Chronic Fatigue Syndrome

[butterfly_warrior]

Just want to find out if anyone else here has a diagnosis of chronic fatigue syndrome.

I was diagnosed with it about six years ago - the typical course of viral infection that never quite cleared up. For me it was Barmah Forest virus, which is fairly similar to Ross River fever.

For quite a while now I have considered it "managed" rather than "cured", but I find things extremely difficult in early pregnancy and it's almost as though I'm back in the worst times with CFS.

I consider myself fairly fortunate in that the primary effects were mental/cognitive rather than physical. Even though the physical side of things was and is fairly mild, it was still extremely difficult to cope with.

How do others manage? For me it's always been about prioritising what needs to be done. I have fairly strict rest periods during the day, which I absolutely must stick to or I pay for it later. I have managed to stay in full time work (teaching) only because when I get home from work I have a very strict hour or two where I do NOTHING (other than mess about on the computer, especially with Belly Belly). If things need to be done, they happen after that. I also find that I tend to do most of my socialising online - text-based communication is slower and easier and much less draining than speaking to people face to face.

Anyone else want to share how they were diagnosed and how they manage it? What do you take (if anything) to help?

BW

[Curly]

My sister had CFS in her teens - early 1990s. She was very badly affected physically - fainted a lot, missed a lot of school, and the trigger for her CFS seemed to be a bad bout of glandular fever.

My poor mum was beside herself until she saw a feature on a current affairs show about a guy who had cured Johanna Griggs of her CFS. She rang the station and asked to be put in touch with this guy (they had been absolutely inundated with calls). My sister was cured and has been for years, no relapse.

His name is Steve Lockhart and he is based in Lane Cove, NSW (Sydney metro). He has developed his own style of myotherapy - Steve Lockhart Myotherapy - and used it successfully on many CFS sufferers. From what I remember (you will appreciate this was about 15 years ago now and I was a fairly self absorbed teenager at this time ) his theory on CFS was due to the body being out of balance and he found that CFS sufferers often had one leg shorter than the other. I also remember that my sister had to make sure she had to cut back on acidic food, do lots of stretching exercises and yoga and undergo myotherapy treatments (like superduper remedial massage and acupressure) which were fairly painful but ultimately very successful.

I do know for a fact he is still around and trains other people in SLM all around Australia. If you google Steve Lockhart Myotherapy you will find his website and I recommend you give him a call. I have no idea if he still treats CFS sufferers but I bet he would at least have some valuable input for you. Whatever he did, it definitely worked for my sister. I wish you all the very best.

[melbel]

yeah BW I have also had a diagnosis of CFS my trigger appears to be Human parvovirus as I tested positive for antibodies to it though I don't recall actually being sick prior to diagnosis with CFS. It also triggered a form of reactive arthritis in my ankles which flares up from time to time if I get too tired, cold or stressed. I find I plan my days around my good hours. If I start to feel really CFS tired, which is a completely diff feeling to normal tired, I have learnt the hard way not to fight it but to give in and ride with it. If you need to sleep, sleep. CFS tired is one sort of tired you cannot push through that much I have learnt.
Yesterday I had six senior citizens here for a sewing bee making costumes for our local theatre group and after six hours of entertaining, supervising etc which I find quite stressful, I have woken up today feeling like absolute crapola. Hubby and I went down the street to do some errands and basically get out of the house and I had to make him bring me home. I was/am so tired I cannot even breathe right if you get what I mean, I felt like I could sit on one of the benches in the centre closed my eyes and had a snooze right there.
I find that diet wise too much yeast and vitamin B foods can contribute. So no breads or vegemite for me when I get this way, that seems to help as well as piling in the good proteins, salads, no starchy vegies, a bit of choice meat - anything stodgy I try and minimise at these times as I already feel stodgy enough in my body.
With regards to vitamin supplements I also find CoQ10, fish oil, selenium and vitamin E to be helpful but have found that general mixed multi vitamins make very little difference. I find with mixed multis that there are too many vitamins in the supplement that actually counteract each other when taken together and so prefer individual supplements if that makes sense. Like for example iron and calcium inhibit absorption of each other so should be taken a few hours apart. For this reason I have started researching more individual vitamins and their benefits and tailoring a regime just for me.
Oh and magnesium if i get any related muscle aches.
One product that is absolutely awesome is SPATONE. It is a liquid colloidal iron supplement that comes from a mineral spa in Wales and has a very high available iron content, great for pregnancy and because it is a colloidal mineral does not cause constipation or tummy upsets...that also seems to help perk me up. You can get it from the chemists in little liquid sachets you chuck in some fruit juice (except orange I think?) and it just makes it tastes a tiny bit metallic but otherwise very palatable.
Hope this gives you some ideas......

[butterfly_warrior]

I know exactly what you mean about pushing through, Melbel. For the last few days I was assuming it was just the usual pregnancy-tired, but then I got a sinus/chest infection on top of things... and still thought it would be a good idea to drive two hours (one way) just to have dinner with a friend! Seriously bad move - today I've done not much more than eat and sleep. Managed to get out for a little bit to have lunch, but had to come home afterwards because I just can't manage anything else today. It's certainly a case of overloading myself, and DH isn't in much better shape!

I take fish oil, and used to take a particular protein supplement, and they are what has got me to the state I'm in today where I can function almost normally. Interesting what you say about the B vitamins - they are in the tablets I'm taking for morning sickness (blackmores), and now I'm wondering whether I should stick to the straight ginger tablets if the vitamin B could be making the fatigue worse. I'm reasonably reluctant to mess with supplements too much at this point in time, so I think it will go back to a state of prioritising what gets done and what doesn't. Housework is pretty much at the bottom of the list!

BW