Has anyone else had jelly legs!: ive been getting... - PMRGCAuk

PMRGCAuk

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Has anyone else had jelly legs!

Caulkhead63 profile image
27 Replies

ive been getting what I can only describe as jelly legs! It's feels like I've got no bones in my legs! I can walk but it feels very strange and I'm sure it looks to other people that I've had a few too many drinks!

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Caulkhead63 profile image
Caulkhead63
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27 Replies
Jigsawlass profile image
Jigsawlass

Yes! When I have a bad fatigue day my legs either feel like lead or "wobbly". For me, rest is what is needed 🤔

Nanny71 profile image
Nanny71

Suffered with this for quite a while when reducing. Was sure people in the village thought I was drunk . Im down to 3 mg now and seem alot steadier. 🌺🌺

Bcol profile image
Bcol in reply toNanny71

Not had the jelly legs from PMR but in the early days of my OA my right leg would sometimes just give way and I'd fall over, very embarrassing if doing the shopping, crossing the road etc and I'm sure that most people thought I was a tad tiddly, whatever time of day it was.

Kendrew profile image
Kendrew

Yes...I've experienced this both when on higher doses and immediately after some tapers. Also experience it if under the weather.

PMRpro profile image
PMRproAmbassador

I remember someone else on the forum saying someone in the street thought she'd been drinking!!!!

Bluey-1 profile image
Bluey-1

I have also experienced extremely weak legs, often at the end of a day or when feeling ill. I am currently trying to recover from a cough, throat infection and croaky voice which started a week last Saturday. Just can’t shake it off although I do feel slightly better today.

Twopies profile image
Twopies

yes, happens more often than I’d like…like today for instance. Can’t pair it with any activity in general, other than reducing—it’s more frequent since tapering, and very disheartening.

Dochaz profile image
Dochaz

Know what it feels like! This tends to happen to me when I overdo physical activity the previous day or two. Resting up with a good book on the couch helps. A cat on your legs is an optional extra

Longtimer profile image
Longtimer

Yes have it all the time. Some days worse than others heavy thigh’s and weak legs. The bit I hate is as others have said look like a drunk and also it makes me lose my balance. You are not alone!

Wallysma profile image
Wallysma in reply toLongtimer

I have it all time too!! It's like have jelly in my.knee joints arm joints....and brain cells. I hate it. Really hate it. I sometimes feel like I am going to fall on my face. I also get dizzy when I get up from sitting position. I am not happy you have this....but it helps someone else knows what I experience. I hope we both get through this soon....and the feeling will go away. Is it pred? Is it PMR?

BE WELL.

.

ChinaWuntoo profile image
ChinaWuntoo

Yes, get it quite a lot. Someone here called it 'swooning' which fits me exactly. Thankfully not falling over but having to lean against walls etc. I'm down to 4.5mg so assume it's adrenals kicking up a fuss. Rest (even more than usual due to fatigue!) helps. A recently installed stair lift helps too!

PMRpro profile image
PMRproAmbassador in reply toChinaWuntoo

Do you check your BP when it happens?

ChinaWuntoo profile image
ChinaWuntoo in reply toPMRpro

Thanks. I check BP quite regularly. The GP and nurse both are not worried (!) and it certainly is not within the 'High' section. I told my GP that I would be rushing for a consultation the first time I had a fall as a result of dizziness!

PMRpro profile image
PMRproAmbassador in reply toChinaWuntoo

It isn't high I'm thinking of!

ChinaWuntoo profile image
ChinaWuntoo in reply toPMRpro

Got it. Pred may lower it I understand. So I watch the downs as well as the ups. I'm usually in the middle section, not low and not (quite) high. I can sometimes feel when I am higher than should be.

Is low BP less likely as Pred tapers?

PMRpro profile image
PMRproAmbassador in reply toChinaWuntoo

Well no - low BP can happen with adrenal insufficiency. But you can have short-lived episodes of low BP which cause dizzy spells and even collapse.

ChinaWuntoo profile image
ChinaWuntoo in reply toPMRpro

Thank you.

piglette profile image
piglette

I think my legs are more cement legs than jelly legs!!

PMRpro profile image
PMRproAmbassador in reply topiglette

Does that make them stable then?

piglette profile image
piglette in reply toPMRpro

They go with the stainless steel bones!

PMRpro profile image
PMRproAmbassador in reply topiglette

Not titanium?????

piglette profile image
piglette in reply toPMRpro

just the hip bones are titanium. According to my Dexascan results the rest of my bones are stainless steel!! Perhaps my shin bones are lead of course or wrought iron even.

Wallysma profile image
Wallysma in reply topiglette

maybe solid gold?

piglette profile image
piglette in reply toWallysma

I would definitely exchange them for stainless steel in that case!!

HeronNS profile image
HeronNS

Not jelly legs but at around 4 mg pred I felt like I was walking through water, it was such an effort.

redruth123 profile image
redruth123

Yes definitely had jelly legs when first prescribed Pred for PMR. It was very alarming and distressing. Fortunately it lifted after a while - I now just walk like a duck with stiffness, but rarely have the jelly legs.

Loyd profile image
Loyd

Absolutely!! Mine are awful and I walk as if I’ve had two gins too many - strangely enough after a glass of wine they feel a bit better! I’ve put it down to having bad ankles - never considered it might be the pred for PMR. Condolences to all us jelly leggers!

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