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Has anyone experienced internal vibrations?

Brain & Nervous System | Last Active: Sep 29 9:08am | Replies (901)

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@jager5210

Someone asked me to post my symptoms but I was not feeling well at the time and so I never responded. I do have a diagnosis of small fiber neuropathy with my first symptoms in 1999. Subsequent to the onset, I took 1600 mg of Neurontin and 10 mg of Flexeril which helped me sleep. I was a zombie until 2 or 3 pm the following day. My pain was primarily in my tailbone after taking the drugs and getting some sleep. However, upon awakening, my tailbone was on fire. This continued until I retired about 8 years later in 2007 due to the pain and my inability to function well with poor sleep and medication side effects. When I retired I decided I was going to get off of meds. I tried several times before having success in about 2008. I was off of meds for no more than a month before the tailbone pain worsened and what had been experienced as cold feet turned out to be PN. The pins and needs, shearing flesh pain moved up my legs until my doctors were urging me to take more Neurontin which I did but not at the 1600 mg level. My chronic digestive issues worsened and after a month of uncontrollable diarrhea I was put on Creon for over a year which helped a little. Three years ago I was hospitalized for a heart attack which turned out to be something else. For the last 6 or 7 years my symptoms have been typical of what people reported here... numbness in my feet sometimes extending to my hip, a feeling like I have pins or nails in toes and fingers which was better described by someone here as a feeling like being pinched by pliers. My neurologist of 4 years told me symptoms do not go beyond the arms but it was this site that helped me understand that my vision issues, focus going in and out, and sometimes a burning sensation in the middle of my eye, could be related to SFN. I also have burning in my ears, tinnitus, a feeling like I have a cut in my tongue, and occasionally dry lips, mouth and numbness in those areas. But all, if not most of these symptoms have been reported by others.

Here is the purpose of my lengthy, but not comprehensive, background. I have another issue which I wonder if it is related to SFN. I mentioned this to a new primary care physician a couple of years ago but this was at the end of our time and he just waved me off indicating he didn't want to hear about it.

This other issue is an embarrassing one but I'm at a point of needing to find out which direction I need to go even though I'm damn tired of seeing doctors. I get a partial swelling in my penis without any sexual thoughts or stimulation. This is particularly embarrassing when talking to my male neighbors in that I sense they can tell. This happens when I'm alone doing yard chores or when I'm alone at the computer like right now. I would appreciate anyone telling me if this could be SFN and that I just need to ignore it or whether it might be a symptom of something else. I have googled it but I did not find anything.

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Replies to "Someone asked me to post my symptoms but I was not feeling well at the time..."

@jager5210, I found an article similar to what you describe but I'm not sure if it includes swelling but it does point to small fiber neuropathy. Hope this helps.

PubMed -- Stronger evidence for small fiber sensory neuropathy in restless genital syndrome: two case reports in males.
-- https://www.ncbi.nlm.nih.gov/pubmed/20955316

Hello @jager5210,

I just read the link in the article that @johnbishop posted. I hope that you read it as well and take it with you when you see a doctor about this problem.

I decided to reply to your post because you wrote, "I'm damn tired of seeing doctors." I can't tell you often I've felt that way as well. There are some problems, especially of the neurological type, that can be very hard to diagnose. I would encourage you to stay the course and keep looking for a doctor who will not, "waved me off indicating he didn't want to hear about it." Many of us on Connect, including myself, have been "waved off" and have had to research and advocate for ourselves in order to get the right diagnosis.

You might consider a consult with a doctor, neurologist, at a large multi-disciplinary medical center like a university medical school or a facility like Mayo Clinic. Have you considered a second opinion?

I forgot to mention another symptom I've experienced about 10 times since this summer. This has only happened at night when I go to bed. All my teeth hurt briefly at the same time. I feel like I'm getting a shock from below the gum line to the top of my teeth in the nerve of the tooth. I feel like I'm feeling the nerve fiber shooting up from below the gum. I haven't read of anyone else experiencing anything like this. Luckily, this is not present that often but I worry that it will become so like the cut feeling I have in my tongue.