Can You Test For CSS – Central Sensitivity Syndrome?

a lab icon productsIn the Healing Plan (HP) and on a previous post, I have discussed the fact that many of us with multiple sensitivity, chronic fatigue, fibromyalgia and chronic pain are probably suffering from some form of Central Sensitivity Syndrome illness. 

So, of course, I started trying to work out if we could get any clues. What could we test to see if we were too-turned up? Here’s a bit from the HP that might help – there’s more in the Plan:

What we’re looking for here are clues about what the sympathetic nervous system is up to. Is the dial turned up?

We can start by checking for neurotransmitter patterns – is the glutamate high and the serotonin, dopamine and/or noradrenaline low? Are you over-stimulated with excitatory neurotransmitters and yet don’t have enough of the inhibitory ones to offset it?  

Some researchers have suggested looking at the catecholamines  – that’s dopamine, adrenaline (epinephrine) and noradrenaline (norepinephrine) – and others say, if on an organic acids test Vanilmandelate and Homovanillate are high, the person is likely having a heightened sympathetic nervous response and the dial is up, especially if the serotonin marker 5-HIAA is low.

Happily, I have persuaded one of the labs to list the dried urine ZRT NeuroAdvanced test, which includes all of these markers including the VMA, HVA and 5-HIAA below so I reckon this could be termed our CSS test, or as close as we can get to one currently (I am taking a bow…!).

Looking at the adrenals can help too. Seeing cortisol levels on a DUTCH test might be useful. You want a clear picture whether metabolised cortisol is high or low.

In general, these are the two patterns to look for – and to get this you would need the ZRT NeuroAdvanced test and a DUTCH Adrenal Advanced preferably.

I am not an expert by any means and I am feeling my way a bit here, but this is how I might interpret the tests in terms of confirming CSS and relevant treatment; I hope it gives you some clues as to what form of treatment might be best for you. There’s a lot more detail in the Healing Plan in terms of lowering Substance P and things to watch out for in treatment:

  • If adrenaline, noradrenaline and/or dopamine are high and/or HVA and VMA are high with 5-HIAA low and metabolised cortisol is high – that is an acute stress CSS picture to me and this person definitely needs calming down before the body becomes tired out by it all. I would use the Lowering Cortisol advice and protocols in the Adrenal Plan (TGF version preferably) and the amygdala-calming techniques in the Healing Plan.
  • If adrenaline, noradrenaline and/or dopamine are high and/or HVA and VMA are high with 5-HIAA low and metabolised cortisol is low – this person likely has CSS and needs calming down sort of therapy like the Healing Plan. This is the pattern most often seen in PTSD. These people are hyper, anxious and reactive internally, but shattered.
  • If adrenaline/noradrenaline/dopamine are low and cortisol is low, the person is flat, fatigued and needs adrenal boosting as this is more an adrenal fatigue type picture. Use the Cortisol Boosting advice and protocol in the Adrenal Plan.

Pain – Physical, Emotional or Both?

Here’s a blog post I’ve written on the new Mind-Body medicine blog, but I will share them here too if I think they might be useful for you. I must work on a way of collating them all together!

As I type, I am in the middle of my first ever bout of TMJ pain. Not. Very. Nice. And that is a gross understatement, I can tell you. In fact, I say it is my first bout, but I am actually starting to wonder if much of the mouth pain I have had over the past few years has been TMJ stuff all along.

TM-what?

TMJ stands for temporo-mandibular joint. It’s the jaw hinge that allows your lower jaw to open and close. Sometimes, it can become inflamed, as with any joint, or more likely stress or some form of reaction causes inflammation and/or tightening of the muscles that keep the TMJ in place. Those are the masseter, pterygoid and the temporalis muscles. Here is a pic for you:

Image result for TMJ

It is usually the muscles that spasm and pull the joint out of place and you get clicking jaws as a first sign. I’m not going to wax lyrical about TMJ problems, don’t worry. Just know that many people suffer with it and it can be excruciatingly painful!

Anyway, I thought it might be worth sharing my (ongoing) story with you as it is a good illustration of why we need to always look at health from both physiological and mind-body medicine perspectives to pick up all the clues.

Physiological

We know that TMJ problems occur mostly in people who clench their teeth or grind them at night. We know stress usually causes a flare-up in TMJ sufferers and I suspect sensitivity reactions does the same thing if that’s a weak spot for you. We can see what happens – the muscles tighten, the joints inflame – and you get pain shooting all over the jaw, head, ear and mouth or in a localised place. Now I know why my mouth pain moves about all the time, sometimes from hour to hour. Not always, but often.

So, off I went in my usual investigative manner. I suffer from mouth infections constantly and one had been present for a good few weeks by the time the TMJ pain started. The TMJ pain started in my ear. Ergo: mouth infection has caused an ear infection.

Off I trotted to the docs – a BIG thing for me to do and it was because you don’t mess about with ear pain after 4-5 days of not resolving it. I duly asked them to check if I had an ear infection and asked for some antibiotics I knew were TGF safe. Nope. No ear infection. Diagnosed TMJ inflammation instead. I assume the recent stress of the Minnie incident (my cat was very poorly for those of you not following the minutiae of my life on the Facebook groups ;)) combined with an infection in my gums is what triggered it physiologically.

I was given a steroid ear spray to lower inflammation.

Up until that point, the pain had been copable. Nasty, draining, but copable. One puff of the ear spray and half an hour later I was in agony. Pain got 10 x worse. On Maundy Thursday night so right when everything closed down for Easter! Ear spray had acetic acid in it which, in my pain stupor, I had missed. Acetic acid comes from corn – and at least this has shown me that I am still NCGS – and therefore grain-sensitive. I was secretly hoping the grains had got better along with the other load of food sensitivities – even though I knew as a true gluten illness, this is not likely. I’m only human and I too live in hope.

I shan’t go into the next 48 hours – my usual corn reaction time – let’s just spare you that.

Anyway, I was ice-packing, hot-water-bottling, massaging, trigger point releasing, applying oils, anti-inflammatories, taking ibuprofen and soluble steroids like sweeties, eating soft foods only, not talking (P was very pleased with that one..) and it was just about copable. I call it panicy-pain and I know many of you know what I mean. I wish you didn’t.

It wasn’t shifting. So, I had to think again.

Mind-body medicine

I did my usual process as described in the Healing Plan, and began by looking at what messages the body may be trying to tell me. I’d been working on the ear messages – ‘what wasn’t I hearing?’ etc for a few days but no wonder I wasn’t getting anywhere because it was jaw pain causing the ear pain. Doh.

I looked up jaw pain. Said to be related to anger. That fitted in very closely with some work Julie and I had been doing just before it started. Bingo!

I duly set off to beg Julie to help me release the pain and was WHEEing on it like mad.

Cutting a long story short, it was something Julie said: did I hate or have any strong feelings about a particular part of my body? No, I said. Then, I thought about it and realised I had hated my jaw area for most of my life and had caused it much pain. I won’t bore you by going into why. I had basically hated the very part of my body that was now hurting me, no doubt because I had caused that area pain repeatedly over many years. Oh. Bugger.

We are now doing lot of work to apologise to the body and to release that anger of me to my jaw and it back to me. Early days, but it is too coincidental not to be a part of it.

In fact, Julie has now done a new home hypno audio specifically about this very thing and has explained a bit about it for me:

Learn to Love And Accept Your Physical Body

Let’s suppose you have pain in a particular part of your body. Why is it there? What has caused it and what is it trying to tell you? Yes, I know this sounds potty, but your body can and does try to talk to you through pain, to share with you and to give you clues so that you can sort it out!

Before you can ‘learn to love and accept your physical body,’ you first need to make friends. You need to listen, open a dialogue, communicate, and be prepared for your body to tell you what’s going on. And be prepared for your body to have a bit of a moan at you! (Let’s be fair, if I was picked on, criticised and told off all the time, I wouldn’t be best pleased either! I might sulk, turn away, not want to talk to you, so be patient.) You will probably find, if you’re really honest with yourself, that you moan at your body a lot – damned migraine, again! Gut’s killing me, again! Argh! Etc, etc….

You may have been at war with your body for some time, hating it. Guess what? It hates you back! So, to turn this around, we need to call a truce, end the war, make peace, and build a new relationship based on mutual trust and respect.  Think about a real war, one between two countries… you don’t just end the war and then be best buddies overnight… there is mutual mistrust, and that takes time to heal and rebuild. You need to have peace talks to build that trust. So how do you do this?

The first thing you can do is to begin the process of ‘hearing’ your body.

Step 1; do a body scan. Stand in front of a full length mirror and examine yourself. Every single bit; bit by bit. Start at your head – examine your face, your hair, your neck and work your way down to your toes. As you are travelling down the body, ask yourself, “Do I have a good relationship with this bit of me? Do I accept it, care for it and support it, or do I hate it?” 

Don’t get me wrong – we all have bits of a our bodies we would prefer to be different (bigger bust, tighter bum, straighter nose, etc – but I’m not talking about these minor things. I’m talking about the ‘REALLY don’t like’ bits!). If you get any of these, or any ‘hates’, you have a problem. This is good! This problem highlights an issue, and now that you are aware of it, you can begin to heal it. You start accepting that part of you, you release the negativity around it, and you begin to make friends with it in a loving, supportive way.

Step 2 is to focus on that area which is in pain, and ask yourself, is there any memory of trauma, drama, shock or anger in this area. If there is, release it. Step 3 is to pour lots of love and support into that part of you that was hurting physically, into the cellular structure. Gradually, you will find that your body starts to work with you, your pain subsides, the attacks of physical pain less frequent and shorter, and bit by bit, you come into freedom from pain and suffering, and into wellbeing and health.

I am listening to this audio daily, WHEEing on it, meditating to calm the reactivity and pain down, as well as doing all the meds, massage and exercises normally given for TMJ problems.

A true blend of physiological and mind-body investigation and medicine, and I share this story to help illustrate how that works in day to day life. I hope it helps – wish me luck. I am looking forward very much to resolving this mouth problem once and for all.

Meantime, if you need some help, book in for a free chat with Julie to see if she can help. If you’d rather get started with DIY for now, there are several audios that fit together as a sort of package to help with this chronic pain side of things:

First of all need to make friends with yourself. Julie recommends listening to  Learning to Love Yourself, then Learning to Love Your Physical Body.

After these two, move on to My Body Can Heal – Part 1My Body Can Heal – Part 2

I’ve listened to (am listening to…) all of them and they are fab – as always.

OK, hope that helps. Pain-free – yes please. Workin’ on it… 🙂