15 months off - EXTREME fatigue

[[dj...]]

Does anyone else have fatigue that is completely and utterly debilitating?  Fatigue is too nice of word for it.  
 

I’m on Day 3 of non-stop exhaustion that has me couch-bound 95% of the time.  Just getting up to go to the bathroom takes a ton of energy.  I’ve had the flu and mono and it’s not as bad as this.  I’ve biked over 100 miles in the heat and followed that up with 18 beers and felt like a million bucks the next day compared to this.  I have honesty never felt anything like this in my previous 42 years of life - not in the same area code, not in the same galaxy.  
 

Fatigue is easily the worst thing about this for me.  Just next to no energy 30% of the time and the rest of the time it’s somewhere between there and having a cold or something.  My mood follows my energy level. 

[[me...]]

@[dj...]hi I know just how you feel it's so unfair and frustrating for you.

I've been taken to hospital to try get my pain sorted didn't want come but had no choice the gp wants in for 5, days find out what's the problem. I know the problem 

Look after your self and just give in to it.i used to walk 100s of miles  

Bless🙏

[[dj...]]

I’ve done every blood test you can think of and had an MRI on the brain.  Nothing.  At my last appointment with the neurologist, after being somewhat defiant earlier, did admit he thinks it was probably the benzos, even though he’s never seen something close to this degree before.  
 

I got into the talk of GABA receptor downregulation with him, and he said that upregulation is typically restored in a matter of weeks, but by no means is that absolute.  Everyone on this board knows this, but it is nice to see a doctor recognize it. 

[[Wr...]]

Curious as to how you're doing these days?  I'm 12 months off and just got hit with this the last 2 weeks. Some days better than others, some days barely able to walk. 

[[En...]]

On 28/12/2023 at 12:37, [[d...] said:

Does anyone else have fatigue that is completely and utterly debilitating?  Fatigue is too nice of word for it.  
 

I’m on Day 3 of non-stop exhaustion that has me couch-bound 95% of the time.  Just getting up to go to the bathroom takes a ton of energy.  I’ve had the flu and mono and it’s not as bad as this.  I’ve biked over 100 miles in the heat and followed that up with 18 beers and felt like a million bucks the next day compared to this.  I have honesty never felt anything like this in my previous 42 years of life - not in the same area code, not in the same galaxy.  
 

Fatigue is easily the worst thing about this for me.  Just next to no energy 30% of the time and the rest of the time it’s somewhere between there and having a cold or something.  My mood follows my energy level. 

Yes I an having extreme fatigue right now too. I feel like I haven't slept in a month. No matter how much I sleep I still feel the same. My eyes are swollen like I haven't slept too. This is a horrible symptom to deal with because it sucks the life out of you. We will get through this time. It will get better for us again. Keep telling yourself this to cope. We are all in this together. 

[[Bo...]]

Yes crushing fatigue as Dr Jenn Leigh always mentions…. It’s beyond debilitating and I’ve had it on and off thru my years of all this. Your body needs the extra sleep and rest even though it doesn’t feel good, got to think healing is taking place. Just an unfortunate part of the hell of this bc we are debilitated by so many factors. 
How glorious it will be to be on the other side of this and I know it happens bc I’ve read and heard friends in severe cases recover from really difficult cases.

hope as you come up to two years off that things are improving on some areas!

[[Ca...]]

Yeah, I have it, too 24/7 amongst many other debilitating symptoms! Also bedridden again since I got off methylphenidate in April and Propanolol lately. I am 16 months off of Klonopin 

The only symptom that has been constant in me, an every day thing 24/7 is the sleeping disorder! No matter how much I sleep or not sleep I never ever get any restorative sleep at all! And if that wasn't enough the fatigue and sleeping disorder messes with my collagen synthesis and my skin now looks and feels like I had Ehlers Danlos syndrome and my skin suddenly sags like hell! I simply have no quality of life right now. Total emotional blunting and Anhedonia.  I can’t wait for the day to come when my sleep returns and the Fatigue and skin symptoms will be gone. I think most of my other symptoms are due to the sleeping disorder and crushing fatigue

 

Some member told me he has heard s lot of buddies see improvement with their sleep around 18 to 24 months! So there is hope for both of us that it might hopefully improve over the next months or in a couple of months 

Edited August 5 by [Ca...]

[[Bu...]]

On 05/08/2024 at 23:15, [[C...] said:

Yeah, I have it, too 24/7 amongst many other debilitating symptoms! Also bedridden again since I got off methylphenidate in April and Propanolol lately. I am 16 months off of Klonopin 

The only symptom that has been constant in me, an every day thing 24/7 is the sleeping disorder! No matter how much I sleep or not sleep I never ever get any restorative sleep at all! And if that wasn't enough the fatigue and sleeping disorder messes with my collagen synthesis and my skin now looks and feels like I had Ehlers Danlos syndrome and my skin suddenly sags like hell! I simply have no quality of life right now. Total emotional blunting and Anhedonia.  I can’t wait for the day to come when my sleep returns and the Fatigue and skin symptoms will be gone. I think most of my other symptoms are due to the sleeping disorder and crushing fatigue

Some member told me he has heard s lot of buddies see improvement with their sleep around 18 to 24 months! So there is hope for both of us that it might hopefully improve over the next months or in a couple of months 

Feels like I could have written this post, I can identify with it so much. 

A couple of weeks ago there were a few nights with some early morning restorative sleep. I thought I was turning a corner- the restorative sleep was then replaced by bouts of confusion and akathisia attacks. 
I had some restorative sleep last night for the first time in seven days - I think an hour. Was what I had been praying for every night, but then I had a ton of confused rapid thoughts that kept coming every time I relaxed and disturbed me . Wasnt just the odd intrusive thought but a whole slurry of mundane weirdness. 

I think my psyche is just not coping with the insomnia and fatigue. 

I’m only 2.5 months in and can’t imagine lasting several months longer 

I was very stressed/I’ll for 3months before it started and moderately ill for six months before then 

 

[[Bu...]]

On 28/12/2023 at 18:37, [[d...] said:

Does anyone else have fatigue that is completely and utterly debilitating?  Fatigue is too nice of word for it.  
 

I’m on Day 3 of non-stop exhaustion that has me couch-bound 95% of the time.  Just getting up to go to the bathroom takes a ton of energy.  I’ve had the flu and mono and it’s not as bad as this.  I’ve biked over 100 miles in the heat and followed that up with 18 beers and felt like a million bucks the next day compared to this.  I have honesty never felt anything like this in my previous 42 years of life - not in the same area code, not in the same galaxy.  
 

Fatigue is easily the worst thing about this for me.  Just next to no energy 30% of the time and the rest of the time it’s somewhere between there and having a cold or something.  My mood follows my energy level. 

How are you doing now?

[[Bu...]]

On 05/08/2024 at 21:27, [[E...] said:

Yes I an having extreme fatigue right now too. I feel like I haven't slept in a month. No matter how much I sleep I still feel the same. My eyes are swollen like I haven't slept too. This is a horrible symptom to deal with because it sucks the life out of you. We will get through this time. It will get better for us again. Keep telling yourself this to cope. We are all in this together. 

How are you doing now with your fatigue? I hope things are improving for you 

my fatigue is so variable - I do get windows when it is less awful

 

 

[[En...]]

5 hours ago, [[B...] said:

How are you doing now with your fatigue? I hope things are improving for you 

my fatigue is so variable - I do get windows when it is less awful

Yes I am getting the same as you windows of feeling better. 2 weeks of feeling extreme fatigue this is the 3rd. It seems to be letting up. Having a hard time sleeping. I wake up lots during the night. 

My wife believes this is all in my head. She told me that last night. I get upset when someone doesn't believe me. She sees me suffering the past 2 weeks. I guess she has had enough of this as this is not how I usually am. I am hoping this will be it for symptoms. 

Thank you for asking it is nice to have validation. I hope you feel better very soon. 

Edited August 11 by [En...]

[[Bu...]]

49 minutes ago, [[E...] said:

Yes I am getting the same as you windows of feeling better. 2 weeks of feeling extreme fatigue this is the 3rd. It seems to be letting up. Having a hard time sleeping. I wake up lots during the night. 

My wife believes this is all in my head. She told me that last night. I get upset when someone doesn't believe me. She sees me suffering the past 2 weeks. I guess she has had enough of this as this is not how I usually am. I am hoping this will be it for symptoms. 

Thank you for asking it is nice to have validation. I hope you feel better very soon. 

Sorry to hear about the strain on your relationship. 
my hubby believes me but is finding it hard to cope

have you tried showing her some info? The Ashton manual symptom list, wikipaedia page or other sources? Maybe even the success stories on this site? 
 

I saw a great guide for friends and family about Benzo withdrawal - not sure how to send the link though 

we can’t just magic away our symptoms because it would be easier on the family that way- if only we could

Im sending lots of good wishes to you and a hope that your wife will come around

 

isnt the sleep issue just horrible? 

 

 

[[En...]]

22 minutes ago, [[B...] said:

Sorry to hear about the strain on your relationship. 
my hubby believes me but is finding it hard to cope

have you tried showing her some info? The Ashton manual symptom list, wikipaedia page or other sources? Maybe even the success stories on this site? 
 

I saw a great guide for friends and family about Benzo withdrawal - not sure how to send the link though 

we can’t just magic away our symptoms because it would be easier on the family that way- if only we could

Im sending lots of good wishes to you and a hope that your wife will come around

isnt the sleep issue just horrible? 

My wife went through something similar a few years ago so she is basing her experience on mine. She is bitter from her experience. She didn't have as much problems with withdrawal as I have. She is also not a very positive person anyways.

I have had no support other than here during my taper. I suffered through it and was my own support system. I am proud of myself for going through this alone. It has been an experience that is personal. I have changed not the same person as I once was. 

The sleep is frustrating but I always think to myself it is only temporary and I will sleep well again. I was on an antipsychotic which helped me sleep I find. I stopped it 2 weeks ago and the sleep issues started. I have to let my brain heal and go back to normal. That's what I keep telling myself.

We will all heal with time. Accept the symptoms as part of the process it will help you through. Just have to go through it. 

[[Gr...]]

On 05/08/2024 at 18:15, [[C...] said:

Yeah, I have it, too 24/7 amongst many other debilitating symptoms! Also bedridden again since I got off methylphenidate in April and Propanolol lately. I am 16 months off of Klonopin 

The only symptom that has been constant in me, an every day thing 24/7 is the sleeping disorder! No matter how much I sleep or not sleep I never ever get any restorative sleep at all! And if that wasn't enough the fatigue and sleeping disorder messes with my collagen synthesis and my skin now looks and feels like I had Ehlers Danlos syndrome and my skin suddenly sags like hell! I simply have no quality of life right now. Total emotional blunting and Anhedonia.  I can’t wait for the day to come when my sleep returns and the Fatigue and skin symptoms will be gone. I think most of my other symptoms are due to the sleeping disorder and crushing fatigue

Some member told me he has heard s lot of buddies see improvement with their sleep around 18 to 24 months! So there is hope for both of us that it might hopefully improve over the next months or in a couple of months 

I will have two years on September 1 benzo and alcohol free life. Sleep now started improving probably around 15. It’s not the best but I can pretty much get 4 to 5 hours a night most of the time it’s broken sleep due to the fact that I go to the bathroom about three or four times a night some days I’m able to lay back down around 6 AM and sleep for a couple more hours depending on what symptoms I’m battling very rare and all sleep 7 to 8 hours but like I said that’s rare but we can live on four or five, but I would really love to have six or seven every night wishing you the best in healing .

[[Mu...]]

Fatigue is one symptom most of us experience. But it's not ordinary Fatigue or weakness . It's horrible and often accompanied with apathy. So what if the post hasn't been checked in 4 days.

For me personally Fatigue is brought on after over exertion. Four hrs yard work sent me into a horrible wave with Fatigue. 

Today is a good day, I'm feeling well and at the end of a 3 week wave.

Praise God 

Music60

[[Ma...]]

My fatigue is so severe I am 1 with the mattress, fading into an unknown abyss. It’s actually terrifying and I do everything not to surrender to it but ultimately I have no choice but to. 

Similar to sleep paralysis at times.

Yet I say to self that this is when the real healing happens, like (in my metaphor riddled world) being put into a medical coma so the body can heal without interference.

Edited August 11 by [Ma...]