Hi, am experiencing loss of feeling...toes and balls of feet...no matter if feet are warm or cold. I just wondered if the secondary Raynauds [which goes with my Scleroderma] has caused nerve damage to my extremeties.
It has been like this for a few months now and although I can move my toes...I can't actually 'feel' them. Worrying! . Also, had some good news from my respiratory consultant, I now have Idiopathic Pulmonary Fibrosis. Maybe this has something to do with the lack of feeling in my feet? Anyone have any ideas? xx
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marilynmcl
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Hi Marilyn! I know that must be frustrating. While I have not experienced your symptoms, my mom has lost the feeling in her extremities. She was diagnosed with CIDP, an autoimmune disease. I have several other autoimmune diseases. I, too, have Scleroderma as well as Interstitial Lung Disease, Pulmonary Arterial Hypertension, Sjogren’s & Fibro.
Yes, I have exactly the same symptoms as you. The area along the sides of my feels quite numb and if I touch my feet I can barely feel the touch. I have to touch them find out if they are warm or cold because I can't feel them properly. My rheumatology consultant sent me for a test (can't remember it's name) which involved them doing something with electrical impulses to measure nerve responses. Result was that my nerve responses (can't remember the technical term) were rubbish. Having said that nothing has happened since, no advice or treatment given, and my feet are still half dead. Looks like it's something we have to live with. Best wishes to you. x
Been to see neuropathy consultant who confirmed that there is loss of feeling to my left leg through nerve damage...so think this is from my spine damage...have a few problems there...so probably either nerves in feet are either affected by the Raynauds or from my spinal problems. So flipping annoying when you don't know if your feet are cold even when on a hot water bottle and they feel numb. Many thanks for all the replies! xxxx
Yes I have a similar problem with my toes. They all feel stiff and hard although I can bend them. They feel numb throughout the year but it sounds like a contradiction as although they feel numb they are also very painful, especially when i walk and when they are cold which is most of the time now. My toes also go bright red and feel like they are burning at times- but still feel numb- odd.
I know just what you mean and it does sound contradictory. My feet are numb but they’re also uncomfortable with my tight scleroderma skin especially in bed. I only find out if they are warm or cold when I take off my shoes and tights/socks.
I have exactly the same problem... they feel numb from under my toes but I can feel them when I touch them... I can't stand any weight on my feet and have to have them out of the covers when in bed.... I had the nerve test which showed a bad result , so much so, he asked me if I lost balance often and fell over ! which I don't …. they are getting worse and the numbness is slowly moving down my feet , i'm not sure if this is due to thickening of the skin and no-one seems to have any answers , to be fair they rarely do... I'm just getting on with things and trying to put my concern to the back of my mind … If you get to the bottom of it please let us know..
I have it travelling further up my foot now...I feel like I am walking on air...if that makes any sense. In other words, I don't know when my foot is touching the ground.
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