Numbness and tingling

[Green85]

Hello everyone hope you all are doing well.my lupus is under control by the grace of God but I’m just wondering if anyone experienced numbness and tingling in shoulders,arms,chest all the time .And feet and legs fallen asleep specially when lie down ?i asked my both consultants but they said it’s nothing just be active do walk because everything is fine but to be honest it’s really frustrating to bear that tingling all the time.if anyone knows anything about this please give me advice.let me tell you i tried hot and cold compress, ibrufin gel, heat spray even used a massager as well but nothing works out .

[Oshgosh]

I get the same symptoms,also get tingling in hands and feet.I suspect it’s a side effect ofDMARDS, ut. I don’t know really.

[Spanielmadlady]

Have you had your b12 checked ? X

[Green85 in reply to Spanielmadlady]

Yes b12 is ok but i have low iron level

[Spanielmadlady in reply to Green85]

Did they give you the figure or just say it's ok? I get tingling hands and feet etc when my b12 in low x

[Green85 in reply to Spanielmadlady]

Yes he showed me a figure it’s been 5 months now I’m dealing with this numbness and tingling but they said we are not concerned about it because everything is fine x

[Spanielmadlady in reply to Green85]

They just don't get how hard it is and how much it affects us do they.i hope your b12 was up above 800.the treatment point is 200 mine was 202 and I was fine apparently that was why I asked if they told you a figure as you can be board line but in their eyes you are ok .I'd keep.pushing it how about keeping a diary and documenting it 🤔xx

[Hidden]

Hi, I have Stills (JRA) and have numbness and tingling in my shoulders and arms and have for many years. I just live with it tbh but it’s quite uncomfortable. 🙂

[RS0309]

I had it in my hands and arms at night for months - but it seems to have stopped since I started meds two months ago after being diagnosed for auto immune. Am on methotrexate, HCQ and a steroid. I thought it was due to inflammation in the veins (which showed in a blood test -vasculitis I think)… so my understanding is the meds have stopped it. Otherwise that’s quite a coincidence!

[Svete in reply to RS0309]

I have been having tingling and numbness in my arms and hands at night especially, also in my right foot for few months. I'm on steroids and HCQ. I'm waiting for my appointment with reimatologist in July to discuss these symptoms as these are new for me. I haven't not been checked for vasculities do far.

[Freckle1000]

I think us lupus sufferers have been stuffed around by Doctors for so long that we've learnt to normalize the abnormal. I know I did for many years - and I know these kind of symptoms are often vascular - but for me having some Neuro investigations helped find some answers. Sometimes the dorsal root ganglia ( at the base of nerves coming away from the spine can become inflamed by Lupus.

Sometimes lupus can cause peripheral neuropathy.

It might be worth you looking at the Lupus UK info packs for vascular and Neuro stuff - but don't give up until you can pin down a sensible Doctor somewhere.