Advice on reversing deconditioning?

[Dieteid]

Hi all, I'm new to the forums. I have highly suspected catatonia with dysautonomia, which is basically just episodes where I'm trapped in my body. Not being able to move led to dysautonomia and deconditioning.

I've already figured out what causes the catatonia to happen and how to prevent episodes of it, so that isn't the issue. Right now, I have to deal with my body being really fragile from years of not moving. (Past 3 years or so I was the least active, I was also catatonic as a teen - so 11 years total- but I did go to school so I did kind of move around for 8 of those years). Since I can move around now I'm super hyped to get fit (in the far future) but also nervous.

Has anyone had experience with reversing the effects of deconditioning? Or advice on it? I have booked a GP but that's all so far, not really sure what else to do. I want to go all the way, like I don't want to stop at a normal fitness level, I want to keep going so when I'm old I am just absolutely ripped and won't go catatonic in a nursing home. Thanks

[MikeO]

What comes to mind is i would talk to your Doctor about starting some Physical Therapy to start you on your way to becoming active again. The therapists will evaluate your physical condition and help you work strengthening deficiates. They will also help with achieving your goals long term.     

[Pistol]

I was thinking of PT as well when I was reading your story. They helped me when I was debilitated, and I still use the exercises when I have to spend longer times bedridden, they help me get back on my feet every time. 

[POTSius]

The recumbent bike could be good if you have dysautonomia, at least to get started. I don't know whether you can do that with your condition or not.

[Dieteid]

On 3/28/2022 at 8:12 PM, MikeO said:

What comes to mind is i would talk to your Doctor about starting some Physical Therapy to start you on your way to becoming active again. The therapists will evaluate your physical condition and help you work strengthening deficiates. They will also help with achieving your goals long term.     

Thank you, the appointment is soon so I find this very helpful  

On 4/2/2022 at 12:35 AM, POTSius said:

The recumbent bike could be good if you have dysautonomia, at least to get started. I don't know whether you can do that with your condition or not.

I've been thinking about that, actually. I think the hardest part would just be getting my hands on one. But I think that could work.

[Dieteid]

On 3/30/2022 at 7:06 AM, Pistol said:

I was thinking of PT as well when I was reading your story. They helped me when I was debilitated, and I still use the exercises when I have to spend longer times bedridden, they help me get back on my feet every time. 

That is a relief to hear, thank you. I think those exercises are important skills to know, its good to hear that they help.

[MikeO]

3 hours ago, Dieteid said:

Thank you, the appointment is soon

Glad to hear you are able to get in for physical therapy. Hang with it as it will be worth the effort in the long run.

[GasconAlex]

The answer to deconditioning is physiotherapy. They should be able and equipped to handle even massive muscle loss.

Luckily (sort of) I was in hospital neuro rehab for 4 months a few years ago so I got to see a lot of the options for people with extreme problems. They started from the base of people who had been in a persistent vegetative state for a long time and had serious neurological issues. They had options to help virtually everyone recover at least some functions. They should be able to help you.

There are pedal only 'bikes' that you can buy pretty cheaply that you can use with your own seat to provide a low cost recumbent bike. The pedals can also be set to a light resistance to help your arms too.

The only problem is that you get out what you put in so even if it is really hard it's generally worth the difficulties in continuing. If you are able to access hydrotherapy that really helped me because even being vertical in the pool the water support means my pots heart rate stays low(ish).

Good luck.

 

[edriscoll]

@Dieteid I'm sorry you have been going through that, it sounds awful.

I saw a Physiatrist when I was coming back from a long period in the hospital.  A Physiatrist is a medical doctor that specializes in physical medicine and rehabilitation.  My Physiatrist was really helpful in working with the Physical therapist on the specific exercises that would benefit my individual condition.

Best wishes, be patient with yourself - rehab takes many, many small steps.  You'll get there.

[MTRJ75]

I've been trying to be more physically active (well within limits though), but still running into a lot of similar issues. 

- internal shakiness once I sit back down again. 

- muscle twitching after being active

- PVCs/ectopics increase when heart rate elevates. 

Anyone else attempting to increase their physical activity levels running into the same issues or know how long they take to resolve? Should I be taking any supplements before or afterward? 

[Yhoun]

My symptoms get worse when I re-start exercise, especially if I push too hard/too quickly. After a few months of inactivity, I started using a rowing machine in late January/early February, and I felt intermittently worse until about April. I was following the CHOP protocol and had to increase my activity more slowly than the even the guidelines said. So if it’s only been a little while since you’ve been increasing your exercise, you might give yourself more time to adjust. (I’ve heard people report that anywhere between 6 weeks and 4 months was the turning point for them.)

I also do better when drinking electrolytes while exercising, rather than (or in addition to) plain water.