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Thread: Fasciculations, cramps, are they good or bad signs?

  1. #1
    Forum Member marieline's Avatar
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    Question Fasciculations, cramps, are they good or bad signs?

    Hello all,
    Are fasciculations and cramps good or bad signs?
    We seemed to have mixed views re fasciculations and cramps. Some of us even viewed them as a sign of rapid progress. The pathophysiological explanation is simple: Fasciculations indicate that there is attempt at nerve reconnection to muscles.
    On the other hand cramps is that connection attempt is happening to some degree, but in a rough way.
    In my 9yrs of observation, i have suffered violent periodical episodes of cramps and fasciculations. In the beginning they served as two of the diagnostic symptoms for MND, so of course the brought along feeling of dread.
    My focus was on managing the disagreeable feelings that come along with Fasciculations and cramps.
    And after i came on the forum, i realised that we all had mixed and different views on those symptoms, and that some of us do not experienced them. Over the years however, despite the discomfort, the loss of sleep due to those 2 nasties, i have learned to cohabit with them, and have learned to appreciate that they are not all bad.
    I have personally noticed that areas that cramped, rarely failed to function. Your views please.

    "No one is defeated until defeat is accepted as a reality"

    Marieline

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    Forum Member pete's Avatar
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    Hi Marieline,
    I have no idea if the twitching is good or bad or just really annoying, I tend to suffer more from what I call spasms in my legs ,well more specific in the calf muscle, the physio who we saw last ,said we need to stretch rather than hard workouts as the tendons tend to get weaker ,it essential we keep them supple, we are on our fourth physio now the other three all got pregnant after we had seen them!!! So the latest one informed me , she gives me a simple stretching excersises that work, about the only good thing is it really does ease the pain so as I hate taking pills, really glad something's acheivable without anymore pills needed.

    Pete
    All I need is a miracle

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    Forum Member Terry's Avatar
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    Hi Pete mate; Best see family planning before the next Physio.

    Hi Marieline; I don't thing they are good signs, certainly not cramp/spasms as they really hurt and can cause damage. But do not read to much bad things into them as well.

    Love Terry

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    Forum Member marieline's Avatar
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    Hello Pete, CC will have something to say to that, about getting all the physiotherapists pregnant .
    Re cramps, which i get in my hands and lower limbs and feet on a frequent basis ( most likely linked to woman business), i personally never take any pain medicine or antispasmodic for it, but i am sure that taking food rich in magnesium and stretching are the best way to go with it. At this stage i consider my status more as a chronic sufferer than a person with a terminal illness which initially was the case. Because these 2 symptoms are the most recurrent, i am trying to try and normalise them, just like you do with a headache, you don't always take panadol, sometimes just lying in the dark seems to do the trick. And i am glad that Stretching is working for you as well Pete. With time even my foot drop seems to be correcting itself, and that is all attributed to regular stretching, which does not involve an hour at the Gym.
    And Yes Terry cramps and spasms are nasties, but i don't think that we should altogether suppress them though. They are probably not as bad as we may think, which is why i i'm trying to get some opinions on them. The explanation in textbooks are a bit obtuse and the Neurologist doesn't think much of them although he did suggest antispasmodic drugs, but i am like Pete on this one, i will never take a drug that i cannot stop anytime i like.
    Is it periodical for you guys as well? i usually find that cramps and fasciculations hang around for about 2 to 3 weeks, during which time i maxed up on magnesium, bananas, constant stretching etc and then i will have up to 3 + months of relief. I have associated that to glutamate buildup in the motor neurones and neuronal death, that perhaps the build up is not continuous but it take that long for the clean up to take place. And after a major clean up perhaps it takes longer than we realise for a build up to take place. So perhaps if we pool our resources together we could perhaps find simple solutions. Just plucking at straws here, if we can't reverse it or cure it, we must try and find a way to live with it, without it being the centre of our universe. There are physiotherapists to get pregnant and so on
    Best wishes Marieline

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    Forum Member marieline's Avatar
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    For those who are wondering why some people are a lot more bothered by fasciculations than others, we need to take into consideration the temperament.
    Fasciculations in itself is not painful. it feels like you are being shocked with very low currents. Sometimes they can be very violent, i supposed it depend on the muscles that are being stimulated. the larger the muscle the bigger the electric shock felt, in my case you can even see the bed sheet being kicked. The same muscle can fasciculate for a few days, usually more noticeable when you are resting. However in my case, some parts of the body, like behind the collar bones and part of the upper chest, it feels quite disagreeable. There is absolutely nothing to be concerned about fasciculations (my thoughts). They are just telling us that something is happening to our motor neurones and that the brain is trying to fix it. In my opinion it is keeping me up to date of the extent of damage that are occurring in my brain. What happened if we suppressed them?
    The reason why i added the thread was because i noticed some mixed opinions about those 2 things on the forum and talking about it will hopefully normalise them.
    I believe what some folks find most painful are the cramps. They are very painful and the best way to deal with those is to manually stretch the parts (also painful) which will end the cramping episode. For me cramps will almost always occur in muscles that have fasciculated. One of the benefit of not suppressing symptoms are that you can collect your own datas and analyse them whichever way you wished.
    The part that cramps , though annoying and painful never completely loose their strength and these parts i found respond well to exercise. As long as you remember to stop before fatigue, i always pushed past the pain point though. What happened if we suppressed the cramps?

    Best wishes
    Marieline

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    Yes, the Radical on Sheila's thread, what next?
    Hi Marie,
    I don't know what to think regarding spasms, cramps, twitching,...don't know if it's good or bad,
    All i can say is i must be dead from the neck down, because i've never had any of them,..for many years now,
    It just doesn't happen to me,...and i'm glad about it,.....can't imagine having cramps when bonking!!!

    Thing is,..when we were apparently healthy,..our Nervous System/Muscles, all worked normally,
    MND comes along, everything's shot,...messages from the Brain don't connect, or not properly, rot ensues,

    So now, if the Brain's sending messages, are they piling-up/crossing over/mixing up/misfiring, etc,
    causing or leading to,...cramps, fasiculations, etc.

    Motor neurons in the brain and spinal cord convey electrical messages from the brain to the muscles to stimulate
    movement in the arms, legs, trunk, neck and head. As motor neurons degenerate, the muscles do not work properly
    and gradually weaken and waste away.
    This muscle weakness and wasting affects speech, swallowing, movement and breathing.

    You would have to take something that crosses the BBB,..cos that's where all messages come from,
    to effect/suppress, your Muscle spasm,...good luck,
    I don't know what Baclefen, Diclafenic, etc, do,

    The Aussie version of creation, hehe

    https://www.dropbox.com/s/coq8lzlqur...ATION.msg?dl=0

    RRRrrr xxx

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    Forum Member BlueEyesOhio's Avatar
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    Evening Marieline,
    I started having cramps as my very first symptom. (Actually I had weak legs and muscle wasting in my left hand but ignored it) But the cramps were horrible. They were so bad I was sore the next day. I usually had them in my upper leg and calf. It felt as is something had torn inside the muscle. The cramps are not as bad now and I can usually catch it if I stretch the muscle and get the cramp to stop.

    The twitching or faciculations don't really bother me. I find they don't twitch if I am cold. I usually get them all over when I am lying in bed all toasty and warm. It's rather comical. It's like my whole body is twitching. I told the 1st neurologist it was like someone playing the piano on my back. It does not bother me in the least. I heard that the twitching is the body's way of trying to reconnect the nerve and the muscle.

    I don't think they are either good or bad. Although cramps are bad when they last long!!!

    I guess we have our own little study going on here.


    ((((((((((((((hugs to all)))))))))))))

    Lynne
    Be Strong and Courageous!

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    Forum Member marieline's Avatar
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    Hey Mr Ray the radical,
    Yes that did get me thinking the other day, because you claimed not having experienced fasciculations and cramps for several years, and your status have not deteriorated during those years either.
    Could it be that you have reversed the disease, or enjoying a long period of remission.
    The kink in that for you though was your peripheral neuritis. I know that it is blooming cold in Scotland and you probably didn't pay your heating bills. If it wasn't for that mate, i would definitely suggested that you had your cocktail trialled.
    But nothing is black and white with MND there are definitely many shades of grey and as i said my observations of those many years are suggesting that perhaps the fear that we harbour for fasciculations may be exaggerated.
    And i think it's worth discussing on the forum. and for a radical you seemed to have a very final explanation on the pathophysiology of MND. That's 6 billions neurones we are talking about, and based on the assumption that we are already sick years before the major symptoms occur, i am assuming that the progression is similarly paced, of course that will depend on our mental status, general health status of our major organs, our defence mechanism, toxic load (e.g heavy metals), nutritional status etc.
    I am very excited with this topic and thank you for taking the "piss" out of our creativity, we are naturals
    Be good and stay tuned
    Marieline

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    Forum Member marieline's Avatar
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    Hello Lynne,
    As you see, one size doesn't fit all with MND. I supposed this explained why after more than a century we are still knocking our head against the wall trying to crack the mystery of this illness. It is gobsmacking! I am glad to hear that you are coping with the cramps. I supposed heat and dehydration will aggravate them, as i believed you just had summer in the USA. You will find that winter have it's side effects too. At least it does for me and also when i ran of bananas and magnesium for more than a couple of weeks, if i do my craft or walk long distance, i always feel them, though i do not panic as i used to.

    Yes fasciculations come when the body is at rest, i wish i could explain the physiology behind why a muscle will fasciculate and then stop after a few days.
    Re muscle wastage, it can be explained by the fact that you are less mobile. I have always had skinny arms, i had the perception that my arms were thinner a few years ago, i was even weaker in the arm. Now i'm back carrying, opening jars, water bottle etc and my arms are definitely not wasted.
    My last Neurologist report from October 16th 2014 says among other things "modest spasticity in the limbs with good retention of power in the arms and legs but with slowness of rapid repetitive finger movements, hand tapping and food tapping" Anyway i do not believe i was ever a good hand and foot tapper in the first place.
    So Lynne we are keeping a neutral views on Fasciculations and Cramps and getting your views as you are just diagnosed is quite vital to our little study.
    Best wishes
    Marieline

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    Forum Member BlueEyesOhio's Avatar
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    Marieline,

    One of the things that really bothered me about my 2nd neurologist was that he told me I was "very strong" I used to run on a treadmill every day and do weight training. I told him my legs and arms are weakening. He said, "I don't see it" This new neurologist from Cleveland Clinic said (and this cleared things up) my endurance is bad. Yes, my legs and arms are strong but I can only walk a short distance. This last neurologist told me it is a matter of "petrol in my tank" I am strong but I "run out of gas" quickly. That was VERY frustrating to me.

    Do you not have cramps if you take magnesium and eat bananas? Magnesium and bananas cure the cramps?

    Lynne
    Be Strong and Courageous!

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