Achy jelly legs

Hi

Does anyone on here suffer with painful (mainly when active ) jelly legs they feel wobbly and sore when I walk but not weak as I can easily climb stairs but walking my dog is uncomfortable and I get sore shooting pains running down my inner thighs which now are really starting to bother me as it's been going on now for quite some weeks.

At night in bed I notice that my legs ache not bad enough where I can't sleep but enough that I can't put any weight on them like laying on my side I now have to put a pillow between them as they feel heavy .

I'm not due to see my rhuemy till March and I don't want to bother the GP (again) maybe I'll try naproxen for a few days.

Feeling worried 😞

[adrienneioannou]

Yes I get this. My legs sometimes feel like like they want to give out on me. I have just started methotrexate to help with the muscle pain in my legs and Spasms. I still walk my dog but some days are easier than others.

Good luck.

[mariearmstrong]

are you on prednisone? that almost ruined my walking, I had to wean off of it, and it improved. but it could be some other drug. I did use advil to help with pain and walking so I could go to work, and it helped, but bad for my kidneys, so I had to made a decision and I weaned off prednisone

[Purpletop]

It's likely the meds - if this persists, go and see the GP and try to untangle the combination of side effects of all these meds we take.

I wouldn't wait - some meds can cause lasting muscle damage without you realising. Also check your urine - if it gets tea coloured and the muscle pain is severe, go to A&E.

[Hidden in reply to Purpletop]

Thank you purple top

It's definatly not meds because my rheumy took me off them as he said my bloods are now only showing a week positive, so doesn't think I have lupus now this was back in October so have been suffering ever since.

Went to my GP last November and he re did bloods again as he thinks I have lupus and they came back as positive so I'm so confused it's been hell, I have been so tearful and down as my GP is reluctant to do anything without the knowledge of my rheumy.

My husband was so angry and frustrated that my rhuemy has just dismissed me leaving me in tears and in awful pain that God love him he has booked me an appointment to see a lupus specialist in the london lupus centre clinic for a private consultation with a professor Edwards on Friday and I can't wait to finally get sme answers with someone who knows exactly what he's tking about.

[Purpletop in reply to Hidden]

That's good, at least you're doing everything you can to get to the bottom of things. Good luck and let us know how you get on, and what he says about the jelly legs.

As a note, just because your blood shows only weak positive doesn't mean lupus is not present, it just means that it's activity is undetectable for the moment in blood. The clinical signs (I.e. How you really feel) are the best indicator of disease activity. Unfortunately most doctors prefer to go by the blood tests.

[Hidden in reply to Purpletop]

To true purple top, doctors like evidence it's there back up which I understand but that doesn't help patients who are in constant pain that should not be ignored which unfortunately has in my case.

Roll on tomorrow and fingers x I get. Some answers.

[faetheness]

Have you thought of low blood sugar? Maybe you need to eat a banana or cereal bar? Just wondered!

[Hidden]

Oh how I wish it was as simple as that but sadly my legs are still achy really badly even though I can walk they feel so jelly like and are aching so bad I can't walk very far.

My rhuemy is sending me for a Mir scan as he doesn't think its muscle related (I do) but a Mir will show up everything.