What helps the symptoms of Small Fiber Neuropathy?

Posted by margie1234 @margie1234, Dec 12, 2021

Good morning
I know most members here have more severe symtoms than I.
I woke up one morning in august with both feet tingling and with a sandy like feeling under my toes and bottom of both feet. I had no previous warning. My family doctor said that is strange maybe it will fo away on its own?? I had a short assessment with a poditrist which cost me $95 dollars and he said I had beginnings of small fiber neuraphy buy cushioned insoles and come back if it gets worse. To see a neurolagist here is 3 year wait and I have no coverage I am at my wits end on what to do for this. I thought only diabitics got this. My anxiety level is off the wall. I have researched on line and do stretches and walk. Any advice on what to do to possibly stop the tingling would be so much appreciated. Margie

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I am wondering if there are any success stories regarding the use of cymbalta for treating SFN.

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@jnana

I am wondering if there are any success stories regarding the use of cymbalta for treating SFN.

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Good evening @jnana. I am so glad to welcome you to Connect. I want to answer your question about Cymbalta, aka duloxetine for treating SFN. I began using Cymbalta about two years ago for a couple of reasons. The main purpose was to give me a head start in the morning to keep my anxiety under control. I was beginning to have panic attacks as my SFN became more of a major issue. My PCP also requested that I have psychological testing as I felt the new presence of cognitive decline.

The test results put me in the category of general anxiety. The first step was to taper off the nortriptyline I was taking at bedtime. It was great for inviting sleep but didn't do anything for the morning anxiety. So...I replaced the bedtime meds with medical cannabis and began an introductory dose of Cymbalta in the morning.

At the end of that year, my PCP and I had a good shared discussion about what needed to be re-visited. She recommended that I increase the Cymbalta to 90 mg. That turned out to be a great idea and it still works very well. In February, we will have another of our yearly chats and see what can be done at this point to keep up with the progressive nature of SFN.

The other activity that has helped me is mindful meditation. I devote special time every day to a mindfulness practice and yoga.

Would you tell me a little more about your current situation? Have you been diagnosed with SFN? What medications are you currently using?

May you have happiness and the causes of happiness.
Chris

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@artscaping

Good evening @jnana. I am so glad to welcome you to Connect. I want to answer your question about Cymbalta, aka duloxetine for treating SFN. I began using Cymbalta about two years ago for a couple of reasons. The main purpose was to give me a head start in the morning to keep my anxiety under control. I was beginning to have panic attacks as my SFN became more of a major issue. My PCP also requested that I have psychological testing as I felt the new presence of cognitive decline.

The test results put me in the category of general anxiety. The first step was to taper off the nortriptyline I was taking at bedtime. It was great for inviting sleep but didn't do anything for the morning anxiety. So...I replaced the bedtime meds with medical cannabis and began an introductory dose of Cymbalta in the morning.

At the end of that year, my PCP and I had a good shared discussion about what needed to be re-visited. She recommended that I increase the Cymbalta to 90 mg. That turned out to be a great idea and it still works very well. In February, we will have another of our yearly chats and see what can be done at this point to keep up with the progressive nature of SFN.

The other activity that has helped me is mindful meditation. I devote special time every day to a mindfulness practice and yoga.

Would you tell me a little more about your current situation? Have you been diagnosed with SFN? What medications are you currently using?

May you have happiness and the causes of happiness.
Chris

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Thank you Chris for sharing your journey. I have experienced neuropathy sensations of pins and needles, stinging and sometimes burning since September. I have have seen 2 neurologists that completed blood tests, EMG, and punch biopsy test. All were negative except the biopsy- which indicated a slight SFN in my foot -which the neuro. Thought could be explained from damage chemotherapy did to me 4 years ago. I also have burning mouth syndrome that started in Dec. 2020. I was already taking 400mg a day of gabapentin for my mouth. So they initially increased this to 600mg, then 900-1200mg.
The onset of my neuropathy symptoms was sudden and started in my trunk area - especially thighs and back. It now has spread significantly to my hands and sometimes to my feet. It is tricky to find clothes to wear that do not exacerbate the sensations.
I do meditate with music and prayer which help. The gabapentin helps somewhat.
I have been prescribed Cymbalta, but am afraid of taking because of long term side effects, if I am no longer able to take it.
Does Cymbalta decrease your neuropathy symptoms? Do you/did you experience side effects from Cymbalta?
Thanks! Jennie

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@jnana

Thank you Chris for sharing your journey. I have experienced neuropathy sensations of pins and needles, stinging and sometimes burning since September. I have have seen 2 neurologists that completed blood tests, EMG, and punch biopsy test. All were negative except the biopsy- which indicated a slight SFN in my foot -which the neuro. Thought could be explained from damage chemotherapy did to me 4 years ago. I also have burning mouth syndrome that started in Dec. 2020. I was already taking 400mg a day of gabapentin for my mouth. So they initially increased this to 600mg, then 900-1200mg.
The onset of my neuropathy symptoms was sudden and started in my trunk area - especially thighs and back. It now has spread significantly to my hands and sometimes to my feet. It is tricky to find clothes to wear that do not exacerbate the sensations.
I do meditate with music and prayer which help. The gabapentin helps somewhat.
I have been prescribed Cymbalta, but am afraid of taking because of long term side effects, if I am no longer able to take it.
Does Cymbalta decrease your neuropathy symptoms? Do you/did you experience side effects from Cymbalta?
Thanks! Jennie

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Good "sunny" winter morning Jennie. Thank you so much for responding so thoroughly. I do know that we have many members who have found that their chemotherapy left its mark.

All I can tell you about Cymbalta is quite positive. What are the long-term side effects that you fear? I have had no side effects from my 90 mg morning dose. Because my anxiety creates pain which creates anxiety, etc., etc., etc, I think that the Cymbalta coupled with my medical cannabis tincture does a reasonably good job. If I stop and think about the pain....then I will begin to worry again.

Have neuropathy symptoms in your trunk area resulted in pain? My onset was also in the abdomen and trunk area. It almost feels like we are neuropathy twins.

That must mean that I will share your issues in my mindful meditation. What shall I place at the top of my list for you?
May you be safe, protected, and free from inner and outer harm?
Chris

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I have just started Cymbalta for severe, painful small fiber neuropathy. I have pain in my feet, legs, hands, and arms constantly. I was on Effexor for anxiety/depression from the pain. I titrated off the Effexor and titrated up on the Cymbalta, and am now up to my max dose of 60mg. I haven't noticed any improvement in pain yet, but I just started the max dose. I also haven't had any bad side effects, except for a slight increase in my usual tinnitus. Do you take Cymbalta in the morning because it affects your sleep? I wasn't sure if I should take it in the morning or before bed. I really need something to help me sleep. I used to take Ambien every night, but I am now trying to get off of it.

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@cwallen9

I have just started Cymbalta for severe, painful small fiber neuropathy. I have pain in my feet, legs, hands, and arms constantly. I was on Effexor for anxiety/depression from the pain. I titrated off the Effexor and titrated up on the Cymbalta, and am now up to my max dose of 60mg. I haven't noticed any improvement in pain yet, but I just started the max dose. I also haven't had any bad side effects, except for a slight increase in my usual tinnitus. Do you take Cymbalta in the morning because it affects your sleep? I wasn't sure if I should take it in the morning or before bed. I really need something to help me sleep. I used to take Ambien every night, but I am now trying to get off of it.

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Good evening @cwallen, I hope you get settled with Cymbalta. Yep....the tinnitus.....it's always there isn't it? Sometimes even seeing the word on my screen gets it ramped up.

Is 60 mg your max dose set by your clinician? I now take 90 mg and notice the improvement in my
relaxed mornings. I also used to take Ambien before my shoulder surgery. That was before I knew about tapering off the medication. I just stopped taking it and paid the price.

And finally, I don't know if Cymbalta would affect my sleep. For me, it needs to take care of my morning anxiety.

Before bed, I have 2 Gabapentin (300 mg) to keep my arms and hands from tingling all night long. For sleep, I use a 2:1 CBD/THC tincture......works beautifully.

Have you tried medical cannabis for sleep?

May you be content and healthy.
Chris

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Thanks for your reply. It helps to see what works for other people. I have tried medical marijuana sporadically. If I have too much THC it seems to stimulate (make worse) my neuropathy. I most recently tried a 10:1 CBD/THC, but it doesn't make me sleepy. My local dispensary doesn't have any that is high CBD AND makes you sleepy. I am planning on trying to find a place that does. Glad it helps you.

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@artscaping

Good evening @cwallen, I hope you get settled with Cymbalta. Yep....the tinnitus.....it's always there isn't it? Sometimes even seeing the word on my screen gets it ramped up.

Is 60 mg your max dose set by your clinician? I now take 90 mg and notice the improvement in my
relaxed mornings. I also used to take Ambien before my shoulder surgery. That was before I knew about tapering off the medication. I just stopped taking it and paid the price.

And finally, I don't know if Cymbalta would affect my sleep. For me, it needs to take care of my morning anxiety.

Before bed, I have 2 Gabapentin (300 mg) to keep my arms and hands from tingling all night long. For sleep, I use a 2:1 CBD/THC tincture......works beautifully.

Have you tried medical cannabis for sleep?

May you be content and healthy.
Chris

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Hi, if you don’t mind me asking, what happened when Ambien was suddenly stopped? It’s those warnings that come with some meds that makes me reluctant to try them. Thanks!

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I am going off Ambien slowly. I have reduced it from 5mg every night to 2.5 mg every other night. I am not sleeping as well, but I still sleep OK. I am not sure what happens if you go cold turkey. I think your body gets dependent on it to go to sleep, but I don't know if you get withdrawal symptoms or not.

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MY routine is 5mg HydroCodine with several Ibphrophin which I take between 7:30 and 9:30. Then when I get home I take another 5mg HydroCodine and 300 or 400mg of Pregabalin this usually takes me through until the next morning. I may have to up the pain medicine when I have a stronger events. I have been able to stop the morning pain medicine and make it through to the next morning. Everything is a day by day adjustment. If I don't see the indicators then I pay for it later. There is pain which involves my arms and shoulders usually the higher dose PreGabalin stops that. The side effects of taking what I'm on seem to be constipation form the HydroCodine. No noticeable effects from the lower dose of PreGabalin. The higher dose PreGabalin has noticeable effects, mostly sleepiness, no anxiety.

I trying to get of the HydroCodine since I having short term memory problems and think the opioids are the cause of that.

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