Numbness: Does anyone suffer with... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,451 members66,497 posts

Numbness

Cat-222 profile image
11 Replies

Does anyone suffer with numbness on the skin. I do on my little toe, just below the knee on my left leg, around my tummy and right side where my ribs are and it’s spreading.

It’s really scary, I have been referred to a Neurologist but goodness knows how long that will take.

Many thanks

Written by
Cat-222 profile image
Cat-222
To view profiles and participate in discussions please or .
11 Replies
B4w131 profile image
B4w131

Hi l have numbness in my big toes but also my feet are are very painful

Christ1ne10.

Hi, I have numbness in my toes and my left hand on the outside of this hand, I saw my Dr about this and was sent to the hospital for a scan everything came back clear. This was before the world went Crazy. Since then my Dr. hasn't done anything, I have Bells Palsy ( the right side of my face is paralysed), but my Dr. insists that there are no side effects from the Bells Palsy, not even the immense pain I have in my head. 🤞you get yours Diagnosed sooner rather than later.

Good Luck!

in reply to

Bells Palsy and B12 deficiency... Google

Cat-222 profile image
Cat-222 in reply to

my B12 is optimal so can’t be that

bookish profile image
bookish in reply to Cat-222

I'm afraid there is no such thing - it is possible to have a cellular/functional B12 deficiency at any serum level/active serum level, as there are many other stages at which metabolism of B12 may fail. Not saying it is definitely your problem, but it is definitely not ruled out. Previous post says you had been having B12 injections so there presumably was a problem, even if dietary and resolved, or similar. My numbness started slowly and spread, so ended up with two neuros, nerve conduction studies and thermal threshold testing for small fibre neuropathy. Hope you can get to the bottom of it - so many possible causes.

Cat-222 profile image
Cat-222 in reply to bookish

Thank you for your advice. I previously had private B12 injections because it was on the low side. I recently had a blood test and it was at the top of the range therefore doctors don’t want to know. Please could you tell me what 2 neuros are and did they sort out your numbness and found a reason for it. I have bad acid reflux, not sure if it is connected just waiting to have a camera down. It’s worse since being on the medication but I tried coming off and it was still bad.

bookish profile image
bookish in reply to Cat-222

Hi. Unless there was a gap of many months between your injections and the blood test, it would be high in range. Unfortunately, B12 deficiency is not easy to pin down and many people that you would expect to understand it, actually don't. How low was low and did your doctors do any additional testing then? Once having injections or high oral supplementation you are not supposed to be retested, as having 'treated' high serum doesn't mean that you are getting enough to fix a problem, especially if they haven't found where the problem is. (For example, if you were vegan/vegetarian/low animal product intake for some other reason, you may be low just due to diet, so supplementing to improve levels and changing back to meat-eating should fix the problem, or if you had just had nitrous oxide (gas and air), a few injections should get you back up and then diet would be enough. That is not the case for functional/metabolism/absorption/stomach surgery/Pernicious Anaemia type causes.) By 2 neuros, I meant I see two different neurologists, sorry! Numbness and other neurological symptoms have changed during this very long process, some better, some worse, and in fact am seeing a new team this afternoon. With neuro symptoms injections are supposed to be every other day until you stop improving, because the B12 is only active for approx 24-48 hours, but stays in the blood as 'inactive' for about 4 months.

As far as the reflux is concerned, you may well have low acid rather than the seeming high acid which they are treating you for. Symptoms are very similar and low is more common (but no treatment given as a rule). If your parietal cells are not working well (various reasons including just ageing, but also things like Coeliac, thyroiditis, and especially in Pernicious Anaemia, the latter three generally showing antibodies to gastric parietal cells) then the two main functions will be affected to an increasing extent - (1) insufficient production of stomach acid (so you can't break down food properly or difficult things like iron, calcium, and end up with nutrient deficiencies as well as your food fermenting in your gut in a most uncomfortable fashion) and (2) reduced intrinsic factor, which means you will be progressively less able to absorb B12. Unfortunately PPIs like omeprazole, lansoprazole etc work by reducing your stomach acid, so unless you actually have need for that (ulcer, hernia, barrett's oesophagus etc, which camera should tell you) they could be making the problem worse. As I said, depends on the problem! I found gluten free and dairy free plus lowish FODMAP dealt with my reflux and I use lemon or lime juice or apple cider vinegar with meals to raise acidity. Once you've had your camera done you'll have a better idea what is going on with you and what might help/hinder. Best wishes

Cat-222 profile image
Cat-222 in reply to bookish

Thank you so much for the information. I really appreciate it. Sorry this is all new to me so still learning. I hope you get the help you need and see an improvement.

I just want to get better as it is effecting my work and life, it makes you feel so unwell. I also have hypothyroidism so that probably contributes to my symptoms. Fingers crossed I get an appointment soon.

Ronzanijane profile image
Ronzanijane

hi cat 222 l have got in my left leg but nothing happened yet I'm sorry to say that but everything take too long to investigate , keep positive

Patdoyle profile image
Patdoyle

I have numbness on sole of my left foot. My feet are very painful and burn sometimes

bigpigs77 profile image
bigpigs77

I have numb feeling all over my body which is getting worse i have been to the doctors but I still don't know what the problem is and the doctors don't know.I have problems with my testicle and scrotum on left-hand side of my body i have dipstick tests no infection but had traces of blood I had CT scan nothing was found they thought it might be kidney stones or my bladder .I have been put on antibiotics for the pain in my testicle he said could be inflammation in my testicle.i am on my second week of antibiotics but it has not sorted the problem out.so i will contact them again.i was told i would be referred to urologist I have been wanting to get this sorted out.if the pain gets to bad i go to hospital . I just filled my pip review so that's been stressing me out as well .i hope you can get your numb feeling sorted out.

You may also like...

Numbness

Hi all, has anyone ever had numbness in their face and arm? I woke up with it this morning. My...

Numbness and tingling,is it normal for FM?

past 2 weeks every morning when I wake up my left hand is numb with tingling feelings,it is getting...

Teeth, jaw and facial numbness

one side of face pulling down seems to be left alot more then right and bottom jaw pushes to right...

Pain and numbness in arms

episode yesterday when both arms became numb and then really painful, I couldn’t speak or move and...

Dead/numbness tingling legs

Does anyone suffer with limbs mainly legs feeling very dead An numb. Last year I suffered very bad...