Have you lost, gained or stayed the same weight?

[eafw]

Iansbergen, if you don't mind sharing, did you regain muscle and strength along with the improvement, and what sort of time scale ?

 

[lansbergen]

Iansbergen, if you don't mind sharing, did you regain muscle and strength along with the improvement, and what sort of time scale ?

It took 20 years of very slow improvement. Arms got strengh back first. Now I can lift using my back and belly muscles

The typical ME gait has almost gone but I have not overdone yet so that might return.

Even lay people can notice the ME gait when it is severe enough. At some point one of my cousins I had not seen in decades said; my neighbour has ME and she walks strange. I asked, like this? She said: yes that's it.

 

[eafw]

It took 20 years of very slow improvement

Quite a while then !

Even lay people can notice the ME gait when it is severe enough.

Yes, and I was suprised when I checked this out recently that so little research has been done on it. Like the alcohol and temperature thing, we all know about it but seems to have passed researchers by for some reason.

 

[Valentijn]

It took 20 years of very slow improvement. Arms got strengh back first. Now I can lift using my back and belly muscles

My abs were the first thing to go ... not that I had visible ab muscles! But even when I was still walking around quite a bit, going to classes and volunteer work, I suddenly couldn't use my abs to sit up or stand up. It was painful and very difficult.

But after about 9 months of antibiotics, my abdominal muscles have made a sudden reappearance. I can use them to go from laying flat on my back to sitting up, and it's pretty easy now with no pain involved.

My muscles seem to be doing better in general, but OI is still hitting very hard during certain times of day, maybe still in response to daily antibiotics.

 

[Iquitos]

It would be interesting to know the gender of the respondents. I've read that men tend to lose weight with this disease, and women tend to gain. Don't recall where or when I read that.

 

[Kyla]

It would be interesting to know the gender of the respondents. I've read that men tend to lose weight with this disease, and women tend to gain. Don't recall where or when I read that.

I don't know if there is any way to add a question to a poll after the fact.

I can tell you I am a woman, and I lost a significant amount of weight.

 

[Marco]

Interesting. I always had a problem with weight gain (not excessive but just 10lbs over fairly lean) when healthy but had got down to a very lean weight due to diet and exercise prior to onset. After onset I stayed at this low weight without any dieting or exercise for 12 years until my symptoms suddenly worsened and I gained 10lbs or so within a few weeks with no change in eating or activity.

Hard to answer the initial question. I didn't lose weight but I didn't gain it as I usually did.

 

[Kyla]

Interesting. I always had a problem with weight gain (not excessive but just 10lbs over fairly lean) when healthy but had got down to a very lean weight due to diet and exercise prior to onset. After onset I stayed at this low weight without any dieting or exercise for 12 years until my symptoms suddenly worsened and I gained 10lbs or so within a few weeks with no change in eating or activity.

Hard to answer the initial question. I didn't lose weight but I didn't gain it as I usually did.

I'm realizing I didn't structure the poll question very well.

Still interesting (to me at least) to see the patterns. Seems like a lot of people fluctuate, and there are definitely some dramatic changes, as well as a correlation with PEM or POTS for some.

For myself, there has been some small fluctuations (maybe related to relapses?) but the overall trend was weight loss, at this point in time down 20 pounds from the steady weight I was at for 10 years prior to illness.
I can definitely see now that none of the poll answers would work for some situations.

 

[MeSci]

Lost a lot at first, mainly because of diarrhoea and vomiting and loss of appetite. Then gained a lot about 5 years later, and finally normalised it about 12 years after that through a change of diet. Started out overweight, now normal .

 

[rosie26]

I've lost over a stone and a half (*) since being poorly - most of it muscle as there wasn't much fat there to begin with. Now very underweight and struggle to maintain it. Would be one of the markers of recovery for myself, if I were to able to build muscle again.

(*) = over 20lbs / ~10 kg

I always felt regaining would be a marker of recovery for me too. Every time I got close to 60kg I would relapse and lose the weight again. It kept happening over and over and became very obvious to me. I can't get back to the pre-illness weight of around 65kg.

I tried many times to tone my muscles during this illness, it's a waste of time and just causes relapses. I always kept in shape all my life, before I fell sick, and I know how to tone my body the way I like. There is something going on in the muscles that won't allow proper toning. This is my experience.