Intro - M.E. + Klonopin w/d

Hi Folks,

Intro:

I've been browsing BB archives on and off for almost a year, but generally don't have the energy to follow regularly and interact.

I'm 58, have moderate-to-severe M.E. since late 1996 (21 years), discussed clonazepam (K) for sleep with my doctor in 2006, slowly increased from 0.25mg to 1 mg and maintained at that dose until early 2017 (11 years).  It worked fine for me; I never noticed tolerance symptoms, but cognitive problems I had with M.E. prior to starting K were worsening.  This (plus general apathy) is part of what led me to decide to taper off, starting January 2017 (too quickly, but I've always been a power-through person).

Long story short, I tapered fairly quickly from early January 2017 thru my last chip on April 23, 2017.  The quicker taper has allowed me to very clearly distinguish w/d symptoms from M.E. symptoms.  It's kinda crazy to say having M.E. has been helpful, but I can't think of anything else that might have prepared me for this w/d marathon!  (My heart goes out to all who have been through it, are going through it, and have yet to "join the club", and others who have not been so "lucky"!)

I'm grateful for BB posts as old as... 2007?... that have been helping me through sleepless nights and 'uncomfortable' days.  I'd thought about registering here several times, but the combination of both afflictions leaves me little energy to do more than ADLs; posting on message boards is like a shock-the-monkey experiment - you want the reward of social interaction with your fellows, even if it means the "shock" of physical collapse from what is a minor activity to most people.  i.e PWMEs (Persons With M.E.) know that real-time conversation, writing, and interaction of any kind - even fun and positive - can be crippling for someone with this disease.  (Really, I had the most difficulty just thinking up a handle and password for this forum, and gave up a couple times last year - hah!)

Why did I sign up now?  The "waves" + M.E. PEM/PENE (<<PWMEs will know what that is), are recently co-mingling more for me right now, so I searched again and hit on a more recent BB thread by some ME/cfs folks.  My first find of its kind!  There is a dearth of articles and posts on this combination of K w/d + M.E. patients' experiences (understandably!), and when I saw the newer BB thread, I felt a little pinhole work its way through the wall of isolation one feels with both afflictions.  So, I'm trying to peep through that pinhole a little at my M.E. + K "Peeps", and perhaps at the same time, reconsider writing an article about this "experimental treatment" for M.E. (I gave up on that ambitious undertaking for now).

As PWME's know though, please don't feel slighted or ignored if I don't respond to replies, or if I am very, very, very slow (days-to-weeks) to respond.  It is nothing personal.  It takes me hours to put out a few almost-coherent paragraphs, resulting in days of "flu" and bed-ridden exhaustion.  This is the first message board I've attempted in many years; many rest breaks required to just make it through the instructions.  My pillow calls me - may be a while before I'm able to post again.  Also, I know how difficult it is for PWMEs to read long paragraphs like this, so I’ll spare everyone in the future.  Much shorter next time, for all our sakes!:-)

Thanks All, and thanks BB for a great public service in these message boards!

Welcome to the inside of the forum, MountainEar.

The combination of M.E. (aka chronic fatigue) and benzodiazepine recovery must be overwhelming.  Just one of these conditions is a lot to deal with, much less both.  I'm glad you're here for support.

I'm not sure which thread you are referring to, but I'm sure you'll be able to find it.  Here is a link to Post Withdrawal as well:

Post Withdrawal Support

We recommend looking at The Ashton Manual by Dr. C. Heather Ashton.  It provides a great deal of information that can be very reassuring during any stage of this process, including a list of common symptoms with helpful explanations on the reasons for their existence.

Please take the time to Create a Signature (pertinent drug and taper history). This will allow members to see where you are in the process so that they can better support you.

Take care,

Challis 

Hiya,

I've got M.E. but have found withdrawal horrendous and have developed a whole set of new symptoms like dystonia that I didn't have orior to withdrwal.

At least before withdrwal I could lie on my back. Now with more severe muscle symptoms I'm mainly stuck on one side jamming my shoulder up.