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I don't have a diagnosis of CFS yet, but I'm living with the assumption that I have it, because if I don't make that assumption I'll try to go about my daily life like a healthy person, and get sick.
If I exert myself beyond a certain limit (I used to walk a lot just to get around, 20-30 mins - can't anymore), if I don't eat or drink enough or wait too long before eating, or if I get emotionally stressed, or pretty much put any kind of stress on my system, I get
- extreme fatigue to the point of nearly passing out, trying to stay alert & awake either makes me lightheaded and nauseous or jittery like I've had a lot of caffeine
- feeling very cold
- partial numbness or strange feelings of pressure in very specific spots on my face (which I associate with transitioning from wakefulness to sleeping, but it's constant rather than just when I'm falling asleep)
- headache that won't go away until I've slept, sometimes lessens with food or water but returns after a few minutes
- shakiness, especially in my legs
- feeling like my whole body is made of lead or that I'm wading through mud
- gastroparesis which causes nausea (ranging from mild to nearly-vomiting) and burping
I've been chronically ill like this for about 6 months, and over the course of that time I've had:
- numerous blood tests
- numerous ECGs
- 24 hr Holter monitor
- pelvic and abdominal ultrasounds
- 3 different GPs prodding at me, taking my blood pressure, listening to my heart and lungs
- therapy to see if it was "all in my head" (it wasn't)
The outcome of all this?
- I have low iron (which I've known for many years, without it appearing to affect my health), I've been on iron supplements for 6 months with small improvement in my iron levels, and also b12 supplements although I'm not technically b12 deficient
- I have Gilbert's Syndrome (no symptoms, but I was jaundiced as a newborn; doctor told me this syndrome has no effect on my health, but after reading about it I'm not so sure, I wonder if my liver function is abnormal)
- There's absolutely nothing else wrong with me! Apparently!
I've been afraid to bring up the possibility of CFS with my doctor because I worry they won't believe it's a real illness. There is exactly 1 CFS specialist in my country and I can't afford their services, plus I haven't heard good things about them. Since it's untreatable anyway, I'm not sure what the point of the diagnosis would be. The best I can do at the moment is understand my triggers and limitations, and try to work with my body on its own terms.
So I'm trying to:
- exert myself as little as possible. Avoid going up stairs, avoid walking or doing any kind of physical activity for more than a few minutes, allow other people to help me with things (a challenge for me). I've always loved getting places by walking and I don't own a car. But the last time I walked a significant distance, even though I felt great while doing it, I had a terrible flareup afterwards, and it's just not worth it.
- drink lots of water. I love tea but sometimes it feels like it's just putting more toxins into my body, so I mostly drink hot water instead.
- cut down on processed foods; if I'm craving chocolate I'll have a prune instead, and if I need salt I try to have something like cheese on toast instead of potato crisps (but sometimes processed crap is easier to digest which is important with gastroparesis, so it's a balancing act)
- allow myself to do nothing sometimes, sit in the sun, do things that don't require a lot of concentration
- go home from work early or take a day off if I'm struggling, because if I don't let myself have that downtime it's only going to get worse
To manage my gastroparesis, because I haven't yet seen a gastroenterologist to get medication for it (don't worry, I have an appointment), I'm trying to
- eat portions half the size of what I used to eat. It's a struggle sometimes, I just have to force myself! Also, if I'm eating and start to feel even slightly full or less hungry, I have to force myself to stop there and not eat even one more bite.
- avoid fatty foods
- stick to easily digested, white foods when I'm having a "cfs" episode...porridge, bananas, white bread and potatoes are my go-to. For some reason I also find dried fruit very easy to eat, even though it's full of fibre. I've been enjoying prunes, but there are also raw fruit-and-nut bars that I've become quite addicted to because they give me loads of low-GI energy without upsetting my digestion (I can't eat nuts otherwise, they're too fatty)
- combine richer foods like meat or potatoes with high-fibre, high-water foods like salad
- eat a lot of uncrystallised ginger when I'm having an episode. The sugar gives me a little energy boost but more importantly it really helps my digestion when I'm suffering from (mild) gastroparesis, especially when combined with a drink of warm water. I still have meds for nausea that I take when it's really bad, but they're expensive so I have to ration them.
Maybe this will give you some ideas if you're suffering similarly to me...I don't know...I'd love to hear if you have similar symptoms and how you manage them.
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