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Getting out of bedridden crash/ Leeds inpatient ?

Messages
8
Hi hope I am posting correct place. My Daughter is currently bedridden she has lost lots of muscle in only two months (her latest biggest crash) and it seems to deteriorate daily which concerns me she’s in more pain. Physio wanted to work with her but because she’s still in crash mode she can’t do anything. Doctor has her only on paracetomol and wants to send her to Leeds inpatient facility not sure it will help whilst she’s like this. Any tips or advice on helping her to improve and get out of this bedridden crash state is appreciated. I’ve never seen her like this before and want to help and not make crash worse by pushing if her body can’t do anything. At this point I think she will have to learn how to walk again fully we’re as before latest crash she could potter a bit and just needed wheelchair outside for appointments. She is also dealing with anxiety and ptsd after suffering years of neglect and mistreatment on nhs.
 

AdamS

Senior Member
Messages
339
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!
 

dreamydays

Senior Member
Messages
182
Location
United Kingdom
Thats really excellent advice AdamS. I have posted threads on my trials and experiences of trying to improve from bedbound to housebound, unfortunately you will see that with this disease there are no easy answers and I completely sympathise with you. I have been in hospital in similar situations a few times, unfortunately 90% of the staff have no idea about ME. I can see that changing now with Post Covid Fatigue, unfortunately some of them will get ME and we can only hope that they get diagnosed with ME and so the NHS have more lived experience of this condition. Please PM me as I would love to be able to help or just give you some support. I would urge you to get the NHS or Social Services to get her a hospital bed at home and let her recover there. In terms of muscle loss, I have lost a lot of muscle but the limiting factor is the ME. On good days my muscles are plenty strong enough and on bad days they are weak. The NHS will put most of this down to her losing muscle mass but unless she is completely wasting away then she will have enough strength. Protein bars, BCAA and creatine may be helpful in terms of not losing further muscle mass but this is really a bit of a side show as when I am producing more energy I am still physically much stronger than you would expect. Please PM me. I am only well enough to reply on some days. Don't lose hope, one day we will find effective treatments and she will be back again. On good day my personality comes back and I am myself again to an extent, this is why I believe there will be a cure one day as its like a switch! Maybe we will even meet one day and look back on this and see how far we have come.
 

Anchoress

Senior Member
Messages
1,063
In bad times I dread getting totally immobile so I make sure to walk even to the bathroom or the door every hour. It is enough to stop the total immobility I once endured. Very hard at times like just now.
 
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