A slow, tight, painful, exhausting shuffle step limp

[SweetWithSour]

Went to the grocery store this morning. I made it to the frozen food area before having to hobble out to the car and let my husband continue. My mobility has been impaired a lot lately. Muscle weakness, wasting, fatigue and tightness. I shuffle limped along so slowly in the store. I was grateful not a lot of people to move around or have to stop and change directions for. Wow am I tired and sore. I'm also so proud of myself for still going and making it 1/4 of the way through shopping. I need to set low realistic goals for myself at the moment. Keep pushing and moving forward, even if it is a super slow awkward shuffle limp!

Any tips for tight locked up hips, weak glutes tight hamstrings and quads and tight tendons and ligaments in the knee?

 

[JayCS]

made it to the frozen food area before having to hobble out to the car and let my husband

The frozen food area of bigger stores with reduced temperature "kills" me... - was it praps that bit of it all?

I was grateful not a lot of people to move around or have to stop and change directions

Yeah, as I live near my important shops I can go back home if it's fuller.
And go at a time when no one's there, like when it's raining, or in the mid-evening.
More cos I mask and distance, but also when I'm instable and slow.
I welcome it when someone's in the way, cos it reminds me to stop in my tracks and recover until they're past.

I'm also so proud of myself for still going and making it 1/4 of the way through shopping.

I can share that pride for you! Yesterday I saw someone with crutches and bent over go over a calm road at tortoise pace without looking, so any-/everyone would have stopped without ado, would've been a waste of energy to look.
Rather than pity, I was filled with happiness for her and gratefulness that she was managing to get out on her own and back.

I need to set low realistic goals for myself at the moment. Keep pushing and moving forward, even if it is a super slow awkward shuffle limp!

Don't we always...? Caught myself shuffling thru the flat the other day, and wondered why? - I could have walked, as I'm a bit stronger at the moment - But it was to save energy to do other things longer. I've adapted all my movements to keep save "fast energy" and us it for "slow and very slow", but that longer. Or at the moment cos of L D N, I can actually now say my resting time is getting less and less (now around 4h I'd think, maybe 6h), I'm no longer using "very slow" energy, only a bit "slow" and lots "moderate".
However I pride myself in managing and using my energy profile this way, like you, adjusting to my condition/form. It's become fairly intuitive, but sometimes my wife still has to tell me that I'm overdoing it, cos I can't always feel it, and she can see it - sometimes too restrictive tho, she doesn't always read the signs right, but I add my and her impression together and adjust my intention.
Does your husband help in this way, or is he or can he learn/-ing to?

Muscle weakness, wasting, fatigue and tightness.
Any tips for tight locked up hips, weak glutes tight hamstrings and quads and tight tendons and ligaments in the knee?

There are loads of stretches and massage/press points for all these, with or without equipment.... I work on them all the time, identifying which treatment will help a specific issue and rotate them about every hour, as gentle and short as necessary, but regularly. Usually I start by looking for the sorest spot of a certain area and holding, pressing or massaging that with fingers or massager (occasionally tennis ball etc). This may then get a little worse first, so not too long, but later again. If there's no tendency to improvement with this or anyways I then try stretches. As I know most, occasionally still look a certain area up on youtube, I intuitively try several out, till I can feel the area being stretched, and know how to not stretch too much or long. Sometimes I combine stretching and massaging with my massager.
For weak glutes, wall sits for a few seconds should be the right place to start. If that's too difficult and you haven't got a trick or person to help you up again, then praps on a chair, sort of sitting on an air "cushion" for a few seconds, repeatedly. Always keeping under limits, looking for ways to decrease the load if necessary.
Youtube is great not only for ideas for exercises/treatments like this for any type of pain, but also for people who believe they can't do "anything".
Is that any help?

 

[sunkacola]

Any tips for tight locked up hips, weak glutes tight hamstrings and quads and tight tendons and ligaments in the knee?

I definitely recommend that you start exercising those areas with gentle stretches and movements once or twice a day. As many times a day as you can, actually, but maybe only one to three minutes each time. If you can keep those muscles flexible it will help a lot.

 

[SweetWithSour]

stores with reduced temperature "kills" me... - was it praps that bit of it all?

Absolutely the store temperature played a big part I think. I had a dress on without any leggings. This likely caused my legs to get cold and stiffen

I welcome it when someone's in the way, cos it reminds me to stop in my tracks and recover until they're past.

What a great way to think about it! A nice little recovery break!

Rather than pity, I was filled with happiness for her and gratefulness that she was managing to get out on her own and back.

This is beautiful!!! I think because we know how much effort things take, we can really appreciate them. I also think one thing I learned that was a silent trigger is being looked upon with pitty, rather than be celebrated for my strength.

I've adapted all my movements to keep save "fast energy" and us it for "slow and very slow", but that longer.

Yes!!!!!! I explain it that I have a debit account of energy (don't get to know the balance) and everything done has a cost. The cost is also unknown. My goal, to still have a positive balance at the end of the day.

my wife still has to tell me that I'm overdoing it, cos I can't always feel it, and she can see it - sometimes too restrictive tho, she doesn't always read the signs right, but I add my and her impression together and adjust my intention.
Does your husband help in this way, or is he or can he learn/-ing to?

This is fantastic that she has tuned in. My husband can sometimes see it, but his recognition and delivery sucks He is the one that tuned really into my food triggers and helped me navigate that. Energy wise no he tends to watch me push and crash, or just tells me to sit down he'll take care of everything.

Sometimes I combine stretching and massaging with my massager

Genius and I don't know why I've never thought of this!

Is that any help?

Very, thank you! Using the chair is smart! Searching youtube also for options stretches releasing the spasms and ultimate work out to gain strength.

 

[SweetWithSour]

exercising those areas with gentle stretches and movements once or twice a day. As many times a day as you can, actually, but maybe only one to three minutes each time. If you can keep those muscles flexible it will help a lot.

Thank you! Keeping them flexible really will help tremendously. I'll start putting more intention on these areas and ensure to get them moving about and stretched through the day

 

[JayCS]

ultimate work out

Now that unintentionally sounds as if you are aiming for some kind of ironwoman workout!

One of the videos that was a game changer for me was
"How to get up from the floor (after a fall) - MacGyver style!"
I tried all of this and similar videos, studied them, and have used and then developed many own ways of moving with minimal energy - like MacGyver would...

Reframing is gold!

 

[Badger]

Knees: sit on your bed with rolled up socks under one knee, press down for count of five, five times repeat with other knee. Reduce reps depending on discomfort. The tear shaped muscle over the thigh provides most of the knee joints stability according to my physio.

Hamstrings: while standing place something against your hips like a stick. Bend at the hip joint, 'not your spine', keeping the stick tucked in place. Let knees bend as you lower on the exhale. Once you reach gentle limit, hold for five count then return to start position. If too uncomfortable, lay on bed and bring knee to chest allowing knee to bend naturally.

Hips: issues can present as knee pain. Lay on bed, knees together, breathe out, allow knees to fall to one side, hold five, repeat other side. Five sets each side. While standing, feet shoulder width apart, hands on thighs, rotate gently like a hula hoop, breathing in and out slowly.

 

[youngatheart]

@SweetWithSour for your hips and glutes a good stretch to try: sit in a chair place ankle of right/left leg on knee and lean forward. You can also do this lying on your back and bring your knee up to your chest. Standing ( I hold onto the back of a kitchen chair) kick your leg out to the side slowly, and back again, then after a few reps kick leg out behind you a few reps. These are a couple of things I had to do for PT after my hip surgery to stabilize and strengthen.

Best stretch I have found for hamstrings is to lie down, loop a towel (belt or strap) around your foot, grab both ends and slowly pull to lift your leg straight in the air keeping your other leg flat on the ground.

Hope these suggestions help

 

[Debshoe208]

I am familiar with that shuffle step. My husband had it; it’s a symptom of Parkinson’s. But my husband didn’t have Parkinson’s. After tests, he was diagnosed with Hydrocephalus. Please see a doctor ASAP.

 

[JayCS]

that shuffle step.
Please see a doctor ASAP.

Did your husband have it most of the time?
I'd think the difference is not being able to walk otherwise, maybe brainwise?, whilst in our case, at least definitely in mine, it's 'just' to save energy, from lack of it?

 

[SweetWithSour]

I am familiar with that shuffle step. My husband had it; it’s a symptom of Parkinson’s. But my husband didn’t have Parkinson’s. After tests, he was diagnosed with Hydrocephalus

Wow, did he get a stent and did it help? I do hope!!!

Please see a doctor ASAP.

Thank you, I have. I've been diagnosed with tumor-induced osteomalacia (TIO). I haven't had my PET Scan or seen the endocrinologist yet. I've been pushing and have at least gotten things move up to the end of the month. I'm hopeful that my primary care Dr will order PT and OT in the meantime as well as muscle relaxers and pain medication. I believe most of my pain is related to microfractures in my ribs, back, hip and legs. I think this is also exasperated my FM

 

[SweetWithSour]

Some is energy related, some tight and weak muscles in the hips, butt, and upper legs. The slow is absolutely lack of energy.

 

[SweetWithSour]

I really appreciate all of the recommendations and concerns, thank you! I'm all over the place at the moment I feel. I appreciate this safe space of warriors who know what it's like

 

[JayCS]

I'm all over the place at the moment I feel.

My brain and vision made me chuckle by letting me read "I'm all over the places"... ! - that might be the extreme version of being all over the place...

appreciate all of the recommendations and concerns

Yeah, we need to work on it all slowly, at our own pace, decide our own priorities and come back to other things later....

 

[JayCS]

Some is energy related, some tight and weak muscles in the hips, butt, and upper legs. The slow is absolutely lack of energy.

Cort Johnson recently wrote 70% of people with ME/CFS seem to have fibro, not sure what the quota is the other way round. But whatever - since I've got my pains under control and have realized energy is my actual problem, I often look over the fence to that world, which doesn't quite sound my own, but may give me additional ideas. Like my PEM - post exertional malaise - always comes immediately, only belated if cortisol is masking it, but what I get might fit that expression better than "pain flare".