Hypnosis for PEM ?

[Billt]

I want to echo @Gingergrrl's post. I have mild-moderate ME and so does my son. Sometimes I find myself wondering if I could just think my way out of being ill. And if my son could try harder. This is despite me having spent hundreds of hours reading about the illness, living with it daily and having tried unsuccessfully to pretend that I'm well lots of times. I absolutely get that what we have is a physical disease and I strongly put forward that view to sceptical doctors. But without clear biomarkers, without obvious physical signs and in this environment where highly qualified medical specialists will just tell you to go practice mindfulness or GET, it's natural to occasionally doubt.

How much harder then must it be for a parent without ME themselves to not occasionally wonder if some kind of behavioural modification or psychological intervention might make a difference? These parents are accompanying their children through the hell of this illness. I think we need to cut them a bit of slack, especially if they have taken the time to come to this forum to ask questions.

Hypnosis, if it does anything at all, may perhaps help with pain or things like tinnitus, by directing focus elsewhere. I can't see how hypnosis could possibly stop PEM.

@Bill, good on you for being there for your son. Snowdrop had a good suggestion about investigating orthostatic intolerance.

SOC , Hutan Wonderful posts. I myself have R/A so I do know what illness can do. But it is much much harder to watch your child have an illness as you both know. I know the NO Cure at this time situation, but always looking for something to help. My thought was #1 see if it has helped anybody at all, and #2 if it did then MAYBE I would look further into it. If it could help him concentrate easier than maybe the PEM would be less. That was more my thought for it. Not really as a cure..

Everyone has been so kind to chip in, and it is really appreciated . It is how we learn. You guys have given me excellent information. Be well ... Bill

 

[Snowdrop]

hi @Billt

Well, you did say that you had tried a lot.
I have to young adult children and I appreciate how hard this is for you for your son's sake.
We all wish there were better treatments on offer. ME/cfs is fraught with political denial that people are actually really sick.
There is some anecdotal suggestion that young people especially with a clearly defined triggering infective onset do recover without much intervention. I'm sure we all hope your son will be one of them.
Resting is rather harder than it sounds at first. We sometimes call it ART for Aggressive Rest Therapy.
It actually feels a little like work to stay put when there are things to be done and stuff you want to participate in.
It's a learning curve and takes a while to get the hang of.

You seem very calm and focussed given our initial response. You've discovered there are a few 'hot buttons' here.
There is still plenty of good info to peruse here as your son 'works' on his recovery.

Should you have the time and are interested you can click on 'Snowdrop' and on my page I have a few public bookmarks that can be accessed that lead to a great deal of useful science info regarding ME.
Your son is fortunate to have such excellent support.
Good luck.

 

[caledonia]

I haven't tried hypnosis, but I've had temporary success with various energy therapies in alleviating symptoms. EFT (Emotional Freedom Technique) and Healing Touch Therapy are two that work for me. The Healing Touch Therapy seems to work better for longer term things like headaches.

So they might make you feel better while you're suffering from PEM, but they won't stop PEM.

The best way to stop PEM is to pace yourself so you don't induce it in the first place. This is as much of an art as a science, so it won't be perfect every time; but it's still very helpful for helping you feel more consistent, instead of being stuck in a Push - Crash cycle.

 

[Snowdrop]

That reminds me of the young man (James7 I think) who has had good results from doing a variety of small things that helped.
One thing I know he's done is lymphatic dry brushing of the skin.
Ahh, found the thread. Definite brain fart on my part. I just realised I was posting on the thread just before coming here.
So here's the link if you haven't come across it: http://forums.phoenixrising.me/inde...ery-story-in-case-anyone-is-interested.36127/

 

[Billt]

hi @Billt

Well, you did say that you had tried a lot.
I have to young adult children and I appreciate how hard this is for you for your son's sake.
We all wish there were better treatments on offer. ME/cfs is fraught with political denial that people are actually really sick.
There is some anecdotal suggestion that young people especially with a clearly defined triggering infective onset do recover without much intervention. I'm sure we all hope your son will be one of them.
Resting is rather harder than it sounds at first. We sometimes call it ART for Aggressive Rest Therapy.
It actually feels a little like work to stay put when there are things to be done and stuff you want to participate in.
It's a learning curve and takes a while to get the hang of.

You seem very calm and focussed given our initial response. You've discovered there are a few 'hot buttons' here.
There is still plenty of good info to peruse here as your son 'works' on his recovery.

Should you have the time and are interested you can click on 'Snowdrop' and on my page I have a few public bookmarks that can be accessed that lead to a great deal of useful science info regarding ME.
Your son is fortunate to have such excellent support.
Good luck.

Thanks Snowdrop, It is a hard road, but he all here have our hills to climb. I will do whatever I can in my power to help him, as I think any of us would. Money is always a problem, but I was at least able to bring him to OMI. I know alot of us can't even do that. So I am grateful I have gotten that far.

He does rest most of the time, but again most of his PEM is brought on by mental activity. Concentrating or even having a conversation for to long will wipe him out for days.

I'm sure most of us here have been told something we didn't like at one time or another. I do try to stay focused
on getting him better. And yes I think we all have some hot buttons that can trigger some responses. I don't mind any of the responses as I think all are trying to help and have some strong feeling about certain topics.
If it can help me help my son,, I don't any of it.

We are all here to help one another. And I must say everyone that has taken the time respond, I feel is trying to help us. As I would be if I had found something that could help. I appreciate EVERY response and I will look at those bookmarks. Be well my friend and stay cool up north. Thank you again... Bill

 

[SOC]

We have been to OMI and working with Dr. Kaufman for the last 6 months. He is throwing lots of things at him but so far nothing. Maybe just needs more time, but we were hoping and praying to see some ( any ) improvement by now.

As a parent of a child with ME, I fully understand that you want to see results relatively quickly. Unfortunately, that rarely happens. That doesn't mean that you won't see results, just that it may not be in the first 6 months after seeing a specialist. There's a lot of testing and trial-and-error that has to happen in the first 6-12 months before you and the doctor can start sorting out what is going to work for you. This is particularly true if you are sensitive to medications. Some people are lucky and they and the doctor hit on the best possible treatment for their symptoms right off the bat, but that's the exception rather than the rule.

I know this is difficult, but try to see this as a long-haul effort like losing a lot of weight or going from couch potato to marathon runner. It's not going to happen overnight or in big leaps. You have to keep working at it by the littles and learn to value the smallest of improvements during the process.

I had severe cognitive dysfunction and PEM from any cognitive effort. That is a very difficult stage. I suggest that you encourage your son to rest his brain as much as possible -- no reading, no video games, only short conversations. I know from bitter personal experience that that is extremely boring and unbelievably hard to do, but reducing PEM is critical to making progress IMO. I found none of my treatments worked very well as long as I was continuing to PEM myself.

Hang in there. Try to be patient (nearly impossible, I know). OMI is about as good as it gets. If your son can follow Dr K's treatment plan, I'm betting he'll see substantial improvement, but it will take time and persistence. This illness is not for the weak-spirited. We have to be tough to survive and tough to stick with treatments that may be slow and difficult.

 

[Billt]

As a parent of a child with ME, I fully understand that you want to see results relatively quickly. Unfortunately, that rarely happens. That doesn't mean that you won't see results, just that it may not be in the first 6 months after seeing a specialist. There's a lot of testing and trial-and-error that has to happen in the first 6-12 months before you and the doctor can start sorting out what is going to work for you. This is particularly true if you are sensitive to medications. Some people are lucky and they and the doctor hit on the best possible treatment for their symptoms right off the bat, but that's the exception rather than the rule.

I know this is difficult, but try to see this as a long-haul effort like losing a lot of weight or going from couch potato to marathon runner. It's not going to happen overnight or in big leaps. You have to keep working at it by the littles and learn to value the smallest of improvements during the process.

I had severe cognitive dysfunction and PEM from any cognitive effort. That is a very difficult stage. I suggest that you encourage your son to rest his brain as much as possible -- no reading, no video games, only short conversations. I know from bitter personal experience that that is extremely boring and unbelievably hard to do, but reducing PEM is critical to making progress IMO. I found none of my treatments worked very well as long as I was continuing to PEM myself.

Hang in there. Try to be patient (nearly impossible, I know). OMI is about as good as it gets. If your son can follow Dr K's treatment plan, I'm betting he'll see substantial improvement, but it will take time and persistence. This illness is not for the weak-spirited. We have to be tough to survive and tough to stick with treatments that may be slow and difficult.

Thanks SOC, I know what you mean. You have been at this much longer than we have. I am trying to be as pro-active as possible because most say that if you start ( the right treatment ) sooner rather than later it is so much better . I agree 6 months is still a short time in the scheme of things. It just seems like it took so long to just get here.

We are still waiting to see that very small progress, anything at all. I know you can relate.

Thanks for the encouragement... Bill.

 

[caledonia]

He does rest most of the time, but again most of his PEM is brought on by mental activity. Concentrating or even having a conversation for to long will wipe him out for days.

100mg of CoQ10 worked wonders for me for cognitive impairment. One of the very few supps that was like a magic bullet. I went from only being able to skim the headlines of a newspaper and getting lost driving in my own neighborhood to being able to read a thick book like Osler's Web, and not getting lost anymore.

If it's going to work, you should know within a few days.

 

[Billt]

100mg of CoQ10 worked wonders for me for cognitive impairment. One of the very few supps that was like a magic bullet. I went from only being able to skim the headlines of a newspaper and getting lost driving in my own neighborhood to being able to read a thick book like Osler's Web, and not getting lost anymore.

If it's going to work, you should know within a few days.

Caledonia , yes we are trying that now. I know it has helped several people here. Had gotten some suggestions from SOC for the CQ10. Some do a much higher dose. We have started low and working up. 3 weeks in and nothing yet.
May take higher dose and / or more time. Or nothing, but we are trying it. He is just like you said you were. He can't even drive without major PEM from concentrating. So, he doesn't drive at all.. Thanks.. Bill

 

[taniaaust1]

May I ask how long you have had this and how you have gone from the bed to training for a race ? That is fantastic !!! Sounds like you are leading a fairly normal live , I am VERY happy for you and hope you keep improving.

I know you addressed that question to another but I want to reply to it too, I ran in one of the worlds longest marathons when I was in remission with my ME. That remission came about by aggressive rest therapy (the very opposite thing to which you are wanting this other to do if you are thinking about getting them hypnotised out of "fatigue".

ME though isn't just fatigue, its a whole symptom complex of various symptoms including ones such as a crashing immune system when one over does things (could someone then be hypnotised out of an actual fever if it makes them worst?..I'd think not or hypnosis would be commonly used in hospitals for fever or any immune issues).

Someone over doing it if they have ME is quite risky. This is why also taking stimulates can be risky for us, I'd put hypnosis into the same bucket as it would cause someone to do more via causing them to ignore severe fatigue, which then would have bad real (not in your head) effects.

I knew someone with ME years ago online who didn't rest when needed ..in her case she was using her arms at the time and forced herself to keep going. The outcome of that was she ended up with permanently paralysed hand/arm.. completely useless and the doctors could do nothing to fix it and couldn't even say how it was damaged, only that neurological damage had been done to it and it wasn't fixable.

I am surprised though that no one has tried this even if it was out of desperation

Though I've successfully had professional hypnosis in the past to treat something else, there is no way I'd trial it for ME as I know even if someone gave me a false feeling of energy through hypnosis, the after affects for me of that extra activity would be bad. Why? Cause this illness isn't just in ones head but to do with mitochrondria and other things. Fatigue with this illness is a warning to cut back on things and really look after our health.

 

[Billt]

I know you addressed that question to another but I want to reply to it too, I ran in one of the worlds longest marathons when I was in remission with my ME. That remission came about by aggressive rest therapy (the very opposite thing to which you are wanting this other to do if you are thinking about getting them hypnotised out of "fatigue".

ME though isn't just fatigue, its a whole symptom complex of various symptoms including ones such as a crashing immune system when one over does things (could someone then be hypnotised out of an actual fever if it makes them worst?..I'd think not or hypnosis would be commonly used in hospitals for fever or any immune issues).

Someone over doing it if they have ME is quite risky. This is why also taking stimulates can be risky for us, I'd put hypnosis into the same bucket as it would cause someone to do more via causing them to ignore severe fatigue, which then would have bad real (not in your head) effects.

I knew someone with ME years ago online who didn't rest when needed ..in her case she was using her arms at the time and forced herself to keep going. The outcome of that was she ended up with permanently paralysed hand/arm.. completely useless and the doctors could do nothing to fix it and couldn't even say how it was damaged, only that neurological damage had been done to it and it wasn't fixable.



Though I've successfully had professional hypnosis in the past to treat something else, there is no way I'd trial it for ME as I know even if someone gave me a false feeling of energy through hypnosis, the after affects for me of that extra activity would be bad. Why? Cause this illness isn't just in ones head but to do with mitochrondria and other things. Fatigue with this illness is a warning to cut back on things and really look after our health.

"taniaaust1 , Thank you for the wonderful response. It is well appreciated and I better understand now thanks to all . I think my main thought ( even though I forgot to say that in my post ) was maybe it had helped someone with the concentrating and brian fog part of this. And MAYBE that would help with the PEM from that.

I am learning more everyday. At least I found someone on here that tried hypnosis for something ...lol
Is there a way to relax while concentrating ,thus causing less PEM ? Will keep trying to find something that can help.

Bell Well... Bill

 

[mango]

I tried NLP and self-hypnosis, among many other things, several years ago (before I knew the illness I had/have is ME). It didn't help at all.

 

[M Paine]

I just noticed that Dr Ros Vallings mentioned hypnosis briefly during a 2014 lecture about ME/CFS.

Mentioned around the 38:30 minute mark when addressing Pain Control.

This video is an excellent watch, I highly recommend watching the whole thing.

 

[alex3619]

I tried NLP and self-hypnosis, among many other things, several years ago (before I knew the illness I had/have is ME). It didn't help at all.

I tried self hypnosis, guided meditation, breath meditation, and very old forms of NLP back in the 80s to try to make a difference. None of it did. (Edit: also tried classic CBT - no benefit to PEM at all.)

The 80s was when I really explored alternative medicine, though the late 90s was when I really explored supplements.

Pacing does not fix PEM, but it can make it less common and less intense. It is also free.

There are people suggesting that various supplements might help, including antioxidants and alkalizing therapies. I do not know if this is reliable information or not. There are theoretical reasons to think they might help, but all the results are anecdotal.

I expect to see real treatments in some years, perhaps sooner if we can start crowd funding more studies. If we can identify mechanisms then treatments will come faster.

Various therapies can help some subsets of us, but so far there is nothing that is universally successful, but I suspect there never will be either. This is because many are presuming its all one disease, though most informed patients realize this is unlikely. How likely is it that one single treatment will fix many different diseases?

Learning how to deal with PEM is a search most of us are on. So far only pacing seems to have a high success rate. I do hope Rituximab changes that, but that drug may not be accessible for years after the phase 3 trial is complete, at least for most of us.

What hypnosis might do, if used responsibly, is help with coping. That is what classic CBT does too, and not the kind that tries to get people to ignore their illness. However there are cheaper and less problematic things we can do. For me that is forums (though I have had years I could not read), TV shows and movies, games, and online friends I spend time chatting with. Some of us do this from bed using a computer on an overhead table, or a laptop, or even a tablet. Mobile phones tend to be more annoying than helpful for this kind of thing. Indeed any hobby that is within someone's capacity can help cope with the bad times, even if that is just watching movies.

 

[beaker]

I am convinced PEM is an inflammatory process, Try a few Aleve next time (has to be Aleve (NSAID) ). Follow bottles instructions until PEM is gone. This is just so you see if yours is inflammation, obviously long term solution is needed.

I am no doctor just my experience, so just a thought not a recommendation.

My emphasis.
If you take it until Pem is gone, how do you know that it isn't just "normal" recovery from PEM ?

 

[beaker]

His CFS/ME seems to be from EBV which he can't seem to shake off. Parts of his immune system are off. Low CD4 and CD19. Doctors seem to think this is the problem. Immune system working 24/7 and can't get him over the EBV so he is completely worn out. I have checked into POTS and he doesn't have those symptoms

We have been to OMI and working with Dr. Kaufman for the last 6 months. He is throwing lots of things at him but so far nothing. Maybe just needs more time, but we were hoping and praying to see some ( any ) improvement by now.

Thanks for the response.. Bill.

sometimes the symptoms of POTS and/or NMH are not obvious b/c they blend in w/ everything else.
You might try the poor man's tilt if you haven't already, just to see.
There's a link on here somewhere, but sorry not up to digging now. If you ca'tf find holler and I ( or maybe somebody else has handy ? ) will try to find for you
best

 

[IreneF]

Please be aware that non-steroidal anti-inflammatory drugs (NSAIDS) cause heart attacks and strokes. This class of drug includes Aleve, naproxen, and ibuprofen. The FDA announced about two months ago that warning labels are going to be required:
http://www.webmd.com/heart/news/20150710/fda-warning-nsaids-heart_risks
http://www.fda.gov/Drugs/DrugSafety/ucm451800.htm

They are also bad for your stomach.

 

[Billt]

sometimes the symptoms of POTS and/or NMH are not obvious b/c they blend in w/ everything else.
You might try the poor man's tilt if you haven't already, just to see.
There's a link on here somewhere, but sorry not up to digging now. If you ca'tf find holler and I ( or maybe somebody else has handy ? ) will try to find for you
best

Never heard of that one, but will look it up. Thanks

 

[SOC]

sometimes the symptoms of POTS and/or NMH are not obvious b/c they blend in w/ everything else.
You might try the poor man's tilt if you haven't already, just to see.
There's a link on here somewhere, but sorry not up to digging now. If you ca'tf find holler and I ( or maybe somebody else has handy ? ) will try to find for you
best

Is this what you were thinking about?

 

[beaker]

Is this what you were thinking about?

Yes !
@Billt check out the link ! Click on the Poor man's tilt of instructions on how to do at home. Good luck .