Peripheral Neuropathy life changing

Posted by orsons @orsons, May 3 7:08pm

It all started with pins and needles in one foot. I left it but finally went to hospital and they said my thyroid was underactive. So I was put on tablets to regulate my thyroid but the pins and needles remained and then went to other foot as well. I went to neurology and had MRI of head and back and later that year had another MRI but apart from stenosis there was no compression. I was very ill back in 2020 with other ailments which remain which is all rather strange. This neuropathy has been life changing. I take maximum dose Pregabalin but it doesn't really help save if I come off it the pain and discomfort could become worse. I have tinnitus and gastric problems digestive issues. I am going to see a specialist to see if I might have autonomic neuropathy which I hope will be ruled out. I just cannot accept what has happened to me.

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So sorry for the misspellings. This auto correct messes up a lot. Should have proof read it.

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I'm waiting for GP to prescribe with the said cream but there is a shortage of it in UK. Yes I get inexplicably freezing cold feet and asked for another anchial brachial test but he said results would be same....normal! So there is nothing wrong with circulation so it's the nerves and brain not connecting. It affects other things in your body to like heart rate toilet regime which is erratic. It's all mysterious to me got PN in 2020. I really do wonder about that virus.

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@orsons

I'm waiting for GP to prescribe with the said cream but there is a shortage of it in UK. Yes I get inexplicably freezing cold feet and asked for another anchial brachial test but he said results would be same....normal! So there is nothing wrong with circulation so it's the nerves and brain not connecting. It affects other things in your body to like heart rate toilet regime which is erratic. It's all mysterious to me got PN in 2020. I really do wonder about that virus.

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May I please ask how it has affected you toilet regime? I ask because I have been having a constipation issue. My Gastroenterologist say that it is IBS. After your comment, I am wondering if it is my peripheral neuropathy. Thank you, Charles aka brotherchuckles80.

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I use red light therapy and that seems to help with the pain.

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Yes the peripheral nerves affect things like body temperature heart rate blood pressure bowel and urine movements etc. I was told I had IBS but I was told by a GP when I questioned how they came to that diagnosis of IBS was because they don't know what's causing it so give it a name mine was IBS......you couldnt make it up but they do in some cases!

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Red light therapy .....I will find out more about that. Thank you .

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What is your Rx for Pregabalin daily? Do you have any reaction to it? I don't like taking it because it makes me feel not only sleepy; but, also not able to think real clearly all of the time!!

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@mlmbhsrnpb3

I use red light therapy and that seems to help with the pain.

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Did you purchase it??

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I have what I call twingling, which is a mixture of twitching, tingly, prickling, sometimes burning in my legs, usually when I am sitting down or lying down in bed. They sometimes feel like tiny electric shocks sometimes. I've had this for ten years. I don't have any symptoms in my feet or upper limbs, apart from the odd twitch. I can walk for miles and no symptoms but as soon as I sit down the horrible twingling starts.
I had all the nerve conduction studies 10 years ago and was told I may have benign fasciculation syndrome. I managed to live with this for all these years, after the anxiety of some awful diagnosis had subsided, but now they are back worse than ever. I cannot sit down or lie down without the above symptoms coming on almost instantly. I am wondering if I have a peripheral neuropathy rather than BFS. It really is a problem even though I only have it in my legs....mostly.

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@bettyg81pain

What is your Rx for Pregabalin daily? Do you have any reaction to it? I don't like taking it because it makes me feel not only sleepy; but, also not able to think real clearly all of the time!!

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2x300mg daily maximum legal prescription dose in UK. I hate being on it. Makes you feel lethargic. It causes weight gain when you don't over eat. I think it slows metabolism and causes water retention. I've been on it about 16 months. It helps a bit but my GP says pain and pins and needles could be even worse if I come off it. I'm seeing an expert in PN in August. I hope he can do a miracle on me!

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