Leg pain

[Jcilom]

I've had pernicious anemia for a long time and all has been going fairly well. For the past week I've been having bone pain in both legs and one arm at night I take 1ml B12 every two months. Because of the pain, should I take 2ml every two months or 1 ml every month?

[wedgewood]

I think you mean mg not ml ( mg represents the strength /weight —ml represents the amount of saline in which the B12 is contained. Some 1mg ampoules are in 1 ml of saline ( Panpharma )Some are in 2ml ( Hevert) . Pascoe is 1.5 mg in 1 ml ! Just to confuse matters ! All Hydroxocobalamin

I would try I mg a month, and if that didn’t help try more regularly . You know that you cannot overdose on b12 . How is your vitamin D reading ? Something worth looking at . Best wishes .

[deniseinmilden]

Bone pain is more associated with vitamin D, calcium and magnesium deficiencies.

It would be good to get a blood test to check these levels too - and ask for a Dexa bone-density scan if you can.

I'm not saying don't have more B12 - that may well help too - but if it's been OK for some time, it would be good to rule out new problems.

[Cherylclaire Forum Support]

Both replies very sensible in suggesting this could be vitamin D or something else.

I do get pain in joints at night - mainly shoulders and knees. Have to sleep like a crash test dummy landing - no limbs touching as resting weight seems to accumulate like lead-heavy bones. Stiff feet in the morning first thing. Also some swelling below knees during the day, stiff clicking hip pain. But all these complaints come and go and have done over the last 8 years. Never worked out any triggers and no real cause found by scanning.

I agree with the responses so far. If anything new and not re-emergence of old symptoms, then get elimination tests to ensure no new stuff going on which might be easily treated.

Wishing you well.

[BleekerStreet in reply to Cherylclaire]

Can't advise, but I get bad leg pains, and pins and needles in my arms and hands. The former most of the time, the latter occasionally. Seems like a fairly normal condition with PA.

[Cherylclaire Forum Support in reply to BleekerStreet]

Yes - a lot now accepted by us years on as individuals, as being "not-the-worst" symptoms and just tolerated.

I once, during lockdown, on a very hot day while making a couple of raised vegetable beds outdoors, got foot-flop - strangely, a good few years after injections started. Can only think I was completely overdoing it at the time.

Felt very strange to keep tripping up by misjudgement of floppy feet - especially tripping over back doorstep as I've lived in the same place for 40 years. Noticed, when cleaning up after, that I had cut my leg but not felt a thing. It took many months to heal and looked like a small bullethole - reminded me of my poor mum's ulcerated legs. Can't say it hurt at all.

Luckily for me, that was that and I didn't have to continue high-stepping to take floppy feet into account again. Ever.

I remember reading a novel in which foot-flop was mentioned - in connection with late-stage alcoholism - so a B12 deficiency connection I'm sure.

[Jillymo]

I also get the bone pain ! It is mostly in my shins just below my knee's and keeps me awake at night. I take vit D for another health condition so I shouldn't be low on that. Do you get pains in your arms ? I get a sharp bone pain if I put my weight on them - ie such as when I lean on my window sill to look out.

I started to injected more regularly and introduced B1 into my regimen which seems to have helped ! It is all trial and error and unfortunately we are all different with our needs. I hope you find some relief because I can sympathise how painful it is.

Your bone pain could be linked to your leukaemia. 💐

[Miss-guineapig in reply to Jillymo]

I’m obviously not a scientist but I have noticed when I take Vit D (not every day) that I get pain in my legs during the night. I think it’s muscular rather than bone, but I don’t know for sure. It’s a manageable nuisance though. More importantly, I know if I don’t go for a decent walk during the day , and sit too long, I get the same type of pain. So keep moving every single day folks . Wishing you all well xx

[Jillymo in reply to Miss-guineapig]

Mine is definetly bone pain albeit I do get pain in my muscles from fibromyalgia. My walking days are over but I do have exercisers I use indoors. It seems the more I try to exercise the more lathargic I feel.

You try and keep well too. 😘

[Miss-guineapig]

aww Jilly , my friend has Fibromyalgia, it’s just an awful thing. Like you, she manages what everyday brings, and days are so different, big hugs xx