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rollacoster.... up and down .... frustrating

PostPosted: March 23rd, 2015, 1:58 am
by Sadface
Hi all
It's been a couple of months since I was last writing on this site.
My worries of having mnd has not gone. Although sometimes it's in the middle of my mind instead of the front if it.

I must be 18 months into my widespread twitching. Most symptoms the same as previous posts... stiff fingers, perceived atrophy on hands, the shakes in left hand and foot.
I also find if I do any exercise or anything physical, my feet ache like mad.
I yawn so much I get jaw ache. I feel so tired at times that I could fall asleep no matter where I am.
However 18 months in, and regardless of the above, I can walk talk. This must be a good sign hey!!?

What's caused me to feel down was leaning my legs on my partner and I could feel my shin twitching like mad.

I'm sorry to rant
I just wanted to seek sone support during my low period

Re: rollacoster.... up and down .... frustrating

PostPosted: March 23rd, 2015, 4:03 am
by Yuliasir
as for the foot pain during excercises - plantar fasciitis is really no.1 in the list. Peripheral vessels disease no2 (seldom in non-older people). I mean they are much more common compared to any other causes.

As for falling asleep during the dayitme, here only neurologist/sleep study could tell whether you developed narcolepsy or it is just severe sleep disorder (suppose you could not sleep well at night). Same for yawning - it might be an autonomous system reaction due to overall disbalance.

18 months without prominent deficites is well enough to consider twitching as benign, I think. Other issues have to be investigated (I mean pain in the foot), or could be aqcuired due to 18 months of worrying.

Re: rollacoster.... up and down .... frustrating

PostPosted: March 23rd, 2015, 6:13 am
by Sadface
Guess it's hard to put down as other things when I'm so preoccupied with it being mnd.
I have my little areas of concern which tend to go in cycles. As you have seen before, my hand and tongue are prime areas.

Re: rollacoster.... up and down .... frustrating

PostPosted: March 23rd, 2015, 8:36 am
by BFSBurger
Dont worry about MND. Believe me. We've all had this stuff. I couldn't even walk on my hard surface floor for a few months without foot pain. We joke that we are like 90 year old grandmas and grandpas sometimes. Its just how BFS goes. The great thing is that almost everything seems to be temporary. Then it moves on to something else.

So rest your mind. Its par for the course. Things will come and go. Even new stuff will pop up, hang around a few weeks, then disappear. Each time you might be tempted to think you've got the worst version of whatever disease matches that symptom. That's what most of us do here. But try to remember that BFS is the "great mimicker". It presents as 30 different diseases, and then says "Just kidding!" and the presentation changes to something new.

Keep exercising. But do not push hard. Do a very light workout at the most. The goal should be to flex all muscle groups in the body. I would go to each machine in the gym, set the weight low, and work out that muscle group. Ultimately hitting the whole body.

This is very important to continue doing. Exercise has been my savior in all of this. But do not over-train. Only push weight that is easy, and gets the blood flowing. Whole body. Then collapse on your bed and rest. I usually had to wait 2-4 days between these "grandpa" workouts just to rest. So stick with it, and after some iterations of this cycle, you should start to feel a little better. Nothing reduces stress, inflammation, tension, and countless other symptoms like exercise. Please do not be like some here who still "kill it" at the gym. Or who insist on "distance running" or cycling. Your body needs a break. Its telling you to stop. Give it a chance to recover.


Re: rollacoster.... up and down .... frustrating

PostPosted: March 23rd, 2015, 4:42 pm
by Sadface
Thank you for commenting

I just did a light half hour of exercise
U now have a tremor in my left arm
Argh frustrating. Always the left side.

I just have dips where I left it grind me down
Other times I feel the constant twitching but I ignore them.

Re: rollacoster.... up and down .... frustrating

PostPosted: April 2nd, 2015, 8:09 am
by Sadface
I often need to re read my posts and the reply, as I start drowning in my fears
It's frustrating to feel alone when experiencing widespread twitching. I personally don't know of anyone (physically not on here) who twitches like me.
I feel like shouting 'give me a bloody break' because it's constant

Constant in leg and foot.... literally
Then flickers everywhere else like fire works

So draining and worrying