Weak legs

[geater16393]

Has anyone had severe weakness in legs, down to 1.75 pred, but legs are very weak, have no strength in them, have been doing some weight bearing exercises when I am not feeling too tired.

[HeronNS]

Just wondering if you have been doing those exercises all along? Do you walk?

[geater16393 in reply to HeronNS]

Yes yoga, and now weight bearing exercises, I also have to walk quite a bit with my job

[suzy1959]

I am having some difficulties with my legs. Most of my PMR pains have been in my thighs all along, and then I have had trouble with both knees. The knees have improved with weight loss and exercises, but my thighs are really bothersome. I don't think it is PMR pain this time ( I am reducing v.v.slowly and now on 11mgs. AGAIN!) and co-codamol helps me to sleep despite the pain, but I am intolerant to more than minimal exercise. Is it because I have been so inactive due to the excruciating knee pain? If so, what can I do about it? I have tried Bowen and it didn't do anything for me and I am walking as much as I can.

[DorsetLady PMRGCAuk volunteer in reply to suzy1959]

Hi Suzy,

Because I have OA in my left knee I cannot walk very far, or indeed stand for very long, so on the Physio's recommendation I have tried Pilates. Been seeing Physio for back problems recently. I know my back and leg muscles are not what they should be after almost five years of very little exercise and three and half years of Pred.

Although I've only been twice, am finding it good. Because most exercises are done lying down or sitting there is no undue pressure on my knee, but the legs do get a good workout. And have none of the 'day after' pains normally associated with exercise. That maybe because I'm still on 3.5mg of Pred, but I don't think so.

Might be worth considering. You need to discuss your problems with an experienced practioner, and unfortunately they don't come cheap!

[Grandma20]

Yes am also think my legs are going week my husband has to help me put my socks on and I also having trouble getting in and out of bath. I am going to see my rheumatologist tomorrow so will be asking her, will let you know what she says

[olive2709]

My legs are also weak ,GP has given me Exercise on Prescription had heard about it but not how it worked pick up forms tomorrow then take them to council

[olive2709]

Got cut off meant to say council gym just round corner from GP

[whitleybayfc]

My legs are weak ,they feel as though they are carrying weights around,i cant walk as quick anymore,ive been tolsd its the pred on 7mg daily now reduced from 80 over 2.5 years.Ive other autoimmune illnesses also.

[paddyfields]

I am on 5 mg maintenance pred. and my thighs steadily became more sore and weak as I reduced the pred. It was not a particular symptom originally. - the hip area was the problem along with general fluey feelings all over. If it was just weakness I would put it down to the pred. but they are sore when I use those muscles. I have had a test of the muscle function - nothing abnormal and an MRI scan the results of which I need to chase up as they were not mentioned at my last rheumy appointment.

[JJackdaw]

Hi everyone. Not just me then? Lol. My legs feel like they don't belong to me and have a mind of their own. I walk like I've had one over the eight which is embarrassing to say the least, not to mention the pain! Told my gp and the reply is ...... It will get better in time? Just rest when you can. Anyway, I have bought a massage machine, looks a bit like a shower head but it was worth every penny £30. I used it on my legs, feet, shoulders and buttocks, almost instant relief! Bought it from Amazon, check it out. It's called Medisana, it has vibrate and heat. You can use one setting separately or both together. have a look. I use it daily and I don't get cramp in feet and legs anymore which is great!

[nuigini]

I have legs made of cement! And sometimes feel like I'm wearing lead boots to boot! Had the issue for 10 years prior to having a melt down of all major muscles (or so it seemed) and diagnosed with PMR about 18 months ago. Prior to PMR diagnosis I had been to I don't know how many doctors and specialist about my legs, but never received a diagnosis. Doctors decided it was probably PMR all along. Anyway, legs bounced back to normal when I was statrted on 40 mg, It was wonderful! Then like most, I was put on a much too rapid reduction plan. Relapse caused me to go back to 40 mg. Unfortunately, my legs never came back and cement legs still haunt me through my journey. I'm down to 12.5 mg and they still won't take me far. I can walk for an hour or two with frequent rest stops. It's not real 'pain' per se, just an uncomfortable heavy and weak feeling, After walking for any length of time, I find it very difficult to go up a flight of stairs, or lift my legs into a car, etc. I do water aerobics twice a weak and all is normal in the water. I'm a Pisces so I guess I just belong in the water. I live for the day my legs will come back on land.

I'm doing Bowen Therapy from time to time. It's work miracles for the occasional shoulder, hip or back issues, but hasn't done anything for my legs....yet.

[PMRpro Ambassador in reply to nuigini]

Are they just weak after walking or do you get pain too? I wonder if the blood supply is compromised at all - PMR and GCA patients are at a higher risk of peripheral vascular disease.

[nuigini in reply to PMRpro]

I can't really say it's 'pain'. More weakness. They just don't want to work! I NEED railings on stairs so I can pull myself up. I've had the BP test at the ankles, (forgt what the test is called) and it's perfectly normal and even on both sides. Never have cold feet. Also, the therapist that did the test noted the hair on my toes and legs and commented that was an indication of good circulation.

[PMRpro Ambassador in reply to nuigini]

Fair enough. That was at rest though I imagine?

In that case - I would venture to suggest your PMR isn't well controlled and you probably need a bit higher dose of pred. Why do I think that? Because that is exactly how I was with PMR before I was put on pred. I had 5 years of PMR and while I managed fairly well for most of that time I couldn't do stairs without a struggle. I had a massive flare about 6 months before I finally was given pred and I could only walk downstairs one step at a time and going up I was on hands and knees or - if I was in public - I could forget going up stairs if there wasn't a very firm handrail. Sometimes my legs even felt as if they were of jelly and I couldn't control them properly.

I've news for doctors: PMR isn't ALL about pain - stiffness and non-functioning muscles are part and parcel of it too. I would be trying to do something, put a pillow case on for example, and I just felt my arm muscles weren't working and i wasn't in control of what they did.

[nuigini in reply to PMRpro]

Believe me, I've considered a higher dose. However, given that I had it 10 years prior to PMR diagnosis; total leg improvement with the initial 40 mgs; back to all the old leg issues after relapse and one month back at 40 mg; and no change either positive or negative on my jounrney down to 12.5 mg....the dilema is how far to increase and then how fast woud I taper back down?

[PMRpro Ambassador in reply to nuigini]

If it is PMR - why 40mg?

[nuigini in reply to PMRpro]

I sent you a message.

[peanuckle]

My weakness is in my arms. Some days they are like wet noodles. I do arm exercises with light weights but muscle tone is not as it was.

[peanuckle]

Just reading all the comments about stiff legs and walking as if you were drunk. My grandsons said my walk was a cross between John Wayne and a penguin.

[Sallyaches]

The John Wayne walk describes me as well. On bad days it is like the Tin Man!

[Lainie44]

Oh, yes I have especially when the illness first came on. Could hardly walk. Also extreme weakness in my arms and hands. I could not even hold a paperback book to read! Diagnosed in May of this year and now on 10 mg. pred daily and still have some weakness in extremities at times. Pain mostly in pelvic girdle and awful fatigue! Trying to hang in there as best I can.

[Gary1310]

Yes, my legs are weak. I think I am better but not well enough to go on a planned vacation at the beach for the month of December. Decided to cancel today. I also feel a bit “vulnerable”. I am on 3mg for November and will taper to 2 mg on Dec. 1. I do not want to feel like this while far from home. I am doing well but feel more secure at home.

[Hidden in reply to Gary1310]

Gary1310 this post is 4 years old. You are unlikely to get a reply. Ease post a new message is you want answers. 🌻

[Gary1310]

Thanks...just noticed date.