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Help for achy legs?

PostPosted: August 18th, 2004, 8:57 am
by Fred
Hello all. First post for me.

I was diagnosed with BFS two years ago by a top neurologist at a top university hospital. I had all the painful, invasive tests, and all turned out to be negative for ALS and MS. I was so relieved at that time, and have been in better shape since then. From 2003 to May of this year, I had just minimal symptoms. I started taking calcium, a multi vitamin, and E vitamins. Maybe they helped.

But for the past three months, I have had my worst stretch with BFS since I was diagnosed. Twitching, cramping, pain, sensitive skin areas, areas of my skin that feel like they are burning up – from head to toe. For me, stress and lack of sleep seem to make the symptoms worse.

One way I have successfully relieved stress over the last year has been through jogging or walking. My problem now is that in addition to the symptoms above, I have problems with my legs. I have not jogged in months, but my legs feel like I just ran a marathon. And if I even put just a small amount of exertion on the legs, like if I’m running for the train, I’m hurting for a long time with pain, cramps, and twitching. The achy legs are a constant for me now. So I can’t exercise anymore, leading to more stress, leading to more severe BFS. It’s a vicious cycle.

Does any one have any suggestions on how to relieve the achy legs? At least then I could start to exercise again and maybe help myself.

Thanks, Fred

PostPosted: August 18th, 2004, 9:29 am
by garym

I wish i had an answer to the achy legs question, my life would be a ton better! I think that you have to work on sleep (as you noted) as that is when the body removes natural toxins that are produced in our muscles by everyone everyday at the cellular level. I believe that the continous muslce action that we with BFS experience leads to a greater concentration of these toxins and sleep is critical to clean and repair our muscle cells. Now it has been over a year since I was looking into this particular theory, so I don't remember off the top of my head which exact toxins are generated, but the process is an established medical fact (I'm only giving an overview).

I know that it is a vicious cycle of stress and increased sxs, but try to find a way to get some good healing sleep.

Take care,


To Gary

PostPosted: August 18th, 2004, 9:32 am
by dont

Do you think when we take benzos at low doses that we are still getting healthy sleep? Anyone else can chime in with an opinion too.



To Fred

PostPosted: August 18th, 2004, 9:46 am
by dont

As common and crazy as it sounds what helps my achey legs is Bengay and a heating pad. I will put the Bengay on as soon as I get home from work and then when I go to bed I put the heating pad under a pillow case and rest my legs on it. It seems to help.

Take care,


PostPosted: August 18th, 2004, 12:27 pm
by jcavan4125
I find that low dose neurontin (300mg at night) not only gives me a great nights sleep, but takes away alot of the joint pains, muscle aches and most importantly for me muscle stiffness.

PostPosted: August 18th, 2004, 7:35 pm
by Floater
a nice warm klonopin bath helps achey legs,,,believe me... i have achey legs everyday from this bfs crap.. a hot tub or a warm bath always helps the circulation of blood to your legs to relieve the pain

PostPosted: August 21st, 2004, 12:10 pm
by Oswy

"...but my legs feel like I just ran a marathon."

I know exactly what you mean here. I have to say this feeling came on for me maybe 12/13 years ago, and doesn't show any signs of going away. I find that moderate walking is better than running, at least the movement of walking seems to diminish the perception of "buzzing" and fatigue I get (though as soon as I stop walking it all "fires up" again). I try not to run because for me running quickly induces (sometimes major) twitching. I also cycle, but again, I try not to overdo it.

A hot bath helps create a temporary reprieve for my leg aching and buzzing, I find, but once I've got out of the bath the sensation is back, sometimes with a vengeance!

Having myself had BFS for around 16 years my advice is to stay physically active without overdoing it (unless you suffer adverse reactions of course - everybody's BFS seems to be slightly different and sensations/nerve activity triggered in slightly different ways from my reading around this forum).


PostPosted: August 26th, 2004, 11:27 am
by Arron
I get the achy / tired / shaky / rubbery legs all of the time. It can be any one, or all of those symptoms at once. It can last 10 seconds or 10 minutes or 10 hours or even several days at a time, then it might go away for a week or a month. You just never know.

I just take some time to go sit down and put my legs up for a while and that helps. I didn't say it makes it go away, I said it "helps".

This is all part of the BFS crap we get from time to time and many people have talked about these symptoms over the years, so it is common with BFS'ers.

Re: Help for achy legs?

PostPosted: September 10th, 2004, 4:54 am
by jasonh_22
Fred wrote:Hello all. First post for me.

sensitive skin areas, areas of my skin that feel like they are burning up – from head to toe.

Can you explain what you mean by "sensitive skin areas" and your skin "burning up"?? I think I might have something similar....but I want to hear how you describe it first.


PostPosted: October 8th, 2004, 4:46 pm
by Fred
"Can you explain what you mean by "sensitive skin areas" and your skin "burning up"?? I think I might have something similar....but I want to hear how you describe it first."

Jason: RE: The sensitive skin areas-- sometimes on the surface of my skin, it feels like the skin is all red, but it's not. Happens a lot in the area under the belt line. If you scrape it, it will sting. Usually lasts a couple of days. Like little pricks/needles.

On the burning up thing, sometimes my legs just get so hot that I can't sleep with a blanket on. Like they're on fire.