Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a debilitating condition that makes day-to-day life difficult for those who have it. Join the group and discuss treatment, symptoms, and lifestyle changes that have helped.

1 Online
1 Online

Muscle Weakness?

Earlier today, I was walking through Walmart and all of the sudden I felt like my legs were going to collapse on me as if they were too tired to keep going. Do you know what I mean? Has anyone felt that before? Later on, my arms felt like that too. Right now, I'm kind of feeling weak. I'm not sure how to describe it. The bad thing is, I have to go walk up a hill to go get my daughter from the bus stop and my husband is unable to leave work. But I don't have to leave for another 50 minutes so I'm hoping the resting I'm doing will help.

Replies

Nina1959
Nina1959

Yes. Definitely. I've had times when my grandkids were babies that I couldn't trust myself to hold them standing up. They just...go... on you, out of the blue? I never did get a real reason for it but it did get better when I got my sugar under control (I'm hypoglycemic) and when I stay hydrated. I know there's not much time but try gettting some fluids in and if you haven't eaten some protein in the last few hours try some cheese or an egg with some OJ for potassium or something quick before you head out.. hope you feel better!
These days it really only happens when I push way too much and it's my first sign of a crash. Do you maybe have a friend who can get your daughter or drive you up the hill?
PilotRock
PilotRock

My husband washes dishes for me a lot. Sometimes I just can't keep a grip. I've broken more dishes over the last 4 years than I have in the rest of my life, combined!
I'm thinking about getting a lightweight folding stool to take with me when I go shopping, just so I can sit down in the checkout line.
Is that crazy???
DarlaC
DarlaC

One of the hardest things for me to do is work in the kitchen! I'm not lazy! I like to cook, BUT, I can't stand up for very long without getting extremely dizzy and then the weakness in the legs kicks in. After that it's all downhill and I must sit.

I know the feeling you are talking about. If I'm out walking down a road, this is less likely to happen to me, than if I'm just standing still. I'm sure it something to do with how our blood pressure drops suddenly when we're not moving, or when we change positions suddenly.

CFS isn't understood by most people, unfortunately, but what actually happens to me with my legs giving out on me is that my legs actually feel as though they can no longer hold me up. I'm not tired, my legs haven't been overworked......they just become exhausted like the rest of me, and I need to sit down and rest. I've had to sit down quickly in stores on their sneaker dislplays! LOL..I don't care. My legs just won't take one more step without getting some rest first!

So, yes......the leg weakness happens to me very often. If I sit for fifteen minutes, I can get up and keep moving!! The thing I need to learn is to not walk too far, or overuse my legs to the point where this happens to me. I'm learnin! Jeepers, you'd think I'd have this down by now!
RichieD
RichieD

I've had it so bad that I've had to reach down and lift my leg up with my hands to get it into my truck so I can close the door. It comes and goes like everything else...sometimes my hands are so weak I can't operate the push switches on the aquarium lights without really trying hard.

Then other times I have no trouble doing work with hand tools like hatchets and hammers. It doesn't seem to make a lot of sense. How can I be strong enough to pick up a heavy bag of fertilizer in the morning, then have trouble with light switches in the evening?
deleted_user
deleted_user

You bet, its a hallmark of this disease and the ME/CFS Canadian consensus criteria describe it this way

"2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability..."
deleted_user
deleted_user

I've had incredible muscle weakness but fortunately I've had a little more warning.

One time I was laying on the couch with my feet and lower legs resting on my boyfriend's lap. He wanted to get up and I could not pick my legs up. I was worried he'd just get up and I'd fall off the couch because I was so weak. After an hour or so I was able to walk. That was just once but very weird.

I've had many times when I stand to leave the room and immediately sit back down because I realize I'm not going to make it. I rest a few minutes and then I can slowly go. Or if I get help I can hold on to someone's arm.
Nina1959
Nina1959

Also wanted to point out this is a possible sign of one of the actually testable issue for CFS under the Social Security disability system, which is postural hypotension, along with orthostatic hypotension, which most folks know about because it's more well known - you know, you are sitting or laying, you stand up and the blood doesn't move fast enough and you get dizzy or weak. But with postural hypotension it happens after you've been up standing or walking for a while (more standing still than walking because walking pumps the blood better)... the tilt table test diagnoses this issue. I had one a while ago that came back positive and it helped me get ssdi. Doc let me have it when I told him I was usually fine if I got up slow but if I say, went into the groc store and stood at the deli counter I'd get weak and dizzy after about 3 minutes. Tests showed a small drop in bp when going upright and a major one 4 minutes later with a pulse change of 25%
deleted_user
deleted_user

Oh yes. It actually happened to me yesterday in walmart, which is a place I HATE but had to pick up a prescription. The legs just went. I leaned against something for a little while, and this particular time it lessened.

There've been times I had to sit down...no way around it. I've even sat down in parking lots, just because I couldn't keep walking without keeling over. Try explaining THAT to someone.

Wouldn't it be lovely if stores and other places would stick benches or chairs here and there throughout the store? We're not the only ones who could use them. I've seen some elderly people look like they're about to keel over.

Oh well...been doing this for 32 years now, so I'm actually kind of used to it. Sometimes I can almost predict when it will happen.

It's not just you...I think it's most of us.
Kim
butterflii410
butterflii410

Thanks everyone! That really helps. This is a first for me. I did make it up the hill and back to get my daughter. I rested a lot in between doing little things.
DarlaC
DarlaC

Happy we could help! There's nothing too weird to post about with this illness. You are NOT alone with this craziness!! xoxo
mystie
mystie

It happens to me all the time where I feel like I'm just going to drop from exhaustion. It is a horrible feeling.
I hope you were able to make the walk okay.