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Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping…
I am trying to explain to our new friend and member Felix the level of fatigue and extreme tiredness that
has become part of my life. He has a friend with MD who sleeps a lot.“Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping… fatigue” is part of everyday life for me !!
I was explaining to the new hospital consultant………how can I be so tired I cannot follow “East Enders” (or
any other serial). That I have stopped reading, my lifelong hobbies, my gardening have all stopped dead in
their tracks. After the 100 yard trip to the corner shop for a pint of milk I fall asleep. My posting on Talk MD
has dropped off too.How is this possible ? I am too tired to think of jokes about sleeping sickness even.
Before I would not have believed it possible.
Do other posters feel this way ?
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.I can’t say I have felt that way for the past three years. Last time I did I was in hospital due to blood clots in my lungs.
What did your consultant say, Mr Fox?
SybyllaRe: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.The best way I can describe it to someone is as if they’ve run a marathon then taken a sedative. The muscles feel like jelly and you’re fighting sluggishly to stay conscious and everything feels like you’re fighting through mud. But I havent felt like that for a long, long time. That sound anything like what you experience?
What about second breakfast?
IG: https://www.instagram.com/kissofdarkness1/
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@kissofdarkness wrote:
The best way I can describe it to someone is as if they’ve run a marathon then taken a sedative. The muscles feel like jelly and you’re fighting sluggishly to stay conscious and everything feels like you’re fighting through mud. But I havent felt like that for a long, long time. That sound anything like what you experience?
That is him………………good descrippy !
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@sybyllascarlett wrote:
Sybylla[/color]He did come up with some sort of logic……..
Pointing to my list of 18 or 19 symptoms, he said that four or five of these under
certain circumstances could present together to explain one thing or other. It did not match
his number one theory as the DNA test had come back inclonclusive but it does seem to advance us
and he knew which other specialist he was going to consult with in a few weeks.I see this logic too, that it is damn confusing but we are moving forward, excluding somethings
and looking at broader strokes. There may be some partially undiagnosed, hidden aspect that
explains some of these complex interractions."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.Could it be as simple as the quality of sleep you get due to positioning/breathing isnt sufficient, which is then exaggerating your other issues? Everything’s worse when you’re tired…or has overnight breathing tests ruled that out?
What about second breakfast?
IG: https://www.instagram.com/kissofdarkness1/
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@kissofdarkness wrote:
……. as if they’ve run a marathon then taken a sedative. The muscles feel like jelly and you’re fighting sluggishly to stay conscious and everything feels like you’re fighting through mud. But I havent felt like that for a long, long time. That sound anything like what you experience?
Just like that, then there is a tipping point followed by sudden expending of sweat. I have called
this my “muck sweats” but the tehnical term is drenching sweats. To me the body saying, enough
is enough, we have no strength left, we need to suddenly and quickly cool down (sweating)and we need
to sleep and regain strength.Marathon is spot on, someone said I looked like grandad had just run a marathon in the rain.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@kissofdarkness wrote:
Could it be as simple as the quality of sleep you get due to positioning/breathing isnt sufficient, which is then exaggerating your other issues? Everything’s worse when you’re tired…or has overnight breathing tests ruled that out?
After initial problems Sarah, Louise and others sorted out my CPAP machine so that I
have been getting the best, fullest sleep in ten years. Which is what makes it so confusing."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@taungfox wrote:
After initial problems Sarah, Louise and others sorted out my CPAP machine so that I
have been getting the best, fullest sleep in ten years. Which is what makes it so confusing.That sucks. Hope the doctor he consults with can think outside the box – wonder what they’d think it was if they ignored the fact you have MD and considered the other symptoms….sometimes I think professionals get too blinded by MD to consider something unrelated.
What about second breakfast?
IG: https://www.instagram.com/kissofdarkness1/
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.Hi Fox,
Yes I feel exactly like that. I also find it difficult to follow programes like Eastenders and Corry. I especially find being with people, even close friends completely knackering.I don’t have an explanation and I’ve never heard one from any of the doctors I’ve seen. I think it’s probably just that because my muscles are so weak that it just takes so much more effort and energy to do the basic things like breathing and holding body and head up.
Not clear on the details of the biochemistry but it’s probably a lot to do with the production of ATP and the storage of glycogen in muscle. (Glucogen becomes glucose and is used as fuel to produce energy). If we have less good muscle then we must have a reduced capacity to store glycogen in muscle so there is probably less glycogen/glucose available in our body’s as fuel. It is also stored in the liver but more is stored in healthy muscle.
Nothing more to add other than “hear hear” and I’m completely knakered too.
MichaelRe: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@michaelmcd20 wrote:
Hi Fox,
Yes I feel exactly like that. I also find it difficult to follow programes like Eastenders and Corry. I especially find being with people, even close friends completely knackering. I don’t have an explanation and I’ve never heard one from any of the doctors I’ve seen. I think it’s probably just that because my muscles are so weak that it just takes so much more effort and energy to do the basic things like breathing and holding body and head up.Not clear on the details of the biochemistry but it’s probably a lot to do with the production of ATP and the storage of glycogen in muscle. (Glucogen becomes glucose and is used as fuel to produce energy). If we have less good muscle then we must have a reduced capacity to store glycogen in muscle so there is probably less glycogen/glucose available in our body’s as fuel. It is also stored in the liver but more is stored in healthy muscle. Nothing more to add other than “hear hear” and I’m completely knakered too.
MichaelThanks so much Michael. This is it !…….and a lot of logic and even explanation. Thanks.
Even to holding my head up and needing a bewildering array of neck rests. Even to explaing
why suddenly I keep dropping things, or tripping………..Less good muscle is a wonderful phrase, less
able to store the bodies fuel is a stunning logic……..and we will both be knackered from
thinking it all through….. (and there goes the rest of the day). I assume without fear of contradiction
there is a lot of staring into space and avoiding people. Thanks."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@ClaireF wrote:
Sorry to hear about how you’re feeling Taungfox, I don’t think I’ve ever had that level of tiredness but I do notice if I over-do it one day I can be feeling worn out for a few days after and need to stop and ‘recover’ (as much as I can lol)
Thanks !
That is how it starts.
The MD regional advisor about two years told me to work on an “Alternate Day Syndrome”. Not to
arrange two appointments on consecutive days. I thought she was crazy. Now I understand. After an
appointment day I am just wiped, nothing is going to happen the next day for sure and often days
afterwards."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.I guess part of the reason I don’t post on here that often is for reasons like this. I want to say something, to offer advice, help. I can’t because I don’t share these experiences. It has been said by myself and others that we feel like a fraud. Then I wonder if this something I have coming my way. For those of you that don’t know. I am 32, I smoke a lot, I drink a fair amount. I don’t sleep much. I don’t do myself any favours. It kind of feels wrong.
All I can offer is….. RESPECT.
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.Hi,
I’m 47 now and was able to do pretty much everything till I was about 36. I smoked till I was 32, drank and tried most things and didn’t hold back much. As I’ve got older and less strong I find I just can’t do it. Enjoy yourself and if your body starts telling you to slow down do it then but only if you have to. I hope you don’t need to.
MichaelRe: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.Hi all! I am 25 from the state of Nebraska in the U.S. I’ve been clinically diagnosed with Bethlem Myopathy. Although I would say my condition, at present, is mild as I don’t need any walking/breathing aids I do have to say that my number one complaint is fatigue. It’s almost like someone is drugging you and giving you a sleeping pill, although I never fall asleep, I do become very weak and extremely exhausted.
As I said, I am not on any sort of disability and have not mentioned anything to my workplace about my diagnosis but there are times when I get so fatigued that I just need to pop into an empty office and sleep for 15 minutes. Every morning I wake up and NEVER feel refreshed. I’ve been to an overnight sleep study before and they said that my breathing was fine but could definitely conclude that I am very sleepy (DUH!! lol). I’m glad that I am not the only one experiencing this and that I am not alone. My neurologist wasn’t quite sure why I was feeling so sleepy with MD other than the fact that my muscles are overcompensating for their weakness which exerts more energy and thus causes the tiredness. I like the hypothesis that someone wrote above about ATP and glycogen and healthy muscle. That’s also another great idea.
By the way, I don’t smoke and rarely drink. When I do drink, I find that my muslces burn really bad and hurt about 5 minutes after consuming an alcoholic beverage. It only lasts for about 1-2 minutes and after that I’m fine. It doesn’t cause me to stop what I’m doing (talking etc.) but it definitely feels uncomfortable.
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.@mistyice26 wrote:
I do have to say that my number one complaint is fatigue. It’s almost like someone is drugging you and giving you a sleeping pill, although I never fall asleep, I do become very weak and extremely exhausted.
I’m glad that I am not the only one experiencing this and that I am not alone. My neurologist wasn’t quite sure why I was feeling so sleepy with MD other than the fact that my muscles are overcompensating for their weakness which exerts more energy and thus causes the tiredness.
hen I do drink, I find that my muslces burn really bad and hurtfeels uncomfortable.
Hi Misty,
Thanks your input on this thread. Fatigue is a very misunderstood aspect of MD but no one should doubt
that it is very real and can cause enormous difficulties.I am only finding now that I fully understand advice the MD people gave to me two and three years ago. I
thought it was crazy when they told me not to arrange appointments on two consecutive days. Now
I wouldn’t dream of doing that and know the consequences. My new consultant came out with a stunning logic
last month about how it is when four or five of my syptoms interact together that the worst consequences
appear and cause falls or blackouts. On a bad day, just a small problem with my breathing has large
consequences where on a good day I can cope with more. We are so fortunate in the UK to have
a network of MD Regional Advisors who are trained in all aspects of the condition and give us
expert advice. Mine has given me a series of “Coping Strategies” that enable me to
reduce the level of the problems of living with MD. Getting the right advice is vital. I
am sure there will be similar advice in the USA somewhere.Your sleeping in an empty office is a good coping strategy. We must obey what our bodies are telling us.
Just being aware of the problems of fatigue is a very good start.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.This is a really good thread.
I dont think anyone understands who debilatating the the mind numbing fatigue is. I know in the early stages when no one believed I had muscle disease I was tagged to have ME and I would tell docs I was exhausted and not just a bit tired as the fatigue was extreme and I was uncapable of doing anything else until I rested and slept for long periods. It wasnt until I got seen at a Muscle Clinic when the coin dropped and now when I say it I get understanding to an extent.
I have learnt the hard way in terms of my energy levels. If I do to much I have wipe out and need loads of recovery time. I regularly have a lie down during the day, which I wish i didnt have to but it helps me do more. I have others help me with the more taxing tasks. Physio advised me to use the lift and not the stairs at work as my legs are now failing, not managed to so that as it feels like giving in but I dont it on the really bad days to conserve strength. I do my shopping online. My energy levels improved when my ventilation needs got re-assessed that said I have sent most of day in recovery mode after a really busy week, thats a price I pay as I want to continue working and maintaining what independance I have left. I have come to accept that I need to ask for help now.
My advice to your friend is to live her life more, if she is feeling so bad that she stays in bed is that she speaks to her specialist. Yes living with MD is not easy but giving up is not the answer as my many of us are positive and live. It sounds like your friend believes the only way is down hill and has given up. Has she had any support to deal with coming to terms with this..I had counselling to come to terms with it, it helps me deal with the anger and frustation to an extent but I had to get there in time my own way. She is lucky to have such a caring friend as you
Good luck
GillRe: Soul Deep, Mind-Numbing, All Encompassing, Body-Ripping.Taung Fox and Gill,
Thank you for the replies.
Taung Fox–that’s great advice that you were given years ago. I don’t feel that I am at the point where I have to schedule appointments more than 2 days apart. I do feel that I’ll probably eventually be there but for right now I think I can handle it. I’m sort of afraid for the future. I can see me pushing myself now to a point that I may be able to do less when I’m older. But, I want to get all I can done while I can still do it.
I’ve heard that yoga is especially helpful to keep the muscles long and healthy. I’ve done some basic yoga before but get frustrated because I can’t stretch as far as even the most “tense” healthy people. I know that everyone excels at their own pace but it just frustrates me a bit.
Do any of you find that you retain more water when you start exercising? I gain 2-3 lbs. as soon as I start a walking program and won’t lose it until at least the second month of it. It’s a bit annoying lol. I’ve heard of the phenomenon that says water surrounds muscles that have been worked out too hard to try to act as a barrier and “protect” them. I just didn’t expect it to last so long. Our muscles are different than others though.
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