Im very severe and getting worse please help

lenora

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That's really true.
The older you get the more you have the opportunity to reflect back on the past and remind yourself you felt exactly like that in the past.
It's funny (not funny) how when you're in the middle of it you can't imagine that you'll ever feel better.
I remember when I couldn't eat for weeks on end. I managed to force down about 250 - 300 calories a day. The longer it went on I thought, "how am I ever going to want to eat again?"
But somehow, someway it did end and I eventually got back to my normal being excited to eat food. I honestly couldn't imagine that I would ever enjoy eating again at the time.

Yes, we travel many different paths and begin to understand so many other illnesses. I never thought I'd be affected by something that was anorexia, but shingles turned me into an anorexic and the thought of food in any form was completely nauseating. I hated the feeling, but could do nothing except force small amounts of food down myself per day.

Little by little it did lift. I was still quite underweight, but I was kind of, sort of enjoying food again. Then I was put on steroids...and boy, did I gain weight. So now I'm battling being somewhat overweight and the problems that can cause (diabetes, more cardiac problems) even though I'm eating a proper nutritious diet, low in calories.

It's all rather difficult to deal with. Of course it also depends on the specialist (b/c almost everyone is a specialist today) you're going to see as to what is most important.

Like @Bobble said, I also couldn't tell you when I returned to the eating world again...but I did. We do slip back and forth with this illness. Good health to all of you. Yours, Lenora.
 

lenora

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My psychiatrist has me starting diluxitine/cymbalta. I hope it mellos me out. For me, its the just laying there cant talk, look at ohone. Im sound light and motion sensitivite now. Im onlybon because of ny adrenaline.
To be honest, ive been pushing with adrenaline for two months so it may have developed once i decide to survive this crash if i can like all of you did. Its so scary and uncomfortable. Only pain I do know of now is my brain burns due to me constantly causing Pem researching and looking at my phone. It even burns when i talk or my nerves crackle and my muscles be feeling stiff and i get tingly like feeling. Other than those things no, I dont have any. Now I know icepacks though. Thank you!!

@Ladycreole03.....Good Morning. Well, perhaps a better morning? Can you move your body at all while in bed? Parts of it such as your legs, arms...any of that ? I'm thinking you may be developing fibromyalgia and that could be the reason your muscles are getting stiff (and then will become painful). Gentle (very) movement may help.

Yes, I understand that adrenaline is what keeps you going....we're thankful for it at times, and yet it can also put us in an even worse state if we're not really careful.

I'm sure you're aware of this, but bear in mind that each of us can have a different reaction to the same drug. It does usually take about 2 wks. for side effects to get down to a tolerable level. Don't stop this suddenly, but do contact your psychiatrist if you're having problems. You'll be titrated slowly down until you can stop. Another drug is often started simultaneously. You have my good wishes.....Yours, Lenora.
 

Learner1

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Hi! Im very severe, 100% bedridden and getting worse because ive been scared, ignorant to how long ive actually been in a crash and have brrn over talking being on the phone. I never just relax into this crash. The symptoms are so horrific i induce adrenaline to come out. Vicious cycle. Im so scared. Ive read death stories, staying the same way til suicide. I was normally functioning 15 months ago while pregnant. I think ive been having cfs 8 years but drs kept telling me anxiety and plus i was functioning normally which i recall weird times but was so far and between and mild. Fast forward to pregnancy, weird symptoms began. Now gere i am 100% bedridden in 15 months and constantly over exerting daily mentally and physically in bed being on phone. Im running on adrenaline but when it goes omg! The symotoms are horrific!! Im so freakin scared. Brain burning, so foggy thoughts, now facial muscle weakness, cant chew, blurred strained eyes, of course fatigue and muscle weakness. My nostrils and chest wall muscles are weak. I can not be around people, noise, or light! I have a husband and kids omg! Please excuse typos. No energy to edit. So scared ill die stay this way forever til i have no choice. Rolling pem is probably permanent now. Can anyone please tell me they know someone similar that at least improved? It hurts me i was disgnosed so late and then just learning that ive been pushing. Are there things i can take along with agressive rest therapy to pull me out some.ive read the pem busters but anyone know of this severity besides abilify that can give me some fast relief? I know no cure just relief .
I'm sorry you are going through this.

Find (better yet, have someone help you find) a good functional medicine doctor or Bastyr-trained naturopathic doctor to help you. Pregnancy depletes the body's resources.

Things you might try:
  1. Get tested for viruses like Epstein Barr, HHV6, and Cytomegalovirus which can sap your energy as well as immunoglobulins with subclasses and a CD57 panel
  2. Setria glutathione, a powerful antioxidant
  3. Branched Chain amino acids
  4. NAD+
Many of us have viruses that have gone undetected, and have immune systems that don't work well. Getting tested and identifying any of these problems and getting treatment can greatly help.

Many of us have oxidative stress, which can be helped by glutathione, temporarily, until our body uses it up.

Branched chain amino acids are used in the mitochondria, and help your body recover from activity.

NAD+ is a precursor to energy production.

These are just guesses. They are no substitute for having a good doctor to help you. If the doctors you've had have not been helpful, you really need to find someone who can help you. Being bedridden is difficult, so it is best if you can find someone who will help you get to resources that can help you.

And, if any of the above help, don't stop there. They are just evidence of underlying problems that need to be solved, so you need to get to the bottom of this.

This must be very scary, and this advice must seem extremely difficult. But many of us have been and very bad shape, and have dug ourselves out of it one step at a time. Baby steps at first. You can do this!
 

lenora

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I'm sorry you are going through this.

Find (better yet, have someone help you find) a good functional medicine doctor or Bastyr-trained naturopathic doctor to help you. Pregnancy depletes the body's resources.

Things you might try:
  1. Get tested for viruses like Epstein Barr, HHV6, and Cytomegalovirus which can sap your energy as well as immunoglobulins with subclasses and a CD57 panel
  2. Setria glutathione, a powerful antioxidant
  3. Branched Chain amino acids
  4. NAD+
Many of us have viruses that have gone undetected, and have immune systems that don't work well. Getting tested and identifying any of these problems and getting treatment can greatly help.

Many of us have oxidative stress, which can be helped by glutathione, temporarily, until our body uses it up.

Branched chain amino acids are used in the mitochondria, and help your body recover from activity.

NAD+ is a precursor to energy production.

These are just guesses. They are no substitute for having a good doctor to help you. If the doctors you've had have not been helpful, you really need to find someone who can help you. Being bedridden is difficult, so it is best if you can find someone who will help you get to resources that can help you.

And, if any of the above help, don't stop there. They are just evidence of underlying problems that need to be solved, so you need to get to the bottom of this.

This must be very scary, and this advice must seem extremely difficult. But many of us have been and very bad shape, and have dug ourselves out of it one step at a time. Baby steps at first. You can do this!

So this is the first time you've truly been in a crash state? They're scary, no question of that, but in all likelihood you will come out of it. Control of our very being is essential, quiet, no lights, and care for yourself just like you would a very ill baby. That can't be emphasized enough and it gives you an idea of what has to be done.

Sleep would be the most helpful since the body heals while sleeping. I know that isn't easy, being a sufferer of insomnia myself, but fall asleep when you can. Doctors used to keep you on a tight sleep schedule, but now the most common advice is to just fall asleep as your body can. That does help break the cycle, so feel free to wear some purple (b/c they're generally a smaller size) foam earplugs and snore away. You may need to block out all noise also, thus the earplugs.

Failing earplugs, do you have some soft, soothing music that can be put on replay? Or a meditation tape if you find that helpful. The point being that you simply want to soothe yourself as much as possible. Keep everyone out of the room....have your husband talk to them and I'm sure he'll care for them, too.

Don't think that you'll never get better....remember, you have no worries. You just Are; in a state awaiting healing. Let your body and mind do their jobs. Don't worry about your aches, pains or other concerns, drift off. The telephone should be taken out of the room....you have nothing that needs to be attended to. Others will take care of everything, including you when needed. Be still. Yours, Lenora.