Twitching and pain for almost a year, worried!

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Twitching and pain for almost a year, worried!

Postby naturalbornworrier on June 19th, 2014, 12:41 pm

Hello, first of all I just want to say that I have been a frequent visitor to this site since October 2013 and you all have been a fantastic source of information/assurance for me. Thank you to everyone that posts such caring and informative replies. I never thought I would actually end up posting something on one of these sites, but I’m just at my wits end and am hoping to find someone who maybe can relate to what I’ve been going through. First a little background on me: I have been suffering from health anxiety for pretty much my entire adult life. Since I graduated high school, I have been through the ringer thinking I have had a brain tumor, pancreatic cancer, you name it. But nothing has compared to the anxiety I have been experiencing over the last 10 months. I am completely terrified that I could have ***. I am a 30 year old female, and my only confirmed health issues are a hiatal hernia/GERD (which I took PPI’s for for about 10+ years, but finally was able to get off of last year) and a small nodule on my thyroid. I also have a history of bulimia in my 20’s but I have pretty much fully recovered from that (terrible I know).

The symptoms that lead me here started at the end of August 2013, so it has been almost 10 months of this misery now. I literally felt fine one day, and then the next the nightmare began. The only thing I can think of that was a little off in the days prior to this whole thing starting was that I felt kind of bloated, and wasn’t really having good bm’s. I made myself vomit one night after dinner when I felt super full and uncomfortable (but I hadn’t been ‘purging’ regularly for a very long time, and I haven’t been doing it since). Then the next day I started just feeling weird. For that first week my stomach was just like super distended, so much so that I looked pregnant (I am a fairly thin person so this was alarming to me). I developed a pain in the center of my chest that I had never felt before, a constant feeling of phlegm in my throat, my tongue felt burnt all the time, and the entire right side of my body (arm and leg, hip, butt on that side) was sore, with aching pain that felt kind of like growing pains. With my hiatal hernia/acid reflux issue, I was pretty concerned with the chest/stomach pain so the leg and arm pain I kind of brushed off and it was not my focus. I saw my gastroenterologist who agreed to perform an endoscopy. He diagnosed gastritis and esophagitis and prescribed me an anti-ulcer medication that I took for a few months and it totally relieved the chest pain and bloating. Thank goodness!

But around the same time, the right sided aching of my arm/hip/butt/leg continued, and I developed muscle twitching all over my body (around October 2013). My right leg also started to feel “weaker” and still does to this day but I can still do everything I want to do, I just really notice the feeling, almost like a tickle or a funny bone sensation when I am driving, esp when pressing down on the brake. I can’t really remember if the twitching truly started everywhere, but I definitely remember seeing/feeling it in the middle toes of my right foot, then the right leg, and then a while later it was all over including the toes of my left foot as well. At this point ten months later I get twitching all over my body, from my toes to the arches of my feet, to my thighs, to my arms, stomach, hands, eyelids, face, tongue, lips, etc. EVERYWHERE! They are very visible and uncomfortable. What really has been bothering me lately is the twitching of the pinky toe on my right foot, it seems to be correlated with pain in my leg. The toe just jumps up and down like it has a mind of its own, and my leg just aches so bad! Very scary!

So at that point, in the fall of 2013, I was reading a lot of things on the internet and of course I saw that a lot of my symptoms are similar to ***, so I started freaking out. I also began analyzing my body and noticed that my right leg is definitely smaller than my left leg in the thigh muscle and calf muscle. Of course I was scared to death that I was experiencing atrophy. I began measuring my leg and I have been measuring it in 2 spots since December and it has not gotten any smaller, so after 6 months I am hoping/praying I do not have atrophy even though it is clear that the right leg is smaller. Maybe it was always smaller than the left (even though I am right handed)? But with all my pain and twitching it makes it hard to believe that the smallness has nothing to do with it. I also began having strange sensations, like water being poured on my right thigh when I would get up and put weight on it. I had that for like 6 months off and on but I haven’t felt it in a few weeks thank goodness. In December 2013 I made an appointment for my leg pain/twitching with an orthopedic dr. They took X-rays and thought I had something called L-5 Spondylylisos (sp?) but an MRI ruled that out. So because of the twitching and strange sensations, they referred me to a Neurologist. She did some strength tests which were fine, and tested my blood for inflammation markers and Lyme disease, both of which were negative. Finally in February 2014 she performed a NCV/EMG to put my mind at ease, and I passed both. I never saw the results but she said, “This rules out all the bad stuff” and that my nerve study was perfect and she didn’t even see any fasciculations on the EMG – crazy because I twitch all the time! She referred me to my primary doctor to perform blood testing for autoimmune/vitamin deficiencies but all my blood work was normal. So I was ecstatic after that, but here I am a few months later and my symptoms have remained if not gotten worse!

In March, I started feeling pain in the bottom of my right foot off and on. By June (currently) the bottom of my right foot has weird sensations of twitching/tingling/numb feelings (like in the arch). My right toes painfully twitch a lot, and the twitching all over my body is just relentless. I haven’t had a twitch-less day since it all started. My primary doctor couldn’t find anything wrong with me so she referred me to physical therapy. When they analyzed me they said something was out of alignment in my right pelvis area and I have a knot in my right piriformis muscle (in my buttock) which can sometimes irritate the sciatic nerve. I have had sciatic pain in the past but it was always a burning sensation that went away with Aleve or Advil. This leg pain that I’ve had for 10 months does not go away ever. It gets better when I sleep at night but it always comes back. And now the bottom of my foot is hurting me too, so I just don’t know what to think anymore.
I know my age and the way most of the symptoms started off at once is not really indicative of als, but I am still so scared. I really thought after having a clean emg I would start feeling better but its just not going away. Has anyone out there experienced anything like this, or do you have any advice for me? I have tried anything and everything (magnesium, vitamins, etc) but nothing has really done the trick to stop the pain and twitching. I don’t have any problems with balance or tripping/falling/anything like that, thank goodness, but I do “feel” weaker on the right side, but again I can still do everything I want to do, it just hurts. Could this really be some kind of anxiety? I did have a really stressful month (July 2013) before all this started but I am not stressed at all anymore. Could it be something like MS? Does this sound like BFS?? I get worried b/c its mostly one sided (other than twitching) and I am just desperate to feel normal again. Another reason for my desperation, I am at the point in my life that I would like to have a child soon, but I am petrified to get pregnant with all this twitching and pain. If I knew for a fact it was benign I think I would be ok with it, but its just so hard to convince myself that I am ok when I twitch darn near 24-7!

So in closing, I have had lots of weird symptoms over the last 10 months, some that have gone, some that have stayed, here is the best summary I can think of:
• Chest pain – gone
• Stomach bloating - gone
• Feeling of mucous in throat – still there on and off throughout the day
• Tongue scalloped on one side – still there
• Tongue feels burnt – gone
• Twitching all over body – still there
• Extreme jaw pain on left side – had it for 3 weeks and it went away
• Tremor in left ring finger – still there
• Pain in right leg/foot – still there, hip and butt not quite as bad anymore
• Weak feeling in right leg – still there
• Sensation of water being poured on right thigh – haven’t had it in a few weeks
• Random cold/water like sensations in different parts of both legs/sometimes on arms – comes and goes
• Buzzing/vibrating feeling in right shin and above left knee – comes and goes infrequently
• Bubbly/crawling feeling in feet – still there
• Heat sensation on soles of both feet – still there off and on
• Tingling/pulling sensation on bottom of right foot - still there off and on, just started fairly recently
• Right leg muscles smaller than left leg – still there

I’m so sorry for how long this post was, just didn’t want to miss anything that I’ve felt over the past almost year! If anyone has any advice for me, or has experienced something similar, please let me know. Thank you so much.
New Member
New Member
Posts: 2
Joined: June 6th, 2014, 7:59 am

Re: Twitching and pain for almost a year, worried!

Postby Yuliasir on June 19th, 2014, 1:05 pm

hello dear,
twitching 24/7 for 10 month for a person with a story of previous health anxiety means first of all anxiety disorder bout and then BFS (saying that overly concernig a full and detailed list of symptomes, most of which are hallmarks of BFS+anxiety but never were reported as typical ALS onset).

Pain, paresthesias, buzzing, burning, etc. are not common for ALS. But they are extremely comon in BFS.
People with ALS in 10 month from onset usually are pretty disabled, which is not your case.

EMG never acts as a treatment (it does not stop twitches) so it does not help to heal BFS. It just clears you from MND, and that has to be accepted even despite on the fact that twitches will persist. I had my own ENG almost three years ago and I still twitch on daily basis, have cramps sessions, weird sensations, pains etc.

hope this may help a bit.
usually psychotherapy and tight schedule helps a lot but as a person with the history of bulimia you must know that already.
User avatar
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Twitching and pain for almost a year, worried!

Postby naturalbornworrier on June 20th, 2014, 12:50 pm

Thanks Yulia! Your reply has definitely helped ease my mind a bit!
New Member
New Member
Posts: 2
Joined: June 6th, 2014, 7:59 am

Re: Twitching and pain for almost a year, worried!



Return to Questions About BFS

Who is online

Users browsing this forum: Bing [Bot], Google [Bot] and 7 guests