HELP SCARED ME/CFS!: Hello anybody else suffering... - EDMESH

EDMESH
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HELP SCARED ME/CFS!

Mnsangel91
Mnsangel91

Hello anybody else suffering from sleep apnea breath or air hunger with this disease? I've lost 20 lb in like less than 2 months and I have what is called like a cancer body where I've lost muscle tone all over my body so I'm really flabby and I get brain shakes and chest pounding and Tremors all over my body and I've been bedridden and I haven't been able to eat properly because I'm not sure if this has to do with the illness or not but I already have like chest pressure and pain in my neck as well and my back and then when I eat or drink the pain and pressure gets even worse and it hurts profusely and I can't breathe properly also they have been able to find anything wrong with me they say that everything comes back normal but they haven't been able to take blood for me or IVs in me and I'm always tired all I want to do is just sleep all day and all night and my appetite hasn't been the same my Hunger is like going away I have black eye floaters and my hearing has been weird as well and my skin has been super dry. Now I've been getting muscle twitches in my neck now and I've had extreme dry eyes and dry mouth and throat I can't even function I get winded so easily and dizzy so easily I'm only 27 years old so this really sucks. I need answers anybody that can help would be greatly appreciated because it feels like I'm dying slowly but surely I'm trying to gain control over this but it's scary and I don't know what to do anymore I just want to know if what I'm feeling with this disease is normal?????

6 Replies
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Poor you! Sounds awful. Sorry, I can't be of any help. I hope you have support around you and you improve soon. Good luck x

i hope you get some help with this, I am suffering from a chronic fatigue like disorder for over 3 years now and also have been diagnosed with mild to moderate sleep apnea. Probs arose when i was 28. Did you manage to get a diagnosis for CFS?

Good luck with everything

Hi, I have exactly the same symptoms. Like someone sitting on my chest and I can't get proper breath. Sometimes its like my body forgets to breathe. I have bad pain in chest as well worse for eating, moving. I've been to a&e many times, twice got an antiinflammatory jag as they thought was costochondritis. Other times told I was having a panic attack, when I was perfectly calm even though was in pain and couldn't breathe with it!

I have been put on various pain meds for it and even been given diazepam. I try not to get anxious or angry anymore but it is hard! Professionals haven't a clue how m.e affects us and what to do. I think we know more ourselves with help of sharing our info.

Ive looked into costochondritis a bit as even if m.e is affecting similar soft tissue/muscle it might be helpful. I try to get osteopathic treatment and massage to keep rib/sternum hinges moving and rub in ibuprofen gel, although need try natural things like camphor or arnica. Mindfulness is good for breathing and calming our systems a bit and herbs like Valerian, chamomile, lavender.

Someone posted that in m.e our brain is sending wrong signals to our bodies too which I found helpful to keep in mind.

I've been reading about spasms too and the nervous systems, interesting as m.e is neurological.

It sounds like you've been to get heart, lungs etc checked out which is important.

Hope some of the info helps. I even find it a bit of a relief to know others have same symptoms!

Best wishes x

It's just crazy because I feel like I'm like slowly but surely dying and then it's like all I want to do is just sleep I have no energy and brain fog won't go away and then it's like I have like muscular and joint pain all over the place and I'm like skin and bones I try to stay active but so hard this is been going on for like the last 2 months almost 3 months and I thought I was going to get better but I feel like I'm getting worse and worse and all of this started happening to me after I started using antidepressants and different medications really messed me up

I have very similar symptoms.

You hit the nail on the head when you said it is as if the body forgets to breathe. Its terrifying and feels like I am about to die (and I am in my 30s).

I have been through so many terrible events in a short time , such as my brother unexpectedly dying, and my Mom having a stroke, (amoung many other things) so I wonder if this could be stress related, but I really do not know.

Symptoms come out of nowhere and they include:

Lightheadedness

Blurry and distorted vision

Diarrhea

Extreme difficulty in taking a deep breath (as if the air stops in my throat and doesnt reach the lungs)

Dizziness,

Confusion, and

the overall feeling of blacking out.

In addition to this, I have constant body pain and joints that hurt and crack with every move.

I hope we can all figure out what causes these issues and all be happy and healthy.

It's just crazy because I feel like I'm like slowly but surely dying and then it's like all I want to do is just sleep I have no energy and brain fog won't go away and then it's like I have like muscular and joint pain all over the place and I'm like skin and bones I try to stay active but so hard this is been going on for like the last 2 months almost 3 months and I thought I was going to get better but I feel like I'm getting worse and worse and all of this started happening to me after I started using antidepressants and different medications really messed me up

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