Waiting for AFO, anything for knee pain?

[mich5]

I was fitted for my first AFO and am awaiting it. However, my knee hurts a lot, sometimes to the point where I don't think it's safe to be walking around without it giving out. Is there anything to use in this time frame to help with the pain? I'm thinking of buying a knee brace and using it for this week or 2. i hear from my neuro my knee hurts because it's taking all the pressure from my foot not working correctly.

 

[CathyP]

I don't recall my knees hurting from my ankles being weak. I guess since I am over 50 I hurt everywhere and don't notice it . Before I found out I had ALS I had bought the black ankle braces you can find at Wal mart. They helped alot to keep my ankles from turning sideways. Then I got my hard, hot, hideous plastic AFO's. (HA...can you tell i hate them? My insurance would only pay for that particular kind of AFO....but I am thankful to have them and they DO work as far as keeping my ankles sturdy.) I wear AFO's when I go out. In the house I wear Wal mart braces. I recently had to buy another set of Wal mart braces because since they stretch they do wear out. You should try the Wal mart braces. I would think an over the counter pain reliever would help with the pain.

 

[momap53]

Mich, I've had problems with R knee pain too.(R foot drop) Obviously with the R foot dragging and the extra effort it takes to lift the foot the knee joint is going to suffer. As my R leg continued to weaken, I found that without the AFO on, the tendons and ligaments of the knee were subject to some twisting. A knee brace was especially helpful to keep the knee cap aligned. (I use a soft one from W m't. Even good for sleeping) Use ice on the pain 3-4 times daily (I rub the spot with a cube till it melts) I also found some ointment that my Doc prescribed to be helpful. Voltaren.

 

[notme]

The only thing I have found that helps with my knees is a cream ordered by my doc called Voltaren. Within minutes, it seems to help.

My knees get quite bad from using them more when my back goes out.

 

[mich5]

Yes, it seems like it's swollen in my knee (ligaments and tendons seems to sound correct). I do lift my foot higher than normal to walk and my arch is going but I haven't twisted my ankle as yet (perhaps my ankles aren't too weak yet). I took some anti-inflammatory and it helped but can't take it all the time as it's rough on my stomach. I will try the stretchy ankle brace until I get the afo as I'm going to be doing some walking this weekend. I just found my knee brace that I bought at W m't several years ago - I'll try that as well. I'll try the ice, hope it works so that I can stop taking the anti-inflmtry every other day. Thanks. I hope the AFO makes this better so I can continue to walk. I've heard good things from you guys in that it keeps you mobile much longer but also hear a lot about the hot and sweaty aspect.

 

[momap53]

The V ointment is an NSAID too, but will bypass the stomach issues.

 

[skipper66]

I have been researching what I can on ALS since my dad showed symptoms and as of yesterday recieved the confirmation from a ALS specialist that he indeed has it. What I read about it described it as a painless disease that causes paralysis. But, on the forum I'm hearing about alot of people being in pain with it. It is so upsetting. I'm confused on the matter. I was once at least comforted by thinking my dad wouldn't be in pain with this. I am totally having a bad day. Started crying at work etc.

 

[Willow]

I too have foot drop and knee pain. It was explained to me that as the muscle atrophy that arthritis can get into the joint and taking a over the counter pain reliever may help. I find I am having trouble with bruising though and will talk with the Dr. at my next apt. about it. I also have an AFO but after reading here I think I will look for the soft knee brace also.
By the time evening comes around and sometimes earlier depending on the day....I simply can not do the stairs in the house, especially if I have to carry something. Maybe the brace would help support the knee a bit more.

 

[notme]

That cream I listed really works great on me. I can't take NSAIDs as they trashed my kidneys years ago. Be careful of braces if they aren't ordered by a doc or PT. Sometimes, they can actually weaken muscles. For example, I used to wear a back brace all the time. One day, I forgot it at home and pulled my back out. The doc and PT both explained that if a muscle gets used to the support, it weakens, thus making it more susceptible to injury.vof course,vi am not talking about AFOs here, as they are obviously needed to support non-working muscles.

NSAIDS over long-term use can cause all kinds of issues in the stomach and kidneys. Not to mention risk of bleeding.

Anyone with pain needs that pain treated. Under-treated pain causes a ton of health issues in and of itself.vthere are pain meds that are low risk, such as Ultram (without the Tylenol) that are a kind of synthetic pain killer, and not addictive like morphine.

Pain meds have a negative connotation with so many, and they shouldn't. Yes, narcotics cause physical dependence. So what? The alternative is pain that raises blood pressure, causes depression, anger and lessens mental capacity.

Personally,cI prefer to treat pain and otherwise function. Just my three cents on the issue.

They really need to change the textbooks on ALS not causing pain. It makes it so much harder for PALS when doctors don't think they should have pain. How could they not when joints are left to pick up the slack from non-working muscle? Or the never-ending spasms and cramps.

Sometimes I wish there were a way for all doctors to live with every disease they treat for a week. Maybe care would be more humane then.

 

[mich5]

I started wearing the knee brace today and it's helped tremendously. Just bought the ankle brace and will try it. Contacted my dr and he prescribed the Voltaren, so I'll use that when it gets inflamed if the braces have trouble keeping up with my walking! I know what you mean about trouble with the stairs and carrying something - those balance problems! I take the stairs both-feet-on-each-stair one-at-a-time - like when i was 4 years old! But, it works.

 

[momap53]

You will find that the AFO'S are a tremendous help. I would be planning ahead for when the stairs are no longer an option.
Don't forget the ice! It's simple, cheap, very effective, and NO side effects!

 

[mich5]

yes, the ice will probably work well. Don't know why I didn't think of it since it feels 'swollen'. Thanks for the tips. This will definitely get me through the next few weeks until I get my AFO. And, of course, it'll help when my other foot starts giving me problems. I've moved my bedroom downstairs already in anticipation of not being able to do stairs. The washer/dryer are in the basement so I'll just have to stop doing laundry once I can no longer manage the stairs.

 

[notme]

Wow, Deb. I keep ice packs in the freezer and didn't even think to mention the most helpful and basic help for swelling! Frozen corn or peas work great as an ice pack because they mold to areas easily. Remember not to ice for more than 20 mins at a time and to use a barrier between ice and skin.

Amazing how easy it is to forget the basics?

 

[glupavomomiche]

The AFO is great but in my case, the knee pain and problems continued. So I ended up having my AFO converted to a KAFO. I have a BlueRocker and the K part is called a Combo. I can take it off the AFO if I want to. It keeps my knee in line and from going back too far, which was the cause of my pain. Just an FYI!

 

[HelenL]

I've had ankle pain for 17 years, later foot drop in the same leg... not much knee pain luckily. I used a magnetic wrap for my ankle to keep down the pain and swelling. Look for them at the usual on line spots, or check out n i k k en dot com to find a distr ibutor in your area. I swear by them to help pain and swelling, and still use the the insoles in my shoes for my purple feet.