I have B12 def with peripheral neuropathy currently struggling with immense fatigue and about to start supplementing NHS 3 monthly injections with my own.
My question is has anyone got swollen feet along with this. I havent read that it's associated with B12 def.
Hi, I get really bad swelling. This hasn’t changed with b12 injections. I self inject every week now. You may have foot and/or ankle issues that you’re not yet aware of. I recently got compression socks off the gp and these keep the swelling down. They are very hot to wear but very efficient. Other things that can help it go down are raising your feet. You can raise the bottom of your bed by putting a brick under the bed feet. You can lay with your back on the floor and your lower legs on a chair, always make sure you feel comfy in such positions. Frozen water bottles rolling under feet can be soothing. It’s worth discussing with your doc as maybe your veins aren’t returning everything as efficiently as they could. Maybe you have strained tendons or ankles not in best position. Footwear and orthotics can help if this is the case. Do you find it relates to the heat / being on your feet a long while/ not moving about so much / walking or running? You need to find out what the cause is to know how best to treat it. Good luck 😊
Technically it's not a symptom of B12d but because there's a chance your heart isn't running as well as it could be, because of the B12 deficiency, it might be an indirect result of it.
I think it would be good to get a thorough blood test to check iron, folate vitamin D and potassium and magnesium if you can get them to do them.
If they all come back OK then it's worth trying to get your heart function checked and maybe have an ECG done to make sure all's OK.
From the findings they might be able to prescribe "water tablets" to help your body get rid of the excess fluid.
It used to be a problem for me but with enough B12 and supporting supplements alongside plenty of exercise to keep myself fit and with lots of sleep for recovery, it's fine now and I don't need any additional pills for it. If I mess anything up then it does happen again but good management soon fixes it again.
It could be poor blood flow because of the peripheral neuropathy, but as you say that you are hugely fatigued, I suspect you may be moving less and it could be poor lymphatic flow. If I don't move around enough I get similar issues. Try gentle but regular movement so you are squeezing the muscles all over, try some dry brushing, bounce if you can! Drink more water and go easy on the salt, and see how you feel. Best wishes
Thank you all for your replies, all very useful. It seems it's not a common problem. Perhaps once I get my bounce back and can exercise I'll reduce the swelling. I've just bought a boxia foot drop device which really helps with getting heel strike when walking. It's nice not to look so disabled.
I don't think the neuropathy associated with a B12 deficiency affects blood flow.
You may be thinking of diabetic neuropathy, where the poor blood flow results in nerves starving to death,
The nurses that do my diabetic foot check are always amazed when I have a really strong blood flow but cannot feel a thing below the ankle. Every time I have to explain that my neuropathy isn't diabetic.
That's really interesting, thank you - and confusing.
I have had peripheral neuropathy for 20 years, no cause known (although damage to small nerves was suggested at the time, it wasn't then able to be seen/diagnosed.)
Recently, while having checks for possible antiphospholipid syndrome (APS) and Sjogren's, a neurologist diagnosed me with small fibre (poly)neuropathy - increasingly painful and numb. What I have read so far seems to indicate that small fibre is commonly diabetic but can be autoimmune, like Sjogren's, or medication/chemo/toxic, or B12D/folate or B6 D or excess, copper deficiency etc etc. And the small fibre specialists seem to say that the blood flow is affected, hence connections with POTS.
Something to do with denervation of the arteriovenous shunts permitting blood to bypass the capillary beds, leaving the skin engorged with blood, while the deep tissues starve for oxygen and nutrients.
I have noticed some improvement personally since I started (natural) vit E as a blood thinner (for the APS), but maybe that was because my blood was too thick in the first place. Overlapping issues confusing the overall picture.
Food for thought. Thanks again.
Hi,
With peripheral neuropathy, UK guidelines suggest you should be on more concentrated treatment. See links below and look at treatment pattern for those with neuro symptoms.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed a year or two ago.
pernicious-anaemia-society....
Do you have other neuro symptoms?
There is a risk of permanent neurological damage if under treated for B12 deficiency with neuro symptoms.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society....
Link about writing to GP if under treated for B12 deficiency with neuro symptoms.
b12deficiency.info/b12-writ...
Have you been tested for PA?
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
Haven't got time to write more so suggest you look at my replies in the thread I linked to below which have links to B12 deficiency symptoms lists, causes of B12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which might have something useful.
healthunlocked.com/pasoc/po...
The pandemic is impacting patients' B12 treatment in UK.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.
healthunlocked.com/pasoc/po.....
I am not medically trained.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
