Hi and hopefully finding others in the same situation.

Kosterc4383

Hi, I am Claudia (42) and started using this app a while back in combination with Google fit step logger on advice of my gp. To monitor my weight gain.
I have me/cfs since 2010 and I have long periods that walking from bed to toilet to pc are all I can do. I gained really slow 35kg(77lbs)in the last 13 years.
In September I got really injured and on the radar with my gp. Kcal intake is not my weakness, moving is the issue. The injury healed slowly, while I didn't gain any weight, in March I started going round the garden with the cat. Half mile a day.
Today I celebrated my first 10.000 steps in a day since 2010. Now the gp sent me back here to learn more about lean body mass. Weight loss is not the goal. 300.000 steps a month is. Going from fat to muscle. Atm still not enough energy to do anything else than just put 1 foot in front of the other. Please suggest things. 🙏

springlering62

I’m sorry you’re suffering with this. Is there support groups, online or off? Occupational therapy?

I have no experience except to just throw stuff out there, but I do want to make sure you know you’ve been seen and heard, right? The frustration is real in your voice.

There was a lady here who had great difficulty moving around. She finally decided to make the walk to her mailbox, later added to the first telephone pole, then the next and the next, as she felt capable of doing it. It took her several months but she was eventually able to walk a couple of miles a day. I’ll never forget the third-party glow when she posted that.

Your 10,000 step achievement is nothing to sneeze at. “Just” walking is the perfect exercise for many. Have you got any idea of how many people can’t or won’t even do that? And here you are, accomplishing it.

If I could have gotten my mom off the chair to “just go for a walk”, maybe her limbs wouldn’t have atrophied. Huzzah for anyone who can get up and move, any way they can. That’s no way to go.

My local gym offers rehab classes, and classes for those with limited mobility- chair classes, rehab aquafit classes, stretching classes. Maybe check your local gym, or Y, or community center? My yoga studio and gym both offer Yin style yoga classes, which might be very beneficial for you. Long holds, little movement.

My weight crept up on me likewise- 100+ extra pounds over the years, some due to steroids from a repeating illness, but tbh (for me) mostly simple laziness. I went to the doctor repeatedly complaining of exhaustion, tiredness, etc. she held firm. “Loose weight”. Boy that cheesed me off, lol. But, Losing the extra weight did help. No idea if it would in your situation, so sorry if I speak out of turn or oversimplify.

Seeing my mom go down like that, the constant tiredness, pain, finally just got to me and pissed me off. I decided I could either continue to go down like I was, and hope I didn’t develop such a tolerance for the arthritis meds that they’d stop working in twenty years, or I could treat it all as an enemy I could control. For some reason, thinking of it as Me vs Me changed it around for me.

I wish you much success and improvement.

Hugs to you!

Kosterc4383

Love the reaction, 2 snippets to react on. I was 65kg/143lbs when I went down with the viral infection that caused the Cfs. I was 58kg/129lbs when I was released from hospital. 18 days to get blood values in check so would not constantly pass out. So weight wasn't a thing for me. In December 2020 I started fainting again, few falls, really lost to trust my body. Scared to stand up. Hit my head eventually, needed help from gp to stop the bleed. And he checked me over, heartrate of 220. March 2021 diagnosed with arithmia. Surgery end of July. But now I was on the radar with cardiologist. And he suggested steroids, to increase hunger(?) and decrease inflammation. As the heart was healthy. Just something looped and that was fixed. He could not believe how sedentary I was, that corona didn't change anything in my life. So we did use short term steroids in March of 2023, to get rid of bursitus And will use it to stop bursitis when that start to bother me when moving. Again gaining muscle is the goal, side effect will be weightloss. Doing this in a group setting will trigger the ME/CFS. Social interaction drains me in minutes of all I got in me. The brainfog just shuts me down. I love cuddling a dog on my walks, talk about the weather, but I have to dash in minutes, I can only hope this gets better. Totally used to it. 13 years is a long time.