Help asking doctor if this is small fiber neuropathy or something else

@albiet

I've had tinitus for decades and have never thought that it could have been a symptom of neuropathy, but I have noticed that it seems to have worsened since I began treatment for sfn.

I also, among other things, take Imipramine and Mirtazapine. The imipramine seems to be reducing my pain in my feet. I take Mirtazapine as an add on for Wellbutrin for depression.

Like you, I think that I have other health issues that could be attributed to sfn, but doctors haven't given me an answer to my question.

Jim

@albiet, @jeffrapp, @johnbishop, @rwinney, You are welcome @albiet. I am continuing to include the others so that they can chime n when it seems appropriate. My "losing" touch with my hands and feet began about 5 yrs ago. The pain/numbness in my legs and feet moves from below the ankles to below the knees depending on my activity level.

The pain in my hands, wrists, and arms followed the legs and feet. Cervical fusion was a good attempt to silence them but it didn't work as hoped. Therefore I am in a difficult situation.

I manage the SFN symptoms by controlling my activity, my diet, my weight, my other health factors, e.g. sleep, alcohol use. I manage my quality of life by being a daily participant in yoga and mindful meditation, an enthusiastic advocate for medical cannabis, and a committed mentor for Connect. Chris

Hi @albeit
I did a very quick search for relationship between SFN and tinnitus. The only thing I found was tinnitus and SFN as a result of chemotherapy.
I also have tinnitus, but it preceded the SFN.
Tinnitus is usually caused by hearing loss. The brain manufactures sounds, because of the lack of input. That's why when people get hearing aids, the tinnitus is often reduced.
I'm pretty sure my hearing loss/tinnitus is caused by too much loud rock'n roll back in the day.
Also, by definition, PN is a disease of the peripheral nervous system. Problems with hearing, chattering teeth, and foggy thinking all would involve the central nervous system, so I think PN is an unlikely cause. However, as we all know, this is a strange disease, so I wouldn't bet on that.
Don't try to come up with your own diagnosis. Just tell the neurologist all your important symptoms, but try not to overwhelm him/her with every or short lived symptoms you can think of.
The frustration you feel is understandable. It would be helpful if you understood that the medical providers are also frustrated, and often can't come up with an answer to everything. As an example, my SFN is idiopathic, which means unknown cause. I know how it feels.
Jeff

Hi there. It is always beneficial to investigate side effects of meds to rule out as cause of symptoms first. On occasion side effects from meds and diagnosis can certainly share commonalities. SFN has been a very confusing diagnosis for me due to its plethora of symptoms, many of which match side effects from my current meds. My advice on meeting with your Dr is to keep a notebook handy and list each and every question as it pops into your head. Give yourself time to accumulate questions then re-read them days later. Once you compile a good list and look back at it a few times, certain questions may seem less imperative as time passes. Also, you may find that you can resolve some answers yourself via Google, forums, etc... As your appointment approaches, prioritize your questions and list no more than 10, keeping them straight forward. Less is more. Once in the office you start with your top questions and work your way down. Chances are most Drs can't or won't spend too much with you so make it count and get to the point. Good luck going forward.
Rachel

It appears that some people have tinnitus and neuropathy as I found this on the site: https://connect.mayoclinic.org/discussion/ear-tinnitus-and-pain-with-neuropathy/

I'm sure I read/saw somewhere that they ARE related. Perhaps in a video that was recently posted with the doctor doing a presentation on SFN???? (Albeit - if you can find that video, I highly recommend it!)

As for the rest of the symptoms - it's possible there are multiple things all going on at once and the symptoms are not related...

I would identify the 3 - 5 loudest/most frequent sensations or issues and talk to the doctor about those.

thank you for your help. the only thing that currently helps is klonopin, haveover what use to work no longer does. i pill would put me to sleep and id findmyself good the next few days. last night i too 5 mg to get back to sleep(i do this one every 2 weeks just to give me a day o f relief. 1 pill used to work so i gues my body hass built up against itl.im sure that not a good thing and sicne im running out of it, probably will need to stop that. does anyone here take klonipan to help wth their symptoms.i f\or year i was on only imipramine and cymbalta. my sleep was good but always felt tired.earlier this uear was told to get off cymbalta as my arm ws twitching alot eventually twithing stopped, buy not sure it was the cymbalta. the negative about the cymbalta ist his symtptoms came on while i was on it (200 mg immipramine and 3o cymbalta - the tired ness and start of arm movement involintary, legs buzzing but i had been on for years.
cymbalta, so not sure if i should talk to dr about getting of remeron and going back to cymbalta . i have fear of nerotin and lyrica.

please help

I can't help but believe that they can be related as I started to experience them both at the same time.

jeff,
@artscaping @jeffrapp, @johnbishop, @rwinney how does you guys deal with the mental issues on this. im having a hard time staying focused. i reak=lize that there are others with much worse things, but all i can think about is my pyhsical problems and what drs to go to.

@albiet, by mental issues do you mean foggy thinking or confusion? That may be a side effect of the medication you are taking. I only have numbness with my PN so do not take any medications but I have had times where I was pretty down mentally due to the neuropathy. What has helped me is just trying to take things one day at a time and focus on things that make me happy - not that I'm always able to do that but I make an attempt.

There is a book by Norman Doidge, M.D. - "The Brain's Way of Healing" that talks about a way to train the brain (my words) to help reduce or remove chronic pain. I started reading it but never finished and gave it to a friend. The chapters I did read made a lot of sense. He has a website with some frequently asked questions that may be helpful - http://www.normandoidge.com/?page_id=1052

thank you john. btw does anyone use klonipan here. it wad been helping my buzzing and sleep but seem to need much more that i initially used so curious if anyone else uses it.