Treatment decisions - LDN, cymbalta, medical leave?
Hi all, I've had long covid since 2023 (reinfections in 2024 and 2026 unfortunately, very bad luck) and am struggling to decide between some different options my doctor gave me after being at a plateau for a long time. I would be super grateful for relevant experience and insights! Sending love to everyone dealing with this.
I'm 27F and work as a teacher, which I'm able to do but I feel at my absolute physical limit most days. My regular symptoms include low BP, bad head rushes and dizziness (diagnosed as orthostatic hypotension but not quite at the criteria for POTS), headaches, tinnitus, diagnosed heart inflammation and arrhythmias, brain fog, chronic post nasal drip and sinus pain, nerve pain in hands and feet, and joint pain.
I also have flare-ups every few months that last a few weeks at a time and prevent me from working. They include intense fatigue, nausea/low appetite, worse brain fog, worse joint/nerve/body pain, flushing and chills, and weirdly, strange-smelling urine lol. There are no triggers that I can detect, and my doctor doesn't think MCAS makes sense but that might be wrong. I take lots of covid precautions and test negative during these episodes, so I'm pretty sure these are not reinfections, but they feel similar and I do work at a school (masked).
After the most recent flareup, my (pretty understanding) doctor diagnosed me with fibromyalgia and suggested cymbalta and PT, and also is supportive of me taking time off. Thus, I'm wondering the following:
- I was offered wellbutrin or cymbalta, and he also agreed to prescribe LDN if I want. He was pushing the first two much harder, but I've had terrible reactions to multiple types of antidepressants before, so I'm very leery of SSNIs/SSRIs. They gave me crazy anhedonia, I slept 12-16 hours/day, completely lost my appetite, and took months to come off it each time. Is it worth trying cymbalta to show that I'm cooperative and will take his advice, or should I start with LDN, which I've heard largely positive things about and have a sense will be more helpful for me?
- I'm also considering taking medical leave, which my doctor would provide documentation for. I have enough leave time for a full month, and I'm tempted to take the full amount, try radical rest, get in good routines, try different medicines and supplements, etc. I would not be able to reduce my schedule, I would just end up having to make up the work on the days I go in. I feel really bad leaving my coteacher in that position and it would be hard going back but I am so tired of living like this and don't want the cycle to go on forever. I could potentially also quit my job entirely and live off savings for up to a few months but that feels much riskier. Is a month enough to improve and go back to my work?
- My doctor also wants me to start physical therapy if I go on leave, specifically aquatic therapy in a pool. This sounds really nice but the only options around me are in indoor pools and I don't want to get reinfected lol. I also do get some PEM, but I see the arguments for gradually testing and increasing my threshold. Are there other forms of PT I could put forward that would be manageable?
- My partner and I recently got married and having kids is a possibility we're open to in the near future. I've seen that a lot of people's LC symptoms improve, often permanently, during/after pregnancy. I imagine it makes more sense to try different medications first, or maybe we should just give it a shot?
- Finally, I have a family member who's very into alternative medicine and is generously willing to help me pay to see an alternative/functional medicine practitioner. I'm open to it but not sure whether to start with my local (very expensive) integrative wellness center, a Chinese medicine practitioner (acupuncture so far hasn't helped), to ask my doctor for a referral to the nearest long covid clinic to me (in a city 3ish hours away), or to use an online LC clinic like RTHM. Did anyone have success working with any of these sorts of providers?
TYIA!!
