Every new symptom, a new scare

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Every new symptom, a new scare

Postby rookiecookie828 on January 19th, 2013, 1:44 pm

Hi everybody.

Since the new year, I have been battling the fear of this not being benign. Unlike most of you, I don't twitch randomly that often. I do get random pops but most my twitches are brought about by the same actions. My biceps and forearms twitch when I fold or hold something. My calves twitch when I'm sitting down with feet firmly on the floor, butt twitching when sitting down with weight on that twitching cheek, etc.

What has been bothering me greatly are my thighs and knees. Last December, my right knee has been aching/hurting. It feels like it is grinding and working double time. It's not helping that this knee seems to be losing bulk. Fast forward today, both my knees and thighs are sore and fatigued easily, more so my right. My twitchings are dominantly on my right knee and thigh too, exactly the same spot where I feel sore and hurt. They twitch even when I'm standing. I have requested another neuro consult (my 3rd in 3 months), but it is still in February. So while I wait, I'm bombarding heavens with prayers that this is just another BFS annoyance and nothing fatal.
Posts: 12
Joined: November 13th, 2012, 7:34 pm

Re: Every new symptom, a new scare

Postby BFSBurger on January 19th, 2013, 1:52 pm

1) Pain is not a sign of ALS, so you can rest easy and knock that one off your list.

2) Everything you describe symptom-wise does in fact match many people here. Isolated pains, isolated twitching (yes even that - we call them hot spots), etc.

3) Get the necessary bloodwork: Lyme, CMV, EBV, Mercury, CBC, RA, Electrolytes, Thyroid, ANA, Testosterone, etc etc.

4) There are (literally) about 20 or 30 completely benign conditions that present with your symptoms. There are many shades of gray with these types of things. You are in good company with tons and tons (literally millions) of people experiencing the same thing, who are living 100% completely normal lifespans.

5) It will be your decision to sit back and do nothing, or take steps to address the possible causes. Such as reducing inflammation in your body, beginning careful and whole-body physical therapy with movement, resistance, and gradually increasing mobility. Modifying your diet. Elminating *all* (not some) of your vices: Caffeine, Sugar, Alcohol, Smoking, Excessive and destructive fitness regimens, and Mental Anxiety. Getting a full 8 hours of sleep every night, even if that means going to bed at 10pm. Etc ...

I would begin to focus on what you can do to begin addressing where you are lacking in all these areas, and start to take steps to change your lifestyle and outlook. As best you can. Doing this has helped more than one individual here. I know its easier said than done while the symptoms are still strong. What i recommend is that you push through it, and stick with it.

Good luck.
How I resolved my BFS within 1 year of onset:

User avatar
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: Every new symptom, a new scare

Postby christo on January 20th, 2013, 3:04 am

Some of my twitches can be triggered just like yours. I found them less scary that those my calves and feet than are present 24/7. If you only have triggered twitches that come and goes then I think you should trust your neuro and stop worrying.
Posts: 349
Joined: October 27th, 2012, 5:04 am
Location: France

Re: Every new symptom, a new scare

Postby Issi on January 23rd, 2013, 7:49 am

Hi, believe me when I say this is so common in BFS. I can relate to your symptoms a 100% and how you feel at the moment. I have had this and a lot of other scary symptoms during the last year. But it definitely gets better !!!
In the beginning I had so much pain after doing my 3 miles run once a week and now I am excercising almost every day. My muscles are still not the same as before the onset of BFS but it gets better and better. I definitely know how hard it is to believe that nothing serious is going on but please trust the "oldtimers". Try to relax, do as much excercise as you can at the moment, don't drink too much coffee and try to do things which make fun to you. I lost months of my life, living in constant fear...for nothing !! You are definitely ok :-)
Posts: 32
Joined: May 3rd, 2012, 1:47 pm
Location: Germany

Re: Every new symptom, a new scare



Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 3 guests