Jelly legs huh does anyone else get this what helps????

YOUlookGREAT

YOUlookGREAT

Member
Joined
Feb 1, 2024
Messages
11
Reason
DX CFS
Diagnosis
03/2021
Country
UK
Hay everyone I've been getting new symptoms and wondering if anyone else gets this or has any advice or go to methods.....

I have me cfs and fibromyalgia so it could be caused by either or both they seems to fight each other haha

My leg get really weak and my lover legs (calfs) spasm and twitch uncontrollable my son calls it the chicken dance......

When I rest I'm able to walk again but comes back fluctuating as alway today's been a day of grace sore leg muscles but no involuntary Irish dancing.

I fluctuate between bed bound house bound so my muscles are weak . Ive had slight tremor spasms before in legs and neck that was fun.

Usual a sign I'm over doing it.

Any advice would be great 👍
 
Hi @YOUlookGREAT
Not something I am personally familiar with but may be worth putting into the search bits to see what comes up? I know of restless leg syndrome which sounds a bit similar to what you feel.

Have you had any physio offered to you to help with muscle weakness as you are so limited with the cfs ( yeah, I know that one all to well) and fibro. If not I would definitely as your gp surgery for a referral.

I also know about all the health issues fighting like cat and dog. Drives me nuts when you can't figure what condition is causing what symptom - or if they all are just for the hell of it...

And you are 100% in the We All Over Do It ( And Then Pay For It Big Time ) Club 🙄 take care
 
YOUlookGREAT said:
Hay everyone I've been getting new symptoms and wondering if anyone else gets this or has any advice or go to methods.....

I have me cfs and fibromyalgia so it could be caused by either or both they seems to fight each other haha

My leg get really weak and my lover legs (calfs) spasm and twitch uncontrollable my son calls it the chicken dance......

When I rest I'm able to walk again but comes back fluctuating as alway today's been a day of grace sore leg muscles but no involuntary Irish dancing.

I fluctuate between bed bound house bound so my muscles are weak . Ive had slight tremor spasms before in legs and neck that was fun.

Usual a sign I'm over doing it.

Any advice would be great 👍
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I often get weak legs and cramps/spasms in my calfs, particularly at night, as well as my feet. I've also noticed my lower leg muscles twitching/pulsating as well. In fact, what prompted my g.p to refer me to a specialist was the sensation I had while out one day, where it felt like I was semi-paralized from the waist down. The calf and feet cramps are super painful, and in recent years, get them in the tops of my feet where they join at the ankle and shin.

In terms of solutions, I make sure I don't do too much walking or other exercise like yoga at one time. Also, not carrying/lugging anything heavy when I'm walking or bending/crouching. I find that I will take a plunge if I've gone a bit too long between meals. At night, I make sure the blankets are not too heavy/constricting my feet.
 
I'm so sorry you are having to go through this. I have fibromyalgia only, but this has been a newer thing I've been fighting with also.
The only change I can think of that can coincide with this, since this started, would be adding very easy exercise to my days. The more I've been doing them the fewer episodes I've been having, but it is really frustrating when it happens. It doesn't get better in one day and of course soreness goes with it. I won't lie, I get anxious when it happens because in the morning or after a nap it can be scary when you're legs just don't want to work well 🫤
This is what I have found works for me though.
I hope you find the cause and what works for you - even if it's a temporary fix!
 
Thank you so much for messaging. I find the more exercise I try (Very limited) does help but exercise helps fibro and exercise make me cfs worst the two conditions fight so i keep crashing im trying to bulid myself up to go for walks a few days a week (end goal everyday) but im lucky if i can get out once a week. Im lucky as its not permanent my fear of scooter or wheel chair being in my furture my heart goes out to those who have symptoms ike this all the time 💔 chicken are legs are not cool. I think I'll try physio It's hard when rest is the answer seems to be all I do and less you do the less you can do. Its helpful to know others have this symptom it's a bit like haribo you don't know which sweet you'll get everyday seems to be something different on extreme to the next if you find that good old reset button or even refresh let me no..... drives me mad 😠. X x x
 
Bless it a real struggle. I think I was trying to do to much my son had to literally support me arm over his shoulders while I was trying to walk determined to go the chemist when in reality I had no business being out of bed. I get restless legs more on feet at night that tingle crawling twitching make you want to remove your feet from your body. I hope the specialist was helpful it can be so scary also not knowing what symptoms we should take serious or just try and calmly say oh it my me cfs or fibro let's just ride this one out not going to freak out 🥴.... its fine 😉
 
Oh yes Sbee I claimed that card full membership lol. I'm going to try a referral to physio hopefully they don't forward me to pain management this time understand a condition doctors cant understand is great fun can we send them on that course please I think it weakness lots of muscle wastage a bit like reconditioning and old car there some limitations there but physio is def worth a try x x x
 
Going through similar as well @YOUlookGREAT
Got fibromyalgia, osteoarthritis and inflammatory arthritis ( loads other stuff but these are the ones with more affecting symptoms ) chronic fatigue is the one thing that drags me down so much. and as you and a lot of forum members know, chronic fatigue is not just feeling a bit tired...
It's hard to work out what symptom comes from which condition so in the end I mostly just try help each symptom instead.

Definitely a physio can help you work safely and try to gently build you up so you don't push yourself too far to quickly. I did the thing where I was so exhausted so I just almost stopped doing anything so yeah, weak muscles and lack of stamina. Gradually built things up myself by gentle slow walks,and gentle stretches things like that. Slow is the key at first.

Fingers crossed so have a drs appt later in month with a Dr who is actually willing to talk about all 3 conditions and their  combined affect on me as a whole. And I'm not leaving the appt until I am satisfied he understands that I'm not willing to be shoved in a corner and ignored because that's how it feels sometimes 😠.
But you just go carefully and listen to your body, no one knows it better than yourself. X
 
Wow. Yes. I have been experiencing jelly legs as well. I. Remember saying, a couple of times that "my legs won't work". I feel like I need a cane sometimes. And yes, they spasm and jerk at night. No clue. I have Fibromyalgia, sarcoidosis and Sjrogen's. The Fibro has been terrible. Constant body pain, swollen/painful joints, severe sweating sometimes, blurry eyes, along with a few other symptoms. Apparently, my Pcp and Rheumatologist do NOT believe in anything stronger that Tramadol. Anyways, yes, I gwt the jelly legs, too. I hope you get some answers. 😁
 
YOUlookGREAT said:
Also what exercise is have been trying ??
Thanks again x
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I just tried a video on YouTube today, called Senior Chair Exercises with Sharon and it was great so far. It is to help strengthen muscles for balance etc. Hoping I can stick with this one. I always joke there's some magnetic force that attracts me to walk into walls. Swimming/water classes would also be great exercise if you have the resources and energy. I used to take the senior water classes in my 20's and get weird looks 😂
 
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