Peripheral Neuropathy

[cockneyrebel]

I have Lupus SLE , hyper mobility syndrome,and Peripheral Neuropathy does anyone else suffer from feelings of pressure and burning in feet & hands, apparently my peripheral nerve has become extra sensitive and I now have a Gremlin' rubbing course grain sandpaper over my skin and another pushing the soul of my feet (feels like walking on bruises) I wear lidocaine patches overnight but I need some ideas on how to cope during the day ?

[Barnclown]

Hell o there: I feel for you. Sounds a lot like my version of things.....has anyone suggested you may be experiencing (ET)?

This is what 2 rheumies say is responsible for the burning and pain in my hands & feet. On the healthunlocked raynauds & scleroderma forum you may find others managing this. The erythromelalgia assoc website has lots of papers and info about the condition. And the raynauds & scleroderma assoc website oes too. I have ET simultaneous with raynauds. I've been looking into it for a year or so, and get the impression all these things can go together as the seem to in my (SLE, hypermobility, MCTD, sicca symptoms, raynauds, ET, vasculitis, PERIFERAL neuropathy....metatarsals collapsed due to hypermobility (even though have been wearing bespoke orthotics all my life...)

I manage my ET by wearing falke socks (available online in vvvv soft but cool or warm materials from sock solutions,..I wash feet and change socks during the day). I make sure I get a monthly pedicure from a girl who knows my feet and cares for them sensible (my spine makes it hard for me to reach feet), plus daily Weleda foot cream anti inflammation diet, raising feet when flaring (feet & hands have flaring cycles 24/7 in all weathers), stick feet & hands out of bedcovers during ET flares etc etc. basically I stay off feet when I can, and don't use hands too much...what can I say...you can apply cooling strips from boots etc...but soaking in cold water isn't recommended....etc. when I started plaquenil it did help take the edge of all my symptoms slightly...but there are meds for ET (see websites I mentioned).... I just haven't tried asking for more meds yet...

Hope you'll let me know how you get on....this stuff is vvvv debilitating...in my experience.....

Good luck...

[Barnclown in reply to Barnclown]

Ps. Sorry! My computer does stuff and I miss it!!! ET = erythromelalgia. Wish I could control my typo-itis better: I try but something always gets past me....daggnabbit (sp?)!!!!!!!!!!!!!

[cockneyrebel in reply to Barnclown]

i cant wear socks at all, I can just about bear mules/slippers. I have a cage for my bed covers which keeps them off my feet, the lidocaine patches do help but i can only wear them for 12 hrs max which i choose to wear at night

My hands are a mess and due to the lupus rejecting anything foreign, I have had a nightmare with corrective surgery as my fingers were locking due to lack of soft tissue.my body rejected the metal pins...very painful.

[bettie]

Hi

My mum has Peripheral Neuopathy so did her sister and brother but not lupus. I have SLE, and just resently my feet have been burning also the palm of my hands most of the time are blochey. I tried to ask rhenmy nurse if my mums condition had anything to do with my SLE, she total dismissed the idea.My mums feet and ankles are really bad she is 85. She asked her gp if she had Lupus because i had it and he said no chance, i don't understand I'm not saying my mum has lupus it's just that the medical people seem to dismiss any connection.

A puzzled Betty

[cockneyrebel in reply to bettie]

Bettie

i dont know if it helps it has for me greatly (not 100%) gabapentin helps to turn the nerves of some

[Barnclown]

Cockneyrebel, you sound very brave.

How long has this part of your lupus been this bad?

Am vvv glad gabapentin has helped with the nerves. Have any other meds helped?

Have your drs even mentioned ET at all? I ask partly cause I'm new to understanding all this, but I get the impression some drs consider ET as a sort of side effect of other more profound issues, or something, for instance, when there is a primary condition like lupus....eg some people seem to get ET on its own and testimonials on the ET association site refer to various meds these people are finding helpful

Anyway, mine had gotten bad enough over several years so that I was at my wits end with this last year when my lupus etc was diagnosed (and they discovered I'd actually he'd SLE since infancy...am now 58). It's been such a relief that plaquenil has helped at all with these parts of my condition....but I admit, this stuff isn't responding as much to plaquenil as say my general joint pain and skin stuff are....and I am dreading warm weather turning up cause that's when this stuff gets even worse for me....I keep the heat in our house low as poss in cold weather....

Is yours worse in warm weather?

Oddly enough, I'm also interested in metal pins/implants rejection.....I seem to be having probs with this in my upper jaw/sinus.....5months on high dose oral antibiotics for mysterious infection etc. over past winter....still simmering

[ceceliac10]

I have the seem thing burning in hands and feet. Feet and hand burns as though its over a gas hop. My is the lupus.Lupus can cause this