Aggressive Rest Therapy: My Experience

[Justin30]

I wonder once we finally figure this out is that at onset when the brain starts feeling weird and neuro issues start if the will look at medically inducing a coma for a while to let the insult to the brain heal.

 

[Sasha]

It's only today that I've realised that it's the "wired" issue that has been interfering with my ability to rest.

Maybe this change, even though it's for the worse, is a sign of things shifting.

Or maybe not! Who knows.

 

[Mij]

I've been giving this some thought as it was not talked about (as I remember) from the early ART experiments

I was never "wired" during my first 10 years or so of ME and when I practiced ART when I could. Don't remember any patients at that time talking about being "wired". It's not something I get very much now.

Be interested to hear others experiences i.e. does the wired feeling calm down with ART or is ART unsuitable to times people are feeling wired.

For me there is a difference between feeling "wired" and cognitive fatigue (PEM) and having difficulty processing information, talking etc. For example, every time I go out (even for a short period) whether it's grocery shopping, hair cuts etc I will never sleep that night even if I do ART when I get home- my brain is too wired, this feels more like an adrenaline surge. I feel dehydration and hung over when I get up in the morning.

As for the cognitive PEM fatigue I can sleep but don't feel that adrenal wired surge, doing ART helps relax a little.

 

[ukxmrv]

I wonder once we finally figure this out is that at onset when the brain starts feeling weird and neuro issues start if the will look at medically inducing a coma for a while to let the insult to the brain heal.

It's been tried before - the enforced sleep therapy by a doctor at Charing Cross London. It was a disaster for ME patients

http://www.duncancampbell.org/content/preying-hope

 

[Jenny TipsforME]

I'm not sure about the details of how long to rest in proportion to activity but something I have noticed over the long years of ME is that boredom often preceeds improvement. This may be an easier rule of thumb? We feel bored when we're less stimulated than we can tolerate (like the opposite of stress or sensory overload). A craft activity that would be challenging today would have beeen boring when I was almost well. When I've been really ill even lying in bed I'm not bored, it sort of goes by in a haze. Today lying in bed with no stimulation at all would be tortuously boring (I am lying in bed writing this).

. I get so frustrated, my body hurts, I am bored and have lots of sad and frustrated thoughts to try and avoid.

I think this type of approach puts a lot of strain on mental health resilience. IIRC there's a TEDtalk about mind wandering being the biggest predictor of unhappiness, or something to that effect. I find I do remarkably well, all things considering, but time with absolutely no stimulation and not feeling sleepy is very challenging. Difficult thoughts crop up. I've found since I had a temporary paralysis in May that being completely still has been making me a little anxious in itself. I've recently got back to yoga nidra though (body scan style meditation which is faster/more structured than mindfulness). This is worth trying if you haven't already.

I do tend to 'rest' listening to podcasts/books or having TV on in the background. For me it seems to strike a good balance between body and mind requirements, though I know my body would benefit from more complete rest I also need to be realistic about what I can tolerate.

 

[trishrhymes]

I haven't managed to even get started on ART yet - life and other health problems getting in the way. I'm determined to at least start working towards it. I have been feeling 'wired' over the last few weeks, if by that you mean can't switch the brain off, trouble (more than usual) sleeping etc. I've realised that one of the factors in this is probably getting heavily involved in here.

I've only been a member of PR for 6 weeks and have become a bit obsessively active (I won't go on about it, I've already done so on a thread I started in the members lounge).

It has been a particularly frenetic 6 weeks in here, with the PACE data release, Millions Missing, the Naviaux paper and Ron Davis's input, and now the MEGA study controversy. I threw myself into joining in the discussions of these.

I have now unwatched a lot of these threads, and already, just in the last 24 hours feel a bit calmer. I have noticed some of you have been active too. Maybe we all need to take a back seat for a while.

 

[Jenny TipsforME]

@trishrhymes the world of ME has been bizarrely fast paced and busy recently. I have had attempted rests which are really mental rants "why did they do x?" "Why didn't they do y?!"

Managing alerts is something that I've found useful. For the past week I've turned off Twitter alerts and uninstalled another app. On here I only get alerts if I come to the site. It is great to have contact with pwme and feel up to date with developments though.

 

[taniaaust1]

I've been blundering along with this for a couple of weeks and seem to be all over the shop.

At the mo I'm feeling tremendously wired, which doesn't normally happen to this degree. No idea what to make of that.

are you sure it is "wired" and not just feeling restless due to pushing yourself to rest more (one could get more restless too if one was improving so feeling more energy so hence then less wanting to rest)

If its actually wired, for myself that isnt a good sign and makes it very hard to do something like ART

If its wired, take care you arent doing anything with the resting which is causing wired feel eg for myself if I rest with my electric blanket on that can for me cause other symptoms to come in eg wired kind of insomina, obviously I have a slight issue with EMF. So if experiencing that while resting more consider if you could be getting more EMF exposurein some way then you usually do with the extra resting.

I'll be interested to hear how this goes for you if you keep it up for another couple of weeks so should be able to tell more exactly what is going on with it all by then.

 

[taniaaust1]

I've been giving this some thought as it was not talked about (as I remember) from the early ART experiments

I was never "wired" during my first 10 years or so of ME and when I practiced ART when I could. Don't remember any patients at that time talking about being "wired". It's not something I get very much now.

Be interested to hear others experiences i.e. does the wired feeling calm down with ART or is ART unsuitable to times people are feeling wired.

me too, I didnt have wired as one of my ME symptoms before or while I was practicing ART. I'd think it would be extremely hard if not impossible if a person is feeling wired. That wired may need to be then treated first eg Klonopin/Rivotril in that situation.

As I improved I experienced restlessness with ART though (not wired). Some who dont experience wired so dont really know what that is like, could confuse restlessness due to improvement with wired.

 

[Sasha]

are you sure it is "wired" and not just feeling restless due to pushing yourself to rest more

Definitely wired - I can hardly read for 20 seconds and then I need to be off doing something else. Can't relax or concentrate.

No other changes in my environment.

 

[Valentijn]

Definitely wired - I can hardly read for 20 seconds and then I need to be off doing something else. Can't relax or concentrate.

Ever tried NAC?

 

[Sasha]

Ever tried NAC?

I think so - one of those things that made me ill, I think.

 

[Cheesus]

I have noticed over the long years of ME is that boredom often preceeds improvement.

My mum always tells me she knows I am improving if I'm complaining of being bored.

I think so - one of those things that made me ill, I think.

NAC made me HORRENDOUSLY ill. It was like it put its finger on the core problem driving my ME and jabbed at it frantically. It was honestly the stuff ME nightmares are made of. I could barely speak. It took me weeks to get back to baseline. NAC stimulates T-cells, so maybe it had heightened an autoimmune response...?

I wonder if you and I may have the same type of ME, Sasha. We both respond well to LDN and both react negatively to NAC.

 

[Sasha]

I think you've confused me with someone else, @Cheesus - I had zippo response to LDN in either direction.

 

[Cheesus]

I think you've confused me with someone else, @Cheesus - I had zippo response to LDN in either direction.

I am thinking of Sushi. You have similar names

 

[Sasha]

I am thinking of Sushi! You have similar names

Not the first time that's happened, and I can't say that I can blame people!

 

[Strawberry]

Glad to see this thread, I need some advice! How on EARTH do you shut your brain up while resting? I haven't been able to truly do ART, its been more like "more effective pacing" than true ART. I can't shut my brain up. I *HAVE* to do this, I *HAVE* to do that, must do laundry, water the plants, wash dishes, put this away, do that oh and don't forget to do this... Shut.... UP! It seems it is easier to shut my brain up while resting on the couch than it is to lie in bed.

Also, to those of you that were talking about OI, is there a thread that talks about OI and how it affects pacing to recover a bit? Last time I crashed a year and a half ago, I apparently now have OI. I need to understand how this all fits in. Although I no longer have 90% of the neuropathy issues I used to have (its very minor now), I now can do so very little due to the OI. I feel I am worse now than I ever have been. Does this mean ART will not be as effective as last time I did it?

 

[Jenny TipsforME]

How on EARTH do you shut your brain up while resting? I

Honestly I haven't sussed this in 18 years! Sometimes it can be a sort of symptom in itself, part of tired but wired state, so be gentle on yourself. Some techniques help some of the time. Personally I find this most reliable as it calms without having to put effort into calming my mind:
https://tipsforme.wordpress.com/2014/04/04/review-yoga-nidra/

 

[Paintmyturquoise]

In the last two weeks I had crazy boredom followed by improved HRV and the best day in a month, followed by a crash from moving house. So I agree it's a good sign

I get wired quite easily, usually from emotional stimulation, phone calls or even from a Drs apt. Makes it so hard to sleep let alone lay still from ART. At those times it's often better for me to just choose the lowest stimulation/effort possible that distracts me enough to lay still. Gentle stroking massage or energy work also helps if I'm lucky.

 

[Paintmyturquoise]

Oh and I also meditate whenever I can but sometimes if my HR is up trying to do that just makes me more distressed. Sometimes focussing on something or distracting myself is much more constructive, there's certain times of the day when it's much easier to stabilise my HR so I will sometimes ride it out and wait until then