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Peripheral Neuropathy is life changing: How do you accept it?

Posted by orsons @orsons, May 3, 2024

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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arcuri24 | @arcuri24 | Jun 13 10:34am
In reply to @ccchang "@arcuri24 Hi, my toe hurts at times too, and my right foot and back of calf/thigh..." + (show)
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@arcuri24 Hi, my toe hurts at times too, and my right foot and back of calf/thigh are numb. You mention "celia-induced", are you on a gluten-free diet? And if so, how long have you been on that diet and has it helped? Am thinking to try it but it will be hard.

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@ccchang
My big toe stopped hurting about a year ago. I do have issues with my calf but think they are mostly due to a shin shave biopsy that I had back in December and am still in the healing process. I am wearing a lidocaine Rx patch as prescribed by my neurologist. He also tested me for celiac disease last July and I was positive. So my neurologist said I must maintain a strict gluten free diet. Some people elect to go gluten-free but I have no choice. I do not have the intestinal symptoms that most celiacs have but I do have neuropathy from it as well as hyper-sensitivity so pain tolerance is low. Before getting rid of gluten, I was losing weight and having trouble breathing. All of that stopped when I got rid of gluten. So, yes, it has helped me and I think I am eating healthier because I have eliminated lots of processed foods and they have unhealthy oils and preservatives. Gluten-free foods like breads, flour etc cost more and I have to spend time reading labels to make sure what I am buying is gluten-free. For me, it is not so hard and I have been gluten-free almost one year now. I may treat myself to a gluten-free pizza tonight from my local pizzeria and in my refrigerator is a homemade chocolate cake. Plenty of options and healthy ones, too. And unlike some other autoimmune diseases there is no need to take medicine (there isn't any) and that simplifies things. Hope this answers your question.

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audry | @audry | Jun 13 12:29pm

Hi. I have peripheral neuropathy due to a gluten sensitivity. Was diagnosed with celiac ataxia and sensory ganglionopathy. I have been on a 100% gluten free diet for 18 months now. It is challenging ( no longer eat out😒 or stay in hotels) but it is ok once you have got used to it. Baking is now better than non gf and almost everything cooked from scratch. My balance/ coordination are a little better. Neuropathy about the same but not getting worse. So I am grateful. And I totally agree with the posts above. Allow yourself a period of adjustment to your situation and then go for it. Live your best life.

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cori | @ccchang | Jun 14 7:27pm
In reply to @arcuri24 "@ccchang My big toe stopped hurting about a year ago. I do have issues with my..." + (show)
Profile picture for arcuri24 @arcuri24

@ccchang
My big toe stopped hurting about a year ago. I do have issues with my calf but think they are mostly due to a shin shave biopsy that I had back in December and am still in the healing process. I am wearing a lidocaine Rx patch as prescribed by my neurologist. He also tested me for celiac disease last July and I was positive. So my neurologist said I must maintain a strict gluten free diet. Some people elect to go gluten-free but I have no choice. I do not have the intestinal symptoms that most celiacs have but I do have neuropathy from it as well as hyper-sensitivity so pain tolerance is low. Before getting rid of gluten, I was losing weight and having trouble breathing. All of that stopped when I got rid of gluten. So, yes, it has helped me and I think I am eating healthier because I have eliminated lots of processed foods and they have unhealthy oils and preservatives. Gluten-free foods like breads, flour etc cost more and I have to spend time reading labels to make sure what I am buying is gluten-free. For me, it is not so hard and I have been gluten-free almost one year now. I may treat myself to a gluten-free pizza tonight from my local pizzeria and in my refrigerator is a homemade chocolate cake. Plenty of options and healthy ones, too. And unlike some other autoimmune diseases there is no need to take medicine (there isn't any) and that simplifies things. Hope this answers your question.

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@arcuri24 It does, thank you. It's great that your toe stopped hurting, wishing you continued healing.

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