Living with Neuropathy - Welcome to the group

@lynnaustin, Good morning. Welcome to Connect. I hope your journey with us is helpful and opens doors for your well being, I notice that you are experiencing pain and tingling/stinging sensations in your forearms. Do those feelings begin with your hands and then move up to your forearm? What are you currently using to help with the discomfort?

There are a number of options for you to try. I just need a little more information so that I can respond appropriately and introduce you to some of our helpful mentors and members. We have no medical backgrounds, just a wealth of experience and a willingness to share with you. Finally, how long have you been experiencing this discomfort? May you find joy today. Chris

I had an emg done in February of this year . At that time I just had pain and tingling in feet. Since May my hands started to be sensitive to touch and achy. Soon after I started experiencing stinging in my forearms . I’m on Gabapentin for pain and recently started Cymbalta for anxiety. My test in February was done by a DO. I went to a neurologist in June and I’ve had many many tests! I’m scheduled for Emgs of my lower body to compare with my first one in February to see if it’s progressed and a first emg of my hands and arms. So far it seems like it’s idiopathic. I’m not sure if he’s going to send me for a spinal tap. He mentioned it but not recently. The results of my emg stated large fiber sensory neuropathy, small fiber could not be assessed with technique.
Too much info?😊 thanks for replying .

I was diagnosed with idiopathic SFN after having a negative result from EMG testing in my feet and legs. I had burning, tingling in my feet and hands and take gabapentin and R -Alpha lipoic acid. It has been 16 mo. since the sudden onset and it has gotten somewhat worse and I have increased my dosage 2x but I have only ever had 1 EMG test done. I think that drs. are only able to treat the pain unfortunately so I have never requested further testing. Whether or not this is smart I don’t know. My greatest hope is that it does not progress too far and that the drug co.’s come up with something better than Gabapentin in the near future. I wish you well.

I joined this site a few weeks ago. Thank you everyone for your comments and guidance. How many of you with PN work full-time? What are your tips for working with neuropathy?

@lynnaustin Wow...that was fast. Thank you for responding. I am tagging @johnbishop since he also replied to your post. John has been my mentor since I joined Connect a couple of years ago. His forte is research. So ask away and he will delight you with the places he can find for pertinent information.

A couple of notes in response: you have gone halfway with the large fiber sensory neuropathy based on your EMG. As your "neuropathy" has moved to your hands and forearms, I might suggest that you request a skin biopsy to detect small fiber neuropathy (SFN). That test is done in under a minute without discomfort and then sent to a special lab that measures the percentage of nerve activity you have in the sample. These small fiber nerves seem to create pain because when they are unable to do their job, they send back pain signals. @johnbishop can give you a lead to understanding all of the neuropathy situations.

I also see that John has given you the link to MFR therapy. That amazing gentle touching therapy has been my salvation, I go every week. The relief, though not permanent, has been a game-changer for me. Your MFR therapist will also teach you some at-home exercises or treatments that can be helpful when done regularly.

Gabapentin. if you tolerate it well, is my sleep medication. it works on the brain to mask the pain by calming the nerves that create it. My dosage has increased to 1200 mg 1 hr before bedtime. It gets my hands ready for some uninterrupted sleep. Do you take your gabapentin in the evening? If I may ask, what dosage are you using?

Then in the morning I also take duloxetine (Cymbalta) 60 mg. I have worked up to that and if it does nothing more than reduce my anxiety, I am happy. As you probably know, pain can lead to anxiety which can lead to more pain and then you are in a loop.

I am a fan of topicals for quick relief and always have them in my purse. Have you found any balms or lotions or compounds that help you during the day?

Let's start with these ideas. Oh and throw in a hot as possible shower in the morning. Please ask any questions you wish. May you be free of suffering today. Chris

@helennicola, Good afternoon, thanks for responding today. I will cut right to the chase. The tingling in hands and feet may be one thing. The fact that you have burning and possibly pain is another story. May I ask, when do you take the gabapentin? Before bedtime? Throughout the day? What is your current dosage? Do you go for myofascial release therapy (MFR)? There is a discussion here to outline the potential benefit of this treatment.

The one test that you might explore is the skin biopsy. This is a non-discomfort two-minute test that extracts a small amount of tissue from your leg, for example. The specimen is sent to a special lab that will measure the percentage of living small fiber neuropathy cells in your sample.

I sure would like to think that the medical community is close to a discovery of some way to get our nerves to come alive and be free of symptoms. And someday that might happen. In the meantime, I would like to do what I can to be as pain and irritation-free as possible. Unfortunately, at this point, there is no cure from neuropathy....just some relief and lifestyle adjustments that can help with the quality of life issues. We can be right here to help you discover what is possible. Be healthy and pain-free today. Chris

@lynnaustin I'm not sure if this is helpful but it may give you a better understanding on how neurologists diagose the different neuropathies. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

@lynnaustin I understand that small fiber neuropathy does not show up on EMGs. In fact, a normal EMG can be seen as an indication of small fiber neuropathy. Repeating the EMG to compare to one done in February seems like overkill, and you may encounter a problem with insurance paying for it.

My neurologist said she could do the skin biopsy but the results wouldn’t change anything. I experience the classical signs of idiopathic SFN the most troublesome being the burning/tingling in my feet and hands, I also have the feeling of “walking on cotton balls” which does not affect my balance luckily, dry mouth and eyes, and sometimes the icy water trickling down my leg. I take 300 mg. gaba at night which most often let’s me sleep through the night. I choose not to take gaba during the day although my hand pain has increased and is noticeable early on. I am afraid to increase the dosage unless necessary. I have noticed that I have alot less patience and tend to feel depressed and easily stressed since being in gaba but don’t see a viable better solution.

Hi @helennickola
I have almost the exact same symptoms and diagnosis, idiopathic small fiber neuropathy. Your neurologist is most likely correct about the test not changing anything. In most cases I would agree, but because this is such a maddening condition, I pushed a little to have that test, and some others, so that I coud be sure nothing was missed. The test didn't change anything, other than me being more convinced that the diagnosis is correct.
Regarding meds, I take Lyrica 150 mg 3x daily (actually pregabalin, now that it is generic and much cheaper). I just did an experiment where I went off Lyrica slowly, observed how I felt, then decided to go back on it, because I thought I felt better. It was somewhat subtle, but I do feel better.
Good luck!