Aching legs, burning, feet and pins and needles..

Sounds a bit like gout, you should get in contact with your gp.

I might have missed this, but have you had blood tests at your GP surgery to check your levels of vitamins and minerals and other anomalies?

Bamm

Shinamae it seems vitamins B1, B6 and B12 are important for neuropathy ( too much or too little B6 is bad and can even cause symptoms of neuropathy). I think Thiamine is good but Allithiamine is a more available form for absorption or something. If you look for it on Amazon you will find it. ( If you don't mind using Amazon). I have tried the all the supplements recommended for neuropathy and now take D3 in winter, B12 and B1( Allithiamine) with occasional courses of R-Alpha lipoic acid.
Did lots of research a few years ago when mine was really bad. As somebody else has said on here I think it's very important to keep blood sugar balanced and also avoid artificial sweetners.

I have looked twice now on Amazon, and although there are plenty of thiamine supplements, I cannot find the one you suggest 🤷‍♀️

These are two of the supplements. I have been taking for a couple of years now…

I did take glucosamine for a few months, but found it had no effect at all so stopped it..

Callistemon21

I might have missed this, but have you had blood tests at your GP surgery to check your levels of vitamins and minerals and other anomalies?

The last blood test I had was a couple of months ago and everything came back” normal”
I do take a multivitamin as well as the supplements mentioned above

Shinamae

Callistemon21

I might have missed this, but have you had blood tests at your GP surgery to check your levels of vitamins and minerals and other anomalies?

The last blood test I had was a couple of months ago and everything came back” normal”
I do take a multivitamin as well as the supplements mentioned above

But was it just a blood count or did they do more extensive, wide-ranging tests?

Could you have an imbalance of vitamins and minerals if you are taking certain supplements?

Shinamae I have now re-read your original post and see that you said the doctor had ruled out peripheral neuropathy. The fact that it gets worse when you go to bed sounds very familiar.
I wonder if you could need a scan, trapped nerve ?
If you put ' Allithiamine for neuropathy ' into Google you should see it.
I hope the doctors come up with something to help. I am lying in bed right now with burning, tingling, numb feet.

Callistemon21

Shinamae

Callistemon21

I might have missed this, but have you had blood tests at your GP surgery to check your levels of vitamins and minerals and other anomalies?

The last blood test I had was a couple of months ago and everything came back” normal”
I do take a multivitamin as well as the supplements mentioned above

But was it just a blood count or did they do more extensive, wide-ranging tests?

Could you have an imbalance of vitamins and minerals if you are taking certain supplements?

I think it was just a normal blood count..
Do you think I should ask for something more specific?

Bamm

Shinamae I have now re-read your original post and see that you said the doctor had ruled out peripheral neuropathy. The fact that it gets worse when you go to bed sounds very familiar.
I wonder if you could need a scan, trapped nerve ?
If you put ' Allithiamine for neuropathy ' into Google you should see it.
I hope the doctors come up with something to help. I am lying in bed right now with burning, tingling, numb feet.

Finally found it, but we out of my price range of afraid but thank you..

As usual my hand is so very painful now I’ve woken up. All I can do is keep it still at the moment. I’m typing with my left hand.
Monica thank you for your suggestion, but I had tests for carpal tunnel in March and they were negative.

My symptoms are always worse when I wake up pins and needles all over, especially bad in the hands and pain in the ankles and hips,symptoms do decrease as I move around.
I see the doctor on the first not my regular doctor, but someone different who might be able to give different suggestions. I will keep you informed…

I'm wondering about long Covid .
It seems to be such an insidious illness affecting people in completely different ways .
A close friend had it at the height of the epidemic .
And how she's changed since then .
I used to really enjoy her company .
Now she makes me feel depressed and has reduced me to tears .

Shinamae

Callistemon21

Shinamae

Callistemon21

I might have missed this, but have you had blood tests at your GP surgery to check your levels of vitamins and minerals and other anomalies?

The last blood test I had was a couple of months ago and everything came back” normal”
I do take a multivitamin as well as the supplements mentioned above

But was it just a blood count or did they do more extensive, wide-ranging tests?

Could you have an imbalance of vitamins and minerals if you are taking certain supplements?

I think it was just a normal blood count..
Do you think I should ask for something more specific?

As Whiff suggested:

When you see your GP ask for a complete blood test and include a fasting cholesterol test
They can check for a lack of some vitamins, inflammatory markers and many other deficiencies and conditions.

Or it could be a trapped nerve in your neck, as someone else suggested.

Callistemon21

Shinamae

Callistemon21

Shinamae

Callistemon21

I might have missed this, but have you had blood tests at your GP surgery to check your levels of vitamins and minerals and other anomalies?

The last blood test I had was a couple of months ago and everything came back” normal”
I do take a multivitamin as well as the supplements mentioned above

But was it just a blood count or did they do more extensive, wide-ranging tests?

Could you have an imbalance of vitamins and minerals if you are taking certain supplements?

I think it was just a normal blood count..
Do you think I should ask for something more specific?

As Whiff suggested:

When you see your GP ask for a complete blood test and include a fasting cholesterol test
They can check for a lack of some vitamins, inflammatory markers and many other deficiencies and conditions.

Or it could be a trapped nerve in your neck, as someone else suggested.

Will do 🤓

👍
Hope they find out.

I have similar symptoms and chronic pain which have been traced to disc and facet joint issues throughout my spine, most concern is about lumbar spine and neck. I’m always to be wary of the symptoms of Cauda equina as mentioned previously in the thread. A procedure called rhizolysis has helped pain from the lower back, nothing to be done about the neck. Pins and needles continue, they are caused by nerve impingement. It needed several MRI scans over two years to effect an accurate diagnosis. I was told only MRI will shows detail of nerves. I know not always easy to get. Think I was very fortunate as I do now understand the ‘why’ of it and some pain has lessened.

Poor you, I know how it feels!

I was tested many years ago as I had the symptoms of MS (tested 3 times since the age of 19, am now 61.

I have all of those things, I am diabetic now (since surgery number 16 I think it was) am not very mobile at all and I literally hurt all over, have burning pains in my feet (my middle toes will also cramp up if I try and exercise my legs/feet, which is very weird!). I get numbness in my hands just holding a knife and fork. Now the skin on my legs has become discoloured, due to the lack of blood flow, but my pulses in my feet are fine! The skin on my legs feels sore, and because I started to have restless legs on top of this and couldn't sleep, I have my carers rub my legs with cream - God it hurts! Which is worse though - it's the not sleeping! To aid with the cramp and restless legs I get I now take a high dose of magnesium, and touch wood, that is helping!

Did they look at Small Fibre Neuropathy? I reckon it may be that - medications like Pregabalin, Gabapentin do help.

*The nerve-conduction test is only sensitive to damage in the large fibre nerves. and does not detect abnormalities in the smallest-calibre nerves.

Small fibre neuropathy typically causes a painful and burning sensation, often in the feet, but also in other parts of the body including the arms, face and trunk.

The pain is usually constant but can vary throughout the day and it can be worse during rest or at night. The patients are sensitive to touch and may get pain from bed sheets touching their feet.

Patients may also report transient electric shock-like pain lasting for seconds but many times during the day. Cramps can also occur.

Patients also report: light-headedness, postural hypotension, presyncope, syncope (fainting), abnormal sweating,
gastrointestinal and sexual dysfunction.

Patients with small fibre neuropathy may be misdiagnosed as having a plantar fasciitis, fibromyalgia or psychosomatic syndrome.

Another thing it could be is a problem in your lower back? Because I have been effectively 8 months pregnant now for 15 years, my spine is degenerating, so that too is having an effect on it all.

On top of all that I also have a nasty little disease called Sjogrens Syndrome. is a long-term autoimmune disease that affects the body's moisture-producing glands (lacrimal and salivary), and often seriously affects other organ systems, such as the lungs, kidneys, and nervous system. It causes inflammation which leads to damage of the peripheral nerves.

I've no hope really - but I think that you should mention the Small Fibre Neuropathy and ask if that was tested for, which I doubt it was.

Best of luck and keep us posted!

PS your blood tests need to also include B12, and thyroid which could also have an effect

I am amazed at how many of you are suffering with the same symptoms I have. I finished chemotherapy for Non Hodgkins lymphoma 18 months ago and have had an all over strong tingling... more like an electrical current sine the beginning of chemo. The haematology consultant in chargenof my chemo and subsequent maintenance treatment of immunotherapy and the neurologist she sent me to seem to have never met this problem before. Which I really cant believe.
Because it was affecting my balance, U have now stopped the maintenance trearment of Rituxumab a year early. And after 16 weeks it is a little improved. I take high dose vitsmin D and a compound of vitamin B. I dont take pain killers apart from paracetamol, but was offered amitryptiline which made me feel too zombiefied to continue.
In a way it is a comfort to hear it is not unusual. I am reading this theead with interest.

These are the symptoms I had while on chemotherapy, took a long time before my feet were comfortable.
DS has long covid and suffers from pins and needles and shooting pains in legs, he was hospitalised with cardiac symptoms too.

harrigran

These are the symptoms I had while on chemotherapy, took a long time before my feet were comfortable.
DS has long covid and suffers from pins and needles and shooting pains in legs, he was hospitalised with cardiac symptoms too.

I really don’t know how to identify long Covid, but I had Covid twice with no symptoms I would not of known I had it had I not tested so now I’m wondering if it is long Covid or would that just be something the doctor could fob me off with?I mean it’s quite easy isn’t it to say well that’s long Covid that’s an end of it, but I will see on the first when I have my appointment 😬

Shinamae

harrigran

These are the symptoms I had while on chemotherapy, took a long time before my feet were comfortable.
DS has long covid and suffers from pins and needles and shooting pains in legs, he was hospitalised with cardiac symptoms too.

I really don’t know how to identify long Covid, but I had Covid twice with no symptoms I would not of known I had it had I not tested so now I’m wondering if it is long Covid or would that just be something the doctor could fob me off with?I mean it’s quite easy isn’t it to say well that’s long Covid that’s an end of it, but I will see on the first when I have my appointment 😬

Exactly, don't let them fob you off with that, but please do mention the Small Fibre Neuropathy, as they likely wouldn't have tested that whilst doing your nerve conduction tests ....

On the other side. I was in excellent health until I had COVID, mildly, although for a long time, when I was still recovering from a bacterial infection. Since then my blood pressure has shot up, I have jad 2 TIAs and have now been told I have hgih blood sugar, plus, of course the neuropathy. I had what I assumed was just feeling run down for three or four months after COVID.

M0nica

On the other side. I was in excellent health until I had COVID, mildly, although for a long time, when I was still recovering from a bacterial infection. Since then my blood pressure has shot up, I have jad 2 TIAs and have now been told I have hgih blood sugar, plus, of course the neuropathy. I had what I assumed was just feeling run down for three or four months after COVID.

Goodness MOnica. They are, I like to think, working behind the scenes on this. I hope they can give you something positive ASAP.