View Full Version : Knee pain especially on steps...

04-18-2010, 09:19 PM
I was wondering if anyone has severe pain in their knees? Mine feel like someone hitting me with a ball bat when I try to climb up or down steps. Also when I try to stand from a seated position. I have about 6 steps into my home...then my bedroom is upstairs. Needless to say many nights are spent downstairs... is this a 'normal" Lupus thing? I have other joint pain but nothing as bad as the knees. I feel like I am becoming a prisoner in my home because I hate climbing the steps, since the pain sucks the life out of me. I love the spring so I am praying for good days so that I can go out and work in my flower beds and garden. Thanks for being here! BJ

04-19-2010, 08:21 AM
oh that sounds familar to me and probably a lot others. Good old arthritis and lupus plus getting old. Hope it gets better. My methotrexate has helped my joints. Bonita

04-19-2010, 09:33 AM
i haven't gotten arthritis ever since i was diagnosed with lupus, but when there is a rainny day back then my arthritis would kick in.

04-19-2010, 02:38 PM
I havent been diagnosed, but I too have this horrible pain in my knees. It is not always both, but it is definitely there when I walk up and down stairs. Thank goodness there are only four steps into my house and the rest is flat. I refuse to go upstairs at my moms because it brings me to tears.

04-19-2010, 05:07 PM
Oh yes!! I think the Plaquenil has improved it a bit, but there are some days (mornings especially) when my knees sound like Rice Krispies (and feel horrible)!! My bedroom is also on the second floor.. there are times when it will take me quite some time to get up or down the flight... I'm curious to find out why sometimes the crackles & pops subside for awhile.. I'm assuming when they do make the sounds, it's because they're inflamed. I'll have to ask next time I see my rheumy.

04-19-2010, 05:47 PM
My knees flare and then quiet down..the anti inflams help and sometimes I ice when bad enough. I also try to take it a little easy on the flare- up times..no heavy bending/ excessive steps

04-19-2010, 06:51 PM
Yeah, it sounds familiar. I've only had it a few times, but about a month ago, I couldn't walk for a week. My anti-inflammatory is helping, but it doesn't always work 100% and sometimes not even 85%. Hope you feel better soon. It's not fun to sleep downstairs when the bed your used to seems so far away.

04-19-2010, 08:15 PM
I have pain in my knees all the time but its worse in the left one. Going up and down stairs is painful and I crack with every motion, even when walking on flat ground, and I'm not even close to old yet! I use a knee brace a lot because sometimes it will even give out on me.
Do you ice your knees? Have you tried using Ice Gel? I swear by that stuff, would bathe in it if I could.
Hoping you feel better

04-20-2010, 02:47 PM
Well my story is joint pain in the knees. I think from lupus, arthritis and being overweight. I live in a second floor apt. and it is up and down the steps all the time. It always hurts and I have to take them one at a time and stop every step. Eventually I make it up all the stairs. Unfortunately, no downstairs apts. were available when I moved here.

04-28-2010, 06:20 PM
Thank you for your reply. Sorry for being slow to reply been down and out again. I never had arthritis except in my neck before this lupus diagnosis a little over a year ago. This is every day rain or shine. I went to the rhumy today and he gave me cortizone shot and upped my meds. Hope it helps. Thank you so much.

04-28-2010, 06:41 PM
After suffering for what I thought was long enough went to see my Rheumy today with the knee pain. He suggested a cortizone shot in the right knee, Nothing to lose at this point. I sure wasn't haveing any fun! He said it may help and may not but I am willing to take the shot to get some relief. It is helping today so I'll keep my fingers crossed. He upped my
azathioprine to 3/day and Plaquinil up to 2/day and Prednisone 1 /day. Maybe the combination will keep me from being a prisoner in my own home.
I had not tried ice. Usually when it hurts the only thing that helped was to grab a quilt and get everything warm and lay perfectly still. I will try the ice and the icy gel. thanks so much for the help!!!
I am so happy to have people who understand what you feel! Thanks again...

04-28-2010, 09:41 PM
I have awful knee pain, too. If the steroid shots don't help, insist on an MRI and/or a bone scan. Mine showed that I had Avascular Necrosis, which meant that the bone was disintegrating. I also had a torn meniscus, so I had arthroscopic surgery for it. The knee moves better now, but I still have a lot of stiffness.
I love it when my PT does a freezing cold compression on my knee. It actually feels good for a while after.

04-28-2010, 10:13 PM
I appreciate the advice... funny no one ever told me to use ice. I thought about it for the swelling but since no one had suggested it, I didn't do it. This site is a wonderful thing... I am learning so much. For a couple of years I was wondering if I was going crazy with symptoms that didn't make sense. The knee problem has just been in the last year but now so bad I just stay in rather than walk down the outside steps. Its feeling better now with the shot... hope it lasts!!! I will enjoy it while i can! Thanks again, BJ

04-29-2010, 08:11 AM
My knee pain is probably the worst aspect for me. They hurt me constantly and when I have a flare up I struggle to straighten my leg, meaning I can't walk. I'm assuming its lupus as I have no damage to them, have no arthritis, and i'm only 20 (so isn't age!!).

05-02-2010, 07:57 PM
I know what you mean about the pain... I feel for you, being so young with the same type problems. At least, I can claim some of it off on my age!! The cortizone has helped some. I have such a difficult time trying to get up and down stairs. I hadn't seen anyone else post this so its good to know that others do have the same thing tho I wish we were all not having any difficulties at all. Thanks so much. BJ

Linda From Australia
07-19-2010, 03:20 AM
How is your knee Billie? I also get knee pain, I remember last year I hurt my knee, but no idea how I did it. It was probably a Lupus flare - before diagnosis. I bought a stretchy thingy that you can slip over your knee. I even bought the largest size because my knee was so swollen. I did help a bit, but it kept slipping down and then it was no use. I have never thought about using ice though, I still don't know about that as it is winter here in Australia and I am freezing my butt off. The pharmacy told me today that I can buy an adjustable brace for my knee so it can be made to fit me according to my swelling. When I see my Rheumy (1st visit in 4 weeks time) I assume I will go on steroids for my kidneys, then I will really need a larger brace. But hopefullly the steroids will help with the pain.

I have read through some old posts and it is interesting to see how people have gone because many posts just stop and I have no idea how they solved their problems. It is a bit like how I get very dissappointed when I watch a movie on TV and I fall asleep and never get to find out what happened in the end. I am not into soap opras on TV, but I have my very own soap opera here on the WHL online forum, finding out what people get up to in their lives. The only difference is that the actors here are real people and they all all NICE! No nasty things happening here, thanks to the moderators.

Anyway, I just wanted to know how you were feeling Billie, and wondering if you have been able to play outside with your grand kiddies.

07-19-2010, 10:56 AM
I agree with Linda
How are you doing, I missed this thread the first time around or I'd have jumped on it. I've had knee problems since I was 12.


twitch twitch

07-20-2010, 06:30 AM
yes - especially on stairs or rainy days, but honestly I have attributed it to my weight ever since I heard your knees absorb the pressure of your 10x your weight with each step, but now that I have lost and gained and lost again and have felt how different weights feel on my knees, I think it's really a combination of overweight/immune issues.

07-21-2010, 12:34 PM
hi hillbillie,

like nonna and linda, i also missed this thread the first time that it circulated. I also hope your knees are doing better. I struggle with knee pain, especially when trying to stand up or climb stairs. Sometimes i just have to stand there for a minute to give my knees a chance to work.

I want to also mention that fibromyalgia includes pressure points just below the center of the knee. sometimes when my knees are especially aching, i can touch those pressure points and feel the pain. I don't know if you have been diagnosed with fibromyalgia, but i thought i would add this idea to the others.

take care, and hope you are feeling better.

Angel Oliver
07-21-2010, 01:34 PM
Oh yes me too.I like the description of Rice Krispie noise in the knees lol...thats mine when i straighten them out .At night when i bend my legs, if i go to get up and straighten them,smetimes they hurt so much i scream out.But i do think the plaquenil is helping a touch as its not every night i have this rusty knee pain.Im sorry you are having this same problem.Do you get swellings around your knee as well? I hope you can find something to help you.I also use a gel which gets down into the muscle which does ease it a little.My Mam has the same problem and she can not climb the stairs or go down steps due to severe pain and swellings.So i realise how restricting it is and how frustrating when you so want to do something nice like your garden yet have so much difficulty doing the basics due to pain.
Thinking of you
Love Amanda.xxxxx

07-21-2010, 05:23 PM
How's the knees doing? thought I'd share some advice from the physical therapist......

1) Cold is our friend, we apply it first 15-20minutes
2) Then we can get warm with a heating pad or a hot bath.

I was surprised but it works. Hope the shot helped they only worked for me twice. After that no dice. Keep it moving don't let it stay still. they freeze up and hurt more. Do you take a diuretic? Swelling and the Rice Krispie noise could be water on the knee.

that's about it,
nonna, twitching away

07-21-2010, 09:06 PM
No Fibro mentioned... I hope not I don't know if I could take another diagnosis! I think its just mainly inflamation in the knees that causes the pain. I hadn't read anything on here about anyone else's knee's so I thought maybe there was something else going on but it seems pretty common. Thanks wishing me well. Thanks for the note. I'll keep hobling along! Hope you are doing well.

07-21-2010, 09:12 PM
Thank you, This site is so helpful just to know you are not alone in what you are feeling means a lot. My knees still pop, swell and hurt. The Ice muscle rub that was recommended does help when its hurting some and the Ultram the doc gave me helps me get a little sleep. The increase in plaquenil, and Imuran seem to be helping a little. I just try to take each day as it comes. If I'm hurting bad I just stay indoors. I'm still not able to do much but it feels good to be able to get out of the house on a good day. Thanks again, Billie

07-21-2010, 09:19 PM
As far as I can tell the swelling is just from the inflamation in the joint. I don't have any swelling in my legs, ankles or feet. The Rice Krispy noise happens mostly when the inflamation is visibly there at the knee. I do keep moving as best as I can but just on level floor, often I have to get out my mother's cane. I stay inside if its hurting bad. The shot helped some but its didn't last long. I'll try the ice then heat thing. Thanks for passing along the PT advice.

07-31-2010, 05:31 PM
I have knee pain and extreme hip pain (bursitis) on the left, so I use a cane too when I'm really suffering. The shots don't last long and it's not good to get too many. The ice then heat is a good way to go, have you tried using ice gel?

Linda From Australia
08-08-2010, 12:30 AM
Just re-reading through this thread. Hunniebun you said you use a knee brace, what sort do you use?

08-09-2010, 05:49 PM
Yes, I have found the ice gel especially helpful when I lay down at night. The cold and then the warm gets my mind off the pain some how and I can go to sleep. I don't know how it works but this stuff is great. Thanks!

08-16-2010, 08:30 PM
My PT also went by the cold, then warm thing and it helps. They also sent me home with a TENS unit, which my insurance paid for, so now I own it. I sometimes use it while I'm watching TV. It also seems to help with the pain, or at least it take my mind off of it!

Linda From Australia
08-16-2010, 10:28 PM
I am a little confused Marla, what do you mean by:
My PT also went by the cold, then warm thing and it helps. They also sent me home with a TENS unit,

08-17-2010, 06:14 PM
Physical Therapist for the PT, and TENS unit (Transcutaneous Electrical Nerve Stimulation) is a wonderful little box that "shoots" little jolts of electricity into a person. It "stimulates" the nerves and hence the muscles, the amount dependant upon how high you turn it up. Some units are as little as a cassette tape case. magistramarla might be able to tell you how they work their wonders, but after the use of one, they make the muscles involved feel "relaxed". Care must be taken for placement of the electrodes, of course...

08-19-2010, 08:51 AM
I have been having SEVERE kee pains. Went for x-ray, catscan, and Mri....went to bone Dr. yesterday and he said my knee looks perfect (lol) i asked then how the heck am I in so much pain??? he asked if I had ever heard of LUPUS, and I explained that I have an appt w/ rheumy on Monday.
He gave me a shot of Cordozone in my knee... and that was that....2 months of waiting to get in to see him, to find out nothing!
::sigh:: oh well Im hoping on Monday my rheumy will be able to help me.

I hope you find some comfort, as I know how terrible the pain can be.

08-19-2010, 08:37 PM
Thanks, I had the cortizone shot adn it helped for around 3 weeks. Yesterday I had it xrayed but I don't think there will be any thing to show up. I have had it swell up to 2x normal size. My rheumy just ups my meds I guess in hopes that it will help. I don't have very good insurance coverage so I guess that is why they haven't given me any tens unit or anything. I try and keep it eleveated when I sit down.
Let me know how you do at the rhuemy's visit. Billie

08-19-2010, 09:05 PM
I've got bad knees, but my back is what *really* makes my knees hurt, from impinged nerves... Any chance your back is causing issues on you, especially in the lumbar? I feel for you, and will be praying.

08-20-2010, 08:31 AM
I get knee pain as well, but seems at its worst when I have been in a cold place.

then when I return to a warm area, it goes away.

08-20-2010, 05:46 PM
I have had pinched nerves before but it does not feel like that. They x rayed my back too so I ought to find out what's going on hopefully. Thanks for the prayers! My Rheumy thinks it is the lupus. I have loose joints so that could be part of it too.

08-23-2010, 04:56 AM
i've been dealing with knee pain and knee 'give outs' since i was 12. the specialist called it growing pains back then. truthfully i never got a name and don't care any more. i just deal. the physical therapist advised ice-ing for 10-20 minutes then a heating pad or a comfy warm-hot tub. i feel it works along with some painkillers.

nonna twitching away

just went back and read the thread........... brain fog I've ready said this. oh well. reminders can't hurt.

08-23-2010, 07:18 PM
No problem Nonna... My brain fog is so bad I didn't remember reading it either... So we are both just fine!!!! Thanks,
The pain is horrible I can't imagaine a hard hit with a baseball bat hurting any worse!!! It almost makes me fall I hold on to the rail on the steps as much as I can even lean over against the wall when possible in case I do fall. Evidently this is a common problem with people with Lupus. I do have days when it is not quite as painful. As far as a hot tub... I'd have to have a crane come pull me out. I can just hear the firemen laughing if I got in the hot tub and then couldn't get out. lol
Thank you for the info, and hope your fog clears away and takes mine with it on a permenant vacation!!!

11-17-2010, 05:38 PM
Hi Hillbillie, I just posted a reply and for some reason it got erased : (
I'm new to this site, and actually this is my first time posting. I also was experiencing the type of pain you're describing. I kept insisting on test to find out whats wrong. Luckily my rheumy is good at getting to the bottom of things. After xrays, a bone scan and an MRI, we found out I have avascular necrosis, (bone death due to lack of circulation) Not to scare you but please insist on an MRI, better be safe than sorry...Good luck with everything

11-17-2010, 06:10 PM
My 15 year old has been going through this since she was about 6. The first time they sent her to a rheumy they said her knee was out of position but now she is having the same problem and her hip is popping out of place. She has an appointment with the specialist on dec. 9th. I don't know what I will do if she has to go through what I have been going though. Send good thoughts up for her please