Small Fiber Neuropathy; worsening pain

Posted by scottme1 @scottme1, Oct 2, 2022

I started getting symptoms of SFN around 16 years old (6 years ago) and wasn’t diagnosed until 2 years ago with a punch biopsy. My pain initially began as very deep and painful itching on both of my legs. Throughout the years it has progressed to a burning and electrifying sensation.
The pain has now moved to both my arms as well and every single day I feel like 90% of my time awake I’m in pain. I’m sorry to sound so negative. I’m just so young and am tired of waking up everyday and living in pain that just keeps intensifying. I was taking gabapentin for the past 3 years, but recently switched over to Lyrica. I’d love any recommendations for relief if anyone else experiences itching, burning, “electrocuting”, I often say feels like I’m walking through glass lol. Thanks in advance and I’d love to hear your experiences as well!

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@giz

Hi, thank you for sharing your experience and I am so sorry you have so much pain. Having the same pain and sensations I use a tincture from our medical marijuana store. It takes a bit getting used to but it helps me. Also I take neurontin, but it's a bit fatiguing, but helps cut down on the pain.

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Welcome @giz, I'm glad to see that you have connected with @scottme1 and shared what helps you. Do you mind sharing a little more about your diagnosis and symptoms?

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I was diagnosed with diabetes about 3.5 years ago. However I spent about 4 or so years as a prediabetic. At that time my doctor was unconcerned. So, eventually I was treated starting about 3.5 years ago with drugs to lower my HA1C. So, I have since learned that being in a prediabetic state for so long contributed to the SNF. My symptoms run the gambit from numbness, burning, the feeling a coldness, stabbing and feelings like I have a stone in my shoe, which of course I do not (lol). My pain is worse at night in bed. I am on 3000mg of neurontin daily and could not live without it. But it does have such a fatiguing effect. I also have degenerative disc disease and possibly a pinched nerve that may have some effect on my feet. I have a follow-up for this and am going to have the autonomic nerve testing to verify what several Drs have told me is SNF. No one so far has mentioned the punch test. I am 67 and for me about two years ago I was suddenly unable to walk at all from the pain and contemplated a wheelchair. That is when I received the neurontin and about a year later the medical marijuana. I feel bad for those of you who live in states that do not offer this option, as it has been a lifeline for me. I never expected having lived a full and active life to rather suddenly fallen off the SFN cliff. I live in an active 55+ community and the result is having to pull back my activities. But I persevere. Mindset is so important, and never giving up and giving in, although difficult, can help in so many ways. Bless you all.

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@suepyron

Let me know how your appt goes….. I take 800 mg 4 x day gabapentin, 4- 7.5 mg Percocet, 3 klonopin…..that’s just the pain n anxiety meds. I take other meds to specifically for my other health issues, I have a bunch of no cures!!!!
Hope you feel better, have a good evening!

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My 1st appointment went fine. She did a battery of preliminary tests. I have a MRI in about 2 weeks for pine and brain. Then a few weeks later I have the EMG tests. So I am just struggling with the pain until then, and probably afterwards. I am on two support groups for chronic pain/PN. They help remind me I/we are not alone in our 24/7 pain. I hope you find relief from yours! 🙂

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@giz

I was diagnosed with diabetes about 3.5 years ago. However I spent about 4 or so years as a prediabetic. At that time my doctor was unconcerned. So, eventually I was treated starting about 3.5 years ago with drugs to lower my HA1C. So, I have since learned that being in a prediabetic state for so long contributed to the SNF. My symptoms run the gambit from numbness, burning, the feeling a coldness, stabbing and feelings like I have a stone in my shoe, which of course I do not (lol). My pain is worse at night in bed. I am on 3000mg of neurontin daily and could not live without it. But it does have such a fatiguing effect. I also have degenerative disc disease and possibly a pinched nerve that may have some effect on my feet. I have a follow-up for this and am going to have the autonomic nerve testing to verify what several Drs have told me is SNF. No one so far has mentioned the punch test. I am 67 and for me about two years ago I was suddenly unable to walk at all from the pain and contemplated a wheelchair. That is when I received the neurontin and about a year later the medical marijuana. I feel bad for those of you who live in states that do not offer this option, as it has been a lifeline for me. I never expected having lived a full and active life to rather suddenly fallen off the SFN cliff. I live in an active 55+ community and the result is having to pull back my activities. But I persevere. Mindset is so important, and never giving up and giving in, although difficult, can help in so many ways. Bless you all.

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I am glad you are finding relief. I too use THC, and am on 1200mg Gabapentin. What strains help you the most. I have found that "Blue Dream" and Sundae Driver" work best for me. CBD not so much. I use Indica gummies for nighttime.

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Hi paco,

Thank you for your response and am glad to hear you are not on a higher dose of neurontin. I use a tincture ( hold the liquid under your tongue up to one minute). It is made by Standard. Gummies are not legal in my state so I do not have access to them. I use a 1:1 formula meaning 1-THC and 1-CBD. I do not vape as it is too harsh on my throat even though in the past when I did vape it worked quite well. Straight CBD does not work for me either. You can get standard tincture that are higher in THC and very low in CBD. Wish we had gummies. Hope this was helpful! Sorry you have to go through this. But medical marijuana is a lifesaver is it not?

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I have peripheral neuropathy in my feet an legs and take Pregabalin but it is not working yet as the dose needs increasing gradually. It's an awful condition to have but you have to learn to exist with it. Living is not so easy because living with continuous pain is not living at all.

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Hi scottme 1, I'm John. Do you have diabetes? How much was the highest dose of gabapentin you got to?

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@fisbo

I have peripheral neuropathy in my feet an legs and take Pregabalin but it is not working yet as the dose needs increasing gradually. It's an awful condition to have but you have to learn to exist with it. Living is not so easy because living with continuous pain is not living at all.

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Intenta frotarte las piernas con THC.

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