Fatigue torture- how do you deal with it?

[Seven7]

Any ideas...What do you guys do?

I use Dysautonomia treatment and the fatigue goes away. Mine was HORRIBLE and intolerable (more lack of energy on demand for basic existance) so I use vassocontriction (midodrine) + florinef+ beta blocker. I know beta blcoker is uspposed to create fatigue but for OI is great. The combination of drugs will depend on your personal combo( if you are high blood preassire vs low type) they play with the combination until they find the right for you.

 

[Dr.Patient]

Im so sorry that this is happening to you. I recognise this feeling and I fear it when I cant move for the exhaustion, cant stay awake, cant cope anymore. However, I do want to state the obvious. You said it was unbearable but actually you are bearing it wonderfully so dont underestimate your own power. I wonder whether when this happens next you could acknowledge how strong you are to have gotten through it before. How truly courageous you are


Im so sorry that this is happening to you. I recognise the feelings and have days where I wonder how I will cope. There is one thing I'd like to say to you. I'd like to point out that when you say the feeling is unbearable, actually you have born it well and with great courage. I see your strength and dignity in this situation. Maybe next time this happens, you can honour your courage and how you have seen this all before and will cope. It does pass and you will have good times as well as the feelings of terrible exhaustion. Next time it happens to me, I will remember you.

Thank you, you are very kind!

 

[Never Give Up]

@Dr.Patient, have you found anything that helps yet?

 

[soxfan]

It is definitely torture....mine is wired but exhausted but it's my body that is wired and overstimulated..not my mind. It feels like I have adrenaline coursing through my insides and nothing calms it down. I just lay there in this most uncomfortable feeling for hours.
I do think mental or social exertion can bring it on but it will begin as severe fatigue in my brain and behind my eyes and then progress to the torturous physical body exhaustion.

I am lucky in that I can do almost anything physical and have no PEM or that horrible overstimulation fatigue...mine all comes from mental....or social interaction.

I sometimes take klonopin if I feel it might be coming on. It doesn't really help with the overstimulation but will make me a little drowsy so that it doesn't feel as intense.

 

[Clerner]

I call it " overwhelming exhaustion". Like I need to melt deeper and deeper into the bed and I can't melt deep enough to relieve the exhaustion. Ldn and d-ribose have helped but I still have bad days/weeks.

 

[OkRadLakPok]

I drink a lot of water. Right now I am in it. That is why I am responding and seeking answers, too. I drink cold water and cold fizz water and a lot of it . I don'tknow how it works, but when you said FATIGUE TORTURE you got it right. Looking into others' advise, too. Great post. Thank you for creating it!

 

[Dr.Patient]

@Dr.Patient, have you found anything that helps yet?

Xanax helps. People should try this and see.

 

[soxfan]

Klonopin helps me.

 

[Uk125250]

Yes, I can relate to this too.It is horrible and you need to experience it to believe it. For me, it feels as though my major organs are just failing as there seems to be a complete energy failure. The worst is the effect on the heart as it feels as though it hasn't the energy to keep beating. As it worsens, the heart rate drops to about 30 a minute, and it feels as though it is really struggling. Horrible! I find that the best position is to lie on my right side, almost onto my front as it seems as though it isn't such a strain on the heart.

I'm sorry that you are struggling with this too.

I understand precisely what you're describing. Feels like my organs are shutting down. It's an incredibly dreadful feeling.

 

[taniaaust1]

However, strangely enough, I always found the severe fatigue of ME/CFS a quite pleasant feeling, partly because you are so whacked and out of it that you don't notice your other horrible symptoms.

its pleasant when Im passed out and lost awareness due to that degree of exhaustion but its certainly not pleasant while I have any awareness there eg fatigued no matter how severely.

When Im this fatigued its highly unpleasant as I will need to roll over due to being uncomfortable from laying in same spot too long but may be too exhausted to roll myself over so instead will remain uncomfortable. I will also hold on to go to the loo till Im about to pee myself and start leaking urine due to not feeling enough energy to get out and go to the loo. I will usually be thirsty when Im severely fatigued as I tend then to get too fatigued to keep my hydration up well (hence why I then often have needed an ambulance called at this point). When one is severely fatigued its not at all comfortable.

Have you ever been so fatigue that you lay there in discomfort due to not having the energy to change your postion and end up hurting as you are so needing to change your postion ....

 

[taniaaust1]

@ Apple

im one of those at Phoenix rising who was permanently damaged by Amitriptyline.. the effects of it prolapse my bowel as it has a physiological affect of also slowing down bowel peristaliis (I had only IBS-C before that). As countrygirl said there are others here who have got permanent damage from this drug, some left with worst issues then me (for some its taken away their ability to be able to pee).

All the ones of us who had this permanently damaging affect on our bowels or bladder .. all had canadian defined criteria ME/CFS so maybe drug isnt so safe for us.

Note the damage it did to me was a low dose trial of only a couple of week trial of it.