6-12 month thread....

[[...]]

Okay I know we're all suffering but anyone on this blog that is 7 and a half month started to seem real wonderful changes and the symptoms start to drop off

[[so...]]

I haven't seen any real improvement lately.  At 8.5 months, the akathisia seemed to lift a bit.  At 9.5 months, the head whooshing either went down a bit, or I'm talking myself into it.  Everything is back full force now.  Very discouraged.  We will all get to the other side eventually.

 

Love, Sofa

[[...]]

I had a great day today!    I got sleep last night.  which was nice because I just finished 2 nights with no sleep precluded by 3 weeks of crumby sleep.  It's weird.

 

All my symptoms were building and building and building. peaked in last 2 days, and then boom.  Sleep happened and I was feeling 90% healed today.  Will see what tonight and tomorrow brings!

 

 

 

 

 

 

[[so...]]

Congrats g33k,

 

I'm so happy you're feeling all.  Excellent!

[[Sl...]]

 

Months 7-9 I had 5 almost 100% days.

Toughing out a virus-cold this week fore sure.

 

[[Cr...]]

I'm noticing my days becoming less "survival" and more hopeless annoyance combined with fear of being stuck like this....Definite zombie brain, and the dpdr is still strong, sometimes I get really disconnected from my body, everything is constantly a dull type of numb and distant, my left side still feels like its attached wrong and weak....I stare at the screen reading, but not absorbing, every once in a while I can take in some tv, but I remember nothing and it still all feels so strange....

 

My entire bodies balance is still really off, arms/legs uncoordinated and sloppy and strange feeling, but the rocking is less, which is great, still pretty bad disequilibrium with walking though. My face squeezing is less which I am SO thankful for. My vision is still horribly messed up, I see all kinds of bent distortion and lights and sparks and odd blurriness. Light sensitivity is still in effect and tinnitus and hyperacusis comes and goes in severity, yet is always there. Still dealing with a lot of tension and soreness and pains that crop up.

 

 

Mentally I'm pretty good, excluding the dpdr and intense fog, still get thought loops but they are more infrequent and anxiety seems lower, depression is high, but I don't think that will resolve until I'm feeling better cause it seems to be situational...Still getting hit with random old memories and thoughts that don't make sense a lot. The only fear I have is not getting better.

 

No windows, just waves and baseline, but baseline has gone up a tiny bit.

 

If I could just stay here and gradually get better that would be great.

[[St...]]

CP don't beat around the bush that is PROGRESS you're talking about there, i'm really happy for you!

 

I'm battling with this crazy flank pain at the moment it's NUTS, if i try and do anything that antagonises my nervous system (however small) i get this insane pain in my flank area, i feel like a dog on a leash

 

Been like this for six weeks now, getting an abdominal ultrasound on Monday just to be on the safe side.

[[MT...]]

I had a normalish day yesterday where it wasn't so hard to do what I needed to. Before that I hadn't had a good day since the end of July. My paresthesias (burning skin, hot/cold tingling wet face feeling) have been worse lately but not the end of the world. Insomnia is my worst symptom by far. I'm currently tapering off the meds I take for sleep (see sig) in hopes of normalizing my sleep.

 

Glad to hear you're doing better g33k and that others of you are also seeing it. We'll all get there.

[[St...]]

@[MT...] all it did was trick my mind into thinking i could do more than i could and that didn't end well. I'm completely housebound now, no energy at all, where as before the benzos and the subsequent withdrawal i was no where near as bad as that! I can't help but think benzo withdrawal is literally the last thing you should ever be dealing with when you're trying to recover from CFS, i can't wait for this withdrawal to be out the way so i can turn my attention back to healing CFS.

 

BTW my sleep is still hit and miss, but when i do sleep well now it's SO much deeper than the medicated sleep IMO and i think good quality sleep is an essential part of recovering from CFS. I still wake up every day feeling exhausted, but i have just started to get the feeling now that the sleep i'm getting is a lot more restorative than it has been

 

 

[[Al...]]

Okay I know we're all suffering but anyone on this blog that is 7 and a half month started to seem real wonderful changes and the symptoms start to drop off

 

I turned a huge corner by the 6th month and healed by the 7th month. Are you able to exercise at all?

[[MT...]]

Stuckindoors, I'm glad you're seeing some improvements in your sleep. That's such a blessing. At some point we'll get back to being able to focus on recovering from CFS. One step at a time.

[[St...]]

@[MT...]

 

- NO LED SCREENS AFTER 6pm

- HOT BATH IN THE EVENING BEFORE BED

- LISTEN TO AN AUDIO BOOK TO HELP PASS THE TIME IN THE EVENING

- NICE HERBAL TEA BUT I STAY AWAY FROM VALERIAN OR CHAOMILE (because some on the forum say it can mess with our Gaba receptors) LIQUORICE AND MINT is my favourite at the moment.

- FOR THE FIRST FEW WEEKS THERE ARE ALL KINDS OF DIFFERENT SLEEP EXERCISES YOU CAN TRY, GUIDED VISUALATION, SELF HYPNOSIS ETC.

- EXERCISE - IF YOU'RE GOT CFS YOU PROBABLY CAN'T, BUT ANY KIND OF EXERCISE THAT ISN'T PUSHING BEYOND YOUR LIMITS IS HELPFUL, EVEN IF IT'S JUST A FEW GENTLE STRETCHES.

 

But at the end of the day you need to accept that it's going to take some time to get your sleep routine back to normal, and sometimes the first step is just accepting that you can't get to sleep, and literally say to yourself "i know i'm not asleep, but i'm still lying here in a dark room, in a healing state and that's ok".

 

Good luck with it

[[MT...]]

Thanks, Stuckindoors. I decided a few days ago to start slowly tapering my meds but I've actually done OK. One night was a bit rough and it's more broken but my trend had been downward so I think it's OK.

 

Thanks for the good sleep advice. After struggling with insomnia for a very long time 11/12 I learned some tricks. There's a program, Flux, for the computer that filters out blue light on the computer and Twilight (app store) does it for phones. Both kick in after 5 pm. When I watch TV or am around light in the house I wear glasses that filter out blue light. I've been doing the hot bath thing more often with epson salts and epson lotion. I have some yoga and mindfulness kinds of exercises for night after I read in low light until I can't follow it well anymore. I'm doing pretty well with exercise-3-5 days a week. I've learned so much from folks on BB who've shared tricks. Are you able to exercise? Have you been able to leave the house yet? Doing all of this with CFS on top of it is *tricky*!

[[Pu...]]

Thanks, Stuckindoors. I decided a few days ago to start slowly tapering my meds but I've actually done OK. One night was a bit rough and it's more broken but my trend had been downward so I think it's OK.

 

Thanks for the good sleep advice. After struggling with insomnia for a very long time 11/12 I learned some tricks. There's a program, Flux, for the computer that filters out blue light on the computer and Twilight (app store) does it for phones. Both kick in after 5 pm. When I watch TV or am around light in the house I wear glasses that filter out blue light. I've been doing the hot bath thing more often with epson salts and epson lotion. I have some yoga and mindfulness kinds of exercises for night after I read in low light until I can't follow it well anymore. I'm doing pretty well with exercise-3-5 days a week. I've learned so much from folks on BB who've shared tricks. Are you able to exercise? Have you been able to leave the house yet? Doing all of this with CFS on top of it is *tricky*!

 

Thanks for the filer idea!!

 

I just passed my 8 month mark. I've been going to the gym since my 2nd month post-jump. I force myself to be active!

[[le...]]

hi guys

 

would like to know if you have chest tightness and pain, its like someone is pressing my muscles. its terrifying. am also taking cipralex

[[Al...]]

hi guys

 

would like to know if you have chest tightness and pain, its like someone is pressing my muscles. its terrifying. am also taking cipralex

 

I had that and it's very scary. Rest assure it's another benzo w/d and it abated after 2 days. IMO it's the muscles around the heart.

[[...]]

I just stumbled onto this thread.

I'm at a few days over 6 month mark now.

My absolute worst symptom is the feeling of derealization, and in episodes of panic, depersonalization is added to the mix.

 

Do any of you still experience this?

Has anyone noticed changes in this after 6 months?

I've felt like this for so long, it's hard to even imagine life without it.

any input would be greatly greatly appreciated.

[[Pu...]]

I just stumbled onto this thread.

I'm at a few days over 6 month mark now.

My absolute worst symptom is the feeling of derealization, and in episodes of panic, depersonalization is added to the mix.

 

Do any of you still experience this?

Has anyone noticed changes in this after 6 months?

I've felt like this for so long, it's hard to even imagine life without it.

any input would be greatly greatly appreciated.

 

I never experienced the dereaization until last Sat (on my 8th month anniversary!). It was uncomfortable but passed. Hugs to you!

[[...]]

8 months today.    Wish I could sleep tonight

[[Al...]]

8 months today.    Wish I could sleep tonight

 

Have you tried Meditation Oasis?

[[...]]

Okay  I guess I had a partial window at six and a half months because muscle pain and nerve pain was completely bearable for two weeks now I'm in two weeks of my 7th month and think I'm in a bad Wave very weak ,muscle pain and muscle weakness very intense the point where I end up in bed just crying in pain I'm hoping this ends soon and  just wondering if what I had at six and a half months with a partial window and that I'm in a wave it's hard to tell because I've had non stop muscle and nerve pain since the beginning of the cold turkey.  crying a lot through this pain is so unbearable sometimes I can hardly walk hoping this is a wave and it's going to end soon almost 2 weeks now any advice

[[MT...]]

I just stumbled onto this thread.

I'm at a few days over 6 month mark now.

My absolute worst symptom is the feeling of derealization, and in episodes of panic, depersonalization is added to the mix.

 

Do any of you still experience this?

Has anyone noticed changes in this after 6 months?

I've felt like this for so long, it's hard to even imagine life without it.

any input would be greatly greatly appreciated.

 

BB89, I used to have depersonalization and derealization all or most of the time. With every month it got a bit better and now I rarely experience it and when I do it's mild.

 

Ddd it sounds like you're on a really tough stretch of recovery road right now. Being wavy, weak and in such pain can be difficult to bear. I hope you feel some relief very soon. Keep up the good fight. Distraction can be really helpful during super crappy times. Can you watch TV or read?

[[...]]

Yes I can describe the TV but I have to lay on my stomach because I have more of this guy attic nerve pain but I do that a lot and I try to walk a lot just wondering if what I had was a partial window that closed and now I'm in a wave and we'll get a window again

[[...]]

it's a bit difficult for me to type.

i am a little over 6 months since my last klonopin

a few days ago, i slipped into one of my worse waves yet. severe severe panic attacks, derealization, depersonalization, can't eat, can't drink, can't think, can hardly move. the depression hit hard..i'm left desperate...almost desperate enough to take a klonopin. I'm scared what will happen if i don't get relief.

 

Did this happen for anyone?

This feels like acute or worse...

what can i do? what should i do?

 

I don't really have anyone in my life who i can reach out to the way I can reach out to all of you.

really any input would be appreciated...

i am truly so desperate and would do anything to avoid getting back on klonopin.

im cringing at how desperate this all sounds, and I apologize for it. this is probably the most desperate ive ever felt in life...

 

Thanks for reading this <3

[[Al...]]

BB89-I am so sorry that you are experiencing this. Please do NOT take a K. Your brain is working so hard to revert back to homeostasis. I got hit out of the blue with a horrible wave of anxiety and intrusive thoughts (to drown myself while I was taking a bath). This wave was as intense as when I was in acute w/d in Jan. After the wave abated it was as if someone turned off a light switch and I felt reborn again. That was my last wave and then I healed. I'm hoping that the wave you are experiencing now will be your last wave too.

 

Hang in there it really does get better when you cross the finish line.

Always Frantastic:)