I feel stuck with a post-viral/SFN-like condition for years – looking for similar experiences
Guys, I’m posting here because I feel like I’ve reached a dead end with a health problem that still feels unresolved and has completely changed my life over the last few years. I would genuinely appreciate if anyone with similar experiences reads this and replies.
Male, former competitive cyclist, trying to understand a chronic condition that gradually developed after a difficult period in late 2022.
In October 2022, I had a severe allergic reaction/shock and COVID around the same time. Later on, there was suspicion of EBV/mononucleosis as well, although we are not 100% sure because I only did the EBV blood tests in June 2023, where antibodies were elevated.
Because I was still competing seriously at the time, I probably made things worse by continuing:
- intense cycling training
- races
- altitude training camps
- overtraining in general
To this day, I still feel unable to function normally physically.
I cannot tolerate exercise normally anymore, and even walking or standing can trigger symptoms:
- standing for some time causes burning in my legs
- walking can also trigger burning sensations
- physical effort feels abnormal compared to before
One of the worst symptoms I had until around 1.5 years ago (which has improved somewhat but I still feel is still there in the background) was extreme general fatigue. I used to wake up in the morning feeling like I had not slept at all during the night. The exhaustion was overwhelming.
Main symptoms:
- General fatigue / unrefreshing sleep
- Burning sensation in legs (especially quadriceps)
- Burning sensation in arms/hands
- Muscles burn very quickly with effort (for example wall sit burns almost immediately)
- Recurrent “sore/bruised” feeling in the same spots in both legs and upper hamstrings
- Muscle tightness/pain without obvious exercise
Eye symptoms:
- Severe dry eye symptoms with pain and very red eyes
- Eye pain improved slightly with treatment, but redness still fluctuates a lot
Important:
- I am not progressively losing strength
- EMG was mostly normal previously
- Autoimmune blood tests (ANA, SSA, SSB etc.) were reportedly negative
- Doctors are currently investigating possible small fiber neuropathy / dysautonomia
Mentally, the fluctuations and uncertainty have been extremely difficult, and I would really appreciate hearing from people with similar experiences.