I wondered if anyone has any tips on how to stop this happening and how to bring life back to them!

My fingers go white and I loose all feeling in them, this can affect just one (index first) or spread to all but so far not my thumb. It is really frustrating as the slightest whiff of cold and wham they're gone. When it happens I cant feel a thing with my fingers and whatever I do I dont think it makes any difference to the time it takes to warm them up (I am the gloves/mittens equivalent to Imelda Marcos).

I can get something out of the fridge one minute and nothing happens yet the next time it does. In the middle of summer it can happen just as easily although thankfully less frequent. Up until last week it has only been my hands but at the weekend I am sure the tips of my toes were begining to go too.

I know Raynaulds is similar I used to share a room with someone at Uni who had it (She got a heating allowance so no coins for the meter needed). However my hands don't have three colour changes they just go from pink to white. I have always thought it was because I did a lot of dressmaking - steam ironing and have maybe just affected the nerve endings from having the heat too near my fingers or from always living in cold houses (bad circulation?). Since finding out I have AS I realise it could be part and parcel of all that comes with it.

I have been LSD/NSD for over a year and according to Carol Sinclairs book forgoing starch she stopped feeling the cold, not for me though. I don't take any medication and would prefer to keep it that way.

Any ideas on what I can do to stop it from happening and tips on warming my fingers up when they've 'gone' would be appreciated I could cut myself and not know it when they go numb.

Most unpleasant for you G'ally - although you don't get the 'three' signs for Raynaud's, I would still think that it might be Raynaud's, especially as now yr toes are involved. (I have Raynaud's, and can but agree that it is a nasty one). Could also be, though, a vascular dysfunction, numbness would be a prompt for vascular dysregulation. Strongly suggest that you see yr GP about it. That numbness is dangerous, as, as you say, you could do yourself an injury and not know?

As for keeping warm - one of those heating thingies in a pocket might help. I use mittens much of the time. And strangely enough, my right hand is the colder of the two hands and the toes on my left foot the more numb of the two feet! (I also have vascular dysfunction). AS is such a weird disease.

Take care is the operative phrase...!

My father has the same thing, and I've started having symptoms. He has a Raynauds diagnosis for it, I don't as of yet.

His fingers actually go dead white. Literally. And he looses sensation just as you described. Tell your doctor, Raynauds has its own medicines and treatments.

However: What both me and him have found hugely benefitial is an ancient chinese invention called Baoding balls.

You can aquire them on the internet, through a well supplied martial arts equipment dealer, or an asian food mall sometimes.
There are videos on Youtube show what they are and how they are used, but this is what they are basically;

Round balls that fit in your palm. You use them in pairs, and the trick is to keep two in one hand, and make them rotate around eachother in your palm. A lot of them have a chiming sound inside them, I was onece told if you rotate them perfectly you dont make a sound. Anyways, to get them to rotate like that you instinctively use every joint in every finger, and they were constructed to build up and aid blood flow in your hands. (Initially the need arose from martial artist performers that used to harden their hands by striking into a bowl of steel balls, wich meant a lot of damage to the hands and fingers, and the need to have something that repaired them)

They are in any case GREAT. I cant emphasize it enough. And they are not costly, so what a great way to get better blood circulation, and coordination! (Yes they help finger and hand coordination too, as it takes some practice to master.

Try them out, I'll bet you wont be dissapointed!

Love
gilth

Molly I have had an echocardiogram (I think that was what the first one was called) as part of the tests when I was diagnosed with AS last Sept and a heart scan a bit like ultrasoound? can't remember what it was called and that was clear. Would that cover vascular dysregulation?

Gilth thanks I will definately check those out they sound great probably the whole family will be into those as they go climbing!

Ally

Echocardiogram - yes, that is the name. But, no, it will not show vascular dysregulation. And apologieds, should be termed 'vascular insufficiency of the extremities' (vascular dysregulation more correctly refers to 'no tension glaucoma' - NTG - which I also have...)

This might help explain :
http://www.v2020la.org/pub/PUBLICATIONS_BY_TOPICS/Glaucoma/What%20Is%20the%20Link%20Between.....pdf

The reason I am pointing this one up is, NTG will be best diagnosed by OCT, which checks the retina. Testing for intraocular pressure - IOP - will not diagnose NTG, as NTG is No Pressure Glaucoma. The Humphrey will give the ocular field test. The OCT is quite a diagnostic beast : http://en.wikipedia.org/wiki/Optical_coherence_tomography There is another one (forget name) that does much the same job, but the OCT is one-up-man-ship! Anyway, always useful to get ones eyes fully checked out, fully checked out.

Raynaud's phenomenon - Wikipedia, the free encyclopedia
en.wikipedia.org/wiki/Raynaud's_phenomenon - Similarto Raynaud's phenomenon - Wikipedia, the free encyclopedia
In contrast, secondary Raynaud phenomenon refers to vascular insufficiency of the extremities secondary to arterial disease caused by other entities, including ...

Raynaud's Disease | Vascular Disease Foundation
www.vdf.org/diseaseinfo/raynaud/ - Similarto Raynaud's Disease | Vascular Disease Foundation
7 Nov 2011 ... Vascular Disease Foundation - Fighting Vascular Disease... Improving ... What is Raynaud's Disease / Raynaud's Phenomenon ? Raynaud's ...
Raynaud's Disease (Phenomenon): UC Davis Vascular Center
www.ucdmc.ucdavis.edu/vascular/diseases/raynauds_disease.html - Similarto Raynaud's Disease (Phenomenon): UC Davis Vascular Center

Raynaud's disease, or Raynaud's phenomenon, is a form of vasculitis in which the arteries of the fingers or toes suddenly narrow in response to cold, causing a ...http://www.ucdmc.ucdavis.edu/vascular/diseases/raynauds_disease.html

http://my.clevelandclinic.org/heart/disorders/vascular/raynauds.aspx (this is very good information)

Really do suggest that you see yr doctor. You may be prescribed a vasodilator. L'Arginine is one such, though it has not done much for me so far! L'Arginine is available over the counter, but please do not self medicate, as it may be counter indicated for you. OK? For myself, am going to give it another bash as the tops of my toes are really quite blue - and today are even more numb than usual.

Tsch. One gets soooo flippin fed up with all this stuff, doesn't one. Sigh.

Take care -

Thanks Molly I will plough through the info and then think about seeing the doc.

I might try some of those handwarmers maybe put them at the back of my hand when I am riding so I dont have to keep alternating my hands under my bum while holding the reins with the other

G'ally - get those hand warmers. Do NOT be putting a hand under yr bum to keep it warm whilst out riding yr horse. That is dangerous. An accident is split second. You in a sudden situation, needing two hands on those reins, and can't get the second hand out in time, or, situation that takes that rein from the one hand holding it - get my drift?

Yes. Am a horse rider (or, was). You keep two hands on those reins, so go get hand warmers. OK? (I know, I'm fierce!)

Take care -

Thank's Gilth on the boading ball's tip. My neighbor has Reynauds. I would love to find her a pair.

I've read that Vitalzym helps with circulatory problems, if that's what is causing it. I know you don't have a diagnosis of Raynaud's yet, but Vitalzym is good for that. It cleans fibrin out of the bloodstream so that circulation is improved. The fact that it doesn't always happen under what seem to be the same circumstances could possibly mean that the occurance depends to some extent on the acidity or alkalinity of your body. When your blood is alkaline, acid deposits melt and you can have a large amount of acids in your body leading to poor circulation. The trick would be to clear the acids from your body through your urine or sweat leaving your blood cleaner with improved circulation. So although it appears to be a circulatory problem it could be a urinary problem. Although the liver may have a part to play, too. I'm just not sure exactly what it is, besides the liver detoxing the blood.

This might address the coldness, but as for the numbness, is that a different issue, as in nerves?

I saw this as a result of googling....cold can affect nerves that control blood vessel diameter. It would make sense that it's a nerve thing because of what you said about it not happening to all your fingers. I don't have any idea of a solution, except maybe to start to try to figure out what exactly happens to the nerves that makes them do that when they get chilled.