Fatigue torture- how do you deal with it?

[panckage]

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable.

I get something similar although I would say the major feature of this for me is more the brain fog/anxiety. It feels like fatigue but I think it's mostly in the brain.

Anyways a small amount of marijuana in a vaporizer (~0.06g) works wonders for me. It usually knocks me out for a short bit but then afterwards my brain starts working again, I can enjoy hobbies and usually I do some exercise too (usually for a minute or so, lie down for a few minutes then repeat)

It's really amazing to go from zero motivation to being interested in everything. When the thing you mention hits I don't even feel human

 

[Gingergrrl]

This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

@Dr.Patient Great to hear from you again although sorry under these circumstances. I have a question, when you experience the fatigue and weakness, do you also feel shortness of breath or is this not an issue for you? I couldn't remember if we'd discussed this before?

 

[Dr.Patient]

Thank you all...still intense fatigue...

 

[Ellie_Finesse]

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

You are not alone! The last bit of the paragraph hit a core for me, its exactly how I feel. 'Its not so much the weakness itself, but the intensity is so great its unbearable'.

Explaining what it feels like to people who don't understand is really difficult.

When I experience it, I am not sure what is worse that or extremely intense pain. I know what both feels like as I have had them. When I came of my bike I had a chest injury and everytime I tried to lie down it felt like my chest was being tipped out.

Amitriptyline has caused some of us permanent damage, and wasn't effective anyway. It can also seriously aggravate our BP problems. Surmontil is much more sedating with some zopiclone thrown in.

Baclofen is also a helpful drug and can make us feel so much better the following day.

Is interesting that you mention about the Amatriptalin. I had a similar experience! I was slowly slipping into a relapse, on a mild scale, after my bike accident. But after I took the Amatriptalin as a migraine preventative, I went completely off my rocker and never recovered.

When I asked the doc if that could have caused a relapse, she said very unlikely, yet I was convinced it had!

 

[meandthecat]

To my mind this much like surviving a concentration camp ... one day, one minute, one moment at a time. Its not about forever, just this next moment. I find this helps, though not consistently

One of those expressions of experience that take me back to the worst of times and scare the s**t out of me.I would add ' one thought at a time' for however much a thought weighs it had the power to crush me

 

[Mrs Sowester]

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.

I got that at my most brain fogged, before I'd worked out that pushing through the fog wasn't a good idea. I was so whacked out I felt euphoric, I assume due to low oxygen to the brain. If I was alone my brother would phone to check on me and he said I sounded like the heroin addict mum from Shameless (whoever she is). But I'd feel so floaty and away with the fairies I just couldn't worry about it, I'd just lie there feeling like I was leaving my body and floating just above myself.
I've never done the sort of recreational drugs that people take to make them feel that level of high, but I did get through it by thinking 'people pay lots of money to feel like this' and didn't try to fight it!

 

[Mrs Sowester]

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

Sometimes I take xanax and it helps.

The mornings are just the worst.

Any ideas...What do you guys do?

Mornings are worst for me too, rehydrate as much as you can and eat something salty if you have low blood pressure.
I try to just go with it when the worst fatigue hits; I'm sure allowing myself a spot of gentle weeping helps!
If you practise a guided meditation and get to know it you can take yourself to your happy place on days when you're too ill to watch or listen to any media. I was given a CD or these a few years ago and found them a really helpful way of finding my own happy place (which I visit at least once a day).
I have a stock of audio books to distract me on a very bad day and boxsets for middling bad days.
The joy of the awful ME memory and concentration problems is that one can watch or listen to the same entertainment several times before understanding it all or taking it in!

 

[PatJ]

rehydrate as much as you can and eat something salty if you have low blood pressure.

Even more effective for most people is a commercial electrolyte mix such as Electromix, or Ultima Replenisher, with extra salt added. I tried a DIY electrolyte mix but it wasn't as effective as Ultima, which I now drink many times per day. I also add salt to every meal.

 

[Dr.Patient]

@Dr.Patient Great to hear from you again although sorry under these circumstances. I have a question, when you experience the fatigue and weakness, do you also feel shortness of breath or is this not an issue for you? I couldn't remember if we'd discussed this before?

Not an issue for me...

 

[Dr.Patient]

I feel this too. I know exactly what you are talking about. It's not just tiredness and fatigue, it's absolutely horrific. It's really hard to put into words. It's near unbearable and I can relate to the feeling of wanting to die during it. I literally can do nothing but lie there and sob.

For me it's triggered a lot by a bad night's sleep. The only thing that seems to ease it is more sleep.. which can be near impossible, I know.

Are you taking Amitriptyline by any chance?

No amitriptyline...

 

[Catjbro]

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

Sometimes I take xanax and it helps.

The mornings are just the worst.

Any ideas...What do you guys do?

Just wondering how you are feeling now as I am feeling the same. Hope you are better.

 

[RYO]

@Dr.Patient
I am currently experiencing exacerbation. I feel the same as you. I feel so horrible that I pray for death. Nearly bedbound dreading walks to bathroom. Eyes too heavy to watch TV or any other electronic screens. I can only listen to music for short periods.

My children and wife are the only reason I am still here.

I am taking milk Thistle again. Not sure whether it is helping vs it usually takes being bedbound for 3-4 weeks before things get better.

I hope you start to feel better soon.

 

[Catjbro]

@Dr.Patient
I am currently experiencing exacerbation. I feel the same as you. I feel so horrible that I pray for death. Nearly bedbound dreading walks to bathroom. Eyes too heavy to watch TV or any other electronic screens. I can only listen to music for short periods.

My children and wife are the only reason I am still here.

I am taking milk Thistle again. Not sure whether it is helping vs it usually takes being bedbound for 3-4 weeks before things get better.

I hope you start to feel better soon.

I'm sorry you feel so bad. I'm in the same boat. I prayed for death too but woke up.

 

[erin]

@Dr.Patient Sorry that you are suffering so much. I had the horrible fatigue many times, I understand how you feel. It is truly awful.
Not much you can do about it, it runs its course and get better eventually. Horrible, horrible wait for life to come back into you.
Not a great help maybe, few things I do when I have the fatigue attacks; B12 sublingual (injection better if you can organize) vitC, COQ10 (recently gives me skin rash). Not total darkness but dimmed area and if possible quite area and and not much human contact. I can't stand human contact much when I feel unwell. Bland simple nutrition suiting your allergies if you have them, small portions. Also not to stay in bed, a sofa or a long chair is better. Comfortable clothing but no pj. Going to bed only bed time and rest of the time just vegetate lying in a quiet area helps me. Hydrate, rest, rest rest and rest more.
Good luck and get better soon. Will think about you and all the sufferers. Wishes of speedy recovery to all with bad health and specially to you now, wherever you are.

 

[PatJ]

COQ10

CoQ10 is very helpful for some PWME but anyone with low blood pressure should be careful. I can't take CoQ10 because my BP is already too low, and CoQ10 lowers it even further, which increases my fatigue considerably.

 

[eastcoast12]

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

Sometimes I take xanax and it helps.

The mornings are just the worst.

Any ideas...What do you guys do?

Is it just the fatigue or is it that unnatural brain disfunction feeling? I use the word torture to describe the latter. To me it's by far the worst part. I tried all the suppliments and nothing helped so far. Pancake made a suggestion that might b beneficial. If you can get your hands on any sort of canibus it might be worth it to give it a try.

 

[erin]

CoQ10 is very helpful for some PWME but anyone with low blood pressure should be careful. I can't take CoQ10 because my BP is already too low, and CoQ10 lowers it even further, which increases my fatigue considerably.

I had no idea that coQ10 can have such effect with low BP. I can't use it for other reason, it gave me a really bad rash. It took me moths to recover from the rash on my both shins. T

 

[perrier]

Everything each of you describes my daughter also repeats. She often says: I'm dying, I feel like I'm dying. It is torture. It's like the body shackles the soul and both are tormented. What a monstrous illness. You are each in my prayers.

 

[u&iraok]

I also find low energy distractions. The sicker I am, the lower energy requirements are needed for distractions. In the 90s there was one computer game I must have played 10,000 times. I can play it in my sleep ... or zombie mode.

Haha, for me it is "Spider Solitaire". It keeps my fingers busy while I'm listening to another re-run on CBC Radio.

When I would get like this the only thing that would distract me were video games. But then I got addicted so be careful.

 

[cathy b]

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

Sometimes I take xanax and it helps.

The mornings are just the worst.

Any ideas...What do you guys do?

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

When my fatigue hits, it tortures me. I am curled up, and the intensity of the fatigue is unbearable. My fatigue is not just like "I'm totally wiped out, cannot even open my eyes", but it's like something is torturing me. This torture is unbearable, much more than the weakness itself. Usually the weakness is so intense, that I want to just die.

Sometimes I take xanax and it helps.

The mornings are just the worst.

Any ideas...What do you guys do?

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.