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chris_uk

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Hi all

Well i am back again....Past few month have been hell, told by Neuro on numerous occasions i dont have MND, and i am trying my best to believe him of course i am. My biggest problem apart from the twitching (and that is still there big time, on both calfs now 24/7) is this crampy soreness feeling i get when i walk. Its really hard to describe, for example if i lay on my bed and raise my leg my calf will instantly feel like its going to cramp. When i walk around my calf muscles just feel so so sore, when i lift my leg off the ground i feel it trying to cramp. This is resulting in me limping after a while.

Not sure if Cramping is the best way to describe this....my calfs just feel sooooooooooooooo sore, even to touch. It got to the stage where i did not dare walk, and i mean anywhere, i would make an excuse to not even walk around town as i knew it would hurt and scare me. When i seen my Neuro he said i must try to get passed this and i have been going for walks every night, not long ones just 5-10 minutes...i even tonight went for a little run, again not far about 5 mins. they were sore / crampy all the way through this.

I am so self conscious of when i walk, i am waiting for every step to hurt and when it does my heart sinks...has anyone here had this at any point?

Thanks again all for listening

chris
 

awieleba

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Hi Chris~

yea, It is hard to move pass something when you still have problems or pain.

I dont have this to the extent you describe but I have gotten that feeling like my foot will cramp but it does not. I get more of a deep achey feeling in my legs if I walk to much. On days when I run around alot with the kids, my legs will ache but feel better once I rest. I do know what you mean about not pushing it. I have my husband do alot when he is home so I can save my energy for kids during the day as my muscle will hurt more at the end of the day.

Did the doc say that you had bfs? cramping can go with this.

Good luck
 

chris_uk

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hi

Yes he did say i have BFS but i just find it hard to take that in when i have all the soreness and aches that i do...i feel fine for the first 10 mins when i get up, then it will kick in. i feel no pain in bed its lovely lol

chris
 

awieleba

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yes, I know what you mean. I feel that way, good in the morning. I just have all my kids in bed and watch movies on bad afternoons. They think it is great to be in our bed eating popcorn (dad would never allow eating in a bed) and I get rest and my body feels great!

I also agree that is hard to believe about the bfs, the only thing that will assure you or show you is time. And to see where it goes, hopefully no where!
 

wheeler641

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mine is the complete opposite, feel just awful when I first get up in the morning, but as the day wears on most of time by noon I feel pretty good. It takes me at least an hour to even get moving, legs aching, thing popping and cracking. If you notice most of my posts are in the morning, I sit at the computer for about an hour waiting for my pain meds to kick in. I drink about 3 cups of coffee and in a liitle while I feel better. But those first few minutes when I first wake up, even before I get out of bed are sheer hell.
 

rose

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Cris, if its any comfort, what you describe is not at all what I experience. Even though I have bulbar onset, my legs are affected now (as are my arms) . I do not know how benign cramp/fasciculation usually feels to people, but I can assure you 100% that what you're describing is not in the least what happens with me. Regardless of what is wrong with you, you do need to get exercise, perhaps if you saw a physical therapist, that person could work with you so that you were able to stretch out and at least keep some range of motion, and eventually some sort of aerobic/cardio, if nothing more than walking for several minutes a day. good luck! :)
 

chris_uk

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Rose thank you so much for your advice

chris
 

chris_uk

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Just read that and whats worrying is it keeps saying that when you flex / move your muscles the twitches go away, they dont with mine they are always there
 
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