Does anyone else with APS/SLE have cold/stiff/numb feet, hands and legs but DON'T have Reynaud's i.e. no skin discolouration?

I have Systemic lupus erythematosus & Antiphospholipid syndrome

When I am stationery, i.e. sitting down at my desk, in a meeting, on the sofa at home, in bed, etc., I have to ensure I stay warm in order to not stiffen up, get numb joints, feet and hands.

For instance:

· IN WORK; I can have problems with the AirCon in the open-plan office. What is standard heating temperature for everyone else can still leave me cold and I need an additional heater under my desk. This ensures I don't stiffen up and get "cold feet" and "stiff legs/joints". (I had to fight for the heater as no one in work understood what the AirCon and cold was doing to me in work - they said I should wear a cardigan)

· ON SOFA; I ensure I'm well wrapped up, have layers, heat on, etc.

· IN BED; I can wake up in the middle of the night - multiple times - with numb hands and feet.

But don't have skin discolouration so have been told I don't have Reynaud's.

I am 42 year's old and was diagnosed with Lupus at the age of 20/21. Since then, I have also been diagnosed with Hypothyroidism and more recently Antiphospholipid syndrome. I am currently taking the following medication; prednisolone, hydroxychloriquine, thyroxine, asprin, citalopram, calcium tablets and pain killers daily.

My question, if you would be so kind, is to ask if this cold/stiff and number legs and feet is also common in other people having SLE and/or APS? Even if they to don't have Reynaud's???

As you will all know, it can be very debilitating and lonely living with this disease and no one other than another sufferer or close family really understands. It can't be seen and no one else really understands so I'd be grateful for any feedback.

10 Replies

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  • Hi..I have APS and Raynauds. The Raynauds is very intermitten so it doesnt affect me too very much. I am VERY cold all the time. It is 80 degrees out and I have a sweatshirt on. Inside if the AC is on I am under a feather tic with goose down in it to stay warm, with slippers too. I believe it is just another symptom to chalk up to APS....makes sense that with thick blood that the circulation would be affected too. The heat also makes me feel sick...heat sensitive.

    When my INR is low I am colder too....

    Hope this helps

  • Seems to me hypothyroidism can make you cold too if I remember correctly. My daughter had transient hypothyroidism when she was young.

  • Hi I have APS but not lupus or raynaulds or at least not diagnosed ii have all the symptoms you describe coldness stiffness and numbness.I started physio yesterday and the physio wants me to do heat hydrotherapth.I use a hot water bottle all year round at work and at home.I'm constantly fatigued and need at least a diagnosis if I have something else or it more recognized that those with APS can struggle daily.

  • Hi there,

    Not sure if I have Raynauds, the doctors not sure either! but I am cold. Especially feet and legs, they feel cold and they are cold to the touch. I have recently seen a podiatrist who checked my pulse points in my ankles and legs and said the pulse was strong. She is going to see me yearly to check this and allow me to have a check up, this reassured me but I still have cold feet and legs.Be careful with hot water bottles as I managed to burn my feet with a bottle as the feeling in my legs and feet is also diminished. Very sore legs as a result. Yes, I know I should know better, but it is so easy to make a mistake with this illness. Love to all MaryH xxx

  • I get cold even in this summer last few days, my hubby says you can't be, but I have goosebumps, my legs are painful, numbness due to Perihperal Neuropathy. I find that when my legs hurt, my INR is high which is 4.4. today.

  • Thanks for all the fab answers guys. It's kind of comforting knowing you're all out there with similar problems - I don't mean that in a bad way!!!

    I keep telling my doctor that my hands and feet (and legs sometimes) are cold, numb and sometimes very painful - but when I tell him I don't have skin discolouration - he just says I don't have Raynaud's and that seems the end of it.

    I figure if it isn't Raynaud's (even a mild case because of the skin colour thing), then what is it down too - i.e. can I fix it!!!

    Maybe I just have to suck it up ... I guess having Lupus, Sticky blood/APS and an underactive thyroid ... the cold feet and hands are probably just down to one or a combination of all three.

  • Yes I have numb hands in the mornings and sometimes feet, however since my thryoid has been treated in the correct direction I am feeling the cold a great deal less! Best wishes x M F

  • I have Systemic lupus erythematosus & Antiphospholipid syndrome , and hypothyroidism im always cold but all tests always come back negative ,i have refused steriods as i think they will do me more harm than i am suffering at mo , have seen my dad go down hill due to steriods :( , dont think i have had any conclusive answers as to my condition , cant get life insurance due to sle diagnosis even though 10 yrs on i have no symptoms !!! hope you get to the bottom of your illness , i take thyroxine 50mcg and asprin 75mg daily .

  • I have APS and also get numb feet and toes, and sore hands. Thought it's a regular symptom, but still learning.....

  • Hi, I also have APS and get cold feet and hands and numbness, no disscolouration either. I assume it is down to poor circulation caused by sludge blood! X

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