Sticky Blood-Hughes Syndrome Support
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Poor circulation

Hi. I'm wondering if anyone with APS suffers poor circulation in their legs. I have had weird sensations for the past three years which have got worse lately, perhaps the last 18 months or so. Gp suggested restless leg syndrome but I know it's not that as symptoms are different. My hubby just suggested poor circulation as my calves are always cold as well as my thighs and bottom. Any suggestions. Is this typical?? I have an appt to see rheumatologist who specialises in APS early January but feelings have got so bad lately I worry I won't make January! It scares me as I'm now thinking clots and all the problems they bring. I only take a small dose aspirin daily and that's when I remember. Anyone out there got any advice. Many thanks. Xx

13 Replies

My legs - particularly the front of my thighs and bottom, as well as my feet get very cold. Prof Hughes told me cold feet are a sign of circulation issues. So my advice would be to keep yourself moving if you can and on days where you cant do the ankle and feet circles, up and down feet where you point your toes and then bring your feet up etc etc. Just keep the circulation moving.


Hi, don't forget to take your Asprin it's very important. My feet often got really cold, before I was put on warfarin and still sometimes are.I had no hair on my legs now it has come back, I think a good sign of improved circulation, I still get aches I'm my legs which improve when I put them up also a good to exercise.



Heat can help to maintain circulation. As you probably know, when the body gets cold, blood is redirected away from fingers and toes, which is why many of us reach for the mittens when the temp drops below 65F. Warm socks, a thin leg warmer base layer, and ( if no inflammation is involved,) a hearing pad set on low.

We have a lot of hunters here in West Virginia, so here we all have access to those chemical heat generating packs which can be slipped in your socks or mittens.



Hi, thanks everyone for your comments. The sensations worry me more than the cold, its as if all my nerves within my legs are alive. Horrible. Anyway, roll on January and hopefully I will get some answers.

Thanks again.


Hi,I have had months of strange sensations in my legs and in my shoulders, and after talking with my GP,she diagnosed restless leg syndrome which had caused me alot of sleepless nights.I have been prescribed with (rotigotine transdermal patches) which have given me some relieve from this annoying condition and now I only have had a few bad nights,I also suffer with cold legs and feet.I bought myself 2 wheat bags and take them to bed with me and they have definately help me.I hope you find the answers to your problems.

best wishes



Hi I've just seen this post and wondering if you ever did find out what the feelings were in your legs.they sound like what I get and I've bought a circulation booster it's he best investment ever


My thighs and bottom nearly always feel cold even when I am relatively warm if that makes sense. Also since I ave been on warfarin I am a lot colder generally. My GP says many patients on warfarin complain they are cold.

If your doc told you to take aspirin then you really should take special care to remember each day as if you build it up you may see a difference in your symptoms.

Don't worry too much January is nearly here.


Ho-ho-ho Miss Daisy: My hands, feet, bottom and thighs are cold and purple in the winter, but that is minor compared to the severe cramping in my calves. I mean really crippling cramps. The calf cramps often very rudely wake me in the am, but can come out of nowhere during the day. Also, my foot, calf or one side of my face, hand or arm will get "pins and needles" or they "fall asleep" with nothing hindering circulation. It happens several times throughout the day, particularly when I have been sitting a while and am very relaxed. Just returned from the MD today. My GP had run a whole lot of blood tests for pre-op surgery of cataract removal on 1/15/13, and all is well except cholesterol and a real wonky blood pressure. I wake up and it is soaring high. Example: 196/127 Pulse 52 and after 45 min on a treadmill it drops to 128/75 and slowly crawls up throughout the day regardless of emotional stress or physical stress. I thought I might be at war in my sleep, but I sleep just fine. Well, maybe a bathroom trip occasionally. Otherwise, I am a light sleeper, but I sleep. So, we compromised that I would try to handle this wonky BP with meditation, calming music and diet and exercise and she said okay, but I want you to take one 5mg. Crestor/wk for 4 weeks. If I can't bring it down naturally (which I have done before), then we'll take a look at my whole picture again. My rheumatologist put in bunch of blood tests for some sort of muscular disorder, but I do not have the results interpretation yet. She will probably call tonight. But glancing over my GP's shoulder at the computer results, all looked okay with the muscular tests. Right now, I have a splitting headache and need to take some medication. You are not alone with the strange leg sensations. I'm not getting sufficient answers either.

Stop worrying and start a list of questions you want to ask during your upcoming appointment. It not only passes the time constructively, it organizes you for the limited time with your MD.

Well, we can hope for answers and pain alleviation for 2013 together. Till then, MissDaisy, have a safe, healthful and happy Christmas and may 2013 be better for us all.

Hugs, smiles, prayers and a hearty ho-ho-ho!



Hi, I have terrible cold feet all the time,i dont seem human!! I posted on here last week about my thumb going dead,and I get numbness in other parts too,no sensation at all. Raynauds doesnt help-neither does warfarin. I get restless legs too - my consultant put m on iron to help and I have to say it does, and pregabilin helps with the pain associated with the crawling and twitching of the muscles,though not the sensation. No answers im afraid b ut I always find its easier to know your not the only one x


Thank you all for your comments - its good to know that Im not the only one with weird symptoms and your comments all tend to cheer me up and give me a kick up the back side. Its easy to get down with all thats going on and the unknowns. Anyway, I have learnt something - I didn't think the Asprin would actually do anything as its such a tiny amount but if it does build up in the body, then great, I will stick to it and hopefully see some positive results.

Thanks everyone and have a great Christmas and roll on 2013 - bring on the sunshine! xxx


Good on you. Mary F x


sorry for late reply, have only just caught up with emails. I too was only on aspirin and my brain fog was terrible. My left leg and foot went numb. Finally put onto anticoagulants and had immediate effect on brain fog but my left leg and foot remain numb to this day. I have had nerve tests, and there is nothing physically wrong, it is purely the messages not getting through to my brain. Yours may be something different, but I urge you to discuss your medication before it becomes permanent. I also have Reynauds and very cold extremities but I'm afraid I can't do anything about that. I sometimes use a tens machine for my feet which can be of some help. Stella


Yes, I can totally relate to these symptoms too MissDaisy. I believe it's called peripheral artery disease, and the pain you get going up the stairs in the muscles of your legs is called claudication. It can be quite debilitating. I'm not even allowed to drive my car for more than an hour. I did a 2 hour plus journey once and felt crippled for 3 days after that. Worse still, if you have an APS flare, the pain in ones legs can actually make walking / driving impossible for a day or two. This happens to me probably 4 times a year. I am badly affected by cold weather so I wear motorcyclists thermal base layers at the first hint of cold. Works wonders! I also have heated gloves for riding my motorbike - even during summer, or I always get cramps in my cold fingers! Doesn't matter how hot the day is! My fingers are always cold. Feet and toes too unless I wear thermal socks and stay active.


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