Extreme fatigue support page

[[bc...]]

Brookevale.....hope you can give the flu bug a boot.....take care and it will soon pass....I had a cold a while ago and it seem to stir up symptoms a lot more. 

 

MTfan.....glad to hear that  the  anxiety is getting a bit better.  Hopefully your windows will get bigger and bigger.  My anxiety is there every day....one stubborn symptom that will not leave. 

 

Hang in there.....we will get thru this mess......Sending healing thoughts to all........

[[bl...]]

Hello my good ole BB friends!

 

I hope everyone is getting some windows! I need one so bad!

I'm still plagued with this wave that slammed me 2 months ago.

I'm so ready for this to be done! So tired and exhausted. Still in bed more then out..

 

[[...]]

Hi Buddies!

 

I am so glad to see that some Buddies are getting windows and even getting rid of plaguing fatigue!

 

I apologise in advance, this is a rant, I am not usually a negative person, quite on the contrary - please don't read if you're prone to "triggers"

 

I am in so much distress with mine, I went into this taper because I was experiencing severe fatigue and from 4mgs K down to 1.4mgs, I feel just as bad! I can't say I've ever had any real window, it's been "mind over matter" to do things. My brain wants to sleep so badly. There is no muscle weakness, it's "all in the head" but no it is not a consequence of "depression" - it is the other way round: I do feel down because of my physical abilities, this much I know.

 

I wish there could be a biological explanation, tests which would show something like hormone levels gone haywire... anything!

 

My GP says I'm bound to be "drowsy" with the drugs I'm on... how come I wasn't particularly sleepy when I first went on them... and stayed on them for so long? How come it all crept up in a sly manner so that I only managed to think of the drugs as culprits when it had gone already so far?

 

Sorry for this rant, I am just so exhausted of "it all", day after day the same thing... so much shame of being in such a state that I don't even try to explain my situation anymore - because I guess I'm also wondering whether I'm doing the right thing in coming off K first... and worrying about having a life, someday... sorry again, I'm just... so tired  :'(

 

Wishing everyone a window, any source of hope!

Hugs,

Julz

[[...]]

Hi Buddies,

 

On this beautiful first day of Spring, I thought I should apologise for my last post. I needed to vent and did it there. Please let me know if you want me to delete it.

 

May this new season bring you much much better days, full of hope and full of life! 

 

http://img.picturequotes.com/2/258/257752/goodbye-winter-hello-spring-quote-1.jpg

 

Warm Hugs!

Julz xxx

[[Mi...]]

Julz - Don't apologize for your rant. That is what this forum is for. Sometimes we need to express all the pain and fear and impatience. You have come a long way, farther than me during the same time. I know it's hard to take it one day at a time, but I keep hoping we will feel better soon. Enjoy your spring day.

 

With buddy love,

MirandaJane

[[MT...]]

Hey Julz, MJ is right. There's no reason to apologize. We're all here for each other. How are you doing now? This is such an up and down process but with a lot more downs. Yet we can make it because we're stronger together.

[[...]]

Thank you for your words, MJ and MT

 

MJ, I also want to say we are all different and that comparing our tapers doesn't mean anything. We are all here to do what is best for ourselves - your taper is your success 

MT, exactly - the support here is invaluable 

 

My fatigue is still pretty intense. At the moment I wake up already "exhausted" but manage to put a foot in front of the other and get a few things done before 2 or 3 pm, then my brain seems to want to shut down for a while and I give in because I also lose my drive to do things - I enter a state of apathy - and sleep seems to be the best option at the time.

 

It is a daily struggle which causes anxiety and low mood. It's fatigue but it is very specific - nothing to do with "ordinary fatigue" from "ordinary life". That's why "I lost it" and went on a rant LOL.

 

It will get better though, it has to  I trust this process otherwise I wouldn't be here, would I? LOL 

 

To all Buddies, I hope you are seeing "windows" and finding ways to cope better with your symptoms altogether.

Take care of your Dear Selves 

Warm Hugs,

Julz xxx

[[Lo...]]

Hi Julz , unfortunately i know exactly where you are coming from. After i jumped i was so fatigued i could barely lift my arms or stand at times. Apart from the anxiety this was my scariest symptom and im sure this caused alot of my crazy panic attacks in the early days. So sorry you are going through this and i started this page for support for people like us. Sorry you didnt get a reply after you original post for some reason this thread went quite for awhile. Not need to apologize there has been plenty of times we all have got on here and let loose!

 

Hang in there buddie , we wont leave you hanging again 

[[...]]

Hang in there buddie , we wont leave you hanging again 

 

Hi Lockie and thanks for your support! I am really glad that you've managed to get rid of most of your fatigue and are getting your life back 

 

I never meant to imply that "I was left hanging" - no need to apologise either LOL! I had began to worry because I thought I'd "killed the mood" or something!! I'm glad it's not completely the case lol.

 

I look forward to hearing how everybody is doing!

Hugs,

Julz xxx

[[Mi...]]

Julz and everybody: Some days I am so fatigued I can barely get up to feed myself. Other days I'm so depressed I just want to jump off a bridge. Other days I'm shaking with anxiety and fear. And then there's the occasional panic attacks and depersonalization. In fact, these symptoms can change by the hour, not just by the day. I just have to keep hoping I will heal someday, but I'm never sure. Even the success stories usually talk about "improvements" after many months or years off benzos. When will I be able to function in the world again? Right now, benzo buddies are my new family. We have to hang together. Please don't let this thread drop - we need it!

 

MirandaJane

[[bc...]]

Haven't been on here for a while.....

Julz.....so sorry that you are going thru the fatigue....it can be brutal, that's for sure.  But you have come a long way and things will get better.  I know I had severe fatigue for a long time....then it went away for a bit...but came back.  So you never know when things will change.  I really thought I would be so much better at just about 6 months out but things seem to be the same with same symptoms every day.....I have had a few tiny windows.  This is a long, rough road to travel and we don't know when we will reach our destination.  Just hang in there......

 

Miranda Jane....so sorry that you are struggling thru all these symptoms.....I have had and still have a lot of those every day.  The anxiety is with me every day from the minute I wake up.  The depression had gone away for a while, then came back with a vengeance and is still hanging around. Just when you think a symptom is gone....it rears its ugly head.  It is a very difficult journey.

 

MTfan.....together we will all get there.....just one day at a time is all we can do.  I hope you are having more good days and leaving the bad ones behind.  This is such a long process and our patience and perseverance is challenging to the max. 

 

Lockie.....nice to see you back....hope you are feeling better each and every day.  This road to recovery is not an easy one and very discouraging at times, to say the least.  But we have to believe that things will be better and in time....lots of time....we will be healed.

 

We all need to rant once in a while because this is not easy.....and we all understand....we all need support, encouragement, and reassurance that we will get to the end of this journey....to recovery....to happiness, again.

 

Hope everyone is doing as well as can be expected.....sending healing hugs and thoughts to all......

[[MT...]]

I'm glad we have this place where we can share our struggles and our successes without judgment. What we're doing takes a lot of courage, determination and patience but we're creating a better future.

 

I still get very little sleep which affects my fatigue and cog fog but I'm functioning at a much higher level than in previous years. Nothing like normal people but for someone with CFS who couldn't really exercise, this is progress. Some days it's easy to get discouraged so I have to look hard for those tiny bits of progress and be aware I'm looking at the world through poop covered glasses. Some day I'm hoping the poop will wash off

[[Lo...]]

Hello everybody, awfully quiet around these parts! Just dropping in to say hi. As my symptoms are easing i find myself lurking instead of posting.

 

Things are going really well for me lately, im still not working but getting close. Im on my feet alot more. The cogfog is fading and just get a bit of mild anxiety every now and then. My fatigue has faded to tiredness and i feel i have the strength to walk around comfortably without feeling like im going to collapse all the time.

 

I still spend a bit of time on the couch as i do still feel really tired all the time but nothing on the brutal fatigue that plagued me. The only thing that has increased is muscle pain and soreness. This is brutal right now, my back muscles are unbelievably tight and can cause a fair bit of pain during the day.

 

Either way things are looking good and hoping to be mostly healed by 1 year off .

 

I hope you all are healing well, keep strong people. Its happening even if it doesnt feel like it 

 

[[MT...]]

Lockie, that's terrific that you're seeing this kind of progress. You're on your way to getting your life back

[[os...]]

 

When I initially tapered too fast from the beginning for 7.5 months, OMG my fatigue was severe and ridiculous, by month 2 I was pretty much bedridden, in the following months it just got worse and worse but I was tapering too fast daily without a single day of holding, I really was doing it all wrong.

 

At my worst in that time, I was so fatigued I could barely take a bath and dress myself, it seemed to take hours and I felt like I was 100 years old, even a bath and getting dressed was a huge, huge effort and would leave me absolutely exhausted, later in my taper I was unable to stand in my kitchen and wash a few plates in the sink for more than 10 minutes and I literally had to sit down.

 

I have been there my friends, trust me on this, so fatigued that I have been unable to function and yes, it is scary to feel like one has absolutely NO energy to do the simplest of things.

 

My fatigue started to improve after awhile and even more so when I employed a very long hold in my taper, I went to the UK last December after holding for a year and navigated the airports on foot just fine, a year before I would have needed not only someone with me but I would have needed wheelchair assistance also because I could not have walked the long distances from check in to security and then to my boarding gate, it would have been way, way too far for me back then.

 

I had a wave recently and it knocked the stuffing out of me a fair bit and so I am trying to recover from that, my mind is clearer which is something but I have some fatigue back again but it is what it is, I am just slowly trying to build my strength up, I have started back on really healthy eating and although I do not have much energy at all, it's not as bad as it was a couple of years ago, I was really messed up back then but unfortunately this has been one of the most persistent symptoms and it has taken a long time to ease off but it does and it will, it's just not always easy to see improvements.

 

It really is like having CFS and sometimes my adrenals just feel shot but I am trying to walk a little every day, it's not much but it's something, right now I walk from my through my lounge and then kitchen and back 20 times a day, that's like 400 steps, it's not much at all but it does get my legs moving every day and when I am a few more weeks out of this recent wave, I will start walking outside again for 20 minutes at a time.

 

 

[[...]]

Hi Buddies!

 

Thank you for your support and encouragement, Lockie  It is great to see people getting rid of this crippling symptom, I am delighted that you are getting your life back!

 

Hi Oscar and welcome to the thread!! The exhaustion you had back then sounds extreme. I am with you about holding, I'm glad it has helped so much and that you feel so much better 

 

I believe my fatigue/exhaustion to be worsening just now. I also see some other symptoms ramp up - not all of them though - so I'm weighing the pros and cons of attempting a hold in my micro-taper. I also cut daily and am arriving to 1.25mg K on the 2nd. I was hoping to get down to 1mg before holding but the exhaustion is what motivated me to get off benzos in the first place so I guess I should listen to this particular symptom. My most harrowing one - no physical pain but it comes with just so much frustration!!

 

Focus on self-care and moving more. We'll see how this pans out!

 

Wishing you all the best!!!

Julz 

[[Lo...]]

Hi Oscar, i know this fatigue all too well and thats why i started this thread. When i jumped i had no strength at all, any longer than 2 minutes on my feet and my legs would start shaking and give out. 9 months out now and although tired and sore its not a problem being on my feet 1/2 - 3/4 of the day.

 

Julz great to hear you are listening too your body. If i had done the same i would have saved myself alot of suffering. Hang in there mate!

 

Becalm, how are you doing?

[[bc...]]

Hi Lockie....thanks for asking and hoping that you are still making great strides in your recovery.  This is a difficult road but one that we must travel to get to wellness. 

 

Well month 7 started out on the WRONG FOOT....but I am hoping it ends on the RIGHT FOOT.  Still struggling with the same symptoms....in a bad wave right now with a lot of symptoms and some have been severe....thought I got rid of a couple of symptoms....but they came back with a vengeance.  Just need to hang on...somehow.

 

Thought I would be much better by the end of 6 months,...but NOT.  So now looking forward to 9 months and hoping there will be a noticeable improvement....with some big, hugh windows.   

 

Hope that everyday gets better and better for you and your windows are bigger and stay open longer.....Sending healing hugs and thoughts your way.....

[[Lo...]]

Hi guys just a quick check in. Heading towards 10 months off pretty quickly now and things have been pretty good over the last week. Had 1 day of cement head and anxiety but the rest of it reasonably clear thinking. I seem to be on my feet a fair bit more and although im still sore and tired its pretty managable. Things are really looking up and hoping im nearing the end of this nightmare.

 

Hope you all are keeping well , hang in there healing is on its way!

[[...]]

That's wonderful Lockie! 

 

I can't say I'm less fatigued but I am trying to move more and get out of my head, so thankful to have enough "energy" to be able to get out a little every day. I had my first good walk of the year this morning, Spring is around the corner and in spite of needs to nap, I am motivated to make the most of my "good/easier" times of the day 

Wishes of healing to all! 

[[Lo...]]

Hey Julz , so glad you had some energy to get out and about. Keep pushing , it will take time but you will get there

[[bl...]]

Hello BB'S!

 

Lockie, that is great news!! I'm so happy for you!

 

I just wanted to share that I too had been bedridden 98% of the time more in bed then out from my 2nd

out up until the beginning of my 8th month out (just a little over 2 wks ago). I'd say I'm in bed about 20-25% now. Wow! I'm sooo very thankful that I can definitely see progress!!

 

I wish you all much love, strength, peace and harmony! This is by far the worse thing I have ever been thru! I just wanted to assure you all that healing really is happening, even when we don't actually feel that it is! It DOES get better. Time, time and more time.

 

I turned a big corner at 8 months out! I'm sooo thankful!!

 

Stay strong BB'S!

[[Lo...]]

Thanks blessed . So glad your doing well, things are getting better but its so slow you dont notice until you look back a few months. Still a long way to go but at least its not so scary anymore

[[bl...]]

Thanks blessed . So glad your doing well, things are getting better but its so slow you dont notice until you look back a few months. Still a long way to go but at least its not so scary anymore

 

You're very welcome!

Stay strong! We're gonna get thru this!

[[Lo...]]

Hello my fellow fatigue buddies , just wanted to drop on here to say thankyou for your support during my early days. The fatigue i experienced was absolutely feral and i was that sick/fatigued at times i wondered how my heart was still beating.

 

The good news is im nearly 11 months out and no longer feel that fatigue anymore! I have enough energy to get through the day most the time and if i do run out of steam i sit down for an hour then good to go again unless i have a wave. Waves tend to only go for 2 days now not weeks / months and are finally managable.

 

I still am dealing with quite intense dr and anxiety but mainly when i push myself too hard, my symptoms seem to rapid cycle through the day which i think is a good sign (anxiety, muscle soreness, cogfog,cement head, mild fatigue and windows)

 

All in all things are heading in the right direction and just wanted to say thankyou.

 

Hope you are all keeping strong my ole buddies. Hang in there