Weirdness in Extremities!

I've posted about both my hands and my feet before (I think they may be somewhat separate problems) but now both have gotten worse so I wanted more input. All my life my hands and feet are often cold. My father (who I resemble) had "poor circulation" so I've always assumed I do too. When I've posted my symptoms to this board before most people agreed that's what it sounded like.

To summarize what I wrote before: For quite awhile now one or more of my fingers at a time get numb and change color to pale or more commonly grey/black. I found this mildly concerning and mentioned it to my doctor and he agreed it was poor circulation not neuropathy. My toes also get affected, but rather than numb one or more of them sometimes get reddish and swollen. Both things seem to happen more when it's cold and I wear warm socks and fingerless gloves in the house during the winter.

I also about a year ago started getting bad cramps in my feet or calves during the night, sometimes as often as 2-3 times a night, sometimes not for weeks. I mentioned this too to my doctor and he mentioned "restless leg syndrome". I thought this was absurd as my symptoms don't seem to match that at all and people on here agreed with that as well and made suggestions for leg cramps.

Ok, that's it to date. Now recently: I've twice had the experience of all my fingers going completely numb on me at once. One time was while driving and the second was yesterday while grocery shopping. Neither time was it particularly cold. Yesterday while shopping I kept rubbing my fingers and they wouldn't get unnumb. It was really hard to tie the plastic bags with vegies. Then I noticed a woman drinking a coffee and got the smart idea to go to the Starbuck's inside the market and get a cappuccino which I wrapped my hands around as I walked and the heat completely took away the numbness! Which felt like the same old circulation problem.

Now my feet: Recently I've had a new problem. When I'm lying in bed reading or ready to go to sleep my feet are very "jumpy" or "twitchy". It's a strange feeling and much more like what I've heard of as restless leg. Could my doctor have been right? Not sure how he could have diagnosed that from my earlier report of just painful leg cramps! I don't think he's very good so I basically ignore him half the time. Oh, and the leg cramps have come back if anything worse the last couple nights too.

Any thoughts? I can't help but think the two things are connected, and if so "bad circulation" sounds as likely as anything. But this is starting to get a bit more intrusive.

Oh, by the way, I had carpal tunnel syndrome surgery in both hands in 1989 and have had no problem since. The numbness in all fingers is similar to the first symptom I had back then though before the wrist pain started.
Thanks and sorry this was so long!

Hmmm...yes, when I look at the description it doesn't seem to match. Up until these two episodes it is never all the fingers and this time the color didn't seem to have changed much, just numbness. But I'll keep open. What do you do for it?

Thanks, Shawnmarie, I thought it was always all the fingers. The part after it warms up is the part that looks dramatic at least in online fotos and that I don't see when they warm up, but I'll keep watching.

Huh, really! I thought about it and realized the "new symptoms" just feel different because they were all the fingers and so felt more debilitating. But I thought Raynaud's was more dramatic color change like this:

What I get in my toes seems different. Just a little reddish and swollen.

That holding the coffee container seemed to work like a charm.

Hmm...I definitely am going to have to reconsider this. What I'm reading means that it is ultimately a form of "poor circulation" which would have been a non-specific term used in my father's time.

Unfortunately the sites I'm reading all say that coffee triggers it. Do you find that? Yike, I can't give up yet another thing I love!! One site only also mentioned beta blockers as a possible trigger. I take bystolic for my arrhythmia after trying about as many meds as there are, so that would really be non-negotiable.

Like I always say, "I don't ever get sick, I just get conditions".

Have you gotten your b12 checked? I had probs with my hands and feet and it was b12 being too low

No. Did you have problems like mine? I haven't heard before of B12 being a D problem; is that something we're subject to? I eat a pretty good diet of whole foods.

It could be. My wife as a B12 deficiency and has an excellent diet. Some of the symptoms are similar to neuropathy. If that's the case, it's easily treated. I give her an intramuscular B12 shot once a month and she's fine.

I just looked up B12 and it says prime sources in diet are from animal protein. I'm a vegetarian so all I eat are eggs and cheese which seem to have the least B12. Are you, Alicia and your wife, Christopher, vegetarians? It's not available in pill form?

Yes - my wife was a vegetarian when we discovered the deficiency. In fact, the Dr. at the time drew the same conclusion about a lack of animal protein. However, there can be other causes too. You can get your B12 checked through a simple blood test. If you are deficient, I don't know if you can rectify it through supplements. Maybe. Your Dr. would know best. I know in my wife's case the injections work best. One of the upsides of my T1 diagnosis is that I've become an expert at giving shots... :-)

Yep, shots would be no problem for me Thanks, Christopher, I'll mention it to my doctor when I go next time. A shot once a month would be well worth it to stop these annoying finger/toe attacks!

B12 is sometimes caused by a lack of animal protein, but sometimes it's caused by absorption. My father takes intranasal B12 once a week, and before that he took injections every three weeks for years. His problem is absorption, which is why pills didn't work for him--if your intestines don't absorb it, then pills won't help.

Absorption can also be at least semi-genetic. That would be a fairly simple linking factor between you and your father.

And yeah, sorry Zoe but it does sound like Raynaud's.

Well, Pernicious Anemia is autoimmune and causes a few things, like the inability of absorbing B12 orally. It also destroys your stomach enzymes & acid (Hcl). Without B12 injections, it is terminal. I have had PA since I was 25 y.o., take my injections, also pills that contain Hcl and enzymes with food. It caused some numbness in my feet and slow digestion long before I got Type 1. Oddly enough, the problems with my feet improved when I went on insulin.

I was going to say it sounds like Raynauds Syndrome to me too.

Yep, I'm definitely going to have to seriously consider that; thanks, Christy

It's starting to sound like a consensus; thanks guitarnut!

Yes I was a vegetarian until I started having to many problems from not getting enough vitamins. I have some allergies and I’m lactose intolerant so it just didnt work for me trying to be vegetarian unfortunately. I started b12 shots last month and its definitely helped with the the numbness and tingling for sure! Definitely get your doctor to look into your b12. My doctor said she hadn’t seen a low b12 like mine in yearssss. :confused:


It almost sounds like small vessel blockage or small vessel disease. My hands and legs got cold when mine started. The doc told me there is no real treatment. Still with it being a concern you shoudl maybe see a cardiologist and discuss it with her. all of us long term diabetes shoudl maybe see a cardiologist because of the coronary disease element.

Just a thought,

I sure hope it is something else.


Thanks, Rick. I'm sorry you have this and hope it isn't too debilitating or dangerous! I actually do have a cardiologist who treats my arrhythmia and I mentioned it to him but that was about a year ago when I last had my stress test.

I just looked up small vessel disease and I don't seem to have the symptoms listed (or the risk factors other than diabetes of course, which is a risk factor for just about everything!)