Persistant peripheral neuropathy

[Wrexlu]

I am sick and tired of lack of sensation in my hands,feet and legs. It is really worrying me. So much so am going to get in touch with my rheumatologists secretary and see whrn my appointment is.

It is very distressing having these symptoms. My feet are incredibly painful as well as numb meaning it is very difficult to walk. No footwear feels right.

May have to see a neurologist to get to the bottom of this problem.

Also suffering badly with joint pain all over and extremely dry eyes. What a nightmare.

[Hidden]

Sounds horribly familiar I’m afraid. I have Sjögren’s as my main rheumatic disease and apparently this numbness and intermittent joint pain has been caused by small fibre neuropathy, typical of Sjögren’s for many sufferers.

[Wrexlu in reply to Hidden]

It is really horrible and scary. I go swimming and worry about slipping over. Am going to make a phone call today to see about an appointment.

[Hidden in reply to Wrexlu]

Tell me about it🙄 I’ve put on loads of weight since feet and legs went numb because I am always scared of falls on hard, uneven or slippy ground. Starting 4 hydrotherapy sessions this week and already angst ridden about slippy surfaces after fall led to rib fracture a few months ago.

Also really hard to type now!

[Wrexlu in reply to Hidden]

What can be done about it? Is there anything that can help? I have a diagnosis of SLE and am having a terrible time with it. Had the worst summer ever and my flare has been going on since May. Very upset.

I have just starting seeing a new man and now my skin is affected I feel embarrassed. Seeing him on Sunday and want to look my best.

Sorry for the ramble.

Xx

[Hidden in reply to Wrexlu]

Sorry can’t give you any good news if you have small fibre neuropathy - but you should get it checked out by a neurologist anyway.

[Wrexlu in reply to Hidden]

How are you doing at the moment with your general health?

[Hidden in reply to Wrexlu]

Thanks for asking. I will post again soon with a post about gaslighting - but if you click on my name you’ll learn more about my journey from posts here. 😊

[thehiker in reply to Hidden]

Ditto , I have the same disease and also diagnosed with small fiber neuropathy .

[MsAndyIvy]

H

I have the very same problem though I am (as yet) undiagnosed for Lupus.

I had my small nerve testing done a couple of weeks ago after quite a wait. It confirmed peripheral neuropathy but was basically told it’s just something you have to live with by the consultant after the less than overwhelming testing procedure.

They did also mention possibility of Sjorgen’s as my lip has now gone numb but it was upto my rheumy and neurologist to consider this.

Hey hum.

Fingers crossed.