CFS tips

From a conversation I had with an acquaintance who has recently been diagnosed with CFS,. He asked for some tips, and I gave him a brain dump ...

I'm not able to work at the moment. I was gradually going downhill while I was at TIA in 2016. When my contract ended I kind of collapsed over the line and didn't bounce back like I expected. So I've been largely stuck at home doing my best to manage it. I've seem to have successfully stopped the backsliding, turned the ship around (it;s a bloody big one!) and seem to be headed in the right direction now. But I don't do much productive, and certainly can't be relied on. I'd say I'm 30% on the CFIDS scale:
http://www.cfidsselfhelp.org/cfs-fibromyalgia-rating-scale

 

I first got sick 10 years ago, and this is my first major relapse in that time. Until then, I was gradually getting better and could maintain a 50% workload. By the end of 2015 I was even doing some bushwalking and living a fairly full ife. But then we bought a house and I started working 3 days a week and I gradually dug the hole deeper. I always thought relapsing would be the worst thing that could happen, but it's much easier the second time around - my wife and I have learnt a lot!

 

Sounds like you've done a fair bit of research and learning yourself, so im not sure how much detail to go into. Maybe I'll just outline the things that I have found most useful and we can delve into things more deeply if you're interested.

DIAGNOSIS: You've probably been through this already, but it's worth making sure you've excluded all other possibilities. Depending on your doctor this may not have been done very thoroughly. I quite like the IACFS/ME Primer which includes the Canadian Consensus Criteria and a good guide to treatment options: http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

 

PACING is by far the most important mainstay of managing CFS. The principle is simple enough but it's bloody hard to do well. The biggest challenge is working out what your energy envelope is, and whether or not you've gone past it - you can't rely on your body to tell you when that is - once you're tired, it's WAY too late.

Using a heart rate monitor has made my pacing massively more effective. I can now put an objective number on my envelope (in terms of the number of minutes I spend above 100bpm in a day). I have also been able to model how my HR effects my fatigue. So if I overdo it today, then I will start feeling it in 3 days' time, with the worst on days 4 and 5. This is nothing short of a revelation! For years I knew I had at least a day's lag between exertion and payback, but it wasn't until I started collecting detailed HR and symptom data that I could tease out the full picture.

So now I wear my HR monitor religiously, and it vibrates whenever I hit 100bpm (which doesn't take much), so I know I need to ease back and take a break. I rarely crash hard anymore, which I think is key to gradually getting out of the CFS hole.

 

When I'm managing my pacing well, my symptoms are minimal - I actually feel fairly normal. The trick is to no then overdo it! The HRM is a constant (unremitting, infuriating) reminder of my actual limits. Which means I probably do less than I would without it, but I am much more stable and I think ultimately happier and healthier.

 

A side note to the heart rate stuff is to explore if you have some form of orthostatic intolerance. This is a common co-morbidity with CFS and basically means you have trouble standing for periods. I have borderline POTS, which means my HR is much higher while standing than is normal. This makes it harder to stay within my HR limits. Orthostatic intolerance isn't very well understood but is probably to do with low blood volume and a screwy autonomic nervous system. There are ways you can treat it (at least partially). You can self test for POTS doing the standing lean test: https://www.healthrising.org/forums/resources/a-simple-test-for-orthostatic-intolerance-in-chronic-fatigue-syndrome-and-fibromyalgia-the-nasa-way.388/

 

SLEEP is super important, and often screwed up in CFS. Being 'tired but wired' can make it hard to get to sleep, and it's common to wake up raring to go at 4am. Valarian and melatonin are good sleep aids, but they don't help with the 4am problem. I saw a sleep specialist and he put me on a low dose of mirtazapine which has helped my sleep heaps. It also is an anti-anxiety drug and has reduced my POTS a bit. CFS doctors seem to use sleep meds fairly liberally.

 

Thankfully I haven't had much in the way of PAIN, so can't advise. I get achy legs and sometimes a killer tight neck but nothing nasty like fibromyalgia.

I also haven't had major issues with BRAIN FOG, so I can mostly read, write & think without too much trouble. But I think I am lucky here. I do get mood swings though, and was quite depressed/anxious for the first few years. Effective pacing and a low carb diet keep this under control.

 

DIET has a big effect for many with CFS, though there is a lot of variety as to what works for different people. I'm super-sensitive to sugars and carbohydrates - they make me anxious and irritable and give me burning abdominal pain. My current diet is sugar, fruit, potato, grain and legume-free. So I eat a lot of vegies, protein and fat. Dark chocolate is my treat. Low-ish carb seems to work for a lot of CFSers, so it's worth a try. Other diets to consider are: 

* low FODMAP (if you have IBS) 

* low allergy diet (from RPAH)

* ketogenic diet

* Autoimmune Protocol (AIP) - I plan to try this one day as there is mounting evidence for autoimmune (I have psoriasis too) and gut conditions, but it is pretty extreme.

 

NEUROLOGICAL: It could be worth getting some counselling to help deal with the trauma of chronic illness. I meditate daily to try and keep my sympathetic nervous system under control. When I first got sick I did the Gupta Amygdala Retraining Programme, which is semi-woo woo, but it was the first time I encountered a practitioner who totally understood the condition, and it definitely helped me break out of my obsessive sickness mindset, which took a layer off the top of the illness (but didn't get to the underlying problem.)

 

SUPPLEMENTS: I take a lot of supplements, though their value is questionable. I did a lit review a while back and identified all the ones that had some evidence. From memory they were: CoQ10, NADH, magnesium, acetyl-l-carnitine, n-acetyl cysteine. Other supps worth trying are zinc (really helped me with getting viruses all the time), D-Ribose, vitamin D and the B vitamins. I recommended trying things one at a time and keeping good record of your symptoms so you can identify which you tolerate and if they help or not. I can't take CoQ10, NADH or B vitamins - they all make me wired.

 

After this, you're getting into less certain territory. But that's the reality of this illness - not a lot of research or good evidence to work with. So treat yourself as a n=1 experiment and see what works for you. Things worth looking into are: 

* gut health/dysbiosis

* anti-virals (Valcyte etc) 

* low-dose naltrexone 

* Chronic Inflammatory Response Syndrome (aka toxic mould. Possibly dubious, but there may be something to it) 

* Lyme disease (if it fits) 

 

But in my view all of these things are hopes, something to pursue but not count on. Don't waste your life trying to find a cure - allocate some time to it but don't obsess over it. Focus on what you know works, manage yourself well and try to live the best life you can within those constraints. It's a shit of an illness but you can learn to control it.

EXERCISE: sounds contradictory, especially with all the rage about the PACE trial and CBT/GET, but there's place for it. The key is to go very very slowly, and to stay within your heart rate boundaries. I've been seeing an exercise physiologist who has a lot of experience with CFS. I am now doing free weights for upper and lower body - I do exercises that isolate one muscle at a time (to minimise stress) and which are prone or sitting (to minimise OI), lots of rest in between. I particularly enjoy the upper body weights and get a good feeling from it, as well as a little muscle tone My next step is to start doing more structured walking - short intervals with decent rests, but that is much more challenging HR-wise.

STRESS minimisation is key. Stress of all sorts: physical, mental, emotional. Sometimes just going to the doctor can get my heart racing all day, which can lead to a crash.  Having a solid routine is really helpful, and the less responsibilities the better (e.g. I occasionally cook dinner, but my wife never depends on me to cook, so there's no drama if I'm not up to it and I'm not tempted to push myself). When I've overdone it I can find it really hard to make decisions and it really stresses me out. We've developed a simple flowchart to help: Can I do X? If confidently Yes, then do it. If confidently No, then don't. If unsure, then don't. If I'm not sharp enough to make a decision easily then I need to back off. This takes the uncertainty out of life and is much less stressful.

Finally ... REST. Then rest some more. If in doubt, rest again. With this illness you will struggle to over-rest. Did I mention Rest?

 

BOR-ING!