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Tapering with ME/CFS


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Hi everyone,

 

I decided to join the Benzobuddies as you guys already know, withdrawing from these little monsters is one of the hardest things ever. On top of doing that, I have ME/CFS, which makes things very tricky as I'm drug sensitive and bedbound at the moment. I have taken benzos on and off for +15 years for anxiety/panic attacks, never on daily basis and never feeling that I was 'hooked'. I could go without for months.

 

Looking back I have had ME type of fatigue and other symptoms about the same time but crashed badly in 2010. Had a severe relapse in winter 2011 where my whole life just came falling down and I suppose had the worst kind of experience with ME as well as a 'nervous breakdown'. To calm things down, took 5 x 15mg oxazepam for 3-4 weeks. Managed to taper relatively quickly and well down to 5 x 7,5mg oxazepam and then 'hit the wall'. Took me 5 weeks to change over to equilevent amount of diazepam and have been tapering 0,5mg per week. Started with 12,5mg and now down to 9mg, splitting the dose half in the morning and half in the evening.

 

This is pretty much hell on earth as after I start to settle down with the withdrawl symptoms (sweats, shakiness, dizzyness, headache, insomnia, diahrea etc.) it has pretty much knacjered my adrenals (I have tested adrenal fatigue) and my ME symptoms go skyrising. I am just lieing in bed praying that I will make it...I have a lovely doctor though who is understanding (both ME and tapering) and tells me not to push it if I am feeling too weak. To be honest, 0,5mg per week (although I am on a relatively high dose still) is quite quick for me considering the ME. Last week I had to skip a week and let myself recover 14 days between the reductions.

 

I am hoping to keep a diary here and hopefully be able to encourage others going through similar situation and hopefully get some support as well  ;) .

 

Don't really know how this all works yet with the forumn, but I suppose will figure it out soon !  :)

 

 

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Hello Hannah :hug:

Welcome to benzobuddies so glad you found us. So sorry you have had a bad time, others will be along shortly to welcome you

You will get a lot of support here. Feel free to look around and let us know if you have any questions

 

Welcome aboard

Magrita

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  • 6 months later...

Hi Hannah

 

I see this is from a while ago and you don't seem to have posted more so I'm hoping you're okay.  I also have severe ME/CFS (and fibromyalgia) and have just had a failed attempt at Valium withdrawal that was made so much more complicated by our disease.  I'm not quite, but close to, bedridden.  If you see this and want to chat more I'll be around when I can. 

 

Take care. 

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  • 2 weeks later...

Hi,

 

have just logged in after...hmmm, nearly 6 months. I could not continue the tapering after 7mg, I became so unwell with ME, was in constant agony. Luckily didn't have to raise dosage and eventually (2-3months or so) the storm passed. It took longer than expected though. I am now back on tapering, but will be extra cautious and only even attempt it max 1 a month. I am now down to 6.75 and as of tomorrow 6.5mg. It feels good to be on the track again, although I feel awful.

 

I've been recently diagnosed with endometriosis, so that is another hurdle. I also take a lot of supplements and am seeing a homeopath in December.

 

I hope you're ok now! I will keep posting here again.

 

Very best,

Hannah

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Hi,

 

have just logged in after...hmmm, nearly 6 months. I could not continue the tapering after 7mg, I became so unwell with ME, was in constant agony. Luckily didn't have to raise dosage and eventually (2-3months or so) the storm passed. It took longer than expected though. I am now back on tapering, but will be extra cautious and only even attempt it max 1 a month. I am now down to 6.75 and as of tomorrow 6.5mg. It feels good to be on the track again, although I feel awful.

 

I've been recently diagnosed with endometriosis, so that is another hurdle. I also take a lot of supplements and am seeing a homeopath in December.

 

I hope you're ok now! I will keep posting here again.

 

Very best,

Hannah

 

I'm glad you came back!  But so sorry you're dealing with this on top of the ME as well, one would be more than enough. 

 

I've had such a hard time recovering from the inevitable ME PENE that came with withdrawal and whole hospital saga etc (weeks of withdrawal and then 7 highly stressful hours out of the house when you haven't been able to get out in months...I know you will understand that toll that would take even without the withdrawal still playing out).  So I'm still stabilising my dose now.  And tapering off a few other things.

 

Are you tapering with Liquid Valium or purely tablets? 

 

I was just thinking earlier about a couple of uniquely ME things that could complicate the situation more for us too - one being that our GABA is typically down-regulated (pretty sure I have that the right way) as part of the disease anyway.  And the other being that we may need to taper even more slowly according to some.  Always SO many things to take into consideration (I almost definitely have endometriosis too be haven't been up to the procedure to confirm it, and with you on the supplements and homeopathy). 

 

Take care and I hope that maybe we can help each other through this. 

 

Thisbe

 

 

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  • 2 years later...

Hi all,

 

in case anyone where is wondering how I am doing, I am doing well! I have been on the road to recovery from ME/CFS from January 2013 since I started a therapy called Mickel Therapy. I started walking a couple of weeks after I started it and its been an onwards and upwards curve since, with dips in the way. I have managed to taper of from Diazepam whilst recovering and am now down to 0.4mg / day. I use a jewellery scale to help to do the tiniest reductions.

 

I also did a training course called The Lightning Process abouta  year ago and that further helped me in my recovery from both CFS and benzos.

 

Never ever give up - keep going!!!!

 

 

xxxx

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  • 6 months later...

HI All

I decided to revive this thread as a shout out to those dealing with diagnosed CFS/ME and/or PIDD.  Hopefully those that started it are better.  My taper has activated my ME/CFS - mine is bonifide with PIDD and I'm heading towards being almost bedridden.  I'm just real scared and depressed because my sleep benzo is what helped put my CFS/ME into remission years ago and now, without much sleep on taper, it has returned.  Just want to speak with others dealing with this underlying condition and w/d.  W

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