I’ve been fully bedbound since September 2022 as a result of severe malnourishment from my gastroparesis. Two months ago I had surgery for it and since then I’ve been able to eat orally again, so I’ve been putting back on the weight that I’d lost and subsequently have more energy. I haven’t needed to use my NJ tube lately which means that I’m not hooked up to a feeding pump all day long, so I’ve regained some mobility — I bought a stool with wheels which I can move about in my flat with, and it’s been great. I’ve been trying to get back up on my feet by walking back and forth in my bedroom, but I overdid it and it made me both crash a bit and very sore in my calves and hamstrings. My balance is off but decent (all things considered) if I walk slowly. My main issue is that my legs are very stiff — when I’m standing up, my knees are bent and my hips are tilted back. Straightening myself by pushing my hips forward and my knees back stretches my calves, hamstrings, the joints at the back of my knees as well as my Achilles tendon very deeply. I don’t know if this problem stems from either my muscles or my tendons being atrophied or both, but are there any gentle exercises that I can do to loosen and/or strengthen them without crashing? I should clarify that my goal is not to walk in my flat again (this was fatiguing even before I became bedbound) — my legs turn purple as soon as I stand up or even sit on my stool and holding a vertical position for 2-3 minutes makes me dangerously lightheaded —. I would just like to be able to stand up straight and walk a few steps when needs must.
I am not an expert at all but I was recommended isometric excercises for my son. I can’t access the specific ones from the device I am on at the moment but a google seearch will bring up a variety of them to have a look at in various forms. This article came up in the search I just did. https://www.igliving.com/magazine/articles/IGL_2017-08_AR_Isometrics-for-the-Mobility-Impaired.pdf
It's good to hear you are able to eat again. If it's feasible for you, a home visit from a physiotherapist may help, as they will be able to assess your specific needs and recommend exercises/movements to help. If I were trying to deal with this on my own I think I would concentrate on lying down movements to try to maintain range of motion for each joint, and isometric exercises to try to maintain some muscle function. And I would do it in short spells with lots of rests. I have no idea whether this would help, but it seems better than nothing. It's so hard balancing trying to keep some function of muscles and joints while avoiding OI and PEM.
Yes, this is a problem that physiotherapists do understand and are very familiar with dealing with. It occurs in people on ITU for long periods. The film clip of J T-B suggests that she had the same problem when trying to stand again. There is likely to be shortening in the whole musculotendinous unit, not so much the tendon itself but more the fibrous tissue around the muscle. Loosening takes a long time I think but can produce benefits. Isometric exercise would not help the tightness. If anything it may be useful to have passive stretches done for you or to get into positions of passive stretch or very gentle slow active stretching. It isn't a matter of strengthening particularly, although that would help balance and control. I would definitely advise getting physio to show you the standard methods.
Thank you all for your advice. I am wary to engage with a physiotherapist but I know an “adapted physical activity” practician (this is an official / regulated discipline in France, nothing to do with chiropractics) who is very knowledgeable about long Covid and ME/CFS, so I will try to reach out them.
Apologies it may take us a bit longer than usual to respond, we have a house move, surgery and a family bereavement going on between us! We will reply as soon as we can