Hi Tika, Today is 9-29-08 and I just read your post dated 7-28-07. Have you been been given a new diagnosis and treatment since you wrote that? I was just diagnosed with M.S. and after reading your post, I am wondering if you have multiple sclerosis. Have you been tested for it, which means -- have you had an MRI, a spinal, and a complete exam by a good neurologist? If you care to write me about it, please do so.
I have numbness, tingling that turned into fasciculations and eventual nerve pain, and finally a diagnosis of M.S. I have other symptoms of M.S. as well but the nerve pain is constant. I hope you are doing better. I don't like the way doctors have treated you .... or have treated you incorrectly! Linda

today is 11/12/08 I was reading your post, I think you are my Twin...I feel the exact same way you do, I have to say i am so sorry for you because I know how you feel and its very painful, Everything you spoke of I have.. Its been going on for about two months now, My doctor said she can not find anything very wrong with me, I went to see a neurologist and he also cannot find ANYTHING...I also have four children all c-section and I wonder if that may be the reason im feeling like i do, My doctor did check my vitamin b12 and found it very low and the neurologist told me that low b12 can cause permanent nurve and muscel damage. or take up to a year to correct. ALSO in june 2008 I took a hard fall while rollerblading, he said that i may not be compleatly healed from the fall....WHO KNOWS....My doctors look at me like Im CRAZY they put me on paxil, Layrica and nurotton I have since stoped taking all medication and have been try to deel with the pain on my own, I have four YOUNG children and cant afford to be in a FOG all the time, I had a sever reaction to the layrica and the nurottin makes me VERY sad, I was crying ALL the time...I hate feeling this way, I wonder is it going to get worce? will I have to live with this the rest of my life? I have know answers..I did have an MRI/MRA...a C-scan...all the blood work that is possible...still nothing is wrong...can you e-mail me back and let me know if anything new has come up...or if anyone out there reeding this post feels the way I do....please e-mail me and help me try to figure out whats wrong, maybe we could work together...thank you.

I have these things I call "nervous patches"...

When I am stressed about something they will pop up in the strangest places. Today it's on my right shoulder blade. It feels like something is burning under my skin. There are no outward signs.. no rash.. no breakout.

It's usually about the size of the of your hand. I have had the feeling on my leg.. on my hip.. between my toes..

It is the strangest feeling. Seems like any stress I have shows up in this Nervous patch !! It eventually goes away but is so annoying when it's happening. Usually happens a couple of times a year.

Any clue or advice on what it can be?


Wasn't sure where to post this.. I am new at this !!

I have the same symptoms. I have been getting twicthes / tremors all over my body. All painless, but I do feel slightly fatigued after the episodes. The twiches in my temple area made me most nervous. Recently, I moved to the Boston area from New York and saw another doctor who is MUCH more helpful and knowledgable compared to my docs in NY. She immediately caught the vitamin B12 deficiency via bloodwork and I have a follow up visit with her next week. I've been drinking plenty of vitamin water (great source of B12) and staying away from alcohol altogether. the problem might be that my body is unable to decompose and use B12 as it is supposed to, but I'll find out more next week. I am feeling slightly better since I started consuming these beverages, but I don't think this 6-8 month problem is going to reversed immediately. for now, at least the twitching in my temple has subsided substantially. I'll try to post here again.

It has been a year and a half since I wrote my first post and I have been through the ringer with primary physicians, neurologists and I even went to a chiropractor to see if I need a spine alignment but nothing helped. I am still suffering from the same twitches all over my body unfortunately and I am no closer to a cure now than I was a year and a half ago. I have been searching some homeopathic medications though.


I will try each one of these medications to see what happens and make sure to post a follow up reply and let you guys know if they work. If they do I will be sure to let you and "the world" know. There is no reason why we should be suffering from anything for this long.

Sincerely Yours,

Tika

Ps. Good Luck

hi,

i happened upon your post. i have BFCS, which is BFS with cramps. i have had it for nearly 10 years. my neurologist says it is genetic. nothing he gave me helped.

people dont understand what this does to your life. on the surface, you are okay but your energy and emotions are all over the place. no one believes you or they think youre a lazy hypochondriac or suffer from depression (you do, but not the ordinary kind).

i researched this to death, it took 2 years to get it refined. i have some info which helped me. my symptoms were identical to your own. i have not cured it but improved it drastically and can almost work again. i will state some opinions which are not from a doctor, only a sufferer:

first, the tendency toward this may or may not be genetic. i have a bit stunted growth, a sort of child-like body. since excersise intolerance is a big part of BFS, it makes sense either way--I always wondered why I was so much weaker than others.

in my opinion, this illness goes through 3 stages:

1) the genetic predisposition with excersise intolerance, weakness, emotional distress, anxiety. often there are learning disabilities and ADD.this can be present from birth and escape detection.

2)the twitching and/or cramping, which starts small on the face or fingers and spreads. it can become quite disturbing and tiring, but is not directly dangerous.At its worst there were maybe 20 twitches a second, I felt like I was in a bowl of rice crispies.

3)Later, it entered a 'fibromyalgia-like'condition which felt very much like fingernails on a blackboard, but this screeching discomfort was so generalized it was hard to explain where it was coming from, it was everywhere in my body and mind. I stopped going out, it was just too hard to cope with a simple conversation. I was constantly in pain. often it was coupled with an elephant-like crushing sensation right in the middle of my chest which would go on for months. also, i had moments of emotional instability which ALWAYS felt like people has turned against quite deliberately, a form of paranoia. asthma, rashes, chemical sensitivities, arguments would appear when I was stressed. The worst symptom of all was a buzzing or tremor that was like the worst caffiene attack, but intermittent and at all frequencies.

There were many more symptoms but I am sure you know exactly what I am talking about.

In my opinion, you should resume the dilantin immediately and also the magnesium. They are both safe and help Stage 3 symptoms dramatically. I began Dilantin after what I call stage 3 had begun for 2 years; and it eliminated approx 80% of the (STAGE 3) symptoms, meaning the fibromyalgia-like pain and the emotional instability. also the brain-fog and ADD improved noticeably.

Notably, the twitches and cramps did NOT go away, but the force of them was reduced significantly to where they are no big deal anymore. Also, I am still fatigued all the time.

But the TREMORS and ANXIETY improved a lot. They were the symptoms that were most dramatically affecting my quality of life.

I'd like to also speculate that the constant stress and exhaustion that this disease induces cooked my adrenals and I now have a bad case of adrenal fatigue or worse. This did not come to light till I started the Dilantin, as it uncovered the deeper symptoms.

I have to take 300mg of time-release dilantin daily(pretty high but still safe). I can feel the result in 30 minutes.

For the adrenals, I use ADRENERGIZE by Enzymatic Therapy. Don't get the herbal version, get the one with real adrenal cortex. PS thats a good company, their supplements work well. I take 2 in the morning and 2 at 4pm. I also take 25 mg of DHEA in the morning.

I also take 450 mg licorice capsules from Solaray. I take 2 of them when i take the adrenal caps. So that's 4 a day. DO NOT take licorice if you have high blood pressure, it raises it!

The adrenals make cortisol, in this illness it may be low. You need to find a cortisol supplement. I use a skin rash cream--i rub a pea-sized amount on my arm after i take the pills, dont get it in your mouth. Cortisone must be taken under a doctors supervision for a limited time (3-6 mo) and not be abused or it will further damage the adrenals! not kidding either-- the idea is just to give them a little rest so they can heal.

Stress reduction is essential, the fact that most of us get this after a life crisis or a virus is an indicator of what is really going on: a stress-aggravated condition that somehow involves the adrenals.

good luck.

Geza X

Hi Tika,

I was recently diagnosed with fibromyalgia, my symptoms started in my feet. I am a barber and I noticed at work one day that I was getting cramps to where my toes would curl under. From there it escalated into muscle twitching in my legs then finally all the way to my face. Then came the numbness, tingling, pain, and the worst severe fatigue you could imagine over time. My neurologist put down BFS as a symptom rather than the actual problem. It's been almost 3 years since I was finally diagnosed. I made a second trip to Mayo clinic, which was the best decision I ever made and had every test imaginable retaken. I was diagnosed there with fibromyagia by two of the best doctors I've ever seen! The rheumatologist told be that I had fibromyalgia more than likely from the mono that I had prior to these crazy symptoms. My neuro there also told me that my tremors, muscle twitches, numbness and every other symptom I had was fibromyalgia!!! I was so happy to finally find out that it was the same problem, because for a while I thought I had MS too. Fibromyalgia is a complicated disorder that alot of doctors still don't understand but it's believed to be a disruption in the nervous system that causes neurotransmitters in the brain to become unbalanced causing all kinds of awful symptoms mimiking ms, and other diseases. We are all different, but for my fibro I decided not taking any meds because most of the side effects made me feel worse. I exercise every day, even when I don't feel well. Try to eat more fruits and veggies. And I pray alot. I know this isn't going to go away, so I deal with it the best I can. I hope that everything goes well for you.

god bless

Jessi L

I was and am experiencing the same symptoms. At first, I was diagnosed with blood clots, then came migraines, now migraines come after seizures. I have something called a progressive essential tremor. I was also recently diagnosed with Lupus. I can not bear the pain...it is miserable....sometimes i cannot get out of bed and i have 5 kids. The neurontin made me drunk and I was awake for 3 days straight. I gave up on the nerve pain - it hurts but my children need me more.

Have you been to an infectious disease doc and a rhemo doc? That is what my plan of attack is at this point. No one knows what is going on...they just know I am losing weight, I cannot keep my hands still,a nd my breathing is dropping. Nothing makes sense. Docs treat me like a street walker.


Keep your head held high. You will overcome and adapt. That is what we do as parents. If you find out something, pls let me know. I was the pain to end. I want to be with my kids playing football and manhunt in the yard again instead of sitting watching.

Jen

I have been suffering from these twitches for most of my life. I am experiencing them right now as we speak. I have been to several different doctors, I had CT scans, MRI's, EEG's everything. All of my tests come up normal. However what I am going through is not normal. The twitches use to be just irritating as hell, now when they become real bad i get sharp pains through my head. I now have a new PCP who is looking into it, but im sure this is going to lead to a dead end as it has throughout the years. Im frustrated and tired of living like this. I can't relax like a normal person because thats when it becomes worse. If anyone has any answers i would appreciate them.

Jamila

i am a young man at the age of 15 and i don,t know why this is happening to me. i read sevral articles on twitching all over your body and none of them make sense to me because it says thati should be over the age of 40? but i have been getting random unexplaind twitches all over my body for the past three years now. to me its one day there is a little section of my thigh that twitches and another it is a random spot on my shoulder or bottem. but the reason i am conserned now is that my eyelid has been constantly twitching for sometimes days all at ones. i dont know if i should tell someone or do something about it. i also read other peoples entries and they say that the twitches go from just small annoyances to full on seizers that worry me. what should i do?
Twitches in the last 20 minutes -
Bottom
back
right thigh
eye lid
right shoulder
stomach

-Anthony

tikaouten & everyone with symptoms - Read your article, I've had the same symptoms for 2.5yrs now(twitching everywhere, even my eardrums) and fibromyalgia for 12 yrs. Mine started after I had an epidural during labor. I was then in a car accident about 6mo later. I was also born with Ehlers-Danlos syndrome (overly flexible joints) and it's easy for everyday motions to cause injury to my muscles and joints. I think all of the above aggravated my nervous system and adrenal system. I started having real issues sleeping, too. After all these yrs of trying pills (and I've tried them all) with no success, doctors saying is depression or not believing me (I'm not depressed, except with lots of pain). I have found my best days are when I've had very good deep (REM/dream) sleep and pain control. I take mobic (like celebrex, but milder) 15mg everyday, Ultram ER (extended release, taking the generic tramadol every 4-6 hours doesn't work) 200mg daily, 2 organic Barlean's fish oil caps daily, 2 magnesium citrate caps(1 durign day & 1 at night, to help the muscles relax, and ward off constipation), at night I take melatonin 1.5 mg (if needed), powdered calcium/vit D to help relax muscles and induce sleep, 1 Kava Kava pill (if needed), and 1 darvocet (only on really painful nights, if needed). I don't take all the night pills together, I rotate between them, because my body gets used to them and they don't work as well, if I don't. I used to take flexeril, for muscle spasms, but realized after about 6mo., they made the twitching even worse. And I drink tons of purified water, dehydration can put me in pain cycle for weeks. I have found sleep (real restful sleep) is the key to my pain and twitching. Hot baths in epsom salt forces my muscles to relax and walking/yoga/stretching and breathing exercises also help. Keeping myself occupied with positive thoughts and activities, helps divert attention from pain signals. One of the best things I have found to work for all my symptoms, especially sleep problems; is acupuncture. My insurance began covering it years ago, then quit and now covers it again. And if you can afford it, even if only every few months, is massage. I get pressure point massage(& learned how to do it for myself). I hurts at first and you are sore for a few days, but I drink plenty of water to help the toxins flush out of the system and by the next week I feel brand new and with the next massage sessions there is less and less pain. And having an understanding support system (family & friends), is always helpful. On my bad days they are there to get me out of bed and out of the house, to refocus my mind & get me through the pain. They pray for me and I pray as well. Stay persistent in finding what works for your body and symptoms and keep your head up. Communicate with others and express your feelings.

Hey Tika...I feel the exact same way. Every time I go to the DR. they said that I am an anxious student and wrote me off. Though I have had every test in the world done: blood tests for everything, MRI, Evoked potential, eeg, emg needlestick testing...they havent found anything. I will tell you this, being a student in the profession, a good doctor is able to tell you that they cannot diagnose something...a bad doctor will say one thing or the other because they are afraid to admit that they dont have a diagnosis. I am convinced that I have bfs. I have had symptoms for approximately 8 months now. Though I am still fully functional, I still feel weird. I have all your sxs along with others...they include tremors, twitches, buzzing/shaking feeling and horrible health anxiety. I am not sure if disk degenration (as I do have s ome mild djd) can cause these symptoms...if you are still functional years after the development of the sxs I am confident that you can rule out more potentially serious diagnoses such as ALS, MS, etc. Good Luck.

You know, its incredible how many people seem to suffer from this. I have come to believe I have BCFS ~ BFS with severe painful cramping. I started out with severe cramping in my legs mostly- about 4 years ago. Every part of my body has at one time or another, been effected however, including my neck. My fingers will actually lock into place for a moment before I use the other hand to uncramp them! The most severe of these cramps will take me down and reduce me to tears as they bombard me for several minutes at a time before I can get them under control. They are random, unpredictable & fluctuate in severity.

Contrary to what I have read on this forum, I was never weak muscled! In fact, all my life I have had excessive musculature for a woman who is not weight lifting. I have found though, that in the last few years I have grown muscularly weaker. I have an ongoing lung condition and asthma that has also gotten progressively worse over the last few years. I had moved the year before & wonder if the change of climate from West Coast to East is responsible for all the changes or if there is some underlying condition creating all this havok!

Depending on the day I may or may not fit the profile of someone suffering from fibromyalgia. I know that on some days, a hug from my child will make me start crying in pain. The key stress points of Fibro are sometimes there other times not. I don't understand that either. Sometimes I seem to be able to muster the energy or stamina to make it around the block which I try to do to rebuild my body. AGain, my lungs are effected so on the months that I am worse in that regard, I am unable to breathe well enough to make the trip, but this is different. I have always been a great walker with tons of energy. Now, I find I am lacking any energy at all, and really simple things I will avoid because they will either cause pain or sap me of energy in the doing!

Lack of insurance of any kind and the inablity to work due to increasing symptoms of seemingly unrelated issues are yet to be diagnosed. I have been searching for an answer to this for years and what little medical care I can afford does not come with a diagnosis that makes sense.

Only in recent months have I been able to find this condition of BCFS as a self diagnosis. Prior to that, I waited 2 years for my 'community clinic' dr to diagnose me and she came up with diabetis!! It does NOT explain any of the severe cramps or constant twitching in my calves!

Obviously we all are very concerned & frustrated because we are not getting any real help. Questions being answered would be the best help if only to ease our minds of what we definitively have and can expect. But I do have two pressing questions:

If this IS a muscle condition that does not discriminate which muscles it will attack in the human body, what then is to keep it from attacking our hearts which are essentially a giant muscle?? And how would something like THAT possibly be concidered benign?

The other question is: What evidence is there that BFS is viral related?
What information has anyone found regarding this possibly being related or brought on by a virus such as occurs with Bel's Palsy? Lymes disease is concidered a possibility for bringing on Bells which is an inflamation of the 7th cranial nerve. It is not concidered an inherited disease nor a contagious one, YET the first time I ever heard of Bells palsy my boyfriend had it, as did his mother, and a year later my 16 year old daughter! How is this possible for something not concidered contageous? Dunno!!! And no reason was ever found for her affliction but 6 years later, when she was in the navy she had a tell tale ring of lymes.

Ok... why am I mentioning all this?? Because MS is one of the things most Lymes patients are initially thought to have! ALS & MS were both ruled out for her and now I have all these wierd symptoms in close timeing to her own issues? Cramping, Ticks, Tremors, Numbness, paralysis, nerve pain & CFS... Too many seemingly unrelated pieces can neatly fit together here.

i too have been experiencing muscle twitches all over my body jan will be a full year... my doctor has told me its just stress and i have been cleared of ms or any other neurological disease also the rheumatalogist ruled out fibromyalgia..18 mos ago {may 08} i suffered an injury i fell hit my head i had a few sprains and broke/dislocated my finger.. therapy only made my symptoms worse so i stopped it. Fast forward to December 2008 i started doing home exercising it was a lil intense early jan the all over muscle twitching started severly it felt like somethingwas crawling under my skin... Flexiril did work but i couldnt be doped up all day..i did think that i could have parasites in my body i did a parasite cleanse, reflexology a massage therapy. the intense twitches stopped but i still get them i noticed around july the twitches had stopped i started to exercise again and they started up again. i am now finishing my second parasite cleanse and will try to see a traditional chinese med doctor they will look for the root of the problem not just treat the symptoms.. i will update soon.

Anthony1994
you should inform someone of your problem.
i wish all good health

I look forward to hearing what you find... I like holistic healers & such because they really do try to find the problem, not mask it will drugs or slappin a bandaid on it, tellin ya you'll be fine...