Right, mine was much higher, for who knows how long. I never put 2 and 2 together and was without health coverage for a decade plus.

I know I am still in a high zone, troubled by increased symptoms but the direction is right. I was hoping for a cessation in the in the increasing symptoms. Healing sounds dynamite, but I am focused on slowing this roll.

The feet and legs are difficult. My hands betraying me has this harsher edge to it. Then I steppedon the rope on a laundry bag, fell like an At-At in The Empire Strikes Back and realize it all is rather lousy.

Everything is a caltrop.

Canagirl,

It seems the thread has taken a turn towards diabetes, which I don't have, but I wanted to address your initial question about vibrating.

One of the first symptoms of my PN was vibration. I get it from the waist down through my butt and all the way down my legs to feet. It most of the time was pulsing, almost rhythmic. It was intermittent, lasting 2-3 days, then it would stop...but my pain also had on/off days when it first started (keep in mind this was like 18 years ago, so not very fresh in my mind now).

As my PN got worse, the vibrations became worse in both frequency and intensity. Sorry to say, they was nothing that made them better but since it wasn't painful, it didn't really complain so much about them...I complained about the pain!!

I will say that I have had these vibrations less frequently in the last few years. I don't know if it's from the IVIG, or if the nerves are just too damaged. I asked my neuro many times over the years about the vibrations (but again, it wasn't at the top of my complaints, it was more of just bringing it up in case it helped him diagnostically), and he always said he couldn't do anything about them.

I know this information doesn't help you at all, but just wanted to let you know that I understand what you are experiencing. But I don't think you can do anything about it.

Yes, when I lie in bed & close my eyes it feels like the whole bed should be shaking but with my eyes open I can see that the bed's not moving at all. Feels like I'm on a train station & a train is roaring by. I'm very sad too. I've mentioned this sysptom and several others to various doctors & I can't face seeing the look or their faces any more. How many times will a doctor just nod their heads yes? How is it possible that NOBODY has made it their passion to develop a cure PN??? And, how can I possibly wrap my mind around the fact that I will have to endure the physical pain & bizarre symptoms of PN for the rest of my life? Can everybody tell how miserable, lonely, angry & despairing I've been feeling for over 1 YEAR???

My body shaking coincides with my pulse, its like my own heartbeat/pulse is moving my whole body, its very subtle but i notice it does it when i am still. I believe that my own heartbeat is moving my whole body. I heard from other sources that it could be if you are a skinny person, where you have no fat to absorb the "vibrations of the heart, so it just reverberates your body and making it move.
When i am still sometimes, my i get the sensation my body is like on a very shaky boat. side to side.

How is it possible that NOBODY has made it their passion to develop a cure PN???

PN as you know from this forum alone have more multiple causes, and majority of pn have unknown cause, even the ones that are known to cause it, has unknown triggers, and mechanism of actions. Its like asking the cure to cancer, which nobody is close to finding , because there so many different kinds like PN.

I have the buzzing vibrating feeling. It is mostly on my left side. I hate it. It comes and goes. It is not as strong as it was a few months ago. My neuromuscular doctor says this is a typical symptom for people with small fiber neuropathy. He didn't look at me like I was crazy at all.

Welcome Maryoochi. :Tip-Hat:

I'm glad your doc recognizes this, but it does makes me sad. I keep hoping that I don't have SFN but I seem to have every symptom in the extreme. I keep hoping this is just going to go away! I can't handle this. I don't want to live like this anymore. I have my biopsy next week. I'm scared of the results.

Hi Canagirl,

Sorry we strayed off topic, but sometimes Posts organically link to other subjects.

Anyway, I shake. Legs, hands and arms and head. When I'm a passenger in the car it can be so violent it makes the car shake on it's suspension when standing still.

It is with me all the time, but is made much worse in times of immediate stress.

Dave.

A while back there was a thread about fasciculations, in which I posted a link to a study that did skin biopsies on a number of people with "benign fasciculations" - and found that a high percentage showed decreased nerve fiber density. The implication is that fasciculations were a essentially a symptom of small fiber neuropathy.

Since my symptoms started as fasciculations, I previously spent a bunch of time on a BFS forum. The people with benign fasciculation syndrome frequently complained about buzzing. (And, I occasionally feel some buzzing as well.)

The "official" symptoms listed on the BFS forum include: Frequent muscle twitches (fasciculations or fascics), generalized fatigue, "pins and needles" sensations, migrating numbness, muscle cramping and/or spasms in the affected areas (usually the feet and calves), muscle aches and stiffness exercise intolerance, headaches, and itchiness. Often the symptoms will get worse at night, or during periods of sickness or viral infections, stress, or overexertion.

Although they don't specifically list burning, pain, or buzzing - many of the members report those symptoms as well.

Then there's the other name for BFS: "Peripheral Nerve Hyperexcitability Syndrome".

Typical prescription treatments for BFS are anti-epileptics, antidepressants, and anti-spasmodics. Non-prescription treatments include epsom salt or dead sea salt soaks, dietary improvements, magnesium supplements, etc.

Any of this sound familiar?? After spending time researching both "conditions", I really wonder if BFS and SFN are really just slightly different manifestation of the same disease.

Ragtop,

In all your reading about BFS, do you know if it's common/uncommon or unheard of to just have it in just one part of your body, like say your left leg?

Thanks.