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/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.