Sticky Blood-Hughes Syndrome Support
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Any advice on living with post DVT Varicose Veins?

Following further DVTs in my left leg in 2012, I was eventually diagnosed with APS and have been on Warfarin ever since with an INR target of 3.5 (range 3.0 to 4.0) which is well manged by a combination of self testing at home and periodic testing at our local hospital in Carmarthen (UK).

Despite wearing support stockings, exercise, elevating when at rest, daily moisturising etc my left leg is deteriorating and I was recently referred to a vascular surgeon and had several scans the results of which were not good. There is extensive damage to the veins, valves and I have venous reflux resulting in blood "pooling" in the lower leg veins causing bad circulation, discolouration (hyperpigmentation), pain/tenderness in my calf and periodic infections.

Surgery is not an option due the extent of damage to the veins and my right leg whilst not as bad is also showing similar signs. I have always been an active guy but now find I have to walk with a stick and cannot walk anywhere near the distances I could previously, Similarly, driving is proving troublesome and changing to an automatic is on the cards.

With surgery not being an option and wishing to stay an active 60 year old I would welcome any advice from anyone who has similar problems and how they manage and any medication that may be of use.

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I am very sorry to read this and can understand your frustration and concern.

I wonder whether you have spoken to your specialist and GP about your concerns? I am also wondering whether seeing a physiotherapist might be able to give some advice, exercises that might be helpful.

You say that you need a walking stick and wondered whether rather than a walking stick which necessarily can lead to the spine leaning, rather than vertical, that you use a special kind of poles?

I am also disabled and have found this particular kind, designed by physiotherapists, to be invaluable. My 90 year old mother also uses them.

If you are interested, PM me and I will give you the information.

I have no relationship with this company or receive any monies whatsoever. They are used for MS, Parkinsons, SLE and a variety of medical conditions.

With good wishes,

Ros

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Funnily enough I was going to suggest similar. My husband used them while his knees were bad and before replacements. They also look better than a stick/cane!

You don't mention your APS specialist, do you have one and what is their view on this problem?

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Thanks for the advice and will certainly look at a pole as opposed to a stick. I was referred to the vascular surgeon by my rheumatologist who's very supportive and interested on the APS side. I'm due to see her after Christmas for my next review and can discuss physio and other possibilities that may be suggested with her at that time. Thanks you everyone for coming back, it's appreciated.

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My legs have been chronically affected by DVT's. They constantly look swollen and very blue, due to blood pooling as you say. Apart from the advice above I have found one other thing that helps me tremendously. I have bought an electric bed. I raise my feet, only slightly, at night. The following morning until about, 12ish the blueish tinge isn't as bad or as noticeable and my legs feel far more comfortable. Unfortunately, this feeling doesn't last all day, but it is a great help. I don't know if it's a coincidence but I haven't had any ulcers on my legs since buying the bed. I know I wouldn't be without it.

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Thanks for sharing your experiencing with the electric bead, something to consider. As we both know elevating the leg, even if only slightly does give relief from the symptoms but as you say it's only temporary.

Another thing I find if I'm in bed for more than a couple of hours my calf has spasms and cramp unless I get up and move around then it gets better. Sometimes I finding standing with all my weight on the bad leg gives relief. What a state !

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Great stuff, how many miles per hour does it do!!?? Keep well. MaryF

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Hahahaha!!!! Now that would be telling! :D

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Great feedback and advice, thank you. MaryF

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I don't know whether this would be helpful, but I have to wear "stockings" because of lymphoedema and certainly they are advised on long haul flights, to prevent DVTs.

The stockings are explicitly made for me, due my condition and come from Germany. I would ask a vascular surgeon about their suitability for you. I have to wear them all the time, except at night.

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In my case I was told a definite no Ros. The reason being that stockings can worsen oxygen delivery in arteries/veins with impaired blood flow and further damage faulty return valves. That doesn't mean to say it wouldn't be suitable for anyone else though. :)

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I am glad you explored this option.

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This question of whether its beneficial to wear support stockings seems to be cropping up more and more lately. My vascular surgeon, rheumatologist and GP are firm advocates of support stockings but my hematologist at my last appointment referred to a change of thinking that is now emerging and checking on the web produced this article from the Daily Mail - dailymail.co.uk/health/arti... - Guess its another item on my list for my next appointments

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