Chris- first and foremost, I want to validate your feelings. It’s been 9 months total for me and I’ve had 4 NCV test and 3 EMGs - two of which were done at The neuromuscular clinic at Emory University and also at Mayo in Rochester. I had twitching in the same spots for weeks at a time and twitching all over. Like yourself, I was in a complete state of worry and despair. And i also did what you probably did which was google the heck out of ALS which made my fears even worse. Because if you did like me, you know ALS is basically different for every person and you probably are having a hard time letting go of the idea that “what if Im that ALS anomaly that takes longer to diagnose,” since there are all sorts of stories about how the PALS developed it. So you also know if you’re showing NO signs of upper and lower MN issues, that a doctor will always so NO ALS bc you dont have it. And it’s never comforting when they say, “i can tell you that today you dont have it but can I tell you that you wont have it in the future, no, because anyone can get it for no reason at any time.” And that’s the truth. What I can tell you is that I understand your fears bc I’ve been in those trenches with you. I have twitching, cramping in my left leg, sometimes I have a hard time swallowing or feel like something is stuck in my throat, i have a tongue that burns some days, my left hand sometimes feels “off” like I cant get it to do what ai want it to do. But every time I go back to the neuromuscular neurologist who works at the ALS clinic with ALS patients all day, she says, “please go live your life. You do not have ALS. You’ve had 3 EMGS all clean. You pass all the strength tests, nothing is wrong with your speech.” I have EBV too. Not sure when or how many times it has been “reactivated.” But last time we checked my antibodies they were 900 fo IGG (non ebv range is 0-20) so mine were off the charts, clearly. I do think there’s a connection just not sure how to fix it. Once fibro is there, it’s a life long thing, from my understanding . Hugs!

Welcome Chris to the best site you could have joined! Did your rheumatologist do blood work and x-rays to rule out everything else? As far as I know the only way they can tell you have fibro after all the above work is done, is by the pressure point test! There are numerous pressure points they touch and gently push and if you react pain wise to the majority of these spots, that usually means you have fibro! However my first time having it done, I didn’t react to enough but went back a year later and sure enough, I passed this time with flying colours! Sounds to me like you have it with the stiffness for the first few hours in the morning and assuming you have pain throughout the day! No the pain doesn’t necessarily put you in bed everyday, especially at the beginning! Also, yes the pain can go from one sight to the next day to day or even hour to hour! Again, yes the fatigue is definitely a sign of fibro cause our body is constantly fighting the pain so you are always tired! As for the twitches in your calf, I would say it could definitely be a symptom as everyone is different! I do get the burning pain in the butt cheeks and outside lower back if I walk too long and I used to walk miles when I first started getting this 10-12 years ago! As time goes on, I hate to say it but your symptoms definitely become worse! If your doctor didn’t do the pressure point test have him do it and if he has, go back in a year or six months to see if it is now showing up! No questions are too silly to ask on here because if not for this site, I’d never have known stupid things like burning tongue, burning bottoms of feet, Charlie horses and so many other things are related to fibro! I wish I was welcoming you to a site that was about something different but you have come to the right place for fibro! Hugs!!

Over the yrs my fibro impacted different parts of
my body. Back, neck, shoulders, arms, elbows, scalp, TMJ, were almost always impacted to varying degrees. Hips, calves, feet. But then there were the headaches, ringing in the ears, very sensitive to any touch. It varies a.m. to pm, day to day, week to week. Once the root cause of my scenario was determined and treatment initiated the pain resolved in approx 3 wks. The treatment was initiated 18mo ago and have had very minor sx when I “cheat” on the treatment. The root cause of my sx is Chronic Yeast Overgrowth and the tx is diet. There are other viruses that can also be the causative factor. I was referred to a holistic clinic so able to have the needed lab work done to ID that factor. Our clinics and hospitals are not able to run that particular lab. For 25+yrs the symptoms were what were being treated and the pain was never resolved, it just moved around.

I have twitching but only when i have a flare up.

Researchers at MassachusettsGeneral in Boston have found a connection between eb and fibro. They say that a person with a genetic predisposition to fibro contracts eb at some point then something triggers it. I'm no doctor, but all of your symptoms sound like fibro.