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@Pauline_Benjes
3 жыл бұрын
Oh wow! You are the first person to tell me about 'shaking on the inside'. YES! I can totally relate!! That happens to me. It's horrid. I shake like Angela Merkel, but you can't see it. It's on the inside. My head shakes so bad. My pain is mostly in my thighs. The pain is sooo deep inside my thigh muscles, like to the bone. Nowadays it's also in my arms. Yes, I get appendix pain too, but I don't have one anymore. I get this weird feeling inside my head. Like my brain is swelling, putting pressure on my skull, like it's stuffed tight with cottonwool. I can't think, I can't keep my eyelids up, I get terrible yawns. Sometimes I feel like I could just collapse and passout. I feel like a bucket of water has been tipped over my head and I'm going to pass out. Thank you so much for telling me your story.
@ElinorBrown
3 жыл бұрын
I'm sorry that you have so much pain, but I'm glad my video can be relatable to you 😀
@user-cb8sg9py7r
2 жыл бұрын
That's one of my scariest symptoms too
@budgejudge5245
3 ай бұрын
Do you think it's covid related Pauline? I have very similar symptoms in my head, my head symptoms are worse with PEM. When I wake I feel heavily hungover almost and it takes me ages to get going.
@Jules-zw7iu
Жыл бұрын
The cracking in your joints isn't harmful in itself. It is simply gas escaping from your joint that naturally builds up there. When you get stressed and anxious your muscles will get tighter as they do for most people. 'cracking' is your body's way of releasing that tension (it works like a reset button to your nervous system telling those areas to relax and reduce pain). Many manual therapists (i am one of them) will even use this as one of their therapeutic techniques to help release tension and 'reset' the nervous system to stop sending pain signals to an area. This can be particularly helpful where there is no actual tissue damage but the body gets used to sending/receiving pain signals from that area! So don't worry about it. There is potentially a risk if you use this too often (maybe more than x1-2/day) that your joint will become a little 'too loose' from frequently loosening it up with the 'cracking'. In order to prevent this, help these body areas loosen up in different ways - stretching, heat and/or massage! Hope this answers your questions around this topic! :)
@ElinorBrown
Жыл бұрын
thankyou so much! this is helpful!!
@HannahFrostFreespiritedwarrior
4 жыл бұрын
Why are so many of these so relatable and well explained even though they sound totally random to the average person! My neck is also so cracky and grindy.
@ElinorBrown
4 жыл бұрын
Thankyou so much !!! I'm glad you find it relatable! and im so pleased you think i explain it well, i was really doubting that when i was filming, there was a lot of rambling!
@freiagalacar3465
4 жыл бұрын
Same things happen with my knees buckling, it's so embarrassing. It happens to me when I get too relaxed or tired when I'm walking and my brain is like "I want to sleep now"
@ElinorBrown
4 жыл бұрын
haha, it is a constant annoyance, i dont find it embarrassing among close friends and family but I am always a little scared of falling over in public. its not happened yet though, i think because i am extra careful in public, so if i feel weak or dizzy etc I find a place to sit and rest.
@johnkenn5320
3 жыл бұрын
Thank you for sharing. I have experienced the "can't move". My primary problem is with the "sea legs" dizziness. A swaying of everything around me.
@ElinorBrown
3 жыл бұрын
Thankyou 💖yes dizziness is so annoying, and makes it really hard to do things.
@nicolesaldarriaga2643
3 жыл бұрын
The “shaky on the inside” thing!!! I get that ALL THE TIME and I’ve never heard anyone else talk about it! Omg thank you!
@e.williams13
3 жыл бұрын
I get it too! I take Ativan for it.
@ElinorBrown
3 жыл бұрын
wow! i've never heard of other people having it either! that's so interesting! 💖
@ElinorBrown
3 жыл бұрын
Does it help?
@e.williams13
3 жыл бұрын
@@ElinorBrown oh yeah! Its the only thing that helps.
@Pauline_Benjes
3 жыл бұрын
Me too! I get the ‘shaking on the inside’. I thought I was alone in that. Drs don’t know what I’m talking about. But you do!
@wobblydogcreations2521
11 ай бұрын
Yes, yes, yes!!! The inside shaking - like there's another me that's like 1mm smaller inside and it gets tremors all the time. The pain moving too, but also itching - it's maddening because i can't find it! The balance thing i can totally relate to, and poor lighting makes it so much worse. Also, when I'm experiencing PEM, my right foot doesnt lift as high as i think, and I crack my toes on the bath, a step, or just trip and/or fall.
@stuartdouglas5039
2 жыл бұрын
A lot of them relatable, especially the shaky on the inside !
@ElinorBrown
2 жыл бұрын
I'm so surprise how many people relate to that one, i thought it was really weird!!!
@AprilLeighchronicallyme
2 жыл бұрын
I have a lot of these. I use noise canceling ear buds when I go to a busy noisy place . It helps so much!!! It just takes the volume to 25 percent so I can hear but it’s not overwhelming sounds and I feel less overload of overall over processing feeling I get in a theme park or a big Group of people or a loud place. After I’m in a loud or busy place it brings in a migrant body pain an flare up of all my symptoms and the earbuds cut that down like 50 percent or more for me.
@TanyaWestley
Жыл бұрын
I can relate to so many of these. Sensory overload is one that gets me so frustrated. I have BPD so always over-emotional haha. Shaky on the inside is something I have an have never heard anyone else talk about so good to know I am not the only one. The disappearing or moving pain is something else I get, it's so confusing and I tend to get it in my forearms and thighs a lot. My ankles give out like your knees do - the amount of times I have rolled an ankle from being literally stationary is unreal. Thanks for the videos, it is so nice hearing someone talk about stuff I can relate too, though of course I am sorry you go through this stuff x
@Aurleis
Жыл бұрын
Just recently came across your channel. Had ME from May 2015, but only last few years it's gotten bad enough to the point of trying again to seek help. So, on a number of these, I can absolutely relate. When I walk it feels like I'm wearing oversized, heavy winter boots and trying to move through knee-high mud. I can also understand when you need to get up from bed to use the bathroom and you're trying to tell your legs and arms to move, but they just don't want to move.
@soulstrong
9 ай бұрын
Thank you for making this video. I hope since the three years you recorded this you have better mitigated your symptoms. I too have ME/CFS and have had some of these, most distinctly the weakness in my knees and their buckling.
@zomerbloesem9371
2 жыл бұрын
The can't move sounds like a type of executive dysfunction. In the neurodivergency community, many people get that "being stuck"/"can't move" feeling. Sensory overload is also common in neurodivergent folk btw if that's something you want to explore. There's many tips out there on how to prevent sensory overload either way even if it's a chronic illness symptom rather than a brain wiring thing.
@indi4391
8 ай бұрын
Wow - I can relate to mostly all of these! Thanks for the videos they help with not feeling so alone with this condition ❤
@ElinorBrown
8 ай бұрын
You're so welcome!
@KitD2365
8 ай бұрын
I totally have the moving pain thing!
@ChelleOnWheels
2 жыл бұрын
I related to so much of this. I also get sudden collapse. I have dysautonomia. I've been following your channel for a long time, and I just find our experiences so similar I can't help but wonder if we both have the same condition and are just calling it by different names.
@Steampunk_Ocelot
3 жыл бұрын
I've never had full body stuck but my hands used to freeze up for a while, it was like the feeling when your leg goes dead from sitting on it funny despite not leaning on my arm at all , it seems to have stopped over covid because I haven't been straining my body as much
@ElinorBrown
3 жыл бұрын
Thats so interesting!!
@jacki_b
2 жыл бұрын
Hi, I know this video is from a year ago and I don’t know if you’ve had it diagnosed once then, but the random moving aches and pains could be fibromyalgia, which has a lot of overlapping symptoms with CFS. It’s diagnosed mostly by ruling out other things and checking some ‘tender points’, but might be worth looking into ☺️
@peachboye
2 жыл бұрын
the cracking thing happens with my lower back. sometimes i'll arch my back and it'll just Pop and if it does that a bunch of times i know what kind of day it is
@lizajane99
Жыл бұрын
I have experienced this paralyzed few moments upon going to sleep and it is so scary to me. I was awake and couldn't call for my hubby or even open my eyelids. The trigger for this for me is getting too tired. I mean so tired you cannot stay awake another second. Then it happens, My brain is perfectly awake but I cannot move a muscle. I do not allow myself to get that tired any more. Have experienced working so hard upon waking to move, I work with my arms first moving my shoulders if possible then my arms then trying to make myself roll over to my back if I'm on my side. I hate this so much. Loathe. Sensory overload same. Shaky on the inside, I thought it was my low sodium, now I'm not so sure, and shaking on the outside and jerking like TMJ, I just stay home. I was standing, brushing my sons hair. Fell over backwards like a stiffened ironing board. I will fall like you exactly explain. Tension, all of a sudden I will notice my shoulders are almost up to my ears. Then I stop whatever I am doing. lower them and do the round shoulder exercise. Thank you for sharing. I mostly feel on the inside like I'm me in here, inside. It's still me. What is up with my body doing all these strange things? I feel separated of who I really authentically am, verses this body I wear.
@einbisschenwasvonjenem
Жыл бұрын
Interesting. I have Postcovid but until now no diagnosis, because the doctors refuse to diagnose what they don't know. The feeling of the uncomfortable organs you described I had now several times with all my teeth and the tongue.
@ElinorBrown
Жыл бұрын
hope your doing ok!!
@Annmarie123ize
3 жыл бұрын
I have all these symptoms and many others, Yeah the tremors inside make me feel anxious and nausea. Sensory overload send me in to paralysis my body just shuts down.
@ElinorBrown
3 жыл бұрын
Sorry that you have all the rubbish symptoms but it is a bit nice to know that other people are experiencing the same thing!!
@andybreedlove
9 ай бұрын
Yup, sensory overload paralysis too.. How are you doing now?
@Enbiienvy
3 ай бұрын
OMIGOD THE NECK CRACKING THING
@rafnaegels8913
4 жыл бұрын
How are you so well spoken as a CFS Patient? Tell me your secret!
@ElinorBrown
4 жыл бұрын
hahaha! Thankyou! I film on good days, make notes about what I'm going to say and edit out a lot of 'ums', forgetting words and terrible explanations! 😂
@rafnaegels8913
4 жыл бұрын
Elinor Brown do you also practice your script before filming? I have no social life. So i sometimes speak less than 50 words in a week.
@ElinorBrown
4 жыл бұрын
@@rafnaegels8913 I don't, i just write bulletpoints, and then just ramble about the point im trying to make. But that's probably partly because at the moment I'm living in a house full of people so I speak a lot, so i'm pretty used to it. But i used to struggle a lot more with talking, especially with unfamiliar people, I would write a script (with help) and practice for phone calls to the doctor or rehearse what i was going to say to a receptionist in the car etc to reduce the anxiety.
@kelviannaepperson3677
3 жыл бұрын
I have some or all of these same symptoms
@lushalicious1237
3 жыл бұрын
I swear I could be saying all these things x
@KitD2365
8 ай бұрын
Could your appendicitis pain actually be ovulation pains? That would explain why it's on both sides.... I used to get them and always went through the "oh, no, appendicitis!" fear before I remembered what it was.
@freiagalacar5786
4 жыл бұрын
do you have any advice for getting a doctor to diagnose you, take you seriously and run tests?
@ElinorBrown
4 жыл бұрын
Freia Galacar it’s always a tricky one, definitely try multiple doctors if one dismissed you find a different one! There are really good, caring and helpful doctors out there! I would also take someone to appointments with you, it can be easier to stand up for others than it is to stand up for yourself and it is also harder to dismiss someone if there are witnesses. Also keep going back and demanding something be done, quite often, doctors assume if you don’t come back, it’s fixed or it’s not that bad!! Sorry I don’t have a better answer, those are my best tips 💕 hope this helps, let me know how it goes 💖👍🏻
@user-nb1kh4ke7z
3 ай бұрын
Personally I asked them to tell me why I DON'T have ME/CFS. How can they argue with symptoms they can't run tests on? Also, I've found doctors who are up to date with pain management strategies tend to have probably the closest grasp of where this is coming from, since pain is often of unexplained origin as well. Oh, and call it ME, not CFS, or all they hear is "fatigue".
@estherekhator27
11 ай бұрын
I can totally get being shaky on the inside, for me sometimes I feel like I’m trembling inside but there’s no outward reaction.
@cre-k8-ive
2 жыл бұрын
I relate to a lot of this! I am not diagnosed with ME CFS but have all the symptoms and have done tests to exclude almost everything else. The random pains and joint popping is so common for me. I'll feel my bone hurting or a random stabbing muscle or joint pain and it goes away with time. My joints pop, especially when it's cold. It's usually painless, but sometimes can feel like it's popping out and hurts a lot. And the collapsing! My knees just give out, especially after exertion and it looks like I've tripped. I've gotten quite good at catching myself and continuing to walk.
@ratfacekick
2 жыл бұрын
Im 95% sure you have Ehlers Danlos Syndrome and/or Cranio Cervical Instability, probably caused by mold exposure from a water damaged building ( your home most likely) also known as Chronic Inflammatory Response Syndrome. CFS/ME is the same as CIRS
@ElinorBrown
2 жыл бұрын
This is interesting!! I'm pretty sure I don't have EDS as I really don't have that many of the symptoms!! I've never heard of Craniocervical Instability, but I've looked it up and I do have some of the symptoms but i would guess, no where near enough for a diagnosis. I've also never really been exposed to mold.
@ratfacekick
2 жыл бұрын
@@ElinorBrown I would almost bet my life that youve been exposed to mold hidden in the walls/ceiling/basement of your home or school/work, or had exposure to toxic algeae blooms. This is coming from someone with CFS for 15 years whos tried and researched everything. Look up CIRS
@ChronicallyMichelle1995
2 жыл бұрын
Most days I can barley walk on my ankles we don’t know why, ME/CFS is 1 of 13 medical conditions but my ankles don’t have anything wrong with them but so bad I’m on narcotic pain meds and am now using a wheelchair most of the time due to the pain very weird
@ElinorBrown
2 жыл бұрын
Bodies really just do things that make no sense!!
@Truerealism747
9 ай бұрын
Are you hypermobile
@shahilagh
3 жыл бұрын
so true and similar ... anther
@PerpetualTiredness
4 жыл бұрын
How long does it take you to recover after exerting yourself? Nice name by the way.
@ElinorBrown
4 жыл бұрын
Hi, It depends on what I've been doing! i used to take weeks if not months to recover from overdoing it, but now it usually only takes a couple of days to get back to my 'normal'. I think this is because 1. I know what my body can handle now, so i over do much less extremely 2. i'm also much less severe than i used to be so i recover quicker, and can do more withing my limits, so i'm less tempted to push it.
@mariamaria2751
8 ай бұрын
Internal vibration.
@kastanymusica
6 ай бұрын
Isn’t getting “stuck” executive dysfunction from ADHD?
@ElinorBrown
6 ай бұрын
I think I do have a lot of executive dysfunction and you are right getting stuck is probably one of those things! Though, for me it most likely comes from ME/CFS, anxiety or depression, as they are all also linked with executive dysfunction.
@louisedoughty5711
Ай бұрын
moving pain sounds a bit like fibromyalgia
@Annmarie123ize
3 жыл бұрын
Pain, cause by neurotransmitter sending wrong messages.
@samrobinson5130
2 жыл бұрын
Have you been tested for anything else? Like have you seen a doctor for these things?
@ElinorBrown
2 жыл бұрын
I've been tested for a LOT of different things!! M.E is my diagnosis. Yes, I've talked to doctors about all these symptoms, but you know how they are, when they cant find anything through tests and scans they are pretty lost.
@samrobinson5130
2 жыл бұрын
I totally understand 🥺 I was mainly wondering about EDS. We’re in the ruling out stage that’s why I ask.
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