Crash affecting ability to breathe

mattytoo

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Normally my crashes have an "acute" phase that lasts for 5-120 minutes, & then settle into PEM that lasts for days-weeks. The acute phase is this utter muscular fatigue, I can't move anything & my muscles feel completely wrung out and like a limp dead weight. Moving is hard to impossible. But I can breathe ok. It usually eases on its own.

This time it affected the muscles around my chest too, every breath was a battle to force these limp dead-weight muscles to move my ribs and lungs to get any air in at all. I know my breathing slowed down too much (I counted ~7-9 breaths/minute) & I had multiple fits of full body shaking and jerking & my throat would close & I bounced my head on the tiles (seizure? I tested negative for epilepsy previously) but after a few rounds of that they started to ease and breathing eventually got easier. by the time my mum arrived to help me it had passed, so no-one else saw anything at all besides me being utterly exhausted on the floor πŸ™„

Does this happen to anyone else? I feel like I should have called an ambulance because of how slow my breathing was & the shaking fits. It was pretty scary, the involuntary breathing response just wouldn't kick in, each breath had to be fought for.

It wasn't an asthma attack, or panic, and I didn't have any problems breathing an hour later. I do have asthma but only need a rescue inhaler a few times a year. I've never really gotten the air hunger that seems fairly common around here. it wasn't a tight and constricted feeling, it was a limp utter fatigue feeling. I feel like there's gotta be commonly used words for this that I just haven't stumbled on yet?! I'm feeling pretty lost, especially after getting brushed off by my gp πŸ˜₯
 

Shoshana

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Hi, @mattytoo
I am sorry that episode happened to you, and it does sound scary, plus we also do know what it feels like to ask a doc a serious concern, and get no helpful input.

Some of the crash aspects sound very familiar and similar, to me, but not the specific symptoms you got.

I hope someone else has some more input for you.
 

mattytoo

my pronouns are they/them thanks 😊
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@Dechi I was negative for both
MuSK (my level 0.06, ref range <0.40) &
AChR (my level <0.20, ref range <0.50)
and have no occular symptoms. Which I know doesn't entirely rule it out but makes it very unlikely. If other people say this doesn't sound like me/cfs though I'll go back to the neurologist, I just wanted to avoid paying for the privilege of being told it's "just" me/cfs again
 

Dechi

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@Dechi I was negative for both
MuSK (my level 0.06, ref range <0.40) &
AChR (my level <0.20, ref range <0.50)
and have no occular symptoms. Which I know doesn't entirely rule it out but makes it very unlikely. If other people say this doesn't sound like me/cfs though I'll go back to the neurologist, I just wanted to avoid paying for the privilege of being told it's "just" me/cfs again
Breathlessness is a symptom of ME. The rule is usually to seek medical attention when new symptoms appear. If it worries you, have it checked out. Are an anxious type person ? Do you sometimes have panick attacks ?

If it’s not a panic attack, since you felt so bad almost called an ambulance, I would think this warrantts investigation. Maybe start with your regular doctor to see what he thinks ?
 

Gingergrrl

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This time it affected the muscles around my chest too, every breath was a battle to force these limp dead-weight muscles to move my ribs and lungs to get any air in at all.
This was a chronic, progressive symptom for me that led one of my doctors to comment that if it did not plateau, I could end up on a ventilator in the future. I do not get PEM and it was never intermittent but I relate very much to what you just wrote. I had reached a point that I could not even remotely pass a basic spirometry test and could not inhale a breath below my shoulders as if my diaphragm was very weak or frozen.

@Dechi I was negative for both
MuSK (my level 0.06, ref range <0.40) &
AChR (my level <0.20, ref range <0.50)
and have no occular symptoms. Which I know doesn't entirely rule it out but makes it very unlikely. If other people say this doesn't sound like me/cfs though I'll go back to the neurologist, I just wanted to avoid paying for the privilege of being told it's "just" me/cfs again
I was also negative on the MG and MuSK panels from Mayo's Lab and I had no ocular symptoms. The reason I am mentioning this is I was curious if you have ever been tested for the LEMS autoantibodies (the N-type and the P/Q type Calcium Channel autoantibodies)? They can be tested on multiple Mayo Panels but probably the best would be PAVAL or DYS1. It is a long shot but if I were in your situation, I would run these tests with your Neuro (and not mention ME/CFS as most Neuro's will automatically dismiss this as you have encountered).
 

mattytoo

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well, update... it happened again last night and this time I did go to the hospital but, of course, they could find nothing really wrong besides weakness. it started easing on its own after a couple hours, but I got a bag of IV fluids and I'm recovered to a level that would have taken me days of rest to reach, so that's kind of amazing! Definitely going to bring that up at next appointments. Sp02 was ~90% and hr was ~120bpm (normal for me in stressful environments) the whole time I was there, high bp (154/106) but dropped back to close to my normal (120/80) as I recovered. Majority of the blood test results were within range and the few that weren't were only barely elevated πŸ™„. glad to have a picture of what happens in a crash though!

The reason I am mentioning this is I was curious if you have ever been tested for the LEMS autoantibodies (the N-type and the P/Q type Calcium Channel autoantibodies)?
I haven't, but I intend to go back to my neuro since it happened again so I'll bring these up with him. He said if swallowing got worse to come back, & I think this counts haha. Thanks for the suggestion!

I have the appointment with the me/cfs specialist next week & the rheum the week after so hopefully I'll get some answers from somebody! Thanks for the support and info, y'all, it's much appreciated!
 

Gingergrrl

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This is definitely important and I'm glad that data was captured to show your doctor.

I haven't, but I intend to go back to my neuro since it happened again so I'll bring these up with him. He said if swallowing got worse to come back, & I think this counts haha. Thanks for the suggestion!
Definitely mention the swallowing issue and see if they can do a swallow study (if appropriate) to try to figure out what is going on. Do the swallowing issues feel like muscle weakness? I never had muscle weakness with swallowing and it was mostly with my lungs & diaphragm (and I have no idea why it never affected my throat). I would definitely try to test the Calcium Channel autoantibodies, even if just to see they are negative and rule them out.

I have the appointment with the me/cfs specialist next week & the rheum the week after so hopefully I'll get some answers from somebody!
Best wishes and I hope one of your doctors gets to the bottom of this.
 
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mattytoo

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Do the swallowing issues feel like muscle weakness?
Yeah, I think so. Swallowing is kind of sluggish? I'm not sure how to describe it, but I'm aware of it every time because it's slow & feels like an effort. I also have trouble with throat collapsing, which basically feels like obstructive sleep apnea where the soft tissue collapses and blocks the airway? But I'm awake. I can sometimes feel the strain in the muscles from keeping it open when I'm laying on my back. I have these issues even when I'm not flaring, but they're not that bad unless I'm very tired.
 

Mel9

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Yeah, I think so. Swallowing is kind of sluggish? I'm not sure how to describe it, but I'm aware of it every time because it's slow & feels like an effort. I also have trouble with throat collapsing, which basically feels like obstructive sleep apnea where the soft tissue collapses and blocks the airway? But I'm awake. I can sometimes feel the strain in the muscles from keeping it open when I'm laying on my back. I have these issues even when I'm not flaring, but they're not that bad unless I'm very tired.

Sounds awful and very frightening
Although you were negative for the Myasthenia Gravis antibodies, it might be worth asking your doctor to give Mestinon a try?
 

Gingergrrl

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I also have trouble with throat collapsing, which basically feels like obstructive sleep apnea where the soft tissue collapses and blocks the airway? But I'm awake.
Have you had a sleep study to check for sleep apnea? It definitely sounds like there is MUCH more going on but was just curious if this has been ruled out?
 

mattytoo

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ugh update it's been happening multiple times a day for the last two days, always triggered by exertion, and with my tolerance for that being so low (I'm still recovering from the previous episodes!) it doesn't take much to set it off. though I'm better at noticing the signs sooner & changing to a reclining position (which lessens the amount of gravity to fight against), so I haven't had as bad a time but laying down at all is out of the question, fighting against gravity even on my side very quickly exhausts the muscles in my throat, and if I stay there my diaphragm starts to struggle too. Still seems to ease on its own after an hour or three.

I feel like it's worsening but I'm hesitant to go back to the hospital when I had such a bad time there. I don't need to add to the pile of medical trauma, you know?

Anyway I have plans to call many places & hassle someone into doing something on Monday morning & will go back to the hospital if it feels like I need close observation to sleep or it markedly worsens. Honestly I know this isn't purely me/cfs anymore, but I hope it's ok to keep posting here

Have you had a sleep study to check for sleep apnea? It definitely sounds like there is MUCH more going on but was just curious if this has been ruled out?
I did get a sleep study 2 years ago which found nothing much (I don't remember the numbers) but I'm almost certain I have developed it since then. I think I can get one sleep study a year so actually I should get another one now.
 

Gingergrrl

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Anyway I have plans to call many places & hassle someone into doing something on Monday morning & will go back to the hospital if it feels like I need close observation to sleep or it markedly worsens. Honestly I know this isn't purely me/cfs anymore, but I hope it's ok to keep posting here
I'm glad that you have some places to call tomorrow morning (I guess it is tomorrow now if you are in Australia?) and hoping that you will be able to get some help to ultimately figure out the cause of these episodes. My situation was different but it took several years of detective work to figure out it was autoantibodies weakening my breathing muscles (among other problems).

I did get a sleep study 2 years ago which found nothing much (I don't remember the numbers) but I'm almost certain I have developed it since then. I think I can get one sleep study a year so actually I should get another one now.
I think it would be great if you could get another sleep study. It sounds like your symptoms also happen when you are awake (not just asleep) and I think that creates an even higher chance of them being captured on a sleep study. It is so hard to actually fall asleep in those studies, but they have you hooked to all the equipment and are monitoring you, so it will capture an episode whether you are awake or asleep if you should stop breathing, etc.
 

mattytoo

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@Mel9 sorry, I didn't get the ping for this, I think you accidentally misspelled my username! Thanks for checking up on me

I'm a bit worse, it's easier to predict when an attack is about to start & manage it, but they're happening multiple times a day. It's manageable for the (very) short term, but I'm on very strict bedrest.

A whole bunch of other symptoms have manifested though including:
-throat fatiguing after talking a lot, makes my voice squeaky and weird
-tongue fatigue, making me slur certain sounds & affecting eating
-single droopy eyelid (that got temporarily better with ice pack)
(Edited to add: these new symptoms are sometimes connected to exertion & sometimes just come and go)

So all up I think this is now pointing to something neurological (myasthenia gravis? especially because the ice pack test is used to help diagnose. something in that area maybe). I managed to get an appointment with my neuro on Monday in another city 4hrs away 😱 but I'll take it! I'm really really hoping he can help.

I also saw Dr Dobie (an mecfs specialist GP in Sydney) yesterday, he didn't have much to say about the current increase in symptoms but he is doing a load of tests for all sorts of things (virals? 24hr adrenals? some vitamins, definitely b12, a few other things. I'm brain foggy right now). So I'll be glad to know if there's something underlying everything, but it doesn't exactly help me right now!
 
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mattytoo

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my neurologist was fairly dismissive ("maybe it's a unusual presentation of panic attacks") but willing to humour me and agreed to do a few tests. However when he performed the physical exam I crashed almost immediately after being asked to repeatedly do an action to test for muscle fatiguability in my shoulders. He seemed genuinely shocked to see the severity and even said I should consider hospital, and urgent appointments with a cardiologist and/or pulmonologist and "every type of specialist, something is very wrong"

So overall a disappointing appointment but somewhat validating. He did breifly test my muscle strength while I was crashed and he got the same strong response so he thinks it probably isn't mg/lems, though he agreed to do a sfemg because of the ptosis (I think he dismissed the other new symptoms as psychological). Multiple times he's said I'm surprisingly strong for someone in my condition. He also specifically noted no hyperventilating or tachycardia, & a steady heart beat while crashing. My bp is still at 150/93 which is concerning because until this latest progression it's always been close to 120/80

Not sure whether I'll follow up on his cardio/pulmo suggestion as he seemed to just be throwing things out there and I've never really seen anything cardiology or pulmonology related describe my symptoms. I do have an appointment with a rheumatologist in two days time, & I guess I'll force myself to crash at all my appointments from now on, maybe some of them won't be as dismissive. One can hope, maybe. My capacity to hear "it's all in your head" from anyone else is very low right now, maybe I accept this level of symptoms as a new normal and go back to seeing specialists slowly instead of pushing this hard and fast. I'm very tired