Major Crash - Please help me!

[Martin aka paused||M.E.]

Hi dear PR Community!

I am having a big crash right now! So I am sorry I can't write very much. But I really need your advice, especially from the experienced members. But please no "That's how ME is... now you are worse AND WILL NEVER GET BETTER MUHAHAHAHA" - indeed, that won't help me now!

I am bed-bound for about one week now. That means I really can't stand up for long, only go to the toilet, and then back in bed. Usually I have a quite acceptable baseline, I would consider myself being moderate. That means I can care of myself, drive to the supermarket, work 2 - 4 hours a day (home office) and meet with friends in my house. Crashes usually mean staying in bed for three days. But this time, it just doesn't seem to improve.

My major problems are: OI (my heart rate while lying in bed is around 75 Bpm, when I stand up it is around 120 Bpm so that I have to lie down after 30 seconds). I am very weak, can't talk much or will get exhausted. Sometimes I have problems with breathing.

I am very lucky to live together with two friends. But I have to improve and since my baseline is much better than this and I often had crashes and have had many fluctuations every month, I think it should be possible. But: What should I do now? Except from lying in bed and rest a lot? I am experimenting with salt in water, but it doesn't seem to help... any thoughts? Or motivation?

:-(

Thank you all!

 

[Diwi9]

@MartinDH - I'm sorry about your situation. When I crash, I increase my electrolytes and amino acids. If you haven't tried different amino acids and have favorites, just a whey protein is a good way to get lots of them. Some people like D-ribose and creatine. It's also nice to have the liquid shakes since eating can be hard while in a crash. My best wishes to you.

 

[Martin aka paused||M.E.]

@MartinDH - I'm sorry about your situation. When I crash, I increase my electrolytes and amino acids. If you haven't tried different amino acids and have favorites, just a whey protein is a good way to get lots of them. Some people like D-ribose and creatine. It's also nice to have the liquid shakes since eating can be hard while in a crash. My best wishes to you.

I got a good whey protein in casa... thanks I will try it!
Is it possibly that a crash is heavier and lasts longer than usually but one improves up to baseline again?

 

[i-lava-u]

so sorry you are having such a bad crash.

my heart rate while lying in bed is around 75 Bpm, when I stand up it is around 120 Bpm

do you also have POTS? there are a lot of lifestyle adjustments that have helped me with this to an extent (i have severe POTS)

i like @Diwi9 suggestions. i always keep on hand easy things to eat.

 

[Martin aka paused||M.E.]

so sorry you are having such a bad crash.



do you also have POTS? there are a lot of lifestyle adjustments that have helped me with this to an extent (i have severe POTS)

i like @Diwi9 suggestions. i always keep on hand easy things to eat.

I think so... but what I have noticed is that my POTS is linked to my other symptoms... that means that it is never an issue when I am at baseline (will go up too, but usually around 90 Bpm and does not make any further problems)
Which adjustments do you mean?

 

[helperofearth123]

Hi so sorry to hear your problems are still continuing. I had POTS diagnosed and tried their treatments, salt loading (you mentioned you are trying) and compression stockings and there was also a POTS drug but they wouldn't prescribe me it because my POTS wasn't bad enough. The salt loading when I did it properly in my case did only very mild things but I still put as much salt on my food as I like but have no health effects.

Compression stockings were much harder to get set up as they had to be custom to my leg size. They were expensive and hard to put on and only lasted a few days before being stretched and useless. After putting them on though I did feel a mild benefit but decided it was not worth it. Hundreds of pounds for new stockings every few days for a mild benefit was not worth it. However, in your case it could possibly be worth looking into, but it takes some effort and still might not be effective, I don't know.

The easer option would be to talk to a POTS doctor. Maybe they can prescribe you the POTS medication I was not allowed because your POTS might be a bigger part of your health problem than mine?

Hope this is useful and that you recover from this crash ASAP!

 

[Diwi9]

I think so... but what I have noticed is that my POTS is linked to my other symptoms... that means that it is never an issue when I am at baseline (will go up too, but usually around 90 Bpm and does not make any further problems)
Which adjustments do you mean?

My POTS is worse when I crash too. I hope you are able to rest as much as possible. Drinking bone broths can be a good way to increase salt and soothing on the GI tract if you have IBS (mine acts up during crashes).

We don't know how this disease progresses, but my experience has been that when I got very sick, it took a long time to get back to baseline and can be a bumpy road with setbacks. Hang in there.

 

[Martin aka paused||M.E.]

My POTS is worse when I crash too. I hope you are able to rest as much as possible. Drinking bone broths can be a good way to increase salt and soothing on the GI tract if you have IBS (mine acts up during crashes).

We don't know how this disease progresses, but my experience has been that when I got very sick, it took a long time to get back to baseline and can be a bumpy road with setbacks. Hang in there.

An improvement would be just great... Even if it's a long road to baseline, this condition right now is a nightmare

 

[Martin aka paused||M.E.]

@helperofearth123 so nothing helps you?

 

[Diwi9]

An improvement would be just great... Even if it's a long road to baseline, this condition right now is a nightmare

Yeah, I'm in a crash this morning too. People call it fatigue, but it's not the loss of energy, it's the lack of production of energy, i.e. the engine isn't out of gas, the engine is broken.

 

[Martin aka paused||M.E.]

Yeah, I'm in a crash this morning too. People call it fatigue, but it's not the loss of energy, it's the lack of production of energy, i.e. the engine isn't out of gas, the engine is broken.

I will try the AA. Do you have experiences with anti-inflammatory supplements (like boswellia or curcumin) or CoQ10?

 

[i-lava-u]

what I have noticed is that my POTS is linked to my other symptoms

my POTS also gets worse when my ME/CFS gets worse.

I have to lie down after 30 seconds

i had a few weeks worth of terrible worsening of my POTS and OH after an allergic reaction to a medication over the summer. i was very much the same. it was horrible

Which adjustments do you mean?

*I wear compression socks to my knees, on really bad days i also wear on abdomen (some people wear compression clothing that goes from toe to waist) (walmart sells some i like that are not very expensive and last a long time, next to their pharmacy inside store)

*I include extra salt in my diet and i always keep salty snacks on hand

*I drink a minimum of 64 ounces of water a day (also take a water bottle w me everywhere if outside of home)

*load up (at least 16 oz) on water if I need to leave the house (about 20 minutes before)

*I keep "thermo tabs" on hand also (salt supplement)

*I avoid exposure to temperature extremes as much as possible (no hot showers, hot tubs etc. going out in hot or cold temps for too long) these make symptoms worse for me.

*I use a shower chair so I don't need to stand long in shower (also dry off while sitting on shower chair)

*Raised the head of my bed 4 inches

*Consciously sit upright in bed a few times throughout the day, when tolerated, even if just for a few seconds (currently, I'm in bed 22-23 hours a day)

*Do stretches in bed and tightening/relaxing of muscles (a few times a day for a few seconds at a time, when tolerated)

*Eat small frequent meals instead of 3 main meals. also, not a lot of carbs but extra protein

*No coffee, tea, sugar or alcohol (these make me worse big time)

*I carry a lightweight portable/folding chair anytime I leave home "just in case" I need to sit down at any given time

*I sit on a tall stool in the kitchen when preparing food

*I have/use a disability parking placard

*I have/use a mobility scooter I use whenever I need to do something that would otherwise require a lot of walking

*I use a fitbit to track HR and lay down if it goes above 110-120 ( i pay close attention to physical cues too, but fitbit helps keep me on track)

*I break up upright tasks into many smaller tasks and spread it out through the day to minimize time upright (I can currently only tolerate standing for a few minutes at a time before dizziness/nausea/HR etc kick in)

*I take a Beta-Blocker

*Dr wants to add in Desmopressin (but I'm holding off on that for now)


I am sure I may be missing some items, but in combination these all help to some degree.

 

[Martin aka paused||M.E.]

@i-lava-u wow okay... thank you for this list. I think I have to find another solution... I have to get out of this crash, because my POTS usually isn't that bad and I can stand upright the whole day

 

[researcher]

Man I look to crashes as a clear sign that the body needs more rest than usual. Try to sleep for 16h if you can. Try to optimize your sleep, but turning off ALL lights in the room and use strong (black out) shades. Give it a few days and you'll be better.

PS: I always think of crashes as a detox that the body tried to do, or cellular repair or something like that. A process that requires more energy than normal, however its noted profoundly due to the condition of our bodies.

all the best

 

[Diwi9]

I will try the AA. Do you have experiences with anti-inflammatory supplements (like boswellia or curcumin) or CoQ10?

Anti-inflammatories haven't helped during crashes, but sometimes I get joint pain and my ME/CFS specialist says to take a baby aspirin.

I take CoQ10 daily along with ALA, Acetyl L-Carnitine, NAC, and Neuroprotek (quercetin-based supplement)...to name a few, plus vitamins and minerals.

Butterbur has been recommended to me for headache, which I've forgotten about and will have to dig around in my pantry to give it another try.

 

[Sushi]

So sorry about your crash.

My major problems are: OI (my heart rate while lying in bed is around 75 Bpm, when I stand up it is around 120 Bpm so that I have to lie down after 30 seconds).

As others have mentioned--electrolytes--have you tried really pushing them? I have found that drinking a whole liter of a good mixture like Pedialyte makes a difference. My autonomic specialist recommended drink about 750 ml of an electrolyte mixture first thing in the morning to replenish fluids and electrolytes.

Is it possibly that a crash is heavier and lasts longer than usually but one improves up to baseline again?

Yes, certainly possible and I have experienced this a number of times. The hard thing is that when you are in a crash you don't know how long it will be.

 

[i-lava-u]

wow okay

ha ha...sorry to overwhelm you with such a long list

 

[i-lava-u]

The hard thing is that when you are in a crash you don't know how long it will be.

yes, this is so hard...and also very scary

 

[pibee]

dont know are you normally panicky person but I noticed what helped me got out of my big crash was when I really managed anxiety over 'i am getting worse, i am getting worse', it helped a bit.. so try to sleep a lot, low stress, dont read about ME etc.

i used a lot benzos then to stay chilled.

stupid advice i know but, when you're very bad even minimal things are stressful like reading this, so try to run away in lalaland .. something like aggressive resting

fingers crossed!

 

[jesse's mom]

cannabis, sleep, gatorade and keep talking to these wise people. go to sleep! I lay on my back, roll up a towel to really support my neck, I also put my hands under my bottom so I don't notice if I am shaking, them I breathe very deeply and very slowly. I try to have nothing else in my mind except that breath. then I try to deepen it and slow it more.