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I have all the same symptoms!!

As you know I have ME/CFS. Had it since 1996.

There is an astonishing overlap.

 

This paper argues that WD causes something like CFS in some ppl: https://pubmed.ncbi.nlm.nih.gov/30037616/

 

You can access it in full via Sci Hub.

 

Having said that it says ppl recover and they tend not to from viral onset ME/CFS.

 

Most ppl with ME got it from a virus', an estimated 10,000,000 more will have it post COVID19.

 

CFS is a dysasturous wastebasket diagnosis invented by shrinks on the 80s.

 

True ME is a form of polio. It initially occurred alongside polio outbreaks.

Decades of ppl muddling up ME with all kinds of other shit is what has lead to the lack of treatment.

 

The ME Association just did a 3 presentation about ME/CFS

https://meassociation.org.uk/2021/01/full-up-signs-put-up-as-medical-students-let-us-unpack-the-mysteries-of-me-cfs/

 

The diazepam helped my ME, clonazepam is often given for it.

 

 

 

 

 

 

 

 

Don't know if this will help, but I had been disabled with moderate-severe ME for 10 years before ever taking K (clonazepam).  My ME was very sudden, following gastroenteritis.

 

[i had more detail going in mind for this post but had to cut short due to no stamina to think, read, edit or type.  Haven't been to BB boards in many months for that reason...]

 

In short, I was very much in touch with my acute, then chronic, moderate-severe ME symptoms before ever taking my first dose of K.

 

So I will just say my fairly rapid taper and the first 3 years of PWD/PAWS were distinguishable and far more intense and relentless than all but acute or severe relapses of ME.  Many symptoms are described as the same - for example light and sound sensitivity - but each affliction, PAWS or ME, has had their own 'flavor' and intensity of these symptoms.  PAWS dominated ME in unrelenting intensity (and I'm certain now worsened ME).

 

Year 4 for me (2020) began the overlap.  Most of the symptoms that appeared and raged with PAWS are still here, but with less intensity, with a few exceptions.  But my familiar ME symptoms that were dominated for the past 3 years by PAWS are now sadly a welcome familiarity, albeit markedly worse, thanks to PAWS!

 

With the ME research that has been going on in recent years, I wouldn't be surprised if post-benzo syndrome will be found to have similar findings at the molecular level.  After all, there have been people diagnosed with ME following other toxic exposures by veteran ME clinician-researchers.  And since post-benzo feels to me like I was slowly poisoned by a neuro-toxin, I wouldn't be surprised if post-WD eventually lands in a similar neurological classification as ME.  Then again, I'm not a doctor or researcher, so I'm just speculating with a damaged brain!

This sounds just awful.  Were you on any other meds prior to taking the benzodiazepine? 

Sounds like where im heading.. -No heart palps yet though.. Not all sx are extreme though..

Probs why I dont list my sx..

I feel for you all, thats for sure..

Pretty cranky about it all today, so ill shut up now..

This sounds just awful.  Were you on any other meds prior to taking the benzodiazepine?

 

That is only part of what I go through! I have hundreds of symptoms daily. I was put on multiple anti depressants and came off them CT. had some withdrawals looking back but nothing , I mean nothing, compared to this.

 

I thought you said you were this bad? I get this all the time, people telling me they’re really bad then I hear they can go shopping or go to work or something. It makes me feel so so alone in my severity.

 

I don’t have CFS, but do suffer from severe fatigue and started getting it in the latter years of Klonopin usage.  I can’t offer much but I will say that, in my experience, getting up and doing things has been good for me.  I never want to do anything and if left to my own devices, I probably wouldn’t.  But, I have a wife and two kids to support.  Being a good father and husband is what has sustained what modicum of motivation I have.  But being just a little active is a distraction and takes my mind off this.  I’m speaking more in terms of fighting off anxiety and agoraphobic habits, as opposed to CFS, but I do think we can sort of train our mind to overcome obstacles.   

 

It’s hard to imagine that there are people out there worse than me as I’m in my head all day and have no energy.  But, somehow I am working (from home) and taking my kids to go do stuff and even going on trips (although the last one put me in a seriously bad state).  Benzo withdrawal and its symptoms sure are debilitating but mind over matter has its benefits.  I’m basically forced to do stuff just due to the needs and demands of family and finances, but it’s certainly helped me in the long term.  Otherwise, I wouldn’t be doing anything.

Sounds like where im heading.. -No heart palps yet though.. Not all sx are extreme though..

Probs why I dont list my sx..

I feel for you all, thats for sure..

Pretty cranky about it all today, so ill shut up now..

 

Hey can’t! I remember you from when I first joined this forum and started this horrific journey in 2018...

 

I can’t believe how much damage these drugs cause. I honestly am stunned at the state of my body from this one tiny pill.

 

Are you able to function?

Your not wrong..!! Im getting hit with things I would have never imagined, and Iv always known it wasnt going to be pretty at best.. 

I remember talking to you back then, though I do wonder what I might have said and hope it wasnt too ummm -useless..   I do try to keep up with you and everyone a bit as I read, but my posting is pretty hit n miss.. Sorry..

 

“Can I function..??” -Thats a damn big question..!!

I been trying to think how to answer that all day, and there is no easy or quick way, I keep getting lost in the caveats and explanations that would be needed... I probs need to start my own “current” thread when I feel up to it and can post a bit better, -its been a while and the disconnect from membership turnover is slowly growing.. In essence, and frankly, Im not sure how well the current general BB population would receive my current situation (moving away from symptoms).. -Probs something many posting on this or similar threads might understand..

 

So.. I could get out of the house if it were on fire.. -kinda thing..

On the other hand, walking from room to room is an increasing struggle.. The chooks I brought to force a walk outside each day get fed most days, but are lucky C18 is living here..

I mopped the floor about 2 years ago, but quick sweep the main areas once every week or two.. -You guys all know the story, I wont start on showers and changing sheets, washing, cooking, etc..

 

The big problem beyond that is fluctuating doses of my current and final med to function beyond that, shopping, appointments, -anything.. Iv gotten it down to a fine art, and minimal.. Thankfully the rather slow tapering has seen me slowly adjust to the tolerance (as opposed to damage), but its less than ideal..

I am still seeing slow healing in many of my old (10yr) symptoms, even the deep ones, but the newer stuff that kinda kicked off around when I suddenly lost half my face nerves a couple of years ago has me worried.. The worst is the spreading leg neuropathy and fatigue, -and my head aint too happy either..

...and then we are back to your above lists, to varying degrees..

 

Im certainly not claiming to be the worst or perhaps even close to, but certain aspects have me at a point where the bigger picture outweighs actual discontinuation atm.. I guess Im a bit more focused on gathering myself and my life in a holistic way, and putting some things in place, before the final run to freedom.. Im not sure thats much different to saying -“Im stuck”.. (but not beaten yet, just cranky..)

 

Can I ask, How many people tried to maintain muscle function and vitality, only to have it crumble away despite the efforts..?? I remember back to the end of my valium taper and I was out riding dirt bikes in the mountains with the teens and whatnot, but thats a distant dream now..

I just couldnt beat the “initiation motivation” issues, and now thats cracked a little, my damn body wont play the game.. (yet) 

 

I hope thats a bit of a picture at least...

Best wishes, and much empathy..