Tingling in feet

Hi never suffered with my feet only my hands.. First noticed feet swelling in July.. Put it down to heat...then tingling started...Haven't really been able to wear shoes or sandals. Just birkenstocks and trainers that are wide fitting....now I noticed my feet get cold and then tingling starts...

Hi lilly...have an appointment soon with consultant.. Will mention my feet and let you know if she thinks...

Hi thought it only affected eyes mouth and hands....certainly more to this syndrome than what I first thought...

Oh no - just google it and you'll find out what it can do!

Hi Glenys

The good news is this: We don't all get all the possible symptoms, and the ones we get can wax and wane. I wouldn't have believed that 4 or 5 years ago because my 62 years of dry mouth and 17 of dry eyes/nose have only ever gotten worse.

But the small-nerve peripheral neuropathy burning and tingling in my feet went into remission after about 2 years. It comes back now and then but I am so thankful that it doesn't stay long and has never had the intensity of the worst times in that original 2 years. I hope that you go into remission soon for I know it's very aggravating.

My feet have long been cold, from my 30s onwards, I guess. My right foot has gotten much much worse so I have to avoid letting it touch cold surfaces, even in Texas summers. Big toe is the worst since I walk around barefoot in the house and raise that one toe up when I'm on bare floor. Socks in bed have long been a source of laughter to my ex.

All the best.

I had one completely numb big toe for years. Not just subjective - my doctor tested it with the blunt/sharp end of a needle and at the height of the problem I couldn't even feel touch, let alone pain. I had to be very careful with it, like a diabetic would. As usual, my doctor said it was "old age". (That was in pre-diagnosis days.) The whole thing - starting with a few years of unbearable tingling, like a constant electric shock, before progressing to numbness - lasted nearly 10 years and then unbelievably disappeared overnight! Literally! As a former neuro nurse, I'm well aware that that shouldn't be able to happen, but it did.

That was about 10 years ago, and I've never had a problem with that toe since, apart from the shortlived attacks of tingling that roam around my body regularly. For the last few years, my left hand, and sometimes whole forearm, has been the worst affected. Most nights I wake up briefly with it numb or tingly, even when I don't seem to have been sleeping with it under my head or body. It's my "phone hand" too, which is very annoying, as it invariably goes off if I hold the phone for more than a minute or so.

I agree it's odd how symptoms can come and go. For me the phase of severe dry mouth and eyes only lasted a year or so, right at the outset, before the peripheral neuropathy kicked in. Followed by the Raynaud's, carpal tunnel etc. etc. Although I have general, low-level dryness of mouth and eyes all the time, I rarely suffer in the way some people on here do.

In fact, over the 20-odd years I've had SS, I've never had more than two or three symptoms at any one time in really noticeable form. They seem to rotate. The tendinitis and joint pains that have been a feature of the past few years continue to fade at the moment, but the asthma - a first - has definitely been on the rise in the uncharacteristically hot, humid summer we're still having in northern Europe. No doubt that too will fade if I'm patient enough! But I am being a good girl now and using my steroid inhaler twice a day, in spite of my initial reservations about side-effects. It's been a lifesaver throughout this summer. Some days, when ozone levels in this city were particularly bad, it was the only thing that enabled me to leave the house. But I remain optimistic that this too shall pass - even though there's every chance it will be replaced by yet another new symptom!

That's cheering news for me about your big toe because of course that right big toe of mine is numb. Ironically I can't feel a cold flat metal disc placed on top of it by doc, but it collects and hangs onto all cold that comes within a mile of its tip and bottom. The thought that it might get better is wonderful, so I thank you for sharing that.

Aitarg, I firmly believe that an optimistic attitude can make a huge difference in auto-immune conditions.

Just to be quite clear: I'm not suggesting that people who are suffering badly have the wrong attitude or are somehow not making enough effort, and much less that it's their own fault.

It's just that over the last 20 years I've become aware of some kind of very subtle link between my immune system and my thought processes. I'm not sure how this works, but it seems that acceptance of each new symptom (and managing it with medical intervention where absolutely necessary) works better for me than getting upset or angry about it.

Thanks for replying... Dry mouth drives me crazy..always have water with me...eyes have been very sore but thanks.to drops and ointment is helping..feet are new to me...going to dinner on Friday formal dress...will certainly look different in birkenstocks if that's all I can get on....

How strange but it's my right foot.too....big toe looks like no circulation...

Glenys, it was my right big toe too! But the circulation was always OK, just the nerve supply was affected for those 10 years.

On the other hand (so to speak!) it's usually been my left hand that's worst affected, whether by arthritis, tendinitis, Raynaud's, peripheral neuropathy or carpal tunnel syndrome.

Hmm ,,, wonder if there's something about ss & the right foot/toe/leg? There certainly is for you, me & Lily.

Just tell anyone who asks that you prefer the Birks over your hiking boots. That'll stump them!

Reminds me of that old Goon Show joke. This was a 1950s British radio sketch show that was the forerunner of today's surreal humour shows - and also launched that great comic actor P et er Sell ers on his career.

The joke went:

"Why is that tiger wearing brown boots?"

"Because his black ones are at the mender's."