Im very severe and getting worse please help

[Ladycreole03]

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 .

 

[lenora]

Hi @Ladycreole03.
It's know (or used to be known) that pregnancy can improve the symptoms of having CFS/ME/FM....it's afterwards that the big crash can occur. What are you doing for help with your children, do you have relatives nearby, a cooperative husband. These are all important consideration, especially if children are involved. What are their ages?

Yes, it's easy to be frightened or even take the opposite stance....become someone who doesn't care about what becomes of us. But you can do something to make your circumstances better.

I, too, run on adrenaline and then I'm left like a deflated balloon. This is another thing that can be common among us. Please tell us more about yourself and your situation...it all helps.

Are you able to read your children a bedtime story at night? In your own bed, if necessary. Have whatever contact with them that you can. Meals can be very simple for quite a long time, even peanut butter sandwiches and milk or tomato soup, something along those lines. Hopefully your husband is able and is preparing such meals. Progresso makes good soups that are at least nutritious for you....with crackers and an apple with peanut butter. I could eat the same thing forever, repetition doesn't bother me and I hope you're somewhat the same. Low fat mozzarella sticks with grapes and crackers....that type of thing. Hard boiled eggs....just something that has good nutrition. Be kind to yourself.

Is there a possibility that you have a problem with fungus or mold. Allergies are very common with us and they make everything worse.

Relax into yourself. Rest easy, and have a good night. Yours, Lenora.

 

[Mary]

Hi @Ladycreole03 - sorry to hear you are having such a rough time! I have read about several people who improved from a very bad situation.

One member, @YippeeKi YOW !! , was able to help herself dealing with severe anxiety and stress using magnesium. She's posted about this several times, here's one of her posts: Dealing with stress and trauma | Page 2 | Phoenix Rising ME/CFS Forums

I started taking branched chain amino acids almost 7 years ago. They cut my PEM recovery time by more than half, so they might help you. I've been taking roughly 5000 mg a day in divided doses: 2000 - 3000 mg. first thing in the morning on an empty stomach, and 2,000 - 3000 mg. more late morning on an empty stomach. they might help with your PEM.

Also, a breathing exercise helps calm down my system and helps me sleep at night - I describe it in this post: Dealing with stress and trauma | Page 2 | Phoenix Rising ME/CFS Forums

Aggressive rest is crucial. If I keep pushing it when crashed, it just makes it worse. I hate how much I have to rest, but if I don't do it, I pay a big price.

Take care - I hope some other members respond here who might be able to help a bit more -

 

[Ladycreole03]

Are you able to read your children a bedtime story at night?

No, once adrenaline is gone. I am extremely severe. I can't look at others, light, or sound. I cant chew snd now my brain is over exerted snd burns. Im in deep.
I have sn introduction thread already frim a few months ago. I was just hooing someting to aid me out of this but guess not. Its so hard to feel this pem or crash whatever it is. Its horrific but i have no choice. Thx Lenora! So sweet❤

 

[Ladycreole03]

cooperative husband

Very cooperative and my 17 year old.

 

[Ladycreole03]

I started taking branched chain amino acids almost 7 years ago. They cut my PEM recovery time by more than half, so they might help you. I've been taking roughly 5000 mg a day in divided doses: 2000 - 3000 mg. first thing in the morning on an empty stomach, and 2,000 - 3000 mg. more late morning on an empty stomach. they might help with your PEM.

Thank you! Do you have a particular brand?

 

[xebex]

Trying to think of the most simple and least intensive things you can do that might help.

If you feel toxic or poisoned you could try NAC or R-ALA to try and give you some relief from that.

Cut out all sugar and processed food and reduce glutamate from your diet and take electrolyte drinks - make sure your salt is celtic sea salt as that has a better mineral content.

The things thats are in your control (to an extent of course) right now are managing stress and anxiety and keeping diet clean. Some good suggestions were made above, and I might add EFT tapping though that is hard if you can’t use your arms. You can imagine yourself tapping the points though or your husband could do it.

L- Theanine can also help with anxiety.

Sorry your are dealing with so much. From my experience you do come out of the worst parts.

 

[bensmith]

Nac is apparently leaving the market, so try the other.

 

[xebex]

Nac is apparently leaving the market, so try the other.

It’s gone from the US Amazon store but still in canadian and UK store. It’s still in US iherb.

 

[Ladycreole03]

Trying to think of the most simple and least intensive things you can do that might help.

If you feel toxic or poisoned you could try NAC or R-ALA to try and give you some relief from that.

Cut out all sugar and processed food and reduce glutamate from your diet and take electrolyte drinks - make sure your salt is celtic sea salt as that has a better mineral content.

The things thats are in your control (to an extent of course) right now are managing stress and anxiety and keeping diet clean. Some good suggestions were made above, and I might add EFT tapping though that is hard if you can’t use your arms. You can imagine yourself tapping the points though or your husband could do it.

L- Theanine can also help with anxiety.

Sorry your are dealing with so much. From my experience you do come out of the worst parts.

Thank you! Tap on my husband?

 

[Judee]

@YippeeKi YOW !! got some relief with magnesium. I'll let her tell you more about that if she's able to.

 

[xebex]

Thank you! Tap on my husband?

Your husband can tap (gently tap acupressure points) on you. He’d have to look up how to do it. It’s called EFT and It helps calm anxiety.

 

[YippeeKi YOW !!]

@Ladycreole03

The symotoms are horrific!! Im so freakin scared.

Yeah, this is one terrifying little determined drill-bit of an illness.

I can not be around people, noise, or light! I

Those are classic symptoms, and are best avoided for now. People, even those you love and normally enjoy, are a fierce and deadly drain on limited energy. Noise and light are guaranteed disruptors of fragile neurotransmitters, so darken your room, avoid noise as much as possible.

This will pass, but for now, that's what will work ....

So scared ill die stay this way forever til i have no choice.

You ABSOLUTELY WILL NOT !!! I promise you. You will get better, it's just not an overnight miracle ....

Rolling pem is probably permanent now.

No. No, it isn't. It just feels like that because you're so badly depleted.

Can anyone please tell me they know someone similar that at least improved?

Yes. Me.

When I was at my worst, during a peroid of almost 5 years that I unoriginally vall The Troubles, I was so bad, so suicidal, that my husband DB took his antique gun collection to storage. You know, just in case ....

Because of the severe fatigue and massive flucking anxiety attacks, I had almost zero brai function, but in those rare moments when I could think just a little, I frantically researched, and flogged thru those intentionally opaque research studies. It took a long time, but I gradually put together a plan.

I think ive been having cfs 8 years but drs kept telling me anxiety

Thye're particularly fond of that diagnois because ots hard to dispute or disprove and there are just MASSES of prescriptn drugs to 'treat' it with, all of which are highly rewarding to the prescribing Drs ..... for now, ignore them ....

cant chew

If you aren't dealing with GABA/glutamate imbalances, which might be what's producing your anxiety, canned soups can be a great go-to. Some are better than others. Keep track of your anxiety attacks as you trial them, and if it goes up, you probably are dealing with GABA/glutamate issues.

Progressive soups are probably the worst option, they're extremely high in sodium and preservatives.

I'd suggest Annie's Organic Soups. The Chunky Vegetable is particularly good, and good for you. Low in sodiu and fats, and very low in preservatives. Very little chewing involved. They've been my go-to ever since I finally quelled my glutamate issues .... I tart it up with various things that make it taste delicious, and like homemade .....

Are there things i can take

What helped me, and I think @Mary has posted a link for you in her post above, was magnesium glycinate. I tried numerous other forms of mag with no success, and the mag gly didnt work until I tailored a dosing system that did the job: 50 mgs of mag gly every 30-60 minutes for bout 5 months, after which the anxiety attacks, which were really fierce and lasted as long as 19 hours at a stretch, abating for 1 or 2 hours, and then starting all over again, finally dropped dpwn to as close to nothing as possibe while still poking thru from time to time.

It was screaming hell, and I thought I was going to die or was actually dying in that exact moment.

So I hear 'ya ..... been there, done that.

I know no cure just relief

My husband. DB, kept drilling home the rule of the 10%. Dont dismiss the 10% iprovement because it isn't 80 or 100%. Each 10% that I've enjoyed has given me just a lttle more energy, a slightly sharper edge mentally, a little more hope, and that allowed me to do a little more research, til I managed another 10%, making a total of 20% improvement. And then another 10%, etc etc etc.

The short version is that I dragged myself from what I perceived at the time as death's door and a near 5-year bed bound semi-existence to where I am today, which isn't where I want to be forever, but the difference between those two states is absolutely astonomical.

And you can do it. I promise.

There's hope, there's help, there's improvement.

Don't give up, don't give in, don't give out !!!!

 

[Sushi]

Whitney Dafoe was about the most severe patient in this group—very, very severe—with a feeding tube, unable to talk or tolerate company, sound or any stimulation. Recently he got better and is now sharing his story typing on his phone. He was unable to even communicate with scrabble chips before. He posted this today on Facebook:

Living with ME/CFS isn’t a question of if. It is a question of how. We will survive one more day. We just have to figure out how to negotiate the new challenges that we constantly face. There is no guide book or manual for living with ME/CFS. We each have to write our own manual to lead us through our own unique minefield that this disease creates. It is always a work in progress because the mines keep getting moved every day and we must constantly adjust, adapt, and add to the manual. But we can.

Try to figure out how to best get through your day without getting worse and keep a record of it mentally or on paper. Your manual doesn’t need to be written down.

Be creative. Try to be open minded. My survival has required a lot of creative problem solving to get by. Almost all the challenges we face have no official medical solutions. So creating this manual is how you find your path to survival and freedom.

Happy ME/CFS Awareness Week

https://www.facebook.com/groups/1135568389830927/?ref=share
On May 12th he made this video. His Dad, Dr. Ron Davis, is the principal researcher at the Open Medicine Foundation. Please have hope!
https://fb.watch/5uSCldmjzJ/

 

[YippeeKi YOW !!]

Your husband can tap (gently tap acupressure points) on you. He’d have to look up how to do it. It’s called EFT and It helps calm anxiety.

Did absolutely nothing for me when I was at my worst, except make me feel more hopeless and bereft ....

You can't tap, massage, mantra, or magically think anxiety away, at least not normally, tho it may work later when the neuro system is wrenched into better balance ....

 

[Mary]

Thank you! Do you have a particular brand?

I'd been taking this product for several years, it was around $26 I think, but the last couple of months it has been unavailable (maybe due to Covid? I don't know) at that quantity and price: It was in capsule form which was very convenient for me, I could lay it out in my pill trays all ready to go. AmazonSmile: Optimum Nutrition Instantized BCAA Capsules, Keto Friendly Branched Chain Essential Amino Acids, 1000mg, 400 Count: Health & Personal Care So now this is hard to find and is at least $20 more than I had been paying (which was around $24 - $26 for 400 capsules)

So recently I've been taking this, which is in bulk powder form, I think it's a good product, it's just I hate having to stir it into water, it doesn't dissolve well, but oh well, what the heck! And I think it's just as effective: AmazonSmile: Nutricost BCAA Powder 2:1:1 (Unflavored) 90 Servings - High Quality Branched Chain Amino Acids: Health & Personal Care

I just now saw that the Nutricost brand has it in capsule form: AmazonSmile: Nutricost BCAA Capsules 2:1:1 500mg, 500 Caps - 500mg of L-Leucine, 250mg of L-Isoleucine and L-Valine Per Capsule: Health & Personal Care
This may be comparable to the Optimum Nutrition which I have taken for several years, but would have to try it to make sure.

And there's this - Optimum Nutrition in bulk form, which I assume is just as good as what I've taken for several years: AmazonSmile: Optimum Nutrition Instantized BCAA Powder, Unflavored, Keto Friendly Branched Chain Essential Amino Acids Powder, 5000mg, 60 Servings (Packaging May Vary): Health & Personal Care

I'm sure there are other good brands - this is just what I've been taking - good luck!

 

[Ladycreole03]

@YippeeKi YOW !! got some relief with magnesium. I'll let her tell you more about that if she's able to.

Ok thx!

 

[Ladycreole03]

I'd been taking this product for several years, it was around $26 I think, but the last couple of months it has been unavailable (maybe due to Covid? I don't know) at that quantity and price: It was in capsule form which was very convenient for me, I could lay it out in my pill trays all ready to go. AmazonSmile: Optimum Nutrition Instantized BCAA Capsules, Keto Friendly Branched Chain Essential Amino Acids, 1000mg, 400 Count: Health & Personal Care So now this is hard to find and is at least $20 more than I had been paying (which was around $24 - $26 for 400 capsules)

So recently I've been taking this, which is in bulk powder form, I think it's a good product, it's just I hate having to stir it into water, it doesn't dissolve well, but oh well, what the heck! And I think it's just as effective: AmazonSmile: Nutricost BCAA Powder 2:1:1 (Unflavored) 90 Servings - High Quality Branched Chain Amino Acids: Health & Personal Care

I just now saw that the Nutricost brand has it in capsule form: AmazonSmile: Nutricost BCAA Capsules 2:1:1 500mg, 500 Caps - 500mg of L-Leucine, 250mg of L-Isoleucine and L-Valine Per Capsule: Health & Personal Care
This may be comparable to the Optimum Nutrition which I have taken for several years, but would have to try it to make sure.

And there's this - Optimum Nutrition in bulk form, which I assume is just as good as what I've taken for several years: AmazonSmile: Optimum Nutrition Instantized BCAA Powder, Unflavored, Keto Friendly Branched Chain Essential Amino Acids Powder, 5000mg, 60 Servings (Packaging May Vary): Health & Personal Care

I'm sure there are other good brands - this is just what I've been taking - good luck!

Thc so much! How king before you noticed results? Also do you think they help with mental exertion too?

 

[Ladycreole03]

You can't tap, massage, mantra, or magically think anxiety away, at least not normally, tho it may work later when the neuro system is wrenched into better balance ....

Makes sense too

 

[Ladycreole03]

Whitney Dafoe was about the most severe patient in this group—very, very severe—with a feeding tube, unable to talk or tolerate company, sound or any stimulation. Recently he got better and is now sharing his story typing on his phone. He was unable to even communicate with scrabble chips before. He posted this today on Facebook:
https://www.facebook.com/groups/1135568389830927/?ref=share
On May 12th he made this video. His Dad, Dr. Ron Davis, is the principal researcher at the Open Medicine Foundation. Please have hope!
https://fb.watch/5uSCldmjzJ/

Thx. I follow him. Im about that severe. Im on adrenaline right bow and have been. Im so new to this. Just findin out thats not good either. Im in so drep. My brsin burns badly. I cant go to the bathroom at all. He was able to still go. Thx so much. Never had a chance to watch video yet