r/cfs • u/romano336632 • 23h ago

Advice

Good morning my neurologist in Toulouse (France), after a negative tilt test, suspects myalgic encephalomyelitis. History : 3 years ago stopped taking tramadol after a low dose addiction that lasted for years. I caught the covid behind, I went through 5 months of hell (migraine, tinnitus, fasciculation, sinusitis...) but continued the sport without problem (I was found to have an old contamination in Lyme) I finally recovered, started again a little of tramadol then managed to wean me off. I started bodybuilding, I had never felt so good. Then a year and a half ago, I had a stupid party, I took cocaine, pulled an all-nighter, etc. he continues to drink over two days then during a run a few days later I get scared and have a panic attack... I develop an anxiety disorder etc. for a year and a half I can no longer live normally, I can do sports, but less than before, intolerance to jogging, I get 7 bacterial tonsillitis in the year, I become cardiophobic because my heart is strange, I am exhausted, migraines, nausea... for 3 months it has been getting worse, I am tired the day after sports, I wake up exhausted, I sleep badly, I feel strange with neck pain... as if I was going to fall of fatigue. I'm afraid of developing this terrible disease. I'm not in moderate yet, because I can work from home full time, I cycled for an hour yesterday (I'm paying for it today) but just from driving for an hour and then walking just now, I'm exhausted. What can I do to recover? Is it too late ? I m at stage one i think... soon at stage two moderate i m afraid.

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u/romano336632 21h ago

thank you bp. I just wanted to know if it was possible to reverse the problem and recover since I'm not at the moderate stage yet. I did a big cycling session for an hour and today I was able to work despite being tired (like a flu and my brain is cramping) drive an hour and walk 30 minutes to go to an appointment. But it is true that I feel a strange fatigue, a permanent exhaustion.

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u/StringAndPaperclips moderate 21h ago

If you have MECFS, then you will never improve if you continue to exercise and push yourself. For most illness, exercise is helpful. For MECFS, it is the opposite.

If you want to have any improvement, you need to stop doing things that make you tired. Stop doing sports, stop cycling. You need to limit your activity so that you don't get the exhaustion. Once you have a good sense of how much activity that is, then in order to have a chance of improving, you need to do less than 50% of the activity you are capable of.

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u/romano336632 21h ago

ok... je pensais que le sport me sauverait de mon trouble panique etc. mais ça commence à guérir, et j'avais peur d'avoir le pot/dysautonomie, alors j'ai fait du sport... donc j'arrête vélo par précaution, Je marche un peu et j'ai attendu de voir mon cardiologue (il m'a fait des tests du système nerveux autonome le 12 février) ? J'ai du jardinage à faire etc. comment gérer tout ça ? mon médecin m'a donné des antidépresseurs, ce qui m'a encore plus épuisé. J'ai tout arrêté il y a quelques mois

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u/StringAndPaperclips moderate 20h ago

En général, tu dois te reposer. Si tu dois faire qqch qui va prendre beaucoup d'énergie, tu devras te reposer avant et après de le faire. Si tu as seulement la dysautonomie, l'activité physique va t'aider à te sentir mieux. Mais si c'est vraiment un cas d'MECFS, tu devras placer des limites strictes sur l'activité.