Hospital

[E.man]

Im so sorry @E.man that you wound up in the hospital. How are you feeling now?
I did not go in the end.

Not so acute but now I have a whole new level of hurt.
It didn't take long to find the new problems on here.
Not happy.

 

[Mel9]

There are other doctors... The infectious disease doc I saw screamed at me when I was in a heap on his floor I was so sick...

CBT is needed more by frustrated doctors than patients!

 

[Learner1]

I do see that I have consistent markers for inflammation in bloodwork and stool tests. (High secretory iga, high eosinophils, high sed rate, high ige serum).
No one seems to know why. The gastro said maybe it's allergies , the reg Dr is puzzled, the functional medicine Dr was also.
I did have milk the night before my last blood test, Even though I have a mild dairy allergy. Maybe that was it? No one seems to know.
Strange....

MCAS?

 

[Pink]

What is mcas?

 

[Learner1]

Mast cell activation syndrome. Many of us have it, in addition to our other issues. It has a wide array of symptoms and most doctors will miss it. It can make you very miserable, and it can ebb and flow over time.

There are specific blood tests and there is treatment.

 

[Pink]

Craziest new symptom started recently. I'm lying in bed asleep or almost asleep, heart rate suddenly rushes high, stomach clenches, feel like I will vomit.
Heart is going so fast my body feels like it's trembling.
What on earth is going on?! I'm up at 330 am bec of this.
ETA it actually happened a few times during the day too. Guess it feels worse in middle of sleeping

 

[Mary]

Thank u @jesse's mom , I think you are right they can't do much to help.
It's just a hope and a wish.
My general Dr is very kind and understanding but she really knows nothing about cfs & other thanordering a ton of blood work, that was mostly ok she had no ideas. I'm low on some vitamins, have high eosinophils, and slightly low blood volume.

I went to a rheumatologist who said it might be fibro, but that's just a dx when Drs don't know what's wrong with you. He gave me cymbalta and sent me on my way.

I just get so tired and dizzy & it gets hard to breathe at times.

Are you still on the Cymbalta? It can cause many of your symptoms including nausea and tachycardia:
https://www.hopkinsmedicine.org/neu...pheral_nerve/patient_info/DULOXETINE_2007.pdf
https://www.livestrong.com/article/74136-cymbalta-cardiac-complications/

 

[Pink]

@Mary , no I'm off it a long time

 

[Learner1]

MCAS? It has a lot of symptoms...here is an interesting case study...

 

[Pink]

Very interesting, but I don't have the hives, rashes, swelling and itching though.
I have allergies for sure , lots of mucus etc.
And the heart racing is even while I'm lying in bed or sitting up or even sleeping.

 

[Mary]

@Pink - one more idea - many of us are low in potassium despite normal blood work. People with ME/CFS often have trouble with low intracellular potassium, which is not measured on blood work, and that can cause tachycardia, weakness etc.

An easy way to find out if more potassium will help you is to drink a few (or more) glasses of low-sodium V8 or low-sodium vegetable juice which is high in potassium and see what happens. Coconut water is also high in potassium. I use low-sodium V8 (or generic brand), it's low in calories, not too expensive. A few bananas would probably not have enough potassium if this is an issue for you.

I take extra potassium gluconate daily (many of us do), as well as drinking low-sodium vegetable juice.

 

[Learner1]

You don't need all of the symptoms, just a couple is plenty.

I didn't think I had it, but my ME/CFS doc kept saying he thought I did. And he was right.

Testing would include:

Tryptase
Histamine
Chromagranin A
Prostaglandin D2
Prostaglandin F2

There are a couple of others, too...

 

[Pink]

@Mary my bloodwork for potassium was good. I do not know how i would know about intracellular potassium.
I cannot stomach the taste or texture of those juices. I can only get down bits of water or maybe lemon water.
Bananas give me heartburn anyway.

@Learner1 , I don't know. I can't get to an allergist now. I had an appointment with one last week but was vomiting too much to go.

Heart racing has gotten a lot worse lately and I've been vomiting non stop all week. Can that be related?

 

[Learner1]

I don't know. I can't get to an allergist now. I had an appointment with one last week but was vomiting too much to go.

Heart racing has gotten a lot worse lately and I've been vomiting non stop all week. Can that be related?

First, do you have a virus or food poisoning? Make sure you don't get dehydrated.

Not sure why you need an allergist. Any doc could order the MCAS tests.

You could also try some of the meds that would be prescribed. Most of us are on several. These are things you could try:

Benadryl
Zantac or Pepsid
Ketotifen
Quercetin
Cromolyn
Allegra, Zyrtec, etc.
Curcumin
Quicksilver Colorado Hemp Oil (high CBD)

I found my MCAS makes me unable to tolerate milk, corn and their derivatives, so I need to have injectible Benadryl only, and need meds like Allegra compounded.ketotifen only comes compounded.

Quercetin and ketotifen stabilize mast cells in the digestive system, and I've found Benadryl and the hemp oil to help nausea the most.

The heart racing I get is from hyperadrenergic POTS. It's improved with IVIG as mentioned in the case study.

 

[Pink]

I think I am dehydrated from the vomiting.
Did a urine ketone test it was very very high.

 

[Mary]

@Mary my bloodwork for potassium was good. I do not know how i would know about intracellular potassium.
I cannot stomach the taste or texture of those juices. I can only get down bits of water or maybe lemon water.
Bananas give me heartburn anyway.

An RBC potassium test would show intracellular potassium levels. My potassium levels tanked quite badly after starting methylfolate, but I had read this might happen. It caused severe fatigue for me. I started taking potassium gluconate and titrated up to 1000 mg over a couple of days and the fatigue abated. I've taken extra potassium daily ever since. Otherwise I get symptoms of low potassium. I didn't get blood work, I went by symptoms. Potassium levels can change very quickly and that's why I suggested low-sodium V8 - if the problem is low potassium, then if one drinks enough of it, they should start to feel better within a few hours.

However, you sound like you have a lot more going on and are getting a lot of good suggestions from others here - I hope they're able to help you.

One last question - are you on any meds?

 

[Pink]

Ended up in er on iv fluid anti nausea meds and anti biotic for uti. Thank u so much everyone

 

[Rebeccare]

Ended up in er on iv fluid anti nausea meds and anti biotic for uti. Thank u so much everyone

So I 'liked' your post, not because I like the fact that you ended up in the ER, but because I'm glad that you were able to get some help. I hope that all of the fluids and medicines will help you feel better (UTIs have a way of making one you feel so terrible). I also hope that you will be able to keep foods and fluids down better now (do you have any electrolyte drinks at home--those might be good)? I'm also happy actually treated you instead of yelling at you and being unpleasant. I'm keeping my fingers crossed for a better tomorrow.

 

[Pink]

Thank u so much , I hope it does help @RebeccaRe !
Love the bear too!

 

[Mel9]

Very interesting, but I don't have the hives, rashes, swelling and itching though.
I have allergies for sure , lots of mucus etc.
And the heart racing is even while I'm lying in bed or sitting up or even sleeping.

Does Claratin improve your symptoms? (As per the Patient Perspective box).