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

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…

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.

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..

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?

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.

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?

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

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

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

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 🤷‍♀️

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?

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

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.

Whiff

Shinamae cheese causes a built up of lactic acid in your joints and causes pain and pins and needles. My mother in law had gout and no she didn't drink port😂. But she had to stop eating cheese as it made her gout worse. Plus she had to stop eating butter ,cream and full fat milk.

Many years ago I had really painful gout which I traced to (delicious) whole wheat bread.
It definitely wasn't from alcohol as I wasn't drinking any at all.

I have 'general' neuropathy (I have no idea where it goes after arms and legs and not asking at thus point). I believe it has improved in my legs and feet because, for other reasons, the pressure on my spine is less. As well as noticeable in my arms and legs, I have carpal tunnel in both hands.

I have to say I did find waking up with none functioning arms/hands was quite scary but I have learned to gently tell my brain it's getting the wrong messages and it does lessen and go enough to be ignored.

There are also exercises that help with balance (ask physio).

I don't think mine is as bad as some on here. Mild to moderate I would guess. But Consultants do treat the worst first. I get that, but we should be coming at it from both ends and enabling people to feel like agents of their own wellness. I live in hope that the powers that be can see the point in that.

Whiff

Shinamae if you need any help with tasty low fat meals I will help you. Food doesn't have to be boring just a bit of planning also you don't need to cook fresh meal everyday. Have a read of the pears thread. I used to have 5 different cheeses in my fridge and I live alone. In 2017 finally decided to tackle my morbid obesity. I was over 19st size 32. Lost 7st and just over 12st size 16. Last 2 years been trying to lose the last stone and bit. But I will get there one day.

It's hard giving up foods you like. I don't buy foods I have no control over.

I have been in constant pain in my legs from a young child and fall over a lot. Things got worse when I was 29 and the limb jerks started and the pain settled in my left arm and leg permanently. Get pain in my right leg most days and in my right arm about 4 days a week. Wasn't until last year I finally got diagnosed I was born with hereditary Hyperekplexia gene mutation SLC6A5 type 3 which is rare. Luckily my new neurologist started me on Clonazepam in March 2020 and after 32 years of uncontrollable limb jerks and 4 months of siezures within 2 weeks my limbs where still and have been ever since. My blood was sent off in January 2020 to have my whole genome tested. My neurologist only got the results March last year. I am now 65 but at least I know what's been wrong with me my whole life. HPX causes a whole load of problems but I am used to them. If the pain stopped tomorrow I would think I was dieing 🤣.

It's no fun being in pain all the time but our bodies are wonderful things and I know mine has adapted to accept it. And over the years met people worse off than me.

Hopefully you will get answers and treatment soon.

Goodness me you have been through the mill Whiff.l have read you on other threads and you are always very supportive and trying to help people which is very commendable. 💐

Shinamae if you need any help with tasty low fat meals I will help you. Food doesn't have to be boring just a bit of planning also you don't need to cook fresh meal everyday. Have a read of the pears thread. I used to have 5 different cheeses in my fridge and I live alone. In 2017 finally decided to tackle my morbid obesity. I was over 19st size 32. Lost 7st and just over 12st size 16. Last 2 years been trying to lose the last stone and bit. But I will get there one day.

It's hard giving up foods you like. I don't buy foods I have no control over.

I have been in constant pain in my legs from a young child and fall over a lot. Things got worse when I was 29 and the limb jerks started and the pain settled in my left arm and leg permanently. Get pain in my right leg most days and in my right arm about 4 days a week. Wasn't until last year I finally got diagnosed I was born with hereditary Hyperekplexia gene mutation SLC6A5 type 3 which is rare. Luckily my new neurologist started me on Clonazepam in March 2020 and after 32 years of uncontrollable limb jerks and 4 months of siezures within 2 weeks my limbs where still and have been ever since. My blood was sent off in January 2020 to have my whole genome tested. My neurologist only got the results March last year. I am now 65 but at least I know what's been wrong with me my whole life. HPX causes a whole load of problems but I am used to them. If the pain stopped tomorrow I would think I was dieing 🤣.

It's no fun being in pain all the time but our bodies are wonderful things and I know mine has adapted to accept it. And over the years met people worse off than me.

Hopefully you will get answers and treatment soon.

maddyone, shinamae Problems in your hands and wrists may be carpal tunnel syndrome, which is a branch of peropheral neuropathy.

I have had, and been operated ,for carpal tunnel problems on my right arm and when my problems started they presented as CTS in my left arm. Unfortunately I was so swiftly enrolled on a vascular resaerch project, no matter what I said about all the pain, initially only in my arms, the specialust just dismissed them, because she was determined to prove I had had a stroke.

In the end I booked to see an appropriate specialist myself, who obviously couldn't say I hadn't had a stroke, but could confirm that I did now have quite advanced CTS in my left arm and that the operation on my right arm could need redoing. So the main problem with my arms is CTS, but I burning and cramping feelings in my legs and feet.

I have been looking at the NHS site on preipheral neuropathy www.nhs.uk/conditions/peripheral-neuropathy/complications/ and it does seem to assume that if you have the pain you do also have reduced feeling in various parts of the body and muscle weakness and i have none of this. For the last month I have been clearing an overgrown area of the garden requiring me to trim trees and shrubs, with pruning saws and loppers, bending and stretching and climbing ladders, without being aware of any loss of strength.

Mouseybrown60:

'I have never had Covid' - well, neither have I (despite all other family members having it, often twice) but I'm quite prepared to believe that I did indeed have it - with no symptoms at all.

When I went for my second Covid jab, I was asked about side effects from the first one. I mentioned the hot, burning feet with pins and needles and was told a lot of people had that.

Shinamae

Bamm

Shinamae I once went on an Internet forum for people with neuropathy and a man who used to drink heavily recommended a form of vitamin B1 that helped him very much. It's ALLITHIAMINE by Ecological Formulas. ( Available on internet).

Thanks Bamm, I’ll have a look now. I know when I first went to AA and came off the drink they recommended we take brewers yeast tablets..

I can’t find the actual one, but this is what Google says about thiamine..
I know, I know, I shouldn’t believe everything Google says, but this is interesting..

Bamm

Shinamae I once went on an Internet forum for people with neuropathy and a man who used to drink heavily recommended a form of vitamin B1 that helped him very much. It's ALLITHIAMINE by Ecological Formulas. ( Available on internet).

Thanks Bamm, I’ll have a look now. I know when I first went to AA and came off the drink they recommended we take brewers yeast tablets..

Whiff

Shinamae I know you are following the slim fast diet. Have your syptoms gotten worse since you have been on it? If so it may be you are not getting a balanced diet the amount of nutrients your body needs. Plus there may be some artificial ingredients which are making your symptoms worse. Also from your photos of your dinners they are heavy on cheese. I know my friend who had severe osteoarthritis cheese made her pain and joints swell and hurt more. Plus she had pins and needles that made it difficult to walk at times.

My you need to cut out cheese and try dieting a different way . As you don't know if your body is reacting to the ingredients in the slim fast.

It's worth a try but your body at the moment is used to the diet you are following so you might not see any difference for a couple of weeks. But it's worth a go.

When you see your GP ask for a complete blood test and include a fasting cholesterol test .

Anything is worth trying as your syptoms are getting worse.

Whiff, I have just been to Tesco and bought some sliced chicken breast and also a tin of tuna chunks and a tin of pink salmon. None of which I’m going to find very palatable but I am going to give it a very good go..🤓
Just wondering if I can have red onion with fish?
I do have blood tests every six months and they always come back “normal” last one was about two months ago..

Shinamae I once went on an Internet forum for people with neuropathy and a man who used to drink heavily recommended a form of vitamin B1 that helped him very much. It's ALLITHIAMINE by Ecological Formulas. ( Available on internet).

oldeman

"You need Revitive" as Ian Botham says in his advert. I was sceptical about this having tried cheaper alternatives but I'm pleased to confirm this machine really does work. My legs and feet feel invigorated. Use for 30 minutes a day while sat reading a newspaper or magazine. I know the machine seems expensive but I bought a fully reconditioned one on eBay and its perfect.

I do have a vibration plate that I could use, but I haven’t had that out for months might just go and dust it off..🤔

maddyone

Candelle I’m so sorry to hear how ill you’ve been. I knew you weren’t well, but I had no idea.
Has anyone else got it in their hand? Mine started in my fingers, just two fingers, and is now in the hand and arm. I take painkillers every four hours otherwise the pain is very bad. There have been times when it’s felt unbearable. I don’t know why my GP doesn’t want to send me to a neurologist.

Pins and needles all over, as I’m sitting writing this,including the hands, it’s actually quite bad in the hands. At this moment. In time, feet are burning a bit and legs are aching a bit, but will get worse when I lay in bed..