Rusty Robot Legs

[Noosat]

Rust Robot Legs. Are these heavy awkward legs caused by the PMR or the Prednisone?

[PMRpro Ambassador]

Yes.

Difficult to say - for some people it is a feature of PMR that never really goes away or reappears at lower doses of pred. For others it accompanies being on pred, possibly pred's effect on muscles.

[Marijo1951]

I love the description - sounds just like my legs... If only a drop of WD40 would do the trick!

[Hidden]

My rusty robot or Frankenstein legs were definitely a feature of PMR pre dx and occur with fatigue now. They make themselves known after exercise followed by sitting down...say driving. Getting up and walking then is very creaky!!

[Highlandtiger in reply to Hidden]

Exactly this for me too Poopadoop. All the time pre dx therefore definitely PMR then but it still kicks in from time to time now (particularly after driving or sitting) and I feel I’m walking like John Wayne!

[Hidden in reply to Highlandtiger]

Get off your horse and drink your milk....🤣🤣🤣

[Yellowbluebell]

Dont know which causes the feeling but I know it takes me ages to climb the stairs. I try and do as many things as possible upstairs to avoid the Everest climb too often!

[Perkey in reply to Yellowbluebell]

Oh how I know that feeling every shop I go in I am not looking for the toilet but the lift!!

[Yellowbluebell in reply to Perkey]

As pred makes me pee more I am usually looking for the lift AND the toilet.

[piglette]

I have concrete legs, a real pain.

[Daisyfield]

I love these descriptions...mine is cement legs...I find worse if stressful time. If I have too much going on, my legs fill with cement. I think they are PMR caused for me.

[Noosat in reply to Daisyfield]

Yes, it is really awful I managed to go to grocery store to-day. First time out since my hospital episode last Wednesday. I took my hiking stick, but instead of using it, I grabbed a store buggy in the parking lot. As long as I knew I had it to lean on if necessary, I was O.K. It felt so good to be able to do something for myself again, instead of my daughter having to manage it all.

[Bouvier in reply to Noosat]

I'm the same can't wait to grab a shopping cart, I then feel safe to do a bit of fast walking !

[teesher]

Hi Noosat, I had a Frankinstein walk for a good while before starting on Pred, then things began to ease up. I still walk a bit off kilter four years down the line and I can't run anymore. But hey, I feel part of the human race again and that will do me. Pilates really helps.

[Noosat in reply to teesher]

Thanks for post. You are encouraging me. I used to be a competitive runner in my middle years.

[Koalajane in reply to teesher]

Mine first thing in the morning is more like a penguin walk

[teesher]

I only used to run for the bus, and not very well at that.. You must have good strong muscles with all your running and that will stand you in very good stead.

[Noosat]

I never thought those strong legs would ever let me down; that they would last forever. But alack and alas when PMR hit them, especially in the thighs, they just turned to mush

[Noosat in reply to Noosat]

I am down to 4mg. I am leaving for the gym within the hour. I do believe exercise is an important ingredient in getting better. My morning legs are very stiff - my rusty robot walk. However, for me, persistence and patience seem to be key. Have a wonderful week-end !

[Hellyowl]

I have GCA and have stiff legs and thigh pain Dr said it is the pred. Worse in the evening after exercise. I have recently upped my leg strengthening exercise and although there is some pain afterwards overall my legs are getting better, morning stiffness is decreasing. However I am also down to 3 mg that might be helping.

[Mishycake]

I have UCTD and have this issue after I sit for too long.

[Daffodilia]

Before Pred I had heavy legs from PMR

[Bobbury]

From my own experience I know exactly what you mean. My legs were like wading through mud. With the help of this forum and advice from others, I found that upping the dose of

pred by just 1mg done the trick. I occasionally get this symptom but it is quite rare now.

I'm on 5 mg and have been for some considerable time.

[Thelmarina]

I had them on a higher dosage, then they went floaty and now they are vaguely normal - I call it BLEAH (Bloppy Leg Extremely Annoying Hinderance) 😀

[Hidden in reply to Thelmarina]

I feel bloppy... 😂😂😂

[Noosat in reply to Thelmarina]

How much Pred are you taking?

[Thelmarina in reply to Noosat]

I’ve just got down to 10mgs 🤞

[piggypink]

Hi Noosat. I too have very heavy wobbly legs, probably Preds causing it as I have GCA. Sometimes I can hardly walk and people must think I'm drunk the way I lurch about!! Very frustrating as one of our main hobbies is walking which has now been greatly reduced. I find a shopping trolley very handy to hold on to but my hubby is my main support, although I have now bought a walking stick. Stairs are difficult for me when I am out and about especially as I live in a bungalow. Pilates helps. I have found a new class near me which caters for people like me with health problems. The instructor is excellent and will give alternative movements etc. Although after the class I'm ready for a cuppa and a snooze. Now the sun has just peeped through the clouds so maybe it will be a lovely day.

Hope it is sunny where you are!!

Take care xx

[Noosat in reply to piggypink]

Hope it has been a lovely day for you ! This morning I had my usual rusty robot legs, but have to laugh about them and all the ways we characterize them. This morning I thought of the monster in Frankenstein, lurching from side to side.

[Hidden in reply to piggypink]

Stairs aren't all they are cracked up to be! They have caught me out on many occasions with a slip fall. The latest being a couple of weeks ago. On the up side when I am not slipping up and down them I hope they keep my legs as strong as possible. Kerbstones and outdoor steps just as dicey. 🎲🎲

[AliDeJ]

Yes, legs like lead and pain in the buttocks after sitting on a hard seat for too long. The muscles are not happy.

[Jemsea]

On some days my legs feel like they are ceasing up - difficult to put one foot in front of the other. I am on 2.5mg which I take at 10pm just before I go to bed. I wake up with no pain, no stiffness, but on occasions my legs feel they don't want to walk. I had this on a couple of isolated occasions when I was regularly looking after my grandchildren, long before I had PMR, and once when on a 6-mile walk a few months before I was diagnosed with PMR 12 months ago. Because I have no pain - only awkward legs - I wonder whether I actually have PMR and something else is causing this walking problem.

[Tiredcat]

Yes, I would call mine wobbly legs like jelly. They are my worst symptom by far of PMR.

What I refer to as fatigue is really mainly the legs, thighs specifically , that just don't want to walk.I actually have had no pain at all since being prescribed prednisone early April.

As to whether it's the PMR or prednisone, good question!. My doctor says it's the condition and seems to think more prednisone should help but it definitely hasn't. i'm on 60mg at the moment as there is a slight worry I might have GCA, will get results of biopsy in a few days, but the higher dose hasn't made any difference to anything, i,e, no worse or better in terms of legs or fatigue.

[Noosat in reply to Tiredcat]

So sorry that you are on such a high dose ! I hope your tests are beneficial and you can start tapering.

[Amayeee]

Great question, one I have been asking myself 😏

[Gary1310]

My legs were problematic long before I was put on Prednisone. Years before Prednisone. I think PMR was building up for years before flare and diagnosis.