For all you CFS/ME sufferers!

[swedishblue]

I wasn't aware I had developed CFS until a couple of years following on from my SAH, because I'd put my state of permanent exhaustion down to that. After I'd managed to scrape myself off the floor and return to part-time work, study, raise a teenager, alongside caring for an elderly mother, my health disintegrated. In my struggle to return to normal life and to work, I pushed myself to breaking point...hence I struggle with CFS aside from other aspects to an abi. It's a game of "snake and ladders" regarding energy and I am getting sick of it.!The only ray of hope is when I receive updates/videos/podcasts through the email from a clinic called The Optimum Health in London. I've been following them and I really rate their nutritional/psychological programs and approach to recovery. Always forever hopeful, that one day in the not too distant future, my life will be different. One of the latest video "recovery stories" plopped in the inbox earlier, and I thought I'd share. Take from it what's useful!

theoptimumhealthclinic.com/...

[Matt2584]

Everybodies brain produces CSF (Cerebral Spinal Fluid) with or without a brain injury.

Our brains produce about a pint of CSF each day.

I had/have a brain tumour that was first operated on in 1996 when I was 11.

The tumour was/is located on the brain stem and is blocking the flow of CSF.

The term is called Hydrocephalus or in other words “water on the brain”.

CSF is supposed to circulate the brain before circulating the spinal cord, goes down the spine and exits in your gut.

The plan in 96 was to have 3 operations. 1 to have a shunt installed to drain the CSF.

2 Have the tumour removed and 3 have the shunt taken out as I will no longer need it.

The 1st plan went well but the 2nd is where it all went tits up.

The tumour had to be taken out piece by piece. Half the way through the surgery, the tumour decided to calcify, which means it turned into bone and is continuously blocking the flow of CSF. So I have to have the shunt in at all times now.

And from 96 I have had recurring operations including a 2nd brain tumour/cyst in 1998.

Most of my operations took place from 1996-2010 and since 2010 I have been in good health. I am hoping that will be the end of the operations now but there is still a chance that I could end up in hospital once again :(.

I shall add that when I was a kid my diet was the typical junk food diet. Lots and lots of sugar and fizzy drinks and rarely any fruit and veg.

Then I had all those operations on my head but as I got older I was slowly coming away from all the sugar and started to look and feel better.

I now try to eat as less sugar as I can and eat more fruit and veg and I feel it is really helping.

So when you mentioned about nutrition I was glad to hear that.

There is another member on here, recoveringh. I think she has helped herself with her brain injury through nutrition. Like she once told me, nutrition is everything.

[swedishblue in reply to Matt2584]

Hi Matt, the subject of my post is CFS - chronic fatigue syndrome/ME.

Well done on reducing sugar and increasing your micro-nutrients of veg and fruit. You have come a long way in your recovery. I altered my diet drastically since my abi and feel loads better for it. Yes, RecoveryH is such an asset to this forum and has fantastic insight on how to improve brain function with dietary supplements!

[Matt2584 in reply to swedishblue]

Ah, you were referring you CFS as in Chronic Fatigue Syndrome, I didn’t know of this.

[sealiphone]

I'm unsure how much we can really compare ME & CFS to Cognitive fatigue two different reasons for similar symptoms. Of course a healthy diet is by definition recommended for the whole population.

In fact I've some concern that our adoption of CFS research, is muddying the water and stymying the potential of a more bespoke approach to TBI symptoms.

[moo196]

Yeah, I have the delight of suffering from both cfs and brain illness.... I know that giving up diet coke and anything else with artificial sweeteners was the best thing I have ever done wrt cfs pain.

[swedishblue in reply to moo196]

Hi Moo, that's me as well. Perhaps I undid a better recovery by fighting exhaustion and being in denial of my abi. which has left me with CFS. Putting others before my needs. Now everyone has left (either grown up or dead) I'm left with my struggle trying to manage a "boom and bust" pattern. Always on a journey trying to find the elusive cure. If I'm nicely distracted/occupied the nasty symptoms don't seem so bad. I still stay active, doing my own thing, socialising nicely. Nobody really has a clue about my illness, and this is the way I prefer it, as to give in would send me in to a negative spiral, I'm sure. My motto for living is to be in the game, not too much stress, and keep active.

[sealiphone]

I've been having a look at this and recent research is putting forward a new interpretations of the cause of CFS, interestingly the function of Attention and Executive function is associated with Functional cognitive disorder, however this is not caused by a TBI. CFS appears not to have a association with Attention

I experience fatigue and have problems with Attention which was assessed as abnormal.

Some interesting info: jnnp.bmj.com/content/early/...

However we have a different model that talks about damage to specific area of the brain, and pushing yourself too much seems to be a very bad idea. healthrising.org/blog/2014/...

[swedishblue in reply to sealiphone]

That was good research, thank you so much! I have several areas of damage from the bleed as diagnosed by the neuro-psychologist, I was referred to last year. I was believed by her but I think the gp's are hopeless on understanding brain injuries. Your Second link from the Japanese Study identifies the main areas where I'm affected;

"The first six of these regions (limbic system, basal ganglia, thalamus, orbitofrontal cortex, prefrontal cortex, anterior cingulate cortex)" I will print off copies for the gp's, and another for the DWP in case I need it!

[sealiphone in reply to swedishblue]

Yep I think the Japanese approach is more relevant to TBI, I wouldn't expect a GP to know much about TBI, as it is a specialist area , in fact in my experience Neurologist are clueless as well.

However I think a GP, should at least know what the symptoms are, in my experience they know very little or nothing and obviously this also applies to those doing the medical assessment for ESA & PIP.

[swedishblue]

Some useful and interesting research related to CFS/ME and Neuro-inflammation; healthrising.org/blog/2018/... I've experienced episodes of this when hit hardest by chronic fatigue, which then triggers a cycle of sleep disturbance, chronic head pain and severe fatigue. The article recommends high quantities of flavonoids (many varieties) found in particular foods. RecoveryH recommended juicing fruit and veg. Other great sources of flavonoids are found in grapes, berries, nuts and beans (soya, legumes), dark green and red veg, spices and dark chocolate. Obviously sugar is directly responsible for inflammatory responses so should be eliminated!

[swedishblue]

Just to add, that overall, I believe a more holistic, multi-factorial, concurrent approach needs to be taken to get back to normal health. If that's possible for brain damaged individuals with CFS....jury remains out. But here's a useful outline called the 7 step approach which I've found useful; nikigratrix.com/7-steps-to-...