pain in knees (lower motor neuron)

[GrandmomMarci]

I searched but couldn't really find anything on this. Diagnosed Aug and Nov 2011, All lower motor, no signs of upper. I heard PMA is slow progression - don't believe it as I can only manage few steps with walker -usually transfering. Feet swell horribly, sometimes turn red and purple...but goes back to normal during sleeping. I sleep with pillow beneath knees-because without it hurt. Now I wake middle of night with terrible pain..like knees are locked in that position. Hubby has to physically bend my knees, which starts out really painful...then it's much better. 2 hours later it starts all over again. Does anyone else have this problem? It's like the tendons need to be stretched.
Thanks

 

[Mpiresteve]

Re: pain in knees

Call your doctor, tell them that you are in pain. As the muscles start to fail, they start to hurt. Sorry that you have to deal with this.

 

[tmasters]

Re: pain in knees

Has this been going on for a while or just a few days? Swelling and discoloration and pain in the legs can be a symptom of DVT or blood clots. This is a serious condition that could lead to pulmonary embolism and requires immediate medical attention.

Okay, had to say that, just in case.

If this has been going on for several weeks or months, read on: Upper motor neuron signs include stiffness and spasticity, which will cause your muscles to tighten and lock up your joints. But you say you have only lower motor neuron signs. Perhaps UMN is developing. This doesn't explain the red and purple spots though.

It also could be unrelated to ALS. I'm not qualified to give medical advice so I think you need to see somebody who is. Soon.

-Tom

 

[Georgia Peach]

Re: pain in knees

Not to alarm you but you need ultrasounds of your legs. My husband has had both DVTS and blood clots in his lungs. Do NOT let your husband rub the swollen part of your leg like I did. We think I broke off the first blood clot since I didn't know what it was.

Keep your feet elevated when you are sitting. AND ask about compression hose immediately. TEDD support stockings help immensely.

Good Luck.

 

[jb63]

Re: pain in knees

I searched but couldn't really find anything on this. Diagnosed Aug and Nov 2011, All lower motor, no signs of upper. I heard PMA is slow progression - don't believe it as I can only manage few steps with walker -usually transfering. Feet swell horribly, sometimes turn red and purple...but goes back to normal during sleeping. I sleep with pillow beneath knees-because without it hurt. Now I wake middle of night with terrible pain..like knees are locked in that position. Hubby has to physically bend my knees, which starts out really painful...then it's much better. 2 hours later it starts all over again. Does anyone else have this problem? It's like the tendons need to be stretched.
Thanks

GrandmomMarci,

It certainly is wise advise to look for dvt's (just went through a big time occlusion not related to immobility), but here are a few other things to consider. I have lower MND also and feet swell and turn reddish because the loss of muscle which aids in the flow of blood that return to the heart.

Additionally if your tendons are not stretched, they will shrink and become painful. I have to have my position of my legs changed every 2 hours at least due to locking up. Knees suported, feet supported and still if I am in one position for to long, the tendons freeze up.

I am going to make a foot board so I can keep my feet in alignment, I do stretching exercises with PT, and am looking for something that will attach to my slippers so I can move my feet around. My legs flop and turn into twisted positions that pull and hurt like heck.

 

[jb63]

Re: pain in knees

I searched but couldn't really find anything on this. Diagnosed Aug and Nov 2011, All lower motor, no signs of upper. I heard PMA is slow progression - don't believe it as I can only manage few steps with walker -usually transfering. Thanks

Forgot to add a word about progression-- again my motorneuro doc says stats are derived from a large data base with all kinds of factors thrown in. You can have slow ALS and fast PMA, it is different for everyone. You may have a circulation problem.

Keep yourself safe. Plan ahead for what you may need in the future.

I was started on a med that improved my feet almost overnight. I hesitate to write what it is as it may not be right for you. Ask your doc!

 

[kmendsley]

Re: pain in knees

I find the less I get up and get around...the worse my legs feel...like excruitiating pain. I would check to make sure it is not what others have mentioned on here about DVT's /embolisms and such.

For me, in PT, I work on a stationary bike that is the sit down kind(don't know what it is called sorry...but your legs and your bottom are seated at the same position...not like a regular bike) and that helps pain. Sometimes I think it is just my circulatory system not working too well when I am having to sit all day because of weakness. I just do 5 min twice a week on this and it helps A LOT!

Also something that might help right now is compression wraps..the kind you would get if you sprain your ankle or something. I wrap my knees or ankles sometimes at night if they are swollen...make sure they are not too tight...but this helps to have the pressure on too. I also find layering up the blankets, and turning down the temp is good too with the pressure on my body for different aches and pains.

Hope that helps...good luck!

 

[HelenL]

Re: pain in knees

I also have mostly lmn signs, and also have a left foot that's a beautiful color of purple most of the time. Now, even though purple is one of my favorite colors, and my birthstone color, it is less than attractive on swollen feet!

Are your legs and feet really cold as well? Mine usually are, and I did have them tested last year. I guess it's something to do with the blood vessels going into a spasm, so I was given a prescription that I finally filled in January... what a difference it made in the color, and somewhat in the swelling! So, I would recommend seeing what your doc says it is, and see if a simple pill will help. I guess it can also lower your blood pressure.

The other things I do for my feet are to wear a brace at night to help the foot drop; and I finally pushed a pillow to the end of my bed under the covers to elevate the blanket/sheet to lessen the pressure on my foot. I put a smaller pillow under my foot so it can also be raised a bit more. My foot looks great before I get out of bed, not so much at night when I go to bed. FYI, I also have a magnet mattress pad on my bed, as that's also supposed to help with the circulation, but not sure as I've been using it for about 15 years.

 

[GrandmomMarci]

Re: pain in knees

Thanks all. I will talk with my family doc, and then see the neuro feb.29th. Been moving knees and legs more, seems to help. Swelling still there, and hubby thinks my knees swell too. I hate this disease.