Pins and needles

[Lucyllama]

Does anyone suffer with pins and needles in their feet and can anything be done

[BonnieSue]

Pins and needles feelings are pretty common in your feet and hands, and all of your extremities for that matter. By that I mean up your forearms to your elbows and from your knees on down through your feet. Neuropathy means tingling, numbness and pain in those areas. Pins and needles are included also.

If your feelings are bad enough to warrant medication you can take gabapentin and I'm sure there are other drugs to choose from. Some people have trouble with weight gain on this drug, so just be alert for that. I take gabapentin 300mg 3 x day for these symptoms and it works very well.

[Lucyllama in reply to BonnieSue]

Thanks for your input

[Belee]

Hi, I get awful pins and needles in my right foot and leg. Usually starts in the foot but then travels upwards to my knee and sometimes my hip. Sometimes I also get that 'dead leg' feeling. I used to do a lot of running but over the last couple of months I've had to stop completely as it's getting so much worse. It happens when I'm walking now and when I sit down it feels like I've got insects crawling all over my feet! I've had physio as they thought it might be a trapped nerve. That did nothing. Also had various nerve tests which again showed nothing. I'm now waiting for a brain MRI scan but I'm not sure what they're hoping to find there!

Hope you find some relief soon and Im very interested in any responses you get too xxx

[Lucyllama in reply to Belee]

I forgot to say I've just started to get it in my groin but at the moment I can live with it

[Freckle1000 in reply to Belee]

I know the 'insects crawling on your legs' sensation is a Lupus symptom. I had it when I was younger, but without the pins and needles. - it turned out to be pretty benign. I don't get it any more.

[Lucyllama in reply to Freckle1000]

I've never heard of this one its not an easy disease to live with is it

[Freckle1000 in reply to Lucyllama]

There are way too many bits and pieces to keep track of that's for sure. The weight of all the medical possibilities is enough to give you a nervous breakdown sometimes. The 'insects crawling around on the legs' symptom was often considered part of Lupus many many many years back. However i've not heard it described this century. There might be a good reason for this ?

I hope you get a medical answer to your symptoms soon.

[Hidden in reply to Belee]

I also suffer with this, aswell as in my hands. I was also told the Drs thought I had nerve damage, I had nerve conduction test, brain neck an spine scans which all came back normal.. But now lupus may be on the cards..

[Hidden]

I've had this for five years now - slowly covering my arms and legs and face and scalp. I've actually got to the stage where I don't notice it much anymore but my feet are increasingly numb so I'm guessing many of my tiny nerve fibres have died off. No one knows the cause and I've had many investigations through neuro and rheum. Mine has been very painful in the past but isn't anymore. Painful neuropathy doesn't necessarily equate to severity I'm reliably informed.

If tolerated (I couldn't) thenI think drugs like Gaberpentin and amitryptiline can be helpful for the neuropathic pain. But when the neuropathy is severe there is often less pain but instead there is loss of sensation in the parts affected. I believe it's part of the inflammatory process so by treating the disease itself i.e Lupus the pins and needles should go too. When I was on high doses of DMARD medication I didn't have pins and needles but unfortunately I couldn't tolerate these.

[Lucyllama]

Thank you that's been useful

[Toofy]

You should definitely get checked out as this can be a sign of some sort of pinched nerve or nerve damage.

Story time!:

Over a month ago I started with some numbing and tingling in one of my feet that got worse at night. Eventually it was completely numb. Started to progress to my other foot. Eventually got hospitalized and now I have foot drop... It's important to note I was/am going through a flare.

After many negative test results, it eventually turned out to be vasculitis. My nerves were not getting oxygen and getting damaged and/or dying. Getting treated now but it takes a long time for nerves to heal, assuming that they will. So I'm constantly at a state of either numbness or tingling with my feet.

What can be done about this discomfort? There are drugs that specifically help with nerve pain. I'm on gabapentin throughout the day and amitryptaline for bedtime. Makes things more tolerable, and I can sleep.

as I mentioned earlier, you could have a pinched nerve from a herniated disc and things like that, but it'll need to be investigated. And it sounds like for others, it's just something they deal with every day unfortunately.

[Lucyllama in reply to Toofy]

Thank you very much

[Penelope-Mary]

I too have it. I saw the GP for a regular visit and he differentiated between lupus peripheral neuropathy and the numbness and tingling caused by sciatica. I have had a laminectomy so this was useful as it maybe to you. The difference is, with the feet, the soles only are affected, not the backs of the legs. It called it 'sock and glove' I think. it can be a drug side effect too, I take Arava which could be causing it. The tip of my tongue tingles as well as the soles and my fingers.

Not much help but as you can see, it's commonly experienced. 😩

All the best. 🌻🌻

[EOLHPC]

I've had this in my hands & feet persistently since my teens, the degree of numbness with pins & needles has increased as the decades passed. Am now 62. As I understand it, in my case the cause is Vasculitis-like infant onset lupus going without appropriate daily systemic treatment until 5 years ago.

Now my version of this is slightly damped down now by daily hydroxy + myco + pred + amitrip. I had to come off hydroxy for 6 months last year during immunology investigations, and during that time the degree of pins & needles increased. Since returning to daily hydroxy, that has somewhat reduced, but not quite to the level the pins & needles were at before I stopped hydroxy.

In my case, this pins & needles + numbness is associated with a set of chronic neuro cerebral symptoms. And when my simunltaneous raynauds + erythromelalgia flares, so do these symptoms.

My lupus clinic refers to my numbness as:

decreased pain and temperature sensation in a stocking- glove distribution

Hope something in there is useful

🍀🍀 Coco

[Penelope-Mary in reply to EOLHPC]

Yes 'stocking, glove', that's it 🤗.

So uncomfortable and to think it's permanent 😱

[EOLHPC in reply to Penelope-Mary]

So it's a snap for us! Yes....apparently it can be permanent...it certainly seems to be for me. My brother has it too, but due to an injury to his cervical spine. He takes daily gabapentin for this (and he also successfully had major surgery on his neck which stabilised the injury)

🍀😘

[Paul_Howard Partner LUPUS UK]

Hi Lucyllama,

Have you discussed this symptom with your GP? It can have a number of different causes so they may be able to identify what the problem is and maybe help to alleviate it.

[Hidden]

I have pins and needles in my legs and feet followed by a rushing sensation through my body. This only happens at night when I am goung to sleep do not know what it is but will mention it to GP when I go for my next appointment

[kingsnorth]

I know this is an old post and not sure whether it is still active but here's hoping. I have lupus and sjogrens and recently been experiencing pins needles and numbness in my foot 2 toes totally numb. Rheumy doesnt want to know said is neurological. Neuro consultant said he cant see any neurological involvement after initial neuro exam. I cant get anybody to put me back on steroids to calm it all down. Im due to have mri of neck and brain to see if its ms but im having to go private for it. My feet burn really badly at night. My legs hurt as well. Any ideas please