Pain and the Brain - what can we learn to help ME recovery?

In Lorimer Mosely's book 'Painful Yarns' he demonstrates his experiences of people's pain and how the brain relays pain to the body. He is an Australian physio therapist who has specialised in back pain. His many stories are entertaining and amazing, but the key information they demonstrate is that pain is something the brain uses to tell a person there is something wrong, it is a construct of the brain. People can no longer have something wrong with them - for example an amputated limb - but their brain can still be telling their bodies to feel pain. Or conversely people may have something wrong with them, but because of the context or their personality their brain doesn't tell their bodies to feel pain - for example a man with a nail through his foot walking two miles barefoot to the hospital and being absolutely fine, then banging his knee on a bench and screaming out in agony! One example from his book.

Mosely is not saying these people don't feel pain, he's not saying they are not in pain, what he's doing is holding up a mirror to the fact that pain is something in essence created by the brain, and that the brain can also choose or be taught not to tell us about that pain. This is very different from saying a person with an amputated leg doesn't feel pain it is in their head. It isn't in their head, their brains are creating that pain in the same way as your brain will create pain if you stick a knife in your leg, both are real, both are valid. But if people's brains can also, for whatever reason, not inform someone they are in pain what can we learn from that, and how can that information be used to help people who experience chronic rather than acute pain?

How could this knowledge be applied to ME? Could it be something has switched our brains on to pain, symptoms etc and is it possible to switch that information off? I don't have the answer to that last one, I don't think there is a magic bullet, but I do think it's possible that by unavoidably being aware of our illnesses we are reinforcing the message from our brain that there is something wrong and we need to experience it. Again, like Mosely, this is not in anyway the same as saying it is in our minds, it is as real as putting the knife in your leg, it's just that perhaps we don't actually need to be told we have a knife in our leg anymore, perhaps we need to find a way of convincing our brains to tell us different things. Perhaps this is how we can get stuck and need help to get unstuck. We are ill, it is real, but how we think can affect how we experience our illness and we need to find the most useful ways to think to aid recovery.

This fits with something I heard on Radio 4 recently about surgery to electrically stimulate the brain to help various conditions, including enduring untreatable depression and Parkinsons. One man has chronic and constant pain in his arm, so bad that he has considered chopping his own arm off, only the doctor told him it wouldn't make any difference, the pain is not in his arm, it would still be there because the pain is a message to the brain that has gone wrong. By stimulating the right part of the brain they can change his experience of this pain. It's not that the pain isn't real, it's not that the doctors don't believe his experience - they do enough to do an expensive operation - it's that his brain or the neural pathways are stuck on the PAIN ON mode and by stimulating the brain they can either turn these off, or as one patient put it 'It's not that the pain has gone, it's that the pain doesn't matter anymore!'

All Food for Thought.

How to use walking in water to recover from ME

So finally, here is how to use water to help recover. My aunt had severe ME, and I think had to be carried into the water at the beginning, but she has put water down as the biggest contributor to her amazing recovery in only 2 years!!! The shortest I have ever heard of. I have worked via e-mail with her physio in South Africa and this is how she advised me:

I started by being in the learner pool (which is so much warmer) 3 times a week for 5 minutes only. It is important to have a day between paddles and not to swim. I simply walk I in the water up to shoulder height using my arms to part the water ahead of me. Like I said before when I first started it took a lot out of me, I had to be driven there, I felt very shivery when I got out and getting dressed felt like a huge mountain to climb. I think my aunt was so ill she was only in the water for 2 mins to begin with. So I did 5 mins Mon, Weds and Fri however ill I felt and after about four weeks I felt stable at that amount of time so then I increased it by only 2 minutes more. You do this every time, keep at the new time, keep being steady with it, allow yourself the day off to recover, keep to your fixed schedule the rest of the time and when you feel you are stabilising at that amount of time up it by 2 minutes. It is important not to push it, not to try and ramp it up too quickly, and if something goes wrong, you get an infection or over do it like me, then rein it back a bit by 2 or 4 mins depending on how ill you are. I have had to drop back down three times now - which is always very disappointing - but each time I have found it takes less time to get back to where I was.

When I got to 11 mins for the first time I suddenly realised I was feeling very much more robust. Unfortunately I got an infection and was very sad to drop back to 7 mins after having a couple of weeks off, but I got back to 11 mins in about a month, rather than the two it had taken me to get there. The exciting bit is finally getting to 15minutes as then you can start to swim a little. You swim for 2 mins, then walk for 3, swim for 2, walk for 3, swim for 2 and walk for 3.

It all sounds like graded exercise, but I have to say it is more than that. As I have said I wear a heart monitor in the water and as soon as I get in the water my heart rate starts to drop. Getting in the water feels really healing there is something lovely about it even when I was struggling either side of the getting in the pool. But recently where I pushed myself up the silly mountain and had just reached 15 mins and had to drop back to 13 mins, getting in the water just calms everything down, all the weird body symptoms, the autonomic nervous system stuff just seems to be soothed by being in the water. And this time it has only taken me 2 weeks to feel stable enough to get back to 15 mins and 2 min swims. When I think back to last December and how much better I am, how much more robust, I feel really hopeful that given another year or so I will get back on my feet properly. It's important to be realistic and take it steady. My aunt thinks the most important thing is to make steady progress and avoid crashes as they damage the body further. It is of course all about mental toughness - if only those idiots who think it's all in our heads would realise how tough you have to be mentally to live with this awful condition!

Where I lived before was too far from a pool for me to use even though my aunt told me it was the best thing I could do and I couldn't quite believe her, but here I am lucky to be a 10 min drive away and have a leisure centre where I have paid £150 for a years unlimited swimming, so I'm only paying £1 a swim in essence. It is the best bit of money I have chucked at this illness and believe me from mitochondria cell function tests to injecting myself with B12 and magnesium its the best £150 I have spent.

I urge anyone with ME, however ill, to try it. To beg someone to take you and stick to a tight schedule and try it. I know my aunt isn't the only person who has recovered this way, although she is the fastest the physio has known. If you want any advice let me know, and of course if you sign up to e-mail reminders you will automatically keep up with how my recovery is going!

So Cross with myself!!

As anyone who cares will have noticed I have not managed to post about how to do water therapy yet. Why? Because I have shot myself in the foot so to speak and have been too ill to write much until today.

Last Friday I was upset about something and it all just served to emphasise how powerless and trapped I feel by my illness. I got myself in such a state about it and how I can't do anything to change this, I can't just apply my mind and my will power and BOOM it's all gone that I wanted to do something that made me feel less trapped and powerless. So what did this silly cow do? Well, we live two thirds of the way up a small Welsh mountain, so I in my hysteria dragged myself up the last third of it! I had to stop every hundred yards or so to sit down and rest and cry and the dog kept giving me concerned looks, but with no one else to talk any sense into me I just kept going. I got to the top eventually and I lay on the ground and looked at the clouds and the sky and began to feel a bit better. After a while I even managed to stand up and walk slowly back down feeling much better than I had on my ascent. I even managed to kid myself it was okay, there I could do it. Ha! Ha! Ha!

Well if I haven't learnt before I have now. Just feel like I've been unplugged again, my heart's been going random, sugar crashing again and generally feeling really rotten. The problem is even I had stopped appreciating how much progress I'd made. I felt like because I was doing so well when up and about and not feeling rotten that others who don't know me so well would think, 'what's her problem, see she walks, she talks'. I let this get to me, I let my own imaginings get to me, I forgot to remember that the only reason I was so good at walking and talking was because I had worked so hard at sticking to my schedule and building up my water therapy time. Well I will remember next time, however distressed and angry I am at living in this glass cage, I will appreciate that the walls had extended a little further, how easily they can fall back in on me.

This post is not about me moaning about how I feel, I want it to serve a purpose for others. I felt sharing this foolishness on my part may help others not make the same mistake.

Lets see how long it takes to gain back my ground, I feel I have gone back several months, it will be interesting to see if it takes less time than that to stabilise again and get back to where I was a week ago. Wish me luck.

I will blog about water next, soon. If you want to know when I've blogged next please do sign up for e-mail reminders. That's all your e-mail will be used for, nothing else.

Walking in water - what a huge difference it's made to my health!

I started doing water therapy because my aunt said she believed it was the main thing that had enabled her to make a full recovery from total disablement within only two years! With the help of her physio via e-mail I have implemented a regime that is giving me real hope of a full recovery!

When I first started the water therapy in December 2012  I was too ill to drive the 10 mins to the pool and back and when I got out after being in for only 5 mins, getting dressed felt like climbing a mountain! After maybe 4-5 weeks I was able to start driving myself on good days and after about 8 weeks I was driving myself all the time and getting dry & dressed got easier and easier. Despite having a couple of dips during the past 7 months - one because of a chest infection - I am now so much more robust all the time. I easily get myself to the pool and back, I can shower and wash my hair, and get dry and dressed easy as anything and I am getting stronger and stronger and apart from my fatigue and adrenalin symptoms all my other symptoms are gone!

I know that part of this improvement is due to my pacing schedule (see previous post), but I believe a huge part of it is down to walking in water. During my 6 week chest infection where I had to give in and stop going to the pool for a couple of weeks my nasty symptoms started increasing and I was sugar crashing, feeling really sick in every cell of my body and my adrenalin was getting difficult to bear. I e-mailed the physio  in South Africa in despair, but she reassured me that once I got back in the water these symptoms would abate again. I couldn't quite believe this -  despite having observed what a positive affect the water had on my symptoms previously -  but she was right! Immediately after the first session they started improving again and after a couple of sessions those nasty symptoms, that make me feel like lying down and dying, had gone!

I wear a heart rate monitor in the pool and I had noticed right from the start that my heart rate could be 140 bpm, but as soon as I got in the water I could just watch it start dropping to somewhere between 60 - 80 bpm. I also noticed that despite feeling really rotten going to the pool, after a visit those symptoms were normally much improved following the visit. Why?

Well  I think two things are going on: 1) the weight of the water pressure around the body is helping counter orthostatic intolerance (see my previous post) helping to close the blood vessels and push blood back up toward the brain, and 2) the sensation on my skin as I move through the water is giving the nerves and neural pathways something else to communicate to the brain other than symptoms. Kind of confusing the brain somewhat and interrupting the sick messages going between brain and body. In addition, it also has the effect of  graded type exercise that gives the brain a rib cage that it can acclimatise to, but it is certainly a lot more than a graded exercise regime!

My next post will teach you precisely how to do water therapy so you can try it for yourself!

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Walking The Tight Rope - mind v matter!

There are two tight ropes in ME. One is strung through my body and it overreacts to ordinary stresses so that rather than setting off a mild ripple it sends a reverberation like a jump jet just went past rather than a challenging phone call with British Gas! And the other is the tight rope I walk each day between mind and matter.

I have no doubt that ME is a physical illness, there are tangible and - if the medical profession can be bothered - measurable physical symptoms, however how we feel and think can also interact with the illness and hinder recovery. I have observed this in myself and others. I think the reason some people find lightening process (LP) ; reverse therapy; stone age diets; Gupta and whatever else 'cures' them is a combination of things. Firstly, the nebulous nature of the disease is frightening, frustrating and unpredictable, in order not to over do it we have to be aware of our bodies and our symptoms and keep checking we aren't pushing ourselves too far, but unfortunately this understandably results in us thinking and worrying about what our illness is up to and how our bodies are most of the time. This reinforces the neural pathways carrying messages from our brain reinforcing all the horrid symptoms. On top of this we can learn that movement and activity makes us feel worse and start to fear movement and activity and shy away from it. This is what I mean by walking the tight rope, trying to find the balance between pushing oneself physically and mentally just a little, just enough not to sink into the awfulness of the illness and not pushing just that bit too much and falling off the wire.

I think that what you need to do when you first hit the wall and what you need to do as the illness progresses are different things. When you first hit the wall you need to stop, you need to rest, you need not to push at your body and try to force it on, but if you rest, remove stressors etc your body will start to recover. The problem is that the physical thing, whatever it is, can start to heal, very slowly over years, but the problem is if you don't start to challenge yourself just a little you will get stuck. Stuck and maybe even spiral backwards. Many many people seem to improve hugely after a few years but then can't quite make a full recovery. And many people will say they were 'cured' by doing x or y. But with most of these people when you start to talk to them you see that they had made huge leaps forward in recovery before doing x or y or they had been ill for 10 - 20 years before doing x or y. Well what if what had happened was their bodies had healed, but the mind was now stuck, stuck in the ME loop, not quite able to take that last step forward and then they go and do something like LP and hey they are 'cured' what they perceive is that LP cured them, but what they have forgotten is how very ill they were 5, 6, 7, 8 20 years earlier, how far they have already come and this last push was just what they needed to push the mind over the finish line and start thinking they can get 100% better.

I was recently talking to someone who put their recovery down to Reverse Therapy and LP, but once I started asking about it it became clear she had already made huge progress, and these tools helped her put the last pieces of the jigsaw in place to make a full recovery. It made me appreciate that when I tried Gupta after only being ill 6 months and it moved me forward hugely, but didn't 'cure' me, perhaps it couldn't because not enough time had gone by for my body to have healed. It has made me think that perhaps I need to revisit my Gupta methodology and start implementing it again now that my body has had a further 18 months to heal itself in. That maybe I need to give it another push, whilst keeping to my schedule and using water therapy, but within that framework start challenging the thoughts about the body and illness once more.

PACING - the hardest thing to get right - Tricks and Tips!

Living with someone who was finally recovered from ME just as I met her I thought I knew what pacing was, until I got ME and had to try to put the theory into practice. At the ME clinic the physio said, 'Hey you know what you're doing, in fact you probably know more than me!' Yep, I did know more than her, but more than very little is still not a lot!

I don't know about you but I tried listening to my body, trying to look for patterns, trying to tell when was the moment when it was time to stop. My partner said she'd learned that when she was thinking 'Hey it's time to stop' she'd probably already gone over the edge. I would be up and as I felt the Tsunami of ME building I would try to cram that last thing in, finish that small task (talking to my daughter for example) try batting off that feeling of impending doom that I wasn't going to make it to bed in time. It was a nightmare and of course involves lots of thinking about the body, tuning into my symptoms, analysing my health. NOT USEFUL!

Then I read Lorimer Moseley's book 'Painful Yarns' which gave me a fanastic insight into the brains methodology for communicating pain and helped me understand why my aunt's physio in South Africa had suggested trying a rigid schedule. A rigid schedule is like a rib cage, it holds you in place, means you can plan your day and don't have to spend time thinking about when you should be resting, should it be now, in 10 minutes or two hours ago!

So right now my schedule looks something like this:
8am-8.30am up for breakfast.
8.30am-9.30am quiet bed rest.
9.30am - 11am Up
11am- 12.30 quiet bed rest
12.30 - 2pm Up
2pm- 4pm quiet bed rest
4-6pm Up for dinner etc.
6-7pm quiet bed rest.
7pm -10pm put daughter to bed and be UP, but on sofa watching some TV if I'm lucky.

This schedule does move some if I need it to, but essentially I aim to have 12 half hour slots of rest paced throughout the day.

I found out this was what I needed as my baseline by making a chart for myself where I divided the day into half hour slots and spent a week or so trying out different patterns, times up and finally settled on no more than 2 hrs up at one time and no more than 2hrs resting.

Now the key to my schedule is that I get up and lie down as laid out above whether I feel good or bad. To begin with I was often getting up when I felt sick as a dog, getting through the 1.5hrs longing for bed, but staying up until the allotted time to go back. The same for being in bed, if I'm feeling okay I go to bed regardless. This is my bottom line, this is where I am building from, and the thing is it goes against all known ME wisdom to be up even though your feel crap. ME wisdom says you will crash. Similarly getting out of bed when feeling crap: YOU WILL CRASH! NO, this isn't true. Often I have noticed that past a certain time in bed feeling rubbish it doesn't get any better, in fact it starts to feel worse. I've also many many times since implementing this regime observed how staying UP despite feeling rubbish (but only for the allotted time) does not lead to a crash.

After the first few weeks of doing this I noticed that I started to have less UP and feeling really awful, I began to feel I could do things when I was UP and not just hang around downstairs tolerating my family wondering why time goes so slow when you feel so ill!

I've been using this methodology for the last 5 months and I can honestly say that apart from a couple of dips, one caused by a chest infection, my life has become more stable, my health is more stable. I don't feel that how I will feel is as unpredictable as it once was. Sure I can dip for no apparent reason - hey I've got ME - but on the whole from one week to the next how I feel is far more stable. In my UP times I am far more productive and my rest times I don't spend as much time feeling RUBBISH and wishing I was dead.

The thing now is to build on it. That's what the hydrotherapy is all about....

Hey is there anybody out there? Am I blogging into space? Ask me a question - go on....

To Gupta or not to Gupta that is the question

I wrote a lot about Gupta a year or so ago on an ME/CFS forum, I tracked my progressed using it.

What is it? Well, you may have heard of the lightening process (LP), it's  a bit like that, only it doesn't requiring you re-mortgaging your house to do it, nor does it tell you 'Stand and Walk, a miracle has been cured because ME doesn't exist It's All in Your Mind!' Like the LP however, it uses Coaching and Neurolinguistic  Programming methods (NLP), but it takes a more humane approach than LP, it is slower and the most important thing from my point of view is YOU CAN GET A REFUND if it doesn't work.

I know when I first got ill and heard about LP it was very difficult not to consider trying it. Lets face it we are all desperate to get better and we think, what is that works for me? What if I waste the next X years being ill and it could have worked for me? Hey it may be £700 for 3 days workshop, but what if.... I think that's what I hate about LP the way it exploits that fear and hope. I used to do coaching and training in the voluntary sector and I know that I would never charge more than £200-300 a day for running a workshop, that's for all the participants, so divide that by even 5 people and it shouldn't cost each person more than £200.

Anyway I digress into my loathing for LP, back to Gupta. I don't think Gupta is ripping people off, or trying to tell them it's all in their minds. He was ill, he has recovered, and he is sharing what he learnt and developed whilst making a good living from it. It costs about £100 for a set of dvds that take you through the whole process. If you are not satisfied after trying the method for 6 months you can get a full refund! That's what I did. I did find it immensely helpful, it took me from walking slower than my 74 year old mother, and getting no further than 200 yrds on a good day to being able to walk for 10 mins or so a day. It was hard work, it took a leap of faith to overcome my fear that I might be damaging myself in some way, but it was really worth trying. So why did I get a refund? Because it didn't completely cure me in 6 months and hasn't since and I know I gave it a really good shot, but it promised a full recovery and there was no quibble with getting my money back. So on balance I would urge anyone to try it, it could make a big difference to your health and you never know you could be at the stage where your body has recovered enough that it actually does help you make a full recovery. What have you got to lose? Only your time and hey you've probably got plenty of that on your hands as you lie around in bed. And if it doesn't help enough? Get a refund. Don't be too British about it, just send the dvds back and know you only wasted the postage.

If you want to know more about what it entails let me know and I'll tell you more!