Feet tingling gets worse laying down. Happen to you too?

[Spanners_]

I just wondered if anyone has a similar problem. I’m trying to work out if it’s a low b12 symptom, or not.

Most nights when I lay down in bed my feet feel like they’ve turned to ice. They haven’t. They’re still the same temperature. They just FEEL tingly and cold.

When laying down I can also get cold feeling/tingly hands, a cold feeling/tingly nose, a cold feeling/tingly shoulder blade, and lately tingly/burning lips (which develop when I sleep).

I have unexplained low b12 (I’m not a vegan/vegetarian but blood tests say I have intrinsic factor) And have been having b12 injections at the GPs, after oral tablets didn’t work (b12 levels went lower while on them). I had first loading doses in September last year. And first regular dose in December.

Does anyone recognise these issues too? The GP just shrugs their shoulders.

[Gambit62 Administrator]

if the tingling etc are worse in particular postures that suggest that there may be something musculo-skeletal going on, eg nerves being constricted by bones and cartilage and it may be that you can do something about the position you are lying in. It may be worth consulting a physio to see if they can identify any exercises that could help with improving posture and strength of muscles etc.It may also be worth thinking back to whether you experienced similar problems at any point before your diagnosis.

I've had problems with carpal and tarsal tunnel for years - both seemed to deteriorate when I first started on injections but when I thought back I'd experienced problems being worse in the past. I still get problems with numbness but correcting posture means they resolve and these days they resolve much quicker than they did when I was B12 deficient - seconds rather than minutes.

[Spanners_ in reply to Gambit62]

Thank you Gambit62 I have wondered if I was putting it down to the wrong thing. I do have osteoarthritis in my lower back which I manage with exercise. I'll have a chat with my doctor, when they aren't quite so busy.

[oryoki]

blood circulation problems in my toes was cleared up using breathing techniques developed and explained in the Oxygen Advantage program. This video explains how the technique works to prevent the worst of coronavirus infections but it also applies to general blood flow and oxygen utilization throughout the body. When I started doing hour long sessions of humming I got headaches because of the increased oxygen to my brain, after a couple of days that effect disappeared. Now I’m smarter and my toes are warm. youtube.com/watch?v=AiwrtgW...(Not working as expected?)

[Spanners_ in reply to oryoki]

Thank you oryoki Sounds interesting. I will have a look.

[Gen89]

Hi I have peripheral neuropathy with tingling hands, feet, face, arms, calves which are probably due to my low b12. It is always worse in the evening and when I go to bed. You can be negative for Intrinsic Factor antibodies and still have Pernicious Anaemia. My problem may be caused by the omeprazole I take as this can block B12 absorption. I have had my loading doses of B12 injections every other day for two weeks and will then be having three monthly injections and am waiting to see if the nerve damage which causes the tingling will improve. My GP considers the Nice guidelines which say to carry on with injections until symptoms improve to only apply to really serious neurological problems eg if was affecting my walking. Have you had loading doses of B12 and are you going to be then having injections every three months which is standard for B12 deficiency due to absorption problems? Hope things improve for you soon.

[Spanners_]

Thank you Gen89 I have started having the injections every three months. But I'm not sure it has made a difference to the tingling. In fact the tingling around the lips has started since then 🤷‍♀️. I too take omeprazole (for acid reflux) but I try to take it sparingly. So I'm not sure if it has anything to do with low b12 levels or not. But from what I'm learning, it can sometimes be difficult to work out what is happening and why, when it comes to low b12.

[Gen89]

I was negative for Intrinsic Factor antibodies but a close family member has PA which makes it more likely that I will as well. At some point I am going to try stopping my omeprazole to see if it makes a difference. Usually GPs don’t do B12 level blood tests once you are on regular three monthly injections but it might be worth asking to have one just before you are due your next booster to see if your levels have dropped. The problem with treatment of B12deficiency is that there is so much unknown about the condition. It’s not really known what the normal serum B12 level should be and what counts as borderline deficiency and also how much of that B12 in the blood is actually active and can be used by the cells. There are also many other problems that can cause tingling so if mine doesn’t improve I am going to ask for a referral to a neurologist. Unfortunately, my Gp said it can take up to a year for a NHS referral and of course Covid may delay appointments even further.