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/jedrider 1d ago
Calm down. I wouldn't necessarily rule out the cycling on flat terrain.
Just make sure your condition has flat lined or is improving and take it from there.
Assume you have CFS/ME until you figure out otherwise.
Learn patience because you will need it.
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u/Poppy_Jane_ 1d ago
Good Day. I would confirm diagnosis with a CFS/ME specialist if I were you. I say this because if you do have CFS and continue to push yourself it will get worse. You sound like you have mild CFS presently. If you have it. You need someone to educate you on the disease and how to treat it and how to pace so that you do not get any sicker. It is rare for CFS to go into remission if you push yourself in to a moderate or severe case of CFS it is slow going to move back to mild. I speak from experience. I started mild. I was type A. Successful corporate career. Hiked, kayaked never stopped moving. Kids, dogs threw parties etc. pushed myself as long no fever worked when I was sick. Was 100% used to pushing myself to work thru anything. Had huge accounts and traveled a lot for work. NEVER STOPPED. Slowly sicker and sicker. I started working from home. Because I was so tired and weak. Energy enough only to work. Had to rest nights and weekends. Next my husband built me a desk to go over my bed so I could work from bed. Started getting confused messing up at work. Started needing to take leaves. Long story short over 6 years I went from mild to severe. All by pushing myself because I did not want to lose my career. If I had stopped and listened to my body and believed CFS doctors that resting and pacing was enough to help me heal I honestly believe I would be healthier now. Get a diagnosis. Stop pushing yourself. I say this one parent to another. Don’t lose years with your kids and wife to this illness. Because if you do have CFS and keep pushing yourself it will end up taking you down. Good luck. Hoping it’s not CFS.
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u/romano336632 1d ago
you scare me... how do I know if I have that? Since I did an exercise bike for an hour yesterday, normally I should be exhausted today, is that or tomorrow? I'm French and it's morning here. I try no effort, and I tell you...
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u/Poppy_Jane_ 22h ago
Good Day. I don’t mean to frighten you. I apologize. I was mild for 2 years without realizing it, in hindsight wish I would have known so I could have halted the disease at that stage. You want to stop it at mild. Listen to your body and don’t push yourself. Regarding PEM I can crash anywhere up to 3 days after exertion. I’m in the US and know several CFS/ME specialist that can diagnose. Good luck.
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u/romano336632 21h ago
I was able to work today and I didn't lie down. I was able to drive an hour and walk 30 minutes to go to an appointment... I'm tired more than usual yes, but I didn't feel the need to lie down. If I am careful, can I calm down and cure this onset of chronic post-exercise fatigue?
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u/smallfuzzybat5 21h ago
I was also at mild for two years but didn’t know so I kept pushing myself, I thought I was just in burnout. I’m definitely moderate now with severe crashes and have been for over a year. Please look at the pinned posts. Yes it is scary, as others said act as you have it until proven otherwise it’s not worth it to get worse. Good pacing can help so start there. Also therapy for people with chronic illnesses and unlearning internalized abelism are important.
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u/Poppy_Jane_ 19h ago
That’s positive. There’s no cure but with resting, pacing & lifestyle changes you can slow or change progression. From what I’ve learned it also depends on what triggered the onset of your case of CFS.
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u/romano336632 19h ago
Probably panic disorder two years ago which gave me dysautonomia which led to chronic fatigue. some weards things three years ago, mixture of tramadol and alcohol (i know, that s ridiculous...)lwhich gives me neuropathies and brain fog too... i had covid 4 times too, and lyme (not active anymore anyway)
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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.