possible causes for long term pins and needles?

[MyVisionsComeFromSoup]

I have pins and needles in my legs (particularly my feet, heels especially) and arms, mainly the outside of my hands. Have had lots of neuro investigations, which showed nothing in particular, other than "age related wear and tear" in my neck.

Two years later I'm seeing an orthopedic surgeon as I also have pain in my neck, upper back, shoulders and arms. He's looked at my most recent MRI and doesn't think the pins and needles are to do with any physical nerve compression. He's sorting a nerve root injection to hopefully help with the pain, but no the pins and needles.

So, assuming the ortho is right, what are some possible causes for the pins and needles, that I can get my GP to investigate?

Dr Google has suggested diabetes (have PCOS so that's a possibility), and B12 deficiency (had that tested couple of years ago, and it was at the lower end of normal, so again, that might be a possibility) - anything else anyone can throw into the mix? GP is very likely to want to do a full range of tests to make up for the fact that the previous GP was particularly unhelpful (told me she wasn't going to let me have neck surgery as she'd never known it to help anyone when all I had asked was what could be done about the pain, and just kept on adding new painkillers onto my prescription), so it would be useful to have a pre-prepared list of things to suggest, so I get them all at once.

Also, might it be being made worse with the combination of meds? I know that can sometimes happen - I'm taking pregabalin, naproxen (and omperazole), paracetamol and amitryiptyline rattling like a chemists shop

TIA

Are you supplementing vitamin D at all? If not definitely give that a bash as your levels are extremely low (deficient by most measures)

www.vitamindcouncil.org/about-vitamin-d/testing-for-vitamin-d/

NB you will need to convert your results by dividing by 2.5

I'd also supplement B12 as well as vitamin D. The Pernicious Aneamia Society say that you can have neurological symptoms anywhere under 500, which yours are.

I don't know anything about the liver protein I'm afraid

Are they treating you for the low ferritin? Mine was 22 and I self supplemented for just a month and am now waiting on my latest bloods to see what affect it had (along with a test for coeliac as well). Optimum is 70-80 I believe.

I'm taking Centrum Advance multi-vits - the B12 is 2.5 micrograms (100% NRV) and the Vit D is 5 micrograms (100% NRV) - I'll check with the GP before I add anything more I think, I'd like to have it all on record what changes I make.

It's very interesting the differences in recommended levels in different countries - the Vit D website earlier looks like a US one, and although lots of North America is at the same latitude as the UK, the levels are much lower in the UK. I think my current GP is fairly open minded, so I'll just have ot wait and see what he's happy to do/let me do.

It is an American site - the UK have not done very much research into vitamin D as far as I know.

Were you taking the multi vitamin before your test? If so, this will have skewed your B12 result. I've seen on a few different sites that multi vitamins are not generally recommended, as they contain the cheapest version of the ingredients and are the least effective. Also some ingredients counteract others. Iron shouldn't be taken with calcium for example, but should be taken with vitamin C. So you might want to check to see what is in it, to make sure it's working the best for you.

the Vit D website earlier looks like a US one, and although lots of North America is at the same latitude as the UK, the levels are much lower in the UK

Remember they are using a different measurement - you need to multiply the numbers in that table by 2.5 to be able to compare with your measurements!

yes, even doing that, the UK recommended levels are lower - I'm deficient according to the US, but just about within normal in the UK.

Normal isn't the same as optimal though. Different people have symptoms of deficiency at different levels of the range, so you may well be symptomatic because 'normal' in the range of a statistic, isn't normal for your body.

exactly - at least my current GP seemed open minded when i raised this with him. I've had ones previously who would have been "somewhat different" in their approach (to put it politely - I'm still in the midst of investigations for a potentially related thing, which the GP at the time said "I'm not referring you for surgery, I've never known it to work for anyone, take some more painkillers" when all I'd asked was what was actually wrong, and was there anything could be done. Two years down the line, i'm finally being taken seriously although they still can't work out what's wrong). Sigh, some doctors need to put themselves in their patient's shoes occasionally and think about how they come across.

high doses of vit. B6 can cause this, too (but presume you aren't on those)

That's good to hear . It's so frustrating sometimes when you just want answers and you're talking to someone who should want the same thing you do! It doesn't feel like it sometimes though. I described it as wanting to feel like a patient, not a customer who does t have a clue what s/he wants . I really hope you get well soon!

Convinced my GP to test for Coeliac , appointment to take blood is tomorrow, then a wait for results, then a wait for another appointment with him (currently looking at the end of October for that). He agreed that my vit d was surprisingly low for having been tested towards the end of the summer, but didn't offer/suggest supplements (most of the appt was taken up with another unrelated thing, so I did run out of time).

Pins and needles have got worse, they're now almost like stabbing in my left hand, and I've had a couple of very strange moments where it feels like the top of my finger is missing, not just numb, but not there at all. Very disconcerting!

Oh dear, that's not good Have you changed your supplements at all? The ones you were taking were very low to address deficiencies.

Hi did you ever get a breakthrough with this? I suffer from pins and needles too . bloods, mri all clear.

I've started to suffer from pins and needles about 5 years ago, this along side other symptoms, dizziness, tinnitus, lightheadness, breathlessness and more.

For a start, the standard B12 test is not always accurate as it tests the total amount of B12 in the blood, not what is being absorbed. Some disorders leading to low B12 is an issue of absorption of the vit B12 and only injections will resolve. You can ask to be tested for active B12.

My level of B12 came back exactly as yours. My GP insisted this was within the norm and I didn't need injection, this despite a very high mchc result, which indicates Macrocytic Anemia, which is often cause by B12 deficiency. I ended up deciding to inject myself as doing so is safe and after a number of loading dose, I now inject about once a month.

The thing is, I am still not totally sure whether my issues were caused by B12 deficiency or whether they were the symptoms of the menopause as I've been through it for the last 5 years and these are also symptoms of it, which I believe are caused by the anxiety that is a very common symptom of it.

Hiya. Did you ever get this resolved. Im experiencing the same. Please update. Thanks

Hi @MyVisionsComeFromSoup did you ever get to the bottom of this?

Had forgotten all about this cry for help! Still here with pins and needles, but having been diagnosed with fibromyalgia, it's all being put down to that. But, I'm going to go back through everyone's suggestions here, and get my levels of things checked again (privately with someone like Thrivia, as I'm not going to get anywhere with a gp at present).
Basically I've just got used to it, and can mostly ignore it. But I'm also now taking a biggish dose of vit d, so that may be helping. Also now have much less stress in my life (since I first posted I've sold a house that was really getting me down, left H and moved three hours away, and all DC are now off my hands (as much as a uni aged DC ever is 😁), so I would say that stress won't have been helping.

Thanks for getting back to me. I'm having similar symptoms with tingling in my arms and legs. Gp thinks it's anxiety but I'm not so sure. I'm so worried I have something scary like ms which obviously is making me feel anxious so it's a vicious cycle. How did you get diagnosed with fibromyalgia? Was that for other symptoms?

Sorry meant to tag you @MyVisionsComeFromSoup