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

(88 Posts)
Shinamae Mon 24-Jul-23 21:19:22

I have had this for about six months now and it’s getting worse. Always worse when I’m in bed, but now I get the pins and needles all over not just in my legs and it’s constant.
I have been tested for peripheral neuropathy and apparently it’s not that.
In the past couple of years, I have had Covid twice but with no symptoms so I’m wondering if this could be long Covid?
I stopped taking my low dose statin a couple of months ago
on my doctors advice.. Also, I do take a good quality supplement of magnesium and also vitamin D.
I am seeing another Doctor in a couple of weeks for a second opinion, but I just wonder if any of you have experienced these symptoms…. I am 70

Mouseybrown60 Tue 25-Jul-23 17:47:25

I have had neuropathy for about a year now. The tingling, burning sensations go from the base of my feet up to my knees. I had the Doppler test, I am not diabetic, my vitamin b12, c and d are all fine. I tried 3 different drugs to no effect; in fact they made me feel quite nauseous. My sense of balance is getting worse. I have never had covid.
I am nearly 70 and it just seems that I will have to learn to live with it.
I was told that it could be a side effect of having had chemotherapy more than 10 years ago.

Esmay Tue 25-Jul-23 17:47:32

So sorry - Shinamae when you've done so well with your diet .

My first thought is a severe B vitamin deficiency requiring injections .
A member of my family has very odd symptoms without them and I have three friends , who have strange burning sensations and shooting pains as you describe .
Wishing you well .

Candelle Tue 25-Jul-23 18:23:28

I really do not wish to worry you but I had 'fizzy feet' for about six months before I decided to visit my GP (I thought such a vague symptom would not be anything to worry about. I had read of neuropathy in Dr Google's online surgery and rather assumed that was my problem).

The following is what happened to me and it probably is not the cause of your problems but I relate it in case you see any similarities and decide to have a further chat with your GP.

The GP asked a senior GP into the consulting room followed by an immediate visit to the Neurologists who had me MRi'd in no time. I was then an in-patient for three or four days (whilst I had Covid, so was 'caged up'!) and had tests. It was found that my spine is narrowing and 'disintegrating' and in doing so is pressing on my spinal cord: the place it is making contact giving the 'fizzy/tingling sensations to feet and hands. In certain circumstances, this could lead to paralysis.

I was read the riot act regarding what I can and can't do (can't travel abroad and have to be within an hour of a hospital with neurological services if in the UK. This is until a further decision can be made about me - the appointment of which has been delayed now to December - which I view as a good thing, as I can't be that ill!) but have not deteriorated and in fact some symptoms are slightly improved. Oh, the condition is 'Cauda Equina'.

If you think this may sound like you, do be checked out, it's a faff but worth doing.

I wish you well.

M0nica Tue 25-Jul-23 18:28:22

Another one who has developed exactly the same symptoms, but without any numbness or loss of muscle strength. It is very odd the sensation going to my brain is that several toes have gone numb, but if I immediately wiggle them I can feel them perfectly.

I have recently spoken to my doctor and I am awaiting the result of a blood test.

I had, what was diagnosed as a TIA, but a very odd one, just after Christmas. It began with shooting pains up my left arm, thn a pulse throbbed in my lip, then the symptoms went more mildly down my right arm. I had no loss of muscle tone and deliberately walked round the house and did washing up while it was all taking place. I had no unwellness or brain fog, but I was left with what felt like extreme carpal tunnel pain in my left arm for about three months afterwards, as that seemed to clear. all the symptoms we are all describing started.

I am beginning to wonder whether my problems could be connected with COVID. Last summer I was unwell for several months with what was diagnosed as a severe bacterial infection, and was still under the weather, when DH, DD and I all returned from holiday in mid September, feeling unwell, and when tested we had COVID.

DH &DD had it for a few days. I had it for over 2 weeks, although very mildly, and, while it would be exagerating to say I had long COVID, I was feeling very lack lustre and lacking in energy until Christmas, and beyond, when I had this supposed TIA.

I am beginning to wonder whether all my problems this year are associated with COVID.

Shinamae Tue 25-Jul-23 18:37:01

Esmay

So sorry - Shinamae when you've done so well with your diet .

My first thought is a severe B vitamin deficiency requiring injections .
A member of my family has very odd symptoms without them and I have three friends , who have strange burning sensations and shooting pains as you describe .
Wishing you well .

Hi Esmay a few weeks ago, I had a series of seven vitamin B injections cost me a fortune and unfortunately has made no difference at all, but I thought it was worth a try. 🤷‍♀️🤦‍♀️ (£25 a time)

Shinamae Tue 25-Jul-23 18:38:30

Candelle

I really do not wish to worry you but I had 'fizzy feet' for about six months before I decided to visit my GP (I thought such a vague symptom would not be anything to worry about. I had read of neuropathy in Dr Google's online surgery and rather assumed that was my problem).

The following is what happened to me and it probably is not the cause of your problems but I relate it in case you see any similarities and decide to have a further chat with your GP.

The GP asked a senior GP into the consulting room followed by an immediate visit to the Neurologists who had me MRi'd in no time. I was then an in-patient for three or four days (whilst I had Covid, so was 'caged up'!) and had tests. It was found that my spine is narrowing and 'disintegrating' and in doing so is pressing on my spinal cord: the place it is making contact giving the 'fizzy/tingling sensations to feet and hands. In certain circumstances, this could lead to paralysis.

I was read the riot act regarding what I can and can't do (can't travel abroad and have to be within an hour of a hospital with neurological services if in the UK. This is until a further decision can be made about me - the appointment of which has been delayed now to December - which I view as a good thing, as I can't be that ill!) but have not deteriorated and in fact some symptoms are slightly improved. Oh, the condition is 'Cauda Equina'.

If you think this may sound like you, do be checked out, it's a faff but worth doing.

I wish you well.

Thank you I will mention it when I go for a second opinion in about a week I think it is…

Willow73 Tue 25-Jul-23 19:04:31

I too am suffering with muscle pains in my legs worse in evening and night time. It’s mainly the front of my thighs but can be all down left leg and groin area. Seen doctor had X-ray and full blood tests nothing shown up. I had covid bad at Christmas so don’t know if there is a connection. I’m an active person, walking daily for an hour, swim twice weekly non stop for an hour, gardening, housework and volunteer work in a cat home. Hate to say it but I’m glad I’m not the only one but feel for you all.x

oldeman Tue 25-Jul-23 19:13:04

"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.

midgey Tue 25-Jul-23 19:31:57

Might be worth trying Reflexology. I have found that sometimes it is really helpful, even if it doesn’t help a nice relaxing foot massage is very restful!

maddyone Tue 25-Jul-23 19:55:16

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.

maddyone Tue 25-Jul-23 19:57:21

Shinamae you say your pain is constant. Which painkillers do you use for it?

Shinamae Tue 25-Jul-23 19:59:31

maddyone

Shinamae you say your pain is constant. Which painkillers do you use for it?

The pain is not that bad it’s more uncomfortable and irritating, especially the pins and needles.
The burning feet is no picnic either, but like I say the pain is bearable, unlike some people on this thread to sound as though they’re in excruciating pain
I have taken two paracetamol and two ibuprofen, but they seem to make little difference..

Shinamae Tue 25-Jul-23 20:02:03

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..

Shinamae Tue 25-Jul-23 20:03:17

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..🤔

Bamm Tue 25-Jul-23 20:29:29

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).

Shinamae Tue 25-Jul-23 21:10:00

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 Tue 25-Jul-23 21:11:36

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..

Shinamae Tue 25-Jul-23 21:17:20

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..

Hetty58 Tue 25-Jul-23 21:33:53

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.

M0nica Tue 25-Jul-23 21:36:31

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.

Whiff Tue 25-Jul-23 21:53:40

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.

Shinamae Tue 25-Jul-23 22:16:16

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. 💐

DaisyAnneReturns Tue 25-Jul-23 22:24:10

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.

Callistemon21 Tue 25-Jul-23 22:38:57

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.

Bamm Tue 25-Jul-23 22:54:10

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.