Shaking or vibrating body?
 

Does anybody feel like their body shakes or vibrates all the time? It's like something is implanted in my neck, arms, back, legs that causes me to vibrate all time. It feels like millions of nerves are all during at once.

Does anybody here have physical damage to their nerves? I have this literally constant twitching or pulsing of my nerves that seems to start at the injury site
And go from there. Does this improve ?

Also, I have cut out carbs, almost all sugar ( small amount of berries in the morning, gluten for one month but felt no difference so I stopped. I have tried this for the past 6 months ( on and off) but feel zero diff.
Wouldn't u feel some improvement if this was working? I hater
Eating rhis way so it's hard to stick to when I don't notice improvement. What is ur opinion on this? It's a bad dream I can't u p from

The hot burning, pulsating hands and feet r not getting better just worse. I'm soo sad. It's like u keep thinking this is going to magically go away.
H

I wake up almost every morning "vibrating." The way I describe it is that I feel like I'm plugged into an electrical socket and have a low level electrical current running through my body. Usually though, as soon as I get up or start moving around, it subsides. Other symptoms crop up as the day moves on.

High blood glucose is a known and common source of nerve damage. 60% to 70% of all diabetics have some level of neuropathy. Unless you've taken the Oral Glucose Tolerance Test and know for an absolute fact that you have zero glucose issues, I can't imagine having neuropathy from ANY source and not trying to watch carb intake.

This is a good read, especially the case studies mentioned. I'm not saying this is your problem, but this is why the OGTT is so important for anyone with neuropathic symptoms. One of the major, well-renowned hospital websites (can't remember which one) says it should be a standard part of any neuropathic work-up.

http://www.jabfm.org/content/17/2/127.full

"The cause of polyneuropathy remains unknown in more than 20% of cases despite extensive laboratory testing. The incidence of idiopathic cases is believed to be even higher among patients presenting with painful sensory neuropathy. However, some patients with “idiopathic” painful sensory neuropathy have ultimately developed overt diabetes mellitus after many years of follow-up, suggesting that occult impairment of glucose metabolism may have been the cause of their symptoms all along. There have been a number of recent series suggesting than more than 50% of the patients referred to neuromuscular clinics with a diagnosis of “idiopathic” painful sensory neuropathy have abnormal glucose metabolism when they are evaluated using the 2-hour glucose tolerance test (Table 3). Of these, more than 50% have impaired glucose tolerance, so the fasting glucose and glycohemoglobin are frequently normal despite an abnormal glucose tolerance test. These incidences of occult diabetes and impaired glucose tolerance are significantly higher than those reported for the general population, suggesting a causal relationship."

What have your dr's said about this symptom? Mine look at me like I am nuts!

Also, has your high fat/low carb diet made a noticeable difference for you? Have you noticed any improvement with it? Or have you not noticed any improvement but continue on it to try and prevent progression?

I have had a fasting blood test for glucose (I am not sure what they test in this a1c?) and it came back normal. I asked for a glucose tolerance test but my doc said the blood test is better and since it came back normal I don't have any issues. He said the glucose tolerance test puts a lot of stress on the body and doesn't think I need to do it. What do you guys think?

My doctors just kind of shrug when I mention this symptom. It's just one of many odd things I feel.

I've been on the low carb diet since about October, although I had been cheating quite a bit which I've stopped doing. From a year ago, I can definitely say my symptoms have not worsened at all, and I'm pretty sure have improved. I say that I'm "pretty sure" because there's a big psychological aspect to this. I'm no longer panic-stricken by it all, and it's a fact that anxiety makes symptoms worse.

Without a doubt, though, the horrible zapping nerve pain is at a minimum now. That nasty pain would sometimes keep me from sleeping as I'd lie awake all night in misery. That's definitely stopped. I think that started improving when I started the R Lipoic Acid supplements, but it was also not too long later that I started cutting out carbs significantly.

I definitely am at a point now where I have more good days than bad, but there's never a day that I'm without symptoms. I've just kind of adjusted to my "new normal."

A1c is not the Oral Glucose Tolerance Test. A1c shows an average of what's going on with your sugar over a couple of months, but it does NOT show what's happening with your sugar on a daily basis. My A1c is perfectly fine, yet my glucose spikes high and stays high when I eat carbs. So for 12 hours a day, my glucose is probably at or near fasting levels , and for the other 12 hours a day (when I was eating a lot of carbs), my glucose was likely high. That probably averages out to something pretty normal, but the high daily levels certainly still could have been doing nerve damage.

Diabetes didn't show up in my OGTT, but the Reactive Hyploglycemia did. My regular doctor confirmed that I needed go low carb immediately and get more exercise.

Janieg

Thanks for the link to the 'jabfm' article - very interesting.
Makes me wonder why more doctors don't order the Oral Glucose Tolerance Test for people with PN - the usual HBA1c test (with normal results) doesn't seem adequate to pick up sub-clinical diabetes. It also seems that in some cases PN is an early warning sign that some people may go on to develop clinical diabetes. At the very least some of those given the idiopathic PN label could be helped by having this test.
I'll keep this info in mind when I finally get to see a neuro next week - not that I can see them having much interest in diabetes - I'll probably just get the idiopathic label. :rolleyes:

I don't know why the OGTT isn't part of the standard neuropathy diagnostic ritual. It certainly seems that there's ample evidence indicating it should be.

This is what the Cleveland Clinic says on one of its webpages:

http://www.clevelandclinicmeded.com/...hy/Default.htm

"It is important to screen patients for diabetes mellitus. In the past, a fasting blood sugar or hemoglobin A1c, or both, was often performed, but recent reports suggest that impaired glucose tolerance detected on a glucose tolerance test might provide more meaningful information regarding diabetes as a potential cause for polyneuropathy."

Thanks again janieg - you know where all the good articles are!

I was diagnosed with diabetes by OGTT (same day I had my Cancer dx), but every year I have HbA1c test to check my average levels. I have never been told to self-test daily or weekly, but that may change at my Annual Review due to new Neurological pains.

Dave.

a1C 5.8, symptoms as lousy as ever. I imagine the glucose tolerance test is a failure for me. I think I will discuss that next quarterly visit.

No one has actually told me to do the self-testing...I did that myself. When I didn't feel I was getting good feedback from doctors, I did my own research, and eventually went to a diabetes forum. Several people there took a look at all my results and said, "Yep, you've got a problem," and then provided me with links for learning about what's normal and what's not normal and how to learn what you can eat.

The process they described is "Eat to Your Meter." You basically test what different foods do to you and learn what you can and can't eat to keep your blood glucose at a reasonable level.

http://www.diabetesforum.com/diabete...tml#post131687

*************

Eat To Your Meter

Technique for eating to your meter:

- Establish your target range for blood sugar levels. Common upper limit is 140mg/dl = 7.7mmol/l. Commit to keeping your blood sugar under this level at all times.
- Test right before eating. Log the reading.
- Test again one hour after your first bite, and log the reading along with what and how much you ate. This is assumed to be about the highest peak - the spike - from the meal.
- Test a third time two hours after your first bite. This is hoped to show your blood sugar dropping back to roughly what it was before the meal. If it is, you're showing a good second phase insulin response. If it is not, you should continue testing until you find your blood sugar beginning to drop.

Analyzing these readings along with the foods you've eaten enables you to see which foods have the worst effect on your blood sugar, so you can avoid consuming them in the future.

It's fair to give each meal a second chance, in case there could be an outside influence on the elevated reading, but after two or three experiments, it is wise to avoid or sharply restrict the foods which drastically spike your blood sugar. After several weeks of extensive testing this way, you'll have compiled a personalized list of foods you can eat safely, for the most part. Not saying things don't change, and foods which were safe at one time could become troublesome later, but in the general scheme of things, eating to your meter is an excellent way to hold diabetes in check.

This can also be used to test individual foods such as fruits and things you suspect are going to spike you, but you'd like to know if perhaps you can eat small amounts.

*************

Because I already have neuropathy, I try to keep my glucose below 120.

Note I still don't know that this is the cause of my problems, but it's hard to not think it could be involved.

_______________________________________

Hi janieg

Did you mention to any medical professionals you see that this is something you were doing? If so what was their reaction? Thanks

These are the A1C guidelines set forth by the American Association of Clinical Endocrinologists which has more proactive guidelines than the American Diabetes Associations which most doctors abide by:

Hemoglobin A1C, % (as a screening test)

≤ 5.4 - Normal
5.5 - 6.4 - High risk/prediabetes; requires screening by glucose criteria
≥ 6.5 - Diabetes, confirmed by repeating the test on a different day

Thanks janieg,

I have already copy/pasted your Eat to Your Meter advice across to my Notepad so I don't lose it.

I have - along with Neurological Hypersensitivity - Neuropathic Facial Pain and, recently, needle sharp stabbing pains over and above my usual levels in my feet, legs and hands, sometimes up my arms and torso. It is definitely worse at night - like now - and my Ketamine and the Epsom cream doesn't touch it.

I am waiting for my imminent Annual Review to see whether this is a deterioration, or something new, probably Diabetes linked.

Dave.

The only doctor I've seen since I started this was my primary care physician who said "Excellent." She knows I'm being very proactive and actually asked ME at my 6 month check-up if there were any tests I wanted run. That kind of made me chuckle.

She's the one, though, who told me the OGTT indicated insulin resistance, and I needed to cut my carbs to 60g/day or less. The integrative medicine doc who ordered the test at my request didn't know what to make of the results.

As far as the neuropathy goes, my PCP is yielding to my neuro on it. I won't see him again until October. I've considered going to another one too just to get another opinion. I only live 30 minutes from Johns Hopkins, and I know there's a neuro down there doing research on neuropathy with even mildly elevated glucose issues.

Hi again janieg
Thanks for all the info. Was just sorting my bookmarks (the things you do on a rainy day!!) and refound this article which may have relevance to this discussion.

http://www.bpac.org.nz/BT/2012/Decem...ngGlucose.aspx

P.S. can I trade you my doctor for yours? :winky:

I have to do something on the diet side. Mirtazapine and Metoclopramide - and being so disabled - have made me pile on the pounds, especially in the last 2 1/2 years with the former. The latter works by emptying your stomach more rapidly, so I always feel hungry. Severe Depression, lack of distractions all add up to a recipe for Diabetic disaster. And I am not large all over, it is the dangerous stomach size I have.

Now I have a mental focus in this Forum, perhaps it is a good time to take control of my diet. Everything else seems determined to fall apart, at least I can control my size and be around longer to watch the bits fall off.

Dave.

It's interesting they're going opposite way the American recs are. I did find this, though:

"The OGTT is also an expensive, inconvenient and unpleasant test and very time-consuming for the patient and laboratory. For all these reasons, the NZSSD Working Party, in line with many other countries, has recommended that the use of OGTT in the diagnosis of diabetes be largely abandoned."


My primary care only sees patients 3 days a week, but I'm sure she could squeeze you in. :winky:

Love your sense of humor. :D

Just from personal experience, the low carb-high fat diet recommended on the diabetes forum has been a pretty easy adjustment. The best thing about it? You're not hungry all the time. Being hungry on diets always doomed me. You do have to give up all your munchy goodies, though, but less processed food cannot help but be a good thing.

Go for it.

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.

Is the BFS diagnosed by skin biopsy? It sounds pretty much like the same thing or maybe just one level below since it doesn't have the extreme shooting pain type of neuropathy.
It really sounds the same. Ive never heard of BFS.
This is interesting to me. I have always had hyperexitabliliy of my nervous system, but never this pain, spasms, twitching and autonomic dysfunction anything like this.

Ragtop,

I am familiar with the bfs forum. My first symptoms were twitching and vibrating and they lead to the bfs forum. It's actually how I heard of sfn. When I started to get more symptoms and in particular the burning I came across a few posters that ultimately received skin biopsies that confirmed sfn. Drs ( I think ) use it as a bail out. One neuro said I have bfs and refused to entertain the idea of sfn. As health girl pointed out bfs and sfn seem very similar. If they are so similar it seems ridiculous to me that neuros would put people in that category without biopsy to rule out sfn

I don't know what to make of this ( maybe it's even just coincidence). The areas that I rub my compounded cream on twitch, shake and vibrate less than normal. My cream has 10% Diclofenac and 2% amitriptyline. Diclofenac is an antiinfmammatory. Do u think my vibrating may be thousands of muscle spasms happening very quickly due to tight/tense or inflamed muscles? This symptom ( twitching and vibrating ) were my first ones and have been with me every second of the day for a year. Happen every second in all areaS at the same time ( hundreds all over every minute) effects do wear off after a few hours. I HSve been taking extra strength Advil but it doesn't seem to do the same thing. Tonight before bed I only put the cream on my feet ( both) left side of lower back and left side of neck. My entire left side of body is vibrating much less. Thus is odd bc both sides of my body do this equally. I don't know.. Anybody with more knowledge care to throw their two cents in?

I just wanted to ask how your symptoms compare to a month ago? Are you writing a journal? It can take a lot to distill what is useful over time. An example? Well, I have about three years (with a few "oh the humanity pauses involved) of journal. Pain scale just doesn't have the reverb I hoped and I stopped that after a few months. Yesterdays three feels like todays one in the mirror.

I usually note odd changes or that it id day so and so of this muscle in my calf soasming bad enough my leg is turning in. That sort of stuff.

I'm pulling for some relief for you.

Jon

I wouldn't think--
 

--that benign fasciculation syndrome and small fiber neuropathy are quite the same thing, as small-fiber neuropathy refers specifically to dysfunction of small, unmyelinated and thinly myelinated sensory nerves and fasciculation involves muscle, and even the smallest muscles are ennervated by more thickly myelinated nerve fibers.

There's nothing that says, though, that a similar originating process or etiology may be behind both in some cases. Moreover, it is common to have mixed types of neuropathy, in which both myelinated and unmyelinated fibers are involved. Often, a process that attacks the axon--the nerve fiber itself, instead of the myelin covering--will affect both small and larger fibers. (Small-fiber syndromes, by definition, are axonal; larger fiber syndromes can be axonal, myelin-based, or both.)

Many of the BFS'ers talk about "hot spots" - an area that has the highest concentration of fasciculations. But, for many people the hot spots move around and I would say that very few had the symptoms limited to one specific area. Again, like SFN - the symptoms can wax and wane, change location, etc.

The term "benign" in BFS is much the same as the term "ideopathic" applied to neuropathy. So, BFS is a diagnosis of exclusion. As with neuropathy, you would typically see a neurologist and get MRI's NCV, EMG, blood tests, etc. - mostly the same tests you would get for neuropathy. If you are having ongoing muscle twitches without any evidence of a cause such as ALS, MS, etc. - they would diagnose you with BFS. They also have more severe cases that include muscle cramping (sometimes called "cramp fasciculation syndrome") and the most severe is neuromyotonia where your muscles essentially lock up because the motor neurons keep firing continuously. All of these fall under the umbrella of "peripheral nerve hyperexcitability syndrome". Kind of confusing since several different names are used.

I suppose you are right. BFS is by definition a benign condition which involves the motor neurons but does not include any damage to them. The neurons are firing but it is unclear why. Maybe it would be more appropriate to just say that BFS can be a symptom of SFN - rather than to say they are the same thing.

I have on and off but not right now. It makes me really depressed to write things out and sends me to a mental breakdown. Plus, none of my neuros care and don't let me tell them all my symptoms antway. They look annoyed when I pull it out and don't let me past the first few symptoms

Ok, thanks. I ask because I've had neurological symptoms in my left leg since 1986. It consisted of paresthesia and twitching mostly, but was confined to my left leg for 27 years. Then on Nov. 10th, 2013, I woke up, and everything changed. I had classic SFN symptoms in both legs and other neuro sensations body-wide.

I'm so weird.