Standing

[amandajane76]

I ve started to have issues standing for more than a few minutes.my feet go a funny blue ish/red colour and boy do my low limbs hurt.is this common ? I have a stick but too embarrassed to use it

[Terrier_Lady]

It sounds like you have Raynaud's phenomenon. It's common in people with Lupus. My feet and sometimes hands do it. They then colors, hurt, and sometimes go numb and tingly. Don't be embarrassed to use your stick. I too had a hard time with that and didn't want to use my cane in public because I felt strange being so young with one. I've since had to become ok with using a wheelchair when things are bad as well. If I don't I have no way of going out because I can't stand up to walk long enough and I end up sending myself into a bad flare up. Once I decided to be ok with it, using them made things better because it enabled me to enjoy life a little bit again. So just do what ever you have to, to make the most of life and don't worry about anyone else. 😃

[misty14]

Hi Amandajane

I too have the same symptoms and been diagnosed with Raynauds Phenomenon. It's being treated with Nifedipine 20 mg daily and improved, there are lots of different treatments that can be tried. Have you started on Methotrexate yet?. X

[amandajane76 in reply to misty14]

No.got c.t lungs Monday then rheumy nurse calling thus to discuss.i am sire I have erthymalgia in my feet

[misty14 in reply to amandajane76]

Hi Amandajane

Good luck for your Ct scan on Monday. Let us know how you get on. X

[amandajane76 in reply to misty14]

Nifed does NT help as it seems to then cause feet to burn like crazy

[Barnclown]

Yes, me too...have had raynauds since I was a tiny child, turning colours & easily chilled. The 24/7 numb feet thing set in as I turned 20. but the extra strange tough stuff started as I turned 50, with my feet, hands & face simultaneously burning hot & freezing cold with even more dark purple blues in my feet especially...apparently this is simultaneous raynauds & erythromelalgia....which means vasodilator so like nifedipine make things worse for me. am 61 now.

Like you, standing & walking became very problematic...as well as other things (having to stick burning hands & feet outside the bedding, taking socks off in winter etc). more complex things were going on in my feet too: blood pooling, paroxysmal haematomas due to Ehlers Danlos hypermobility, Mortons neuroma & Bursitis, collapsed forefeet & accelerated equinus contracture due to sle & sjogrens tendon tightening in my legs & feet going untreated until 4 years ago.

Getting onto sle meds has helped a bit, but bespoke full foot orthotics with arch support & metatarsal domes + a RIGOROUS daily physio rehab programme for the tendon tightening have been key to getting me where I am now: I can walk with much less MN & B pain, hardly ever use a cane or wheel chair or shooting stick (so I could sit down wherever I was) any longer...

I must be strange, but I actually love my cane collection, and have never felt embarrassed about using a cane....maybe this is cause I had to get used to them at a relatively young age?

Hope your Drs explain your symptoms & possible treatments to you

Wishing you all the very best🍀🌻

PS another reason i like using a cane is that my version of lupus involves a lot of vertigo & fatigue....a cane helps with all that too...helping me be a wee bit more stable etc

[pjsmith0700]

Hi amandajayne. ...I too have this problem and also use a stick now as I'm too scared to go without it as I'm only 44...but rather use my stick then fall in the street...that's how I see it..xx

[MrsMouseSJ]

Hi amandajane. In addition to the suggestions re Raynauds, it might be worth asking your doctor about the possibility of this being some sort of orthostatic intolerance. I say this as I have Lupus (and Hughes) and have just been diagnosed as having something called neurally mediated hypotension. One major issue for me is that I can't stand still for more than a few minutes without my lower legs discolouring as the blood pools in them; they also start to feel very heavy and 'full'. Plus I find standing still exhausting and sometimes I get dizzy with it. I was diagnosed using a tilt table test.

Best wishes.