Body-wide twitching and pain ruining my life!

[DavidMC94]

Hi there, I’m new to this forum and this is my first post. Unfortunately it’s going to be a lengthy one.

I’m 18 years old, and lets just say I’ve not had the best luck in life (a lot of family problems), and I‘ve grown up to expect the worst. A few days before Christmas 2012, I started getting severe pins and needles in my hands and feet (this lasted for days). I also began feeling dizzy, and started having severe panic attacks. I was seriously convinced that something was wrong (I felt like I was going to have a stroke), so I went to see the doctor. The first doctor (not the doctor my family usually sees) told me it was hyper-ventilation (rapid breathing), and there was nothing to worry about. This calmed me down for a few days, until the same symptoms returned, I then went back to the doctors. This time I saw a second doctor (again, not my usual family doctor), and I was prescribed Propranolol (an anxiety drug), and was referred to a therapist for health anxiety.

After I began taking the Propranolol, the pins and needles, dizziness and panic attacks stopped. However, I began to experience body-wide aches and pains (what I describe as a dull/achy ‘nerve pain’) and some fasciculation’s. I did the stupid thing and Googled these symptoms, and stumbled upon Multiple Sclerosis and Motor “you know what” Disease (I noticed you guys love to censor the term). As you can imagine this sent me into panic mode again, and the twitching spread like wildfire.

I have been experiencing this weird body-wide nerve pain and twitching since around mid January 2013. When I say body-wide I mean my face, ears, neck, back, stomach, shoulders, biceps, forearms, hands, fingers, thighs, calves, ankles, feet and toes. The only place I haven’t twitched is my tongue (although I’ve probably jinxed myself now). I also get ‘buzzing’ sensations in my feet. What made things worse, is my Grandmother (who is also a fellow hypochondriac) happened to mention that someone in my family died of M*D aged 23! Now I do love my Gran, but sometimes she doesn’t know when to ‘keep quiet’.

It turns out that this unfortunate person was my fathers cousins son, so there is basically no genetic link between us, and neither of my parents have been diagnosed with any deadly neurological diseases as of yet (my Grandmother also deals out a lot of misinformation). A few days ago (Monday the 25th of March), I finally got to see my family doctor, and told her my worry of M*D. This lady is an experienced doctor (she noticed a hole in my little brothers heart when he was born, that none of the hospital doctors did), so she knows what she is looking for. She basically told me it was all stress, she even tested the strength in my hands, and felt my calf muscles (I thought they looked smaller), and told me that everything was fine (that I had good muscle tone). She told me that M*D does not present itself with widespread muscle twitching, and the odds of me having it at 18 are in the millions. I even mentioned BFS, and she agreed. I was told to stop Googling symptoms and go to the gym to alleviate the aches and pains. I was honestly hoping to get referred to a neurologist (I know that sounds weird), because I really want an EMG test to completely put my mind at ease, but she disagreed.

I have NO muscle weakness whatsoever, I can still lift weights and hop on one foot, etc. But for the last week my legs have been hurting like hell. I have constant pain in my feet and behind my right knee, and my calves cramp up when I walk to work. I’m worried sick because my legs have been twitching non stop for the last few weeks. I can still walk ok, no loss of balance. But this morning when I woke up I noticed my stomach twitching, and I COULD NOT feel the twitches.

Guys I’ll be honest, I thought that seeing my actual family doctor would make me feel better, but it didn’t. The cramps in my legs and not being able to feel the twitching in my stomach has made me feel so upset. I’m just mentally drained now. I’m due to see my doctor in a months time. I just hope I don’t start dropping things or falling over before then. If I’m still experiencing painful legs, I’m asking to see a neurologist.

Any reassurance would be grateful. Does anyone else with BFS experience body-wide twitching and nerve pain? Painful legs and cramping calves? Can you see your stomach twitching but not feel the twitching? Many thanks - David.

[DavidMC94]

Maybe the twitching in my stomach isn't twitching at all, and is actually just my pulse haha! I'm pretty slim and the twitching is in rhythm with my heart beat. Plus with my high anxiety my heart often beats faster, so its more noticable. Still doesn't explain the leg pain though.

[SuziQ]

Gee, I'm surprised no one has answered you yet.

In answer to your questions, YES, most people here have experienced your symptoms at some point or another. We all eventually experience the widespread fascics, burning, sensory symptoms, visible twitches that can't be felt, invisible twitches that CAN be felt, cramps, aches, tremors, etc.

Read BFS In a Nutshell. It tells the story.

Blessings,
Sue

[DavidMC94]

Thanks Sue.

[Nicko]

Hi David,

Sue is absolutly right, this is classic BFS.

I experienced very similar symptoms to the ones that you report back in 1990 and I have had BFS sine then. If I could replay my life I would change the way I reacted at the time. In a nutshell I panicked. I spent so much time on endless visits to my Doctor and referals to consultants for tests. All were negative apart from a diagnosis of BFS.

I'm still here 23 years later, my BFS is always there. It's not got any worse. It flairs up from time to time, usually when life gets busy. So my advice would be - try to accept your BFS, the more stressed you are the more likely it will be that your symptoms will appear to be worse.

Best wishes

[DavidMC94]

Thanks Nicko.

[SecretAgentMan]

Perspective is everything. Something can only ruin your life if you give it the power to. Physical pain and hardships are always difficult but you can always choose to take these experiences and use them as a catalyst for positive change. Some of the most rapid personal growth opportunities lie in life's challenges. Our attitudes and emotions are incredibly powerful as multiple studies have shown. Entire self-help sections of book stores are filled with evidence for the power of positive thinking. That power has a flip side though. Negativity and stress are proven to lead to health problems and much worse. When I finally made the choice to actively work to change my attitude and perspective some amazing things happened in my life. Nobody can make this choice for you. It is for each of us to make. The good news is that no matter how long you head down one path it is NEVER too late to change your mind, change your perspective, and take a different path. Meditation and self-hypnosis techniques are incredibly powerful tools to help people reprogram their habitual patterns of thinking. I recommend looking into them as a potential solution.

[Jim66]

I started twitching in January 2013 after a very stressful event in my life, and after a nasty relapse of the flu. A few weeks prior I had googled the same symptoms and got scared.

Bodywide twitching? yes I've had it since about 1/8/13, mostly in my legs.

Pains/aches in legs? Yes I have that too. Always behind my left knee, sometimes just above the knee and sometimes just below it. Comes and goes but has been there most of the time since all this started.

"Buzzing" or "Vibrating"? yep, I have that too. I feel it in my feet and legs, usually when I am standing still or lying down. At one point it was more annoying than the twitching.

LIke you, I have NO weakness that I can identify.

Your symptoms are very similar to mine. I saw a neurologist last month and she said she was 99% sure I didn't have anything bad (i.e., ALS). I am still waiting on an EMG test that the neuro scheduled mainly for my peace of mind.