Advancing of condition + Gluten-free diet?

Posted by hypotemusea @hypotemusea, Jan 30 11:02am

Hi everyone, I have a couple of questions:

1. I have idiopathic SFN. I've been having a bad pain flare the past couple of weeks where my pain seems to have advanced from a manageable level in my feet (tingling, comparatively mild pain) to full-on shooting pain in the soles. I thought it was a temporary thing but unfortunately it seems to be staying. Lidocaine patches helped the first night I tried it but since then it has actually kinda made the pain worse? That seems strange to me. Also, is this considered a progression or worsening of my SFN? The 10mg amitryptiline I was taking helped take the edge off the pain for the past few months but clearly it's not really doing anything for this new level of pain. Is this a sign I should consider an increased dose? I'm seeing my neurologist in a few weeks so I'll definitely ask him.

2. Out of desperation I decided to start a gluten-free diet a week ago. I'm curious if this has helped anyone, and how long before you see results? My impression is that I have to maintain it for at least 3 months to see. My celiac antibodies blood test was negative, and I don't really have digestive symptoms so I don't think I'm gluten sensitive… I tried gf for a month a few years ago and noticed no difference. This is just out of desperation for pain reduction! I was vegan for 10+ years so I'm already dairy-free. I've been on the candida diet in the past so I'm no stranger to cutting sugar. I've been adding fish back in my diet to make things easier (I won't consider eating meat).

I would love to hear any of your insights or experiences, thanks in advance!

I am so sorry to read about your troubles. It took pain medication to relieve my symptoms at all. I also have a spinal stimulator implanted in my back. The stimulator helps, but I still need pain medicine to function. So, it is a combination and at least for me, it is trial and error to find what works for you. My best to you as you begin this journey. Try not to get discouraged, keep at it until you find the right mix.

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Hi @ Hypotemusea, I am sorry about advancement of pain. I know that story, for sure. A few things; 10mg. Amytriptiline perhaps should be raised, to see if it helps. Another thing, is that I had had great relief from really bad burning of Neuropathy from using Benfotiamine, a form of vitamin B1 which is thiamine. I buy it on Amazon. Check out this product. Very good reviews, and widely used in England and Germany for neuropathy pain. Good luck, LoriRenee1

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Hi @hypotemusea I have been dealing with neuropathy now for the past 4 years. Mine was caused accidentally through vascular surgery to repair my AVM. In the beginning, for a few years, I just stood back to see what unfolded. I did not or do not take any medications. I reported my symptoms and concerns to my neuro team of doctors and most recently to my PCP. I was disappointed to get no answers because now I realize how little was known medically. Last year I began searching for answers online myself. I had my own series of symptoms to go by. I too tried a gluten free diet and after a month I stopped when noticing no difference. I discovered my body is tolerant to gluten. I must say for me I tried different diets and found less carbohydrates made a difference with my neuropathy. Too much blood glucose can cause nerve injury or damage. Luckily I was consuming less than 100 grams of net carbohydrates per day. Each day the count was different and I simply continued just because I felt better. I even had a burning sensation in my stomach and/or my esophagus which made me feel miserable all day long. I was afraid it may have been the neuropathy to cause it. Eating was difficult. I couldn’t understand why some days would be worse than others and why some days I had no burning. Through my research I have found ways to increase my exercise time which has made a positive impact so far. I am able to eat more net carbs everyday because I have increased my daily exercise duration to burn the carbs. As a result I experience less burning pain in my lower leg. Also I discovered doing a light exercise activity before going to bed on my off days eliminates the burning in my stomach the next day. I have completed my second week with exercises and will continue to test my theory. I hope this information has been helpful in finding answers for yourself. I welcome any questions you may have. Wish you well. Toni

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@bethunger

I am so sorry to read about your troubles. It took pain medication to relieve my symptoms at all. I also have a spinal stimulator implanted in my back. The stimulator helps, but I still need pain medicine to function. So, it is a combination and at least for me, it is trial and error to find what works for you. My best to you as you begin this journey. Try not to get discouraged, keep at it until you find the right mix.

Jump to this post

Thank you

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@hypotemusea
Hi, I remembered you and I also reread your posts from October.

Are you still in SE Asia? When you get back to the US you may want to try medical marijuana, which is less harmful to the body than most painkilling drugs. Are you still on Lyrica and is that still helpful? Or are you just doing Amitriptyline now? I am sorry to hear that your sfpn is advancing so quickly and are starting to have shooting pains in the feet. Like Toni @avmcbellar I believe eliminating sugar (or at least reducing it drastically) is the first and best thing you can do for your daily diet. Sugar makes every health condition worse by far. Strive to maintain good health habits in the 3 main areas: eating, sleeping and exercise, and try to keep your stress level low if you can.

My wife has terrible burning PN pain in her feet (she sometimes says it feels like they have 3rd degree burns) but one saving grace she has is that she usually gets pretty good sleep most nights. Like you, she is hypersensitive to medications of any kind including OTC ones like aspirin and tylenol. but she does get helpful relief from marijuana, which she uses an average of 2-3 times per week for a break from the pain. She does not exercise enough. You are young and (I am sure you know this) you should to try to keep up with your exercise plan, whatever that is for you. It helps maintain good circulation along with many other benefits for your feet and whole body.

Good luck to you! I hope the shooting pains begin to subside. Best, Hank

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@lorirenee1

Hi @ Hypotemusea, I am sorry about advancement of pain. I know that story, for sure. A few things; 10mg. Amytriptiline perhaps should be raised, to see if it helps. Another thing, is that I had had great relief from really bad burning of Neuropathy from using Benfotiamine, a form of vitamin B1 which is thiamine. I buy it on Amazon. Check out this product. Very good reviews, and widely used in England and Germany for neuropathy pain. Good luck, LoriRenee1

Jump to this post

Thanks for the recommendation! I upped my dose of amitriptyline and it seems to help.

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@jesfactsmon

@hypotemusea
Hi, I remembered you and I also reread your posts from October.

Are you still in SE Asia? When you get back to the US you may want to try medical marijuana, which is less harmful to the body than most painkilling drugs. Are you still on Lyrica and is that still helpful? Or are you just doing Amitriptyline now? I am sorry to hear that your sfpn is advancing so quickly and are starting to have shooting pains in the feet. Like Toni @avmcbellar I believe eliminating sugar (or at least reducing it drastically) is the first and best thing you can do for your daily diet. Sugar makes every health condition worse by far. Strive to maintain good health habits in the 3 main areas: eating, sleeping and exercise, and try to keep your stress level low if you can.

My wife has terrible burning PN pain in her feet (she sometimes says it feels like they have 3rd degree burns) but one saving grace she has is that she usually gets pretty good sleep most nights. Like you, she is hypersensitive to medications of any kind including OTC ones like aspirin and tylenol. but she does get helpful relief from marijuana, which she uses an average of 2-3 times per week for a break from the pain. She does not exercise enough. You are young and (I am sure you know this) you should to try to keep up with your exercise plan, whatever that is for you. It helps maintain good circulation along with many other benefits for your feet and whole body.

Good luck to you! I hope the shooting pains begin to subside. Best, Hank

Jump to this post

Thanks for the concern and encouragement. I agree with eliminating sugar — hopefully that will help! I take 50mg Lyrica sometimes to help me sleep but I think the dose is too low for it to work on nerve pain. The shooting pains seem to have calmed a little, thankfully, so I could sleep last night without pain. I will continue to update if anything else helps!

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