Hey, i'm an ME/CFS sufferer from Leeds, have had the illness since 2016, been bed/house ridden a few times in those years. This illness is different for everyone and I consider myself a mild case now but here are a few tips I could give you:
- Check your daughter's heart rate when standing, if it goes up by 30+ bpm when compared to her resting heart rate she may have POTS. If so you need to get her to see a cardiologist ASAP and see if she improves on Saline IV. There are many drugs out there that can help POTS sufferers such as Saline, Midodrine, Ivabradine and Beta Blockers (i'm not a doctor though so please speak to an expert).
- As for muscle loss, I also suffered this but found that it did eventually plateau after a few months. The sooner you can get your daughter out of bed and moving a bit the better obviously to prevent further muscle loss.
- From my experience, physio is largely useless for this illness, it is believed that there is something in ME/CFS patient's serum which affects energy metabolism so doing exercise can actually set ME/CFS patients back further. The only form of exercise I have found that I can do is very short intervals of say 30 seconds cycling or running followed by 30 seconds rest for 3-5 sets. Eventually after a number of years I was able to build up to around 10-20 minutes cycling per day but I still crash if I overdo it.
- Anxiety/PTSD - I can completely sympathise with your daughter. I had therapy and HBOT at the MS Therapy Centre in Leeds which helped me with this a little.
- I wouldn't even consider exercise until your daughter is crash free for 3-6 months. Once she has established an adapted routine where she can function at baseline without symptoms, then consider doing a little more but never let the heart rate get too high for too long.
All this aside, the key is to try and slowly get your daughter to recover back to baseline. If she is bedridden and experiencing PEM, the chances are that this crash will last anywhere from 72 hours up to a month. In this period the key is to NOT overexert in any way, physically or mentally, but try to incorporate some movement if possible to get circulation going a bit. It's a fine line between doing too much and too little, listening to her body will be key. I hope this helps in some way and wish your daughter a speedy recovery!
