling?


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My leg gets swollen and painful after being on it for too long. I wear compression sock. Never been diagnosed with dyautonomia. I believe that the APS causing the clots have restricted the return blood flow back to heart. When elevate my legs they do return to a more normal state. It takes a long time. Thanks for response.


What you describe is correct, I get it when I stand too long. It is basically the fact that the blood is not being able to move back up very well. I have had a stroke and it seems to have got worse since then. I also think this may be part of POTS which is an autonomic failure.

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I get it, too. Have since I was about 12 (some tie in with the hormones of puberty?).

One neuro clinic said dysautonomia. I have received so many different diagnoses.

Been researching and found some association between APS and postural tachycardia syndrome (which I have...have registered an increase in Hr as soon as I sit up from a supine position, then stand...and drop in BP--it's like the body is struggling to get blood from lower legs and feet to heart and head, that's my lay feeling).

Going to see if rheumy will bump up my appt...need to get the "right" APS tests.

I'm repeating myself, I know, but here are other reasons why I want the tests...

History of Graves' autoimmunity; CT scan revealed body had pretty much taken the spleen out of commission (infarcts perhaps) when I was young; niece transiently threw out some anticardiolipin antibodies (was on Plavix/family history should be really looked at), brain MRI showed a few intense spots, differential was MS or migraine syndrome...have never had symptoms of MS, am 58, but do have a history of very bad headaches and older sis and brother had migraines). Now screwy balance.

Bad headache last night. Took the 325 mg aspirin a hospital ER dr said to take...taken to Er some months ago and h, ER dr, thought I was having a TIA, no stroke according to their tests. And told to drink a lot of water...have been told to keep myself well hydrated (became dehydrated yesterday which may have lead to this headache...thickened my blood?)

Going to find an answer. An answer Despite so many, not all but so many, of our drs not having a clue. As I say frequently to the members of all the groups I joined to try to find an answer, in regard to med practice I say, "Who's On First?"...that Abbot and Costello routine (which gets on my one last nerve, btw :).

Thanks for your response. Now see one from another member, will get to it when I get home.

Annie PS...Another possibly strange thing that may help solve this puzzle...

Have no varicose veins despite the blood pooling (always lean and no children, no pregnancies). And a neighbor said I have the least amt of spider veins she has ever seen. In fact, it rather stunned her. Do though use compression stockings which do keep the lower legs a more natural color so doing something good I guess.

Will keep the group posted.


Forgot to mention...

Have what I think is the livedo

"rash" thing. Found a picture of me when I was little, sitting on Santa's lap. Was wearing a right above the knee skirt and knee socks. Skin of knees showing...there was definitely this rash. Saw it, too, on my arms when lst grade group class picture was taken.

Have the mottled legs when I stand but see this "rash" on underside of arms. Am very fair.


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Pooling is nothing to do with varicose veins it's the autonomic system not working properly in other words your involuntary responses don't react as they should. When you get up from a sitting or lying position your heart and other systems all have to respond automatically to push blood to your brain and regulate your BP etc and when you stand for a period of time again blood has to keep circulating. I expect you see soldiers on parade fainting, this is a example of what happens when the body does not behave as it should. POTS is a condition that's becoming increasingly more common with APS as more people are evaluated for it.


You're right...the research does show some connection between APS and POTS. For awhile I would fall to the ground but ok as soon as I hit the ground meaning I didn't lose consciousness. I did, though, fail the table tilt test...I think because I couldn't immediately fall to the floor and get the blood up to my heart and head. Couldn't fall to the floor immediately because as you know you are strapped to that table. Was ok supine, ok when table turned me upside, but when the tech did the table upright, well...

I told him I was feeling a little light-headed and nauseated and the next thing I knew I was sitting upright in a chair. Evidently I went out cold, but the tech and my medical friend moved very quickly. I was unstrapped by them, put in a chair and came to seconds later. I will say it was a rather pleasant experience...going out cold and not knowing a thing (Sartre's Being and Nothingness :), and when I came to I thought, "What a way to go...we should all be so lucky." Looking on the bright side of things, that is :).

Thanks again.


Did a quick search and found this which you guys probably already know about...

Postural tachycardia syndrome (POTS) and other autonomic disorders in antiphospholipid (Hughes) syndrome (APS)

JR Schofield1

S Blitshteyn2

Y Shoenfeld3,4

GRV Hughes5

1Department of Medicine, University of Colorado School of Medicine, Aurora, CO, USA

2Department of Neurology, State University at Buffalo School of Medicine and Biomedical Sciences, Buffalo, NY, USA

3Sackler Faculty in Medicine, Laura Schwarz-Kipp Chair for Research of Autoimmune Diseases, Tel-Aviv University, Israel

4Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center, Tel-Hashomer, Israel

5The London Lupus Centre, London Bridge Hospital, London, UK

Graham R.V. Hughes, The London Lupus Centre, 1st Floor, St Olaf House, London Bridge Hospital, 27 Tooley Street, London, SE1 2PR, UK. Email:


Background Antiphospholipid syndrome (APS) is an autoimmune hypercoagulable disorder that has been shown to cause a large number of cardiac and neurological manifestations. Two recent studies have demonstrated abnormalities in cardiovascular autonomic function testing in APS patients without other cardiovascular or autoimmune disease. However, an association between autonomic disorders such as postural tachycardia syndrome and APS has not previously been described.

Methods and results Data were obtained by retrospective chart review. We identified 15 patients who have been diagnosed with APS and an autonomic disorder. The median age of the patients at the time of data analysis was 39 years. The autonomic disorders seen in these patients included postural tachycardia syndrome, neurocardiogenic syncope and orthostatic hypotension. The majority of patients (14/15) were female and the majority (14/15) had non-thrombotic neurological manifestations of APS, most commonly migraine, memory loss and balance disorder. Many also had livedo reticularis (11/15) and Raynaud’s phenomenon (nine of 15). In some patients, the autonomic manifestations improved with anticoagulation and/or anti-platelet therapy; in others they did not. Two patients with postural tachycardia syndrome who failed to improve with the usual treatment of APS have been treated with intravenous immunoglobulin with significant improvement in their autonomic symptoms.

Conclusion We believe that autonomic disorders in APS may represent an important clinical association with significant implications for treatment.

Hughes syndrome antiphospholipid syndrome (APS) postural tachycardia syndrome (POTS) neurocardiogenic syncope (NCS) autonomic disorders intravenous immunoglobulin (IVIG)

Received November 12, 2013.

Accepted January 28, 2014.



Yes thanks I did know about that and Prof Hughes talks about the links often.

The tilt table test is horrible, I had a similar experience.


You're a great help. Ty.

So, treatment of your APS did not improve your dysautonomia?

I didn't have this problem, supposedly with dysautonomia, until I would have severe headaches every time I took my thyroid hormone (don't have a gland due to iatrogenic hypo-t...I131 for Graves'). Have taken TH for about 40 years and never had this problem with TH unless I was overmedicated. I had tests which definitely showed I was not overmedicated.

So pain began abruptly two years ago. Then over a two week period I became more and more "dizzy" and a little nauseated. At the end of that two week period I was literally falling into walls. Take care of my handicapped sib and did the vacuuming, etc. sitting down.

Prior to this by a couple of weeks to a month, I did have what I thought was a sinus infection. Couldn't get in to the dr.

Checked myself into the hospital because of this wild falling into walls. MRI, CT was done...they saw no evidence of a stroke but did find a right ovarian cyst. Said it was most likely cancer, put me on a cancer ward around the corner from hospital hospice. Set me up for surgery.

The surgeon from the cancer clinic looked at my legs and ordered Lovenox to be given then and up to surgery. Doppler on legs, ok, however.

Removed my uterus and ovaries. Pathology said NO Cancer. Was placed on low dose bioidentical estradiol and released with no one really listening to my complaints about the dizzyness and falling. The ovarian thing seemed to eclipse the disequilibrium (again, only when sitting up and standing...btw, adrenal cortisol has been checked out via circadian testing of serum and saliva.

Have had problems with balance ever since but have stopped falling into walls. Now just touching the wall when I walk upstairs and making a real conscious effort to walk straight and not stumble or hit a corner. An so many, I have heavy British roots, so much so that when I went to France they all thought I was British and were nice...different story when I said I was "American"...but am Southern (TN) American and we gals would smile and pretend all is ok even if an ax murderer were in the other room :). So I pretend to the world, even some friends, that my balance is ok.

With my British roots, though, I'm still persevering and determined to find an answer.



Annie, it was improved by making sure that I was properly hydrated, that I drank before getting out of bed so it helped raise low BP, raised foot of bed again to help pooling and BP and also added a small amount of sea salt into or on food even though sodium levels were fine. These were all suggestions by the autonomic Dr to try to avoid extre meds.

What Anticoagulation are you on as balance and headaches are normally as a result of too little?


Hi Annie,

I wonder if I have missed some info but I read that you took 325 mg of Aspirin and you bump into walls and things. Bad balance.

I did that on Aspirin when I had my TIAs before I started Warfarin.

Now I wonder if you are properly anticoagulated as I believe you need something stronger than Aspirin if that is all you take to thin your blood.

Relatives also had these symptoms?

Best wishes from Kerstin in Stockholm


Hi Annie, I see that you are in TN. I too have APS and dysautonomia. If you are still struggling with your dysautonomia, I know a great dysautonomia specialty physician in Birmingham, AL. I have been seeing her for 7 years and she is wonderful.

I'm always looking for great specialists so I thought I would share.


I had taken Xeralto for my first clot. After stopping the usage, 11 days later next clot diagnosed. I will talk to a physical therapist and Dr. to see if they have a thought on this. Thanks for response.


I was on warfarin for 6 years, in the army, cycled frequently (including a 140km velothon) and tried to run as often as possible. It all depends on the individual, what they are capable of and what they have access to. I'd never thought of a recumbent bike and was never recommended one, but I imagine they are considerably more expensive than getting on a regular push bike.

As I say, it's horses for courses. I'm now on rivaroxaban and notice no difference between the two. Certainly every patient will respond differently to medication and some will find exercise changes certain aspects of their physiology and interacts with medication differently.


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