Where I'm at now: undiagnosed but living like a CFS sufferer

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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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8 Replies

  • Posted

    Hi grailmoth,

    First of all I really want to sympathise with where you are at right now. I had all those symptoms for just over a year and was labelled a psychiatric case because all my tests were normal apart from a few vitamins being off. I completely lost all hope in getting ever getting a diagnosis from doctors and never expected much to come from appointments but don't lose hope because I finally got a diagnosis and the relief that came with it was worth all the fight. Keep pushing through. We know you are not crazy and you aren't crazy having these symptoms and it's the doctors that are ignorant!

    I was like you, I was sure I had CFS but I was scared I wouldn't get believed. I went to one doctor and mentioned it and she said that CFS doesn't exist and that it was a diagnosis for people when they can't find anything wrong. That doctor completely knocked my confidence in asking again but a few months later I decided to print of symptoms from the ME association website and I highlighted all the symptoms I experience and went to see a different doctor. This doctor was fab and she referred me to a specialist ME clinic on the NHS in Leeds UK. The ME appointment came around and I finally got diagnosed not with ME but also POTS, autonomic dysfunction and HEDS. When the doctor told me what these conditions do to my body I knew this doctor had my diagnosis spot on and it was such a relief.

    Please don't give up.

    Keep seeing a doctor until they refer you to a clinic even change surgery if you have to, you deserve answers.

    My symptoms are very similar, there arnt many meditations to help or any that I have found to help - I Get worse with medication but since getting a diagnosis I've been able to accept what I'm dealing with and I know my limitations. Are you from the UK? I also contacted the Iapt service, the run a group therapy for people with chronic illness. Through that I've met other ME sufferers and it's really helped bring around people going through the same things.

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    • Posted

      Thank you so much for your lovely comment! It means a lot to me to know I'm not alone.

      I'm in Australia and the only CFS clinic we have (that I know of) is CFS Discovery

      I did a lot of research into this at one point, and got my hopes up, but then I saw how expensive it was, not to mention the invasive testing procedures you have to go through and a commitment to follow-ups...I just can't do that. *Especially* with the symptoms I have! Ugh.

      I probably have POTS too but I've had it all my life so I don't know if it's related...I often get dizzy to the point of nearly passing part when I stand up. Kinda used to it so I guess it mustn't be that bad - other people probably have it worse. I have the Ehlers Danlos weird bendy hands thing, but none of the other markers I know of, my mother has always been convinced I have it though.

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    • Posted

      It's a shame there is only one clinic. Have you had Ehlers Danlos looked into in more detail? Is it a more recognised condition in Australia?

      It's interesting you say you have hypermobilility because when I saw the CFS specialist she said I have HEDS and said that CFS symptoms and HEDS run along side eachother and said that science can't yet tell us whether they are separate conditions or the same. If you look into EDS you will find that pots, stomach issues, chronic fatigue and many other symptoms are part of it.

      I really hope you manage to get some answers. Sometimes it's just knowing that helps isn't it.

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    • Posted

      That's interesting! I've been told Ehlers Danlos is well recognised in Australia now, although I've also heard the same thing about CFS and I'm not convinced. I really need to find a GP I feel comfortable talking to about all these things!!

      I mentioned Ehlers Danlos to my previous GP and she wrote it off as "that collagen thing...you don't have THAT!" I guess she was expecting to see far more exaggerated symptoms. That kind of attitude seems common, if you're not visibly sick on the outside, you mustn't be sick at all. I'm worried about the same thing happening with CFS.

      Thanks for your encouragement by the way. It's given me hope again.

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  • Posted

    I have many of the same symptoms as well. First they wanted me to believe I was just "depressed" but I'm a very positive person and I knew something else was going on. After they tested me for anything and everything they finally diagnosed me with CFS. Western medicine has been useless. My body is too sensitive to take medications.

    Some things that have worked for me:

    Not sure if this is what you need, but salt can be taken (depending on your blood pressure) by drinking it with a glass of warm water first thing in the morning. I have to drink a glass of water with 1/4 teaspoon himalayan pink salt and freely salt my food just to keep my BP above 90/60. Celtic sea salt is good too. Just don't use regular salt.

    Instead of taking one walk for 10 or 20 minutes, try 1 or 2 short 5 minutes walks and then rest after each walk for at least 10 minutes. 

    Try to never push your body. I know that's almost impossible given that you're still working.

    B12 should be in methylcobomin form, not cyanicobolamin.

    Spend a couple hours before  you go to sleep "unwinding." No computers or tv or anything stimulating. Do tai chi, yoga, take a warm bath with some lavender oil, read a gentle book, etc.

    Meditate every day! There are some WONDERFUL guided meditations on youtube. If you're a beginner the best ones are "progressive muscle" or "autogenic training."

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    • Posted

      Thanks for your reply! What you say about the salt is interesting, I often crave salt and the other day (unwisely) I unintentionally ate an entire bag of crisps to satisfy it...I did feel better afterwards but it wasn't really healthy choice lol! My blood pressure is always normal when I go to the doctor though.

      I've heard that CFS sufferers shouldn't take cyanicobolamin but unfortunately in Australia that's the only form you can get it in, as far as I know. I've heard about people having positive results with taking it even in the cyanide-containing form though.

      Yoga is something I want to get back into as I used to do it quite intensively, but I'm just too tired in the evenings after work sad And whenever I think about doing it on weekends there's always something I'd rather be doing because I'm scared how terrible I might feel afterwards. I guess I just have to take that leap and try it, see what my body can handle.

      I'll look into the meditations you recommended. I have a history of falling asleep while meditating though, or getting close enough to sleep that I feel groggy and sick when I come out of it!

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  • Posted

    I remember how it felt when I was still working. It was awful. I don't envy you. It's just not fair that we push our bodies beyond their limits because we need to be responsible but we only suffer for it.

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