Neuropathy

[Kerryann82]

just looking for some advice or reassurance I suppose.

I keep continually getting itching and tingling nerve type pins and needles in legs and arms. This seems to be so much worse when I get out of the shower. It’s really uncomfortable however I wouldn’t really call it painful x

It seems insignificant compared to all the other lupus stuff I have going on at the moment but tonight it’s really bad, feels like electrical currents through my arms and legs.

Is this a common thing with lupus? Or possibly something unrelated? I do get nerve pain when in a flare up generally but this feels different x

[KayHimm]

Kerryann -

I have something similar. I get severe itch when I go from the warm shower to cold room. My neurologist said it is the nerves but I don’t know which ones. I have autonomic dysfunction but think this may be a different part of the nervous system. He explained that we have trouble with the temperature change.

What I do it take a hair dryer to my body right away. Neurologist thought this was « brilliant. » I look like a nut, though!

Why don’t you try things to keep temperature steady?

Totally understand your frustration with this symptom. I actually think it must be a part of my autonomic neuropathy since it involves temperature. Definitely mention this to your neurologist. They will want to know.

I think it is more accurate to say it is likely a feature of your neuropathy that could be from your lupus.

Do you have trouble with heat and extreme cold? Humidity? Do you feel light-headed when you stand?

Kay

[solo99 in reply to KayHimm]

Thank you for such a clear and detailed post Kay, it has answered a lot for me too.

[bookish]

Hi, it could be that you also have a B12 and/or folate metabolism issue alongside - which is common with lupus and other autoimmunity. What were your last test results? It would help to have a full blood count done too and please don't take an oral supplement until testing completed as it will skew the results but may not fix the problem. Cheers

[Kerryann82 in reply to bookish]

Fab I will look into this thank you x

[Riesa12]

I have lupus and antiphosphilipid syndrome, I also have sensory axanol neuropathy caused by lupus, I have trouble with temperature, sometimes my core is so hot yet my arms and feet are so cold, this really confuses my brain as I can't make out if I'm hot or cold, neuropathy is definitely the worst part lupus by far , sending you my love xx

[Kerryann82 in reply to Riesa12]

How strange but thy really resonates x in the last 12 months I’ve had cold arms and legs but my actual body feels warm, often too warm x very bizarre isn’t it x

[MusicalFurbaby]

Hi Kerryann, I don’t have temperature reactions but I do get frequent tingling and numbing in both hands, especially when sleeping - it wakes me up. As you say, not exactly painful, but troublesome. Good luck working it out, especially with the whole shower thing! 🌻🌈

[Kerryann82 in reply to MusicalFurbaby]

I’ve started to notice it more and more during the day and at night and not just related to shower. Such a weird crawling tingling feeling, wish I knew how to stop it x

[MusicalFurbaby in reply to Kerryann82]

Same here. I also get sensations of bugs landing on me and crawling across my skin. Most unnerving.