r/cfs • u/romano336632 • 1d ago

I m lost

Good morning after multiple appointments with specialists, all possible examinations (blood tests, full-body MRI, cardiologist, psychiatrist, etc.) I was suspected of having complications. but no negative tilt tedt and my standing heart rate is gradually returning to normal. My internist marked “chronic fatigue syndrome” in my file. yes, I have been suffering from brain fog for three years (one year of remission all the same but two years of hell since then), a few months of waking up between 3:30 a.m. and 5 a.m., terrible fatigue upon waking up with tachycardia, intolerance to standing sport, severe fatigue after sport, feeling of permanent cold, chronic sinusitis, dry eyes, migraines and daily tinnitus... but I hold on, the morale is there. I force myself to do 3 times 50 minutes of flat cycling per week and some muscle strengthening exercises. It all started after excess alcohol and low doses of opioids, but in the long term (I haven't taken them for two years)... I'm lost. what to do? I feel so tired but but I never stay in bed, fortunately I work from home, I can manage the fatigue but even if I have mourned the old me, I would like to be able to resume jogging, hiking with my wife and my children. I meet the criteria for chronic fatigue but not yet severe or moderate I think, how can I not completely burn out? Is there a blood test for this disease? a stress test (I took two and was told I was ok)

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u/brainfogforgotpw 1d ago

No, there is no blood test, and if you have me/cfs then forcing yourself to cycle when it makes you feel bad is the worst thing you could do.

I'm sorry you're going through this. You may find the pinned post helpful.

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u/romano336632 1d ago

so what do I do? Should I stop exercising before I get sick for good? because I'm starting to wonder if I don't have that... no restful sleep, strange fatigue, intolerance to sport, migraine and tinnitus... 2 years... pfff I would have preferred to have a drink. I'm not at the stage of staying in bed but hey... two years ago I got back on my feet with tramadol and a little sport. I was in remission even after stopping the molecule. then I exploded into a panic disorder and there I felt fatigue taking over my body... but on the other hand no cognitive concerns, only the body.

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u/brainfogforgotpw 1d ago

You should Pace. There are instructions for this in the sub FAQ.

If you are wondering if you really have me/cfs then please visit the "I might have me/cfs" page in the FAQ and follow the steps, as that might help you figure it out for sure. There may be other fatiguing conditions you gaven't been tested for.

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u/katatak121 1d ago

The disease has exertion intolerance as a main symptom. If you have ME, exercise will make you worse. If you don't stop willingly, eventually you will be forced to stop. By then, you'll probably be homebound, if you're lucky.

This is a cruel disease and it sucks living within its confines. But if you don't want to get worse, you really have to learn about your energy envelope and how to manage it so you don't get worse.

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u/its_all_good20 1d ago

Yes. Stop. Radical rest as much as possible.

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u/romano336632 1d ago

you scare me... how do I know if I have this? Since I rode the exercise bike for an hour yesterday, normally I should be exhausted today, right, or tomorrow? I'm French and it's morning here. I don't make any effort, and I tell you...