BFS and Leg Pain...

Information about how to manage or reduce the severity of BFS symptoms

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BFS and Leg Pain...

Postby jebrown7777 on June 28th, 2013, 9:43 am

Wondering if others have slight balance issues, re: legs? My legs are awfully stiff (thighs in particular). There's some twiching while at rest (know that stiffness, cramping, twitching is classic BFS...just haven't seen a lot about balancing). That stiffness seems to cause me to feel a little wobbly when, say, in a crowded resturant or on a treadmill (where I get a sensation that I drift to the left or right). Getting up from a chair (if I've been sitting for awhile) or from bed can be a little more painful too. I was diagnosed with BFS in December by a neuro (after a clinical exam). Developed leg pain in Jan/Feb and had an EMG in "normal range" in late Feb on the left side of my body. Had a bunch of blood work done too. (Much of it was good. AST/SGOT was a little high 39 [37 is top normal] and Aldolase was high. CK, CK-MB normal.) Right now, the stiffness and discomfort with the legs (including when keeping my foot on the brake in traffic) is disconcerting. It makes excercising a challenge. So much so that I've scheduled another appointment with my Neuro for early August. (These guys are popular.)

Just wondering if others are experiencing similar leg pain/balance type issues?
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Re: BFS and Leg Pain...

Postby Spider on July 2nd, 2013, 12:09 pm

Had a balance issue only once .

But always get aches & pains & tight muscles in my legs for no reason at all .


All the best
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Re: BFS and Leg Pain...

Postby TwitchyMark on July 3rd, 2013, 10:58 am

Yes, I had a period of time where I had leg issues and loss of balance and coordination (I kept bumping into things). I had trouble putting one foot in front to another etc... (proprioception), a perceived weakness walking up steps, a feeling of tightness or spasticity and a weird deep, tight aching in my right lower leg that kept me awake at night and pain killers didn't seem to help. Must have been the hyperexcitability in the nerves in my legs. Just weird sensory stuff that really scared me at the time. But it did go away. In response to your problems with driving... at one point my legs were falling asleep quite easily and it happened in the car a few times... the first time where I almost lost complete use of my legs. I didn't know what was happening at the time and had my first and only panic attack in my life. My efforts in pushing my legs down on the car seat only made things worse. I thought ALS was taking my legs and I admitted myself to the ER which I vowed never to do since I didn't have insurance at the time. Expensive visit for nothing.

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Re: BFS and Leg Pain...

Postby Xina535 on January 11th, 2014, 7:24 am

Hello,

This seems to be an older topic, but I am a new member and this topic interests me so I would like to reply to it.

I was diagnosed with BFS a couple months ago. I haven't had an EMG yet. I have some nerve conduction tests scheduled later this month. All tests have been normal so far (blood work, thyroid, MRIs, CTs, etc). I had a slighlty elevated ANA once, but after a follow up blood test, it went back to normal. I may need another follow-up ANA test.

I would like to say that besides my twitching all over, the only other symptoms I have are pain in my legs, mainly the front* of my left thigh. I will get the pain in my right front thigh, but it will go away and come back. The pain in the left thigh seems to stick around. Normal pain meds (ibuprofin) will help slightly. The pain comes with burning and 'buzzing'. I have no weakness, but the pain can definitely inhibit my day to day activities. Sometimes I get pain in my arms and hands, like an 'almost about to cramp' pain, but this also comes and goes.

*I specify FRONT of the thigh, because pain in the back of the thigh could be due to sciatic issues, which I do not have at all.

From what I've learned, A** does not cause sensory issues like pain or burning. Symtoms from A** will also not come and go, but will get progessively worse and clinical weakness MUST be an accompaning symptom. The twitching with A** is different than the twitching in BFS. Also, the pain in BFS can be caused by all of the twitching (causing the musle to tense up and cause pain). It just so happens that my left thigh is where I have most of my twitching (my 'hot spot'), so this might explain the pain I am having there. When I press on my thigh muscles, it hurts like he**, so I am thinking a good massage, heat and/or progressive muscle relaxation (PMR)may help. I am going to try it out. If it helps, I will let you know.

Any other ideas for the leg pain? Any thoughts on what I mentioned about A** vs. BFS above? Because this is what I am basically living off of to keep me from freaking out about having A**.

Note - I have not yet searched this site to see if PMR has been mentioned to help symptoms, but in case it hasn't, I would like to mention that it is a great technique to reduce tension and anxiety. It is used A TON in Germany!

This is an article on it:
http://stress.about.com/od/generaltechn ... wtopmr.htm

And I find this audio guide from this website very helpful and relaxing:
http://www.johnmccauleyphd.com/Progress ... ation.html

Thanks,
Xina
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Re: BFS and Leg Pain...

Postby Rothhaar on January 19th, 2014, 2:36 pm

Xina535 wrote:I would like to say that besides my twitching all over, the only other symptoms I have are pain in my legs, mainly the front* of my left thigh. I will get the pain in my right front thigh, but it will go away and come back. The pain in the left thigh seems to stick around. Normal pain meds (ibuprofin) will help slightly. The pain comes with burning and 'buzzing'. I have no weakness, but the pain can definitely inhibit my day to day activities. Sometimes I get pain in my arms and hands, like an 'almost about to cramp' pain, but this also comes and goes.

*I specify FRONT of the thigh, because pain in the back of the thigh could be due to sciatic issues, which I do not have at all.


Hello Xina,

I have pain in exactly the same location(s) as you have, i.e. front of the thigh, just above the knee. In my case it's a dull, but rather strong pain in both thighs. I think it is just some kind of muscle hardening (since you are also german: Muskelverspannung) due to the anxiety and stress level caused by BFS.
This usually happens in the neck and upper back area, but since most of us BFS'ers are totally focused on their extremities, we probably tense them too much und thus it happens to the thighs or calves.
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Re: BFS and Leg Pain...

Postby Xina535 on January 19th, 2014, 3:20 pm

Omg! You read my mind because when it hurts (also dull pain) the muscles are also very hard, like as if I'm some sort of body builder, and I think, "Man, why are they so freakin hard like this?" Makes total sense that they are 'angespannt' (tense), so I'm going to go with that.....at least for now. Ugh. Hate BFS! Thanks for sharing your thoughts and experience!
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Re: BFS and Leg Pain...

Postby ShawnW on February 13th, 2014, 6:24 pm

I have the exact same thing above the knees. It comes and goes...sometimes the legs feel weak...dull ache. It didn't start until after I started worrying about ***. Honestly right now it's my main symptom. I still get random twitching, decreased exercise tolerance and this leg pain.
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Re: BFS and Leg Pain...

Postby Watereddown on February 13th, 2014, 10:47 pm

I get the stiffness too. Mine is usually shin/calf area. Lately its been my left leg. My calf just feels extremely tight. It wants to cramp up, but it never actually does. it's as if it wants to keep me on edge. Weird
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Re: BFS and Leg Pain...

Postby jebrown7777 on February 17th, 2014, 6:47 pm

Hi Xina,

I recognize your symptoms. Sounds like classic BFS. I've had twitching for over a year and a half and cramping in the legs for over a year. (It was hard to hold down the brake pedal on my car at one point.) The good news is that my symptoms are much improved. Cramping is basically non-existent and I exercise more than ever. The trick for me was to go through the medical tests, torture myself with negative thinking, and then go to the therapist. Therapy, with a little Zoloft, has done the trick. Don't mistake me. I still twitch and I still get strange pains, but words cannot describe how much better I am doing. I write this for you and those who might be going through the sheer anxiety that is BFS. If you look at my previous posts, I had some disturbing symptoms, so there is light at the end of the tunnel. Hang in there and try your best to focus on what's positive. I ruined a trip to Barcelona because I was so upset with the strange pain I was feeling.
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Re: BFS and Leg Pain...

Postby Amylou29 on March 5th, 2014, 5:29 pm

I also have this pain, I have it continuously in my left thigh, I've had it every day for the last 6 months. I'm also having the same pain start in my right bicep. I twitch 24/7 and am petrified I have als. However, i do not have actual weakness, perceived yes but actual, no. I do know that als fear will take over if you let it ( like I have ) and it's controlling. Lots of people here seem to have pain/ soreness so you defiantly aren't alone.
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Re: BFS and Leg Pain...

Postby Christina91013 on March 6th, 2014, 8:25 am

I also have muscle pain too. I have been experiencing dull pain in my upper right arm for the last four months. It seems to be at its worst when I use my arm a lot. My most recent symptom is the pain in my right thigh when I am going up stairs. These symptoms are frustrating; I am an active person in general and this whole thing has set me back quite a bit.

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Re: BFS and Leg Pain...

Postby Amylou29 on March 6th, 2014, 1:41 pm

It's really annoying isn't it! I spoke to my go today and he said to take vitamin d. He also said my ck levels were normal and that if I had a mind it would be elevated, I know there are other things that can cause an increased level but it's good to know it would be abnormal if it was mnd causing all this trouble!
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Re: BFS and Leg Pain...

Postby UFGatorGuy20 on March 12th, 2014, 10:26 am

My legs just cramp on me when I'm standing in one spot for a while, sitting in my office, or driving. I can feel the fascis while I'm at rest. Sometimes while standing still I'll get a thumb in the rump. lol. If I get up and walk around it seems to help. But, the cramps for me aren't localized. It's seriously my entire leg (both calves, both hamstrings, both quads). No muscle weakness, although at times my muscles will stiffen up on me so much that I get wobbly standing up from a chair. I think without knowing it, we tense our muslces. Than combined with the twitching just overworks them and we get cramps and tired muscles. Balance is a little bit tricky sometimes. I find myself doing an S-curve down a hallway as opposed to just a straight line without really concentrating on it.

The great news is... it's so transient for me. One hour my legs will be brand new. A few hours later they will feel tired. A few hours later they will cramp. Then, I'll be brand new again... all within a day or even multiple times a day. "Serious stuff" doesn't work like that. I think it waxes and wanes with anxiety, activity, what I ate, my position, etc.
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Re: BFS and Leg Pain...

Postby Amylou29 on March 13th, 2014, 5:42 pm

Sounds like your trouble is more stiffness than soreness, it's annoying either way! Mine doesn't wax and waine though, it's there permenantly, like a constant reminder some things not quite right. I know what you mean about the big twitches too, I was writing at work and my whole hand jolted up and I did a scribble, I did laugh and had a quick check to see if any one noticed ( they didn't ). When I first started with all this my main complaint was the twitching but I'm used to that now, the soreness has definitely taken over. Oh the joys of this hey! I'm sorry you are having the cramps, I have ' things ' like twinges in my thighs but they don't go in to full blown cramps but they are bad enough so I really feel for you x
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Re: BFS and Leg Pain...

Postby Rascal on March 28th, 2014, 9:50 am

I have had alot of soreness in my front thigh area also can i really can`t pin it down to any reason! But it does come and go. Maybe constant stress of the muscles or from the muscles twitching just all this is so wierd thinking lack of muscle use? being it`s been a long winter here in the North Eastern U.S. ? I will see i guess once the weather warms and my activity increases. Like i have mentioned above the thigh pain -sorness has me baffled !
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Re: BFS and Leg Pain...

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