Pins and Needles anyone?: I seem to... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Pins and Needles anyone?

AMDP profile image
AMDP
6 Replies

I seem to have constant Pins and Needles- does anybody else have this and what can I do to stop it- it is so uncomfortable.

Ax

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AMDP
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6 Replies
zenabb profile image
zenabb

Where do you have your pins and needles?

AMDP profile image
AMDP in reply to zenabb

Mostly hands and feet

Barnclown profile image
Barnclown

Yes, I've been coping with more or less constant pins&needles in my hands & feet since the mid '90s (i'm 57). Sorry, but I can't say I've got any really great sure-fire tips to stop them. Basically, in my case, using my hands and bing on my feet seem to make them worse. Which sort of leaves resting up & not doing much as my boring impractical way of stopping them. Maybe they're worse when I'm cold, but they're also bad when I get the burning overheating opposite side of the coldness. In my feet, I've discovered wearing bespoke full foot orthoitcs with heel & arch support & metatarsal pads helps a bit.

Now that a really good autoimmune specialist NHS rheumy has told me my raynauds, erythromelalgia & sicca syndrome are secondary to systemic lupus, I've been googling sicca syndrome (aka sjogrens syndrome). Reading up on this has sort of helped me feel as if i understand and can begin to come to terms with my pins & needles etc, which somehow makes it easier for me to cope when I can't do much to stop them.

But, apparently the plaquenil, my rheumy started me on 3 months ago, may eventually take the edge of my type of pins & needles. This can take up to 12 months to kick in, I'm told. I see her again in December when, who knows, maybe she'll have other ideas for how to treat this pins & needles. I think my version is also called peripheral neuropathy.

I wish I had something more helpful to suggest. Certainly things like meditation do help me keep calmer about having these sensations. And I guess that helps damp them down a little bit but who knows. Also, I've been on an ant inflammatory diet & supplements for some time now, which is meant to help, but who knows. If you're interested in details of these, let me know and I'll post info here. My NHS pain specialist recommended these last year, but I had already researched them and was onto a regime before his recommendations. Since then I've run into this recommendation from other reputable ounces, so it seems anti-inflammatory diet/supplements are fairly main stream now. But I am no expert and am just trying my best to cope and understand my version of all this

But thanks for reaching out: I wish I could help more. And I am Vvvvvv interested in your experience and that of others especially if it is similar to mine. For me, it helps to know I'm not alone, trying my best to keep calm & carry on

Anyway, take care & good luck!

AMDP profile image
AMDP in reply to Barnclown

Many many thanks for your long and thoughtful reply to what I had hoped would be just a simply matter. hey ho.

I shall look up the things you mention and talk to my rheumy. I think the diet/supplements sound interesting too.

You are not alone- I am quite new to this but I have gleaned that there are a few of us out there. I suspect there many more too but they just don't use computers. There seems to be a very complex array of symptoms too.

As you say all we can do is try to keep calm and carry on.

Again thank you so much for your comprehensive response.

All the best, Ax

Pipsmum profile image
Pipsmum

Hi

I used to get the pins and needles in my feet. I also have Sjogren's Syndrome. I have been taking Plaquenil for about 14 months, and it definitely helps. I have also been taking amitriptyline for the pins and needles for about 4 years. That helped some, but I think the Plaquenil is a good way to go.

Kathy

AMDP profile image
AMDP in reply to Pipsmum

Many thanks Kathy- I shall have a word with my doc. Ax

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