Does anyone feel like they are getting worse before better??

[[jo...]]

I’m nearly 32 months off. At 6 months off I felt physically less disabled. I managed to go to the beach some days, even tried some dinners. Albeit I felt extremely overstimulated, terrified and in pain. I had more energy and motivation. I can’t even sit in the sun anymore because the heat triggers all my symptoms and it’s just not worth it. I used to at least find some contentment from being in the sun during summer and I no longer can be  

At the moment my akathesia is back daily, along with nerve pain which has started happening all over my body, but specifically back, shoulders, neck, head, feet and shins. I’m crushed with fatigue. I have lots of fear and terror again at night. As well as a pervasive feeling of unease in my body. I seem to have horrible mornings. I have a window between 11am and 3pm where things are a little more manageable then after 3pm begin a slow decline into pain, terror, fear and unease again. 

When I think back two years ago or so I remember having windows and waves. Windows would last a whole day maybe even a few days or a week. 
 

I don’t have any windows anymore. I only have patches of an hour or so that are less horrific. 
 

Does this happen? I feel so hopeless and disabled. I’m only leaving the house currently for short walks. Anything else feels totally out of the question. Why am I getting worse? Does this mean I won’t heal? I’m scared I’ll have to live like this for years and it’s so unbearable. I don’t know why others around me heal and have windows and I get worse.

 

I’ve had setbacks and a lot of stress take place especially the last year. But now I’m fully focused on myself and just praying I turn some kind of corner. I’ve lived this way since June 2020 and I’m so tired 

[[Ca...]]

I'm terribly sorry it's been so rough, troubling. Of course the thing about it is that everyone is different, can't quite predict how it goes.

But most people do seem to heal sooner rather than later. What you describe is quite common based on what I've seen over the years. Lot of times they heal mostly of mental symptoms then the physical hang on for a while.

In my case what few physical symptoms I had were pretty much gone by about 16 months. Then within about 3 years into it, things started getting worse from a nightmare one morning and it would on headed downward from then on. I don't think I'm going to ever see daylight again, but I'm almost 66 now so it doesn't matter too much anymore.

I'm more concerned about having the chutzpah to even get through another 6 months, given the level of fear/anxiety, ultra-sensitivity to stress, depression, grief nightmares, cognitive impairment, mental/physical coordination etc. I'm just tired of feeling sick alI the time, like I had the flu or something. I don't see how I could possibly get to 8 years off down the road. I see People on here 8 or more years and I have to salute them, truly. Just to mention, I was at very high dosage Klonopin and I suspect that killed it for me.

[[Co...]]

Hi journey , sorry you are going through this . I have been off klonopin for 8 months . I was on a low dosage but was tapered off in 8 weeks . I have had a multitude of physical symptoms . I thought I would be better and better by now , it just keeps going back and fourth and new symptoms just replace old symptoms. I also can’t take heat , I tried to go to a baseball game and ended up panicking down and had to sit in the cold room . It absolutely feels like you have the flu and can’t recover , then fear and panic get in your head because you think it can’t possibly be withdraw , I’m so confused as to why it does a little better then in an hour you can feel like trash . I still feel like I have the back of my head in tight vice , issues with neck pain , weird throat sensations , memory and concentration such just unwell feeling . But we can’t give up , pray and meditate and dig deep . 

[[de...]]

@[jo...]  You are not alone.  I am at the end of three years and I have struggled more this year than I did last.   I don't know what to tell you, except that I do not think it is uncommon to have some good months or so, and then have some really tough months.   I know we are healing, but it can be so very difficult at time.   Please know that you will begin to see your symptoms dissipate.   

[[Ne...]]

journeybacktomyself - I hear every word you are saying.  I don't understand this syndrome at all.  And why it feels we get worse for some as time goes on.  In this setback of 11 months, I have had absolutely no windows at all.  But I am able to sleep for 5-6 hours straight.  We need those windows to give us hope.  

[[ai...]]

I find myself in a situation similar to 32 months ago when I took my last psychiatric medication... I review my notes, and at 12 months, I was much better, or at least I could do things that I can't do today. I could go out and walk almost normally. But, obviously, I had several severe symptoms that have been disappearing. Now, I can't go far because I feel like I might faint, I have debilitating migraines, and other symptoms like very strong dizziness that don't allow me to live a normal life. I'm practically homebound, and it's very sad. I think what happens is that as some symptoms disappear, the mind focuses on the few remaining ones, and they become more noticeable and grow until they disappear. I don't know if this will improve someday, and I hope it does.

[[le...]]

I feel lot worse than I did a couple of years ago. Developed intrusive thoughts after the flu jab have left me virtually housebound, have little hope of ever truly recovering. After 5 years never had a real window but things definitely deteriorated a lot recently for some reason.

Edited February 6 by [le...]

[[jo...]]

I’m so sorry @[le...]. This suffering is so non-linear and unfair. The flu jab may have caused a setback but it doesn’t mean you are doomed to never heal. Although, I can totally understand why you feel that way after so long without windows. Hang in there. 
 

@[ai...] I have symptoms I never had before. I don’t know if it’s that we are “focusing” on them so much. I wonder if it’s just more healing happening and exhibiting in different symptoms. I’ve also been under a lot of stress and difficult things have happened to me in the last year. Hard to keep faith. 
 

@[Ne...] I totally understand and agree. It’s so beyond comprehension all of it 

[[Pi...]]

Hi Jouney,

Yeah it can be a bit all over the place. I improved a lot in my first 6 months off and then started to go backwards. Somewhere around year 2 I began to creep forward again, but at a very slow rate. I don't get windows, but I do get waves. I had a pretty decent month once, but that was an isolated incident.  

Personally I've given up asking why b/c it just sort of leads to frustration and I need my energy. There's no real answer. I find it really helps me if I can just root myself in the present moment and whatever happens happens. If I'm really attached to wanting a certain timeline or wanting to make sense out of this process, it usually leads to disappointment. It's a tall order when you feel like you're going backwards, but the thing to remember is that it doesn't mean anything. It's not an indicator of anything at all. It doesn't mean you won't heal or aren't healing or it will take you longer or anything. It's a chaotic process and you never really know where you're at, never know when you could turn a corner.

Myself, I just try to play it as it lies, so to speak.

Cheers,

P.

 

[[Na...]]

It was a mixed bag for me. During the first year or 18 months some things got better. Other things got worse. Particularly the physical pain issues seemed to get worse.