Jelly Legs - what causes it, is it actually a thing, or just me.?

[gardenlady]

Hello. I have heart failure, only recently, 6 weeks into treatment. Mostly I feel Ok considering, but if I do too much I get what I call 'jelly legs'. Like they don't belong to me and can't hold me up, wobbly. I take to the sofa, what I call my EBE moment. (literary reference to Elizabeth Barrett Browning). Can people further down the line tell me the physical or medical cause of this - lack of oxygen to the muscles?, is there anything you can do about it. Other that just doing less - this is not me by the way. I find the EBE moments very hard. As a newbie, just wanted some wise words from heart failure folk who have got the T shirt. Thanks in advance.

[Kristin1812 Heart Star]

What a hard thing to do....suddenly take it easy, when you’re not used to it. I’m sure others with more similar HF xperience will soon be in touch, with their wise words.

My only parallel, is having to learn to pace myself, learning what makes me so zonked, and how to manage it. I start off slowly, whatever i’m doing, drink masses, stop as soon as I get a sign I’m flagging, and don’t push it. I now get more good times, and less of your EBE chaise longue moments!

[gardenlady in reply to Kristin1812]

Thanks Kristin1812,

Pace myself, my husband would be laughing if he read that. But I will have to if I am to learn to live with this. Thanks for the reply.

[lilymeg]

I have Atrial Fibrillarion (paeoxysmal) and tachhcardia. I too have to pace myself and a lot of the time i feel frustrated but I am working being more patient with myself and thinking up things I can do. I can sympathise though because for 23 years I have had to pace myself because I have fibromyalgia and other problems. Suddenly in the last 18 months my pacing time has dramatically shortened and my capacity is more limited. If you look up your medical problem with the descriptive words being 'cause of symptoms' that might be illuminating. Best wishes for dealing with your new state. I think I'll be broadcasting my new flower seeds from now on 🤷‍♀️

[BlueZircon]

I have HF just over 4 months since my STEMI and 2 stents. I know exactly what you mean I get exactly the same especially when I stand for too long. I am seeing HF Nurse this Friday and will ask her and let you know what she says. I believe it may be a side effect of one of the medications. Also got appointment with HF Doctor in a couple of weeks will ask her and seeing my Consultant Cardiologist in November and will see what he says. So hopefully all 3 will give me the same answer.

[cowparsley in reply to BlueZircon]

I`ve had HF for 10 years,still don`t know if it`s my heart,my medication,my age or laziness holding me back so please let me know what you discover.

[BlueZircon in reply to cowparsley]

Will do.

[BlueZircon in reply to cowparsley]

Hi cowparsley,

Saw HF Nurse today and asked her about 'Jelly Legs'. She said nothing to do with HF or medication. She thinks my scoliosis is causing the problem. Good news is that she has discharged me as I am now borderline HF. I think my eating plan, weight loss and meds have all contributed to this. She was actually amazed at my ECG and blood test results.

[cowparsley in reply to BlueZircon]

Good for you.Glad to hear your news.Dont know what scoliosis is xx

[BlueZircon in reply to cowparsley]

There are 3 different types. Mine is idiopathic (cause unknown) degenerative scoliosis wear and tear of the spine .

[cowparsley in reply to BlueZircon]

Oh dear not good xx

[gardenlady in reply to BlueZircon]

Hi there, it is great news about your HF. My husband has scoliosis and has just had his second spine fusion. I hope they manage to sort your out. I shall have to ask my own consultant when I see him about my jelly legs. Take care.

[gardenlady]

Hi BlueZircon, thanks , I will be very interested in the answer.

[Tj1960]

Hello my jelly legs twin. I have the same problem and I haven’t got to the bottom of the cause yet,but there might be light at the end of the tunnel. My cardiologist is putting me through a treadmill stress test at the end of the month to try and find out what is the cause of my jelly legs.

I had my heart attack/failure July 2018 and was doing cardio rehab and walking 5km a day until my medication was changed because of my condition and it is from there that I have been unable to do anything.

I just wish that all will be ok and eventually I will get some kind of life back.

Please keep in touch and I will let you know how I go on. X

[BlueZircon]

Hi gardenlady,

As promised update on Jelly Legs. Saw HF Nurse today and asked her and she said nothing to do with the heart or meds. She thinks mine is caused by my scoliosis. Cannot remember if you saw my previous post about losing weight and normal cholesterol? My ECG has now totally changed and I am now only borderline HF. HF Nurse seemed amazed and has discharged me from her care. Although still have a few things wrong they are nothing like what they were. Definitely think the weight loss has helped heart not having to work so hard.

[gardenlady]

Hi there, yes I did see it thanks, and replied before I saw this one. Sadly my HF has been caused by heart damage from Chemo drugs I was taking to prevent the recurrence of breast cancer, and as such I didn't have any many lifestyle things going on that I can now fix to make myself a bit better, although I have lost weight since my diagnosis. Having said that they are very pleased with my progress, and it may get better by itself now I am not taking the chemo drugs. Or it may not. Time will tell.

[IrisCarter]

I am fairly recently diagnosed too and experience ‘jelly legs’. My own understanding is that it is due to the heart not keeping up with demand. The only solution is management of your activity and your HF.