Ever feel like you are dying ?

[SaveMe]

I feel like I am dying.
I am just so fatigued like you wouldn't believe and its getting worse.
my body just feels like its rotting away in the inside.
Damn my doctor.

Its hard to articulate how I feel but it just feels like im about to go.

--->It takes too much energy to breathe. (im out of breath)

anyone ever feel like this?

 

[Boule de feu]

Hang in there, kiddo!

I know exactly what you mean.

There are days I feel like i'm having a heart attack. Others, it's a burning sensation in my lungs which feels like severe pneumonia. I also get what feels like food poisoning. While going through this, I get real scared.
I wish it would stop.

 

[SaveMe]

thanks Boule de feu,
yeah, i keep my cell phone next to me at all times--im scared too. But when I get this horrible malaise/ dying feeling it lasts hours then goes away (in cycles so it fluctuates). It seems worse at night for me. How would you describe yours? how long does yours last?

 

[Boule de feu]

Before knowing I was sick, I would rush to the ER each time the food poisoning episodes would take place. I would be dehydrated, vomiting, pale but there was nothing in my blood. Looking back, I can see that it was CFS. I finally realized that what was making me sick (or sicker) was the fact that I was always pushing myself. My body needed to rest.

Now, when I feel an episode is about to happen, I lie down right away. I don't fight it. I try to sleep for a little while and when I wake up, it's not as severe. It works for the strong chills I get every afternoon (my whole body is shivering). When I wake up, i'm perspiring, I am warm to the touch. Nothing else will make them stop.

You have to learn to pace yourself. You must force yourself to lie down throughout the day. Without interruptions (no TV, iPod, computer, music). If you can learn to meditate or listen to very calming/soothing music, it does help. Your brain and body need to recharge. Get yourself a good meditation CD. Play it over and over. I fall asleep while listening to mine.

The minute I feel better I tend to push myself harder. It's a BIG BIG mistake!

Learning to rest will do wonders.

P.S. Like youre, my episodes also come and go. Luckily, we know they are going to go away. Some CFS patients are not as lucky as we are.

 

[frenchtulip]

When I have over-extended myself and used far too much energy, the "big crash" comes on. The most concerning part of a major crash is the aching and burning sensation in the area of the brain stem. I do feel that the illness could be life-threatening at that point, and I take it easy until "burning brain sensation" subsides.

I wish a lot more research could be done on patients during the times they are experiencing major crashes. I believe it could be quite revealing.

 

[justy]

Hi Save Me, i have had the experience of feeling like im going to die many , many times. It is always when i have overdone it in some way, when i first relapsed it could of been a small thing like having a shower or trying to hold my arms up to brush my hair, now im on the way to recovery i still get it but after overdoing it by more, like trying to have a walk or a spot of gardening. I always lay down straightaway when this happens now and also keep warm and have something to eat. Within a few hours i usually feel ok again. Boule De Feu has given you very good advice above. I would suggest that if you are having episodes like this regularly then you are doing way too much still and need to spend more time resting and learning about pacing, it really is a very necessary skill and you cant recover without enough rest.
Take care, Justy.

 

[August59]

Hey Save Me - I've had that feeling a few times and I will add that a couple of times I wanted to die. I was having air hunger so bad at one point I was having severe anxiety about falling to sleep as I knew that I would not wake up. I think I took catnaps for a few weeks while sitting up and that was all the sleep I got. Well, I'm still here and I'm glad. About 6 years ago when I first came down with ME/CFS there was no XMRV or much of anything else to pin hope for recovery on.

We had the methylation protocols (in some form), ALCAR and ALA were starting to make some waves, Dr. Chia was making some interesting discoveries, Dr. De Meirleir provoked interest in the H2S theory and we had all kinds of homeopathy, herbal and nutritional treatments. We also had HBOT (hyperbaric oxygen therapy), ozone therapy and a variety of enemas (not me). This is just a small portion of the hundreds of different things for us to pursue at the time.

Skip to the year 2009 and we get the discovery of the XMRV virus by Dr. Mikovits. That was a very defining day for PWC's and not so much the virus, but the attention that it bought to ME/CFS. There are 4 other events that I personally think will play a very important part in the understanding of ME/CFS. The 2 completed spinal fluid studies by Dr. Baraniuk and Dr. Schutzer and the soon to be follow up study by Dr. Baraniuk. The last wasn't so much a study but the symposium that was held in Australia this past year. If in fact XMRV is proven to be the cause of ME/CFS, just taking anitvirals is not going to heal us. There are biological systems that are broken and will have to be fixed (this is probably not the best terminology).

All I'm trying to say to you - Save Me, is that as terrible our disease is things look brighter now than they ever have. The words "Save Me" somehow seems very possible and is very much a reality, instead of being just a dream like it was to me just 4 or 5 years ago. I'm not going to say that it's a good time to have ME/CFS, but it is better than any other time in our history. At least in my eyes it is and I hope you stick around with us for a long time.

Hope you feel better soon!
August59

P.S - I forgot to mention the GcMAF treatments!

 

[Mya Symons]

Hi SaveMe. When I first got sick I did not have good health insurance. I was so sick that I thought for sure I had cancer and they weren't able to run the right tests. Now I wish it was some type of (curable) cancer in the beginning stages. Then I would have a chance to get better. I think things got better as time went by becuase I have gotten used to feeling this way and I know I am not going to die (not right away anyway). At lease the fear part is gone. Like August59 said, it does seem like we are getting closer to answers and the help we need. Hang in there and hopefully things will get better.

 

[SaveMe]

inject our blood into mice and watch what happens.....they DIE.

You see the government is not your nanny, they're your dealer, and they subsidize illness in America. They have to--there is too much money in it.
You see theres no money in healthy people and theres no money in dead people--the money is in the middle. People who are alive (sort of) but with one or more chronic conditions that puts them in need of medications.