purl2 07/06/17
Last reply 10 months ago
Knees!

I just wanted to ask if anyone is dealing with their knees HYPER-EXTENDING? I’m dealing with Primary Progressive, so don’t really know if this is unique here.
If so – what are you doing about it?? I haven’t done regular physical therapy in years – but keep up with my yoga myself, and other exercises each day. But at the moment it’s becoming quite an annoyance and increasingly painful when I stand (and it’s not like I’m on my feet for hours!!).

Thanks for any input!

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cameron
11 months ago

Yes, yes, yes! My hyper-extended right knee eventually started malfunctioning in a big way. I’d been using an FES device successfully, but the hyper-extension had been going on since diagnosis i.e. 12 years. My physio told me that the knee degeneration was entirely to be expected and – this was the killer blow – I needed a knee replacement, but if I had one, it would very likely worsen the MS on a permanent basis. This was because during the recuperation period, muscles would weaken through lack of use. For around six months, I had the knee strapped by the physio every week and that relieved the pain. Then the same physio offered to come with me to my FES appointment: she had a talk with my physio there and between them they came to the conclusion that the only option was an orthotic. One was produced for me to try and it was transformational. It removed the pain, encouraged the knee to move normally and sorted the dropped foot. I’ve often posted about this device, because it’s quite recent and not many clinics (apparently) have heard of it. It’s called Dynamic Walk, made by Fillauer. I got mine on the NHS, but the full price is around £300 so not ridiculous if you can’t get it funded. If you look it up on google and YouTube, you’ll see how it works. It’s carbon steel, weightless, with a spring that pushes the knee into the right position and a cushioned support for the back of the calf. I have the double-sprung model but depending on how bad your leg is, you might get away with the single sprung one. It has at least doubled my walking ability.


merfield
11 months ago

Is this what you meant @cameron: http://fillauer.com/Orthotics/Dynamic-Walk.html ?
My knee ‘collapses’ on me sometimes….is that the same thing as hyper extension?…..on my left leg, the one that doesn’t ‘do as it’s told’. And @perl2: sounds like useful advice from @cameron – hope it helps you. I’m PP as well so if that’s my problem too it could help me also.


cameron
11 months ago

Yes, that’s the one. Hyperextension is the most extreme bending of the knee, pushing it into a rigid position in the body’s attempt to keep stable. It is not the way the knee bends naturally and not something you would do if walking normally. Twelve years of doing this trying to compensate for my demyelinated hip weakness caused big musculo-skeletal damage to the knee – as it apparently was bound to do while walking in this way. A new knee would solve the problem BUT the need to keep MS-damaged nerves and muscles through the body in good shape is even more important (I’m told). Going off your legs, even if it’s only temporary (and I’m in my sixties, so I wouldn’t recover as quickly as a younger person), may cause permanent loss of function. Hence the solution of the DW. It sounds as though your ‘collapsed’ knee is definitely damaged in some way – whether you are bending it wrongly or doing something else it doesn’t like. My ‘collapsing’ eventually became ‘very painful collapse’. The DW is supremely comfortable to wear, because it cushions the back of the calf and you immediately feel stronger in your whole lower leg. It’s also very slightly raised at the front, which sorts foot drop. It’s different from the more usually-prescribed Ankle Fixed Orthosis, because the springs propel you gently forward and are flexible enough for you to go up and down stairs. Hope this helps – as I said, not every physio or orthotist may know about it. You may have to be your own advocate.


purl2
11 months ago

@cameron and @merfield — THANK YOU so much! Cameron your description is very eye-opening
for me. I have never heard of this device, and seem to have had some pretty shoddy/basic physio in the past, so I stuck it out by myself. But I am now going to investigate your recommendations and see what I can come up with.
I also am in my early sixties and thought for sure I needed a knee replacement, and I’ll still go for x-rays etc.,
but this at least is another avenue to check out, and I’m going to actually print out your response so I have it with me!
Thank you again for the detailed info – a real help — Barbara


candy88
11 months ago

This is a really interesting post to come across… I have found that my keeps keep hyper extending and popping out of place for a couple days lately. It didn’t occur to me that it could be ms related. I’ve never had knee issues in the past although I have currently injured the ligament in my foot which I assumed was causing the knee trouble due to walking differently. Do you think this something I should discussing with my neurologist?


potter
11 months ago

I am in my 60’s and have been told I need both knees replace by my GP. I take a tablespoon of golden raisins that have been soaked in good gin for a month every day. The only times I have had my knees fall apart was when I didn’t eat the raisins for a couple of weeks. Both times I hadn’t gotten around to putting them on to soak. I know it sounds strange but it works, even my husband who scoffs at this type of thing believes it works also. Some how the pine in the gin reacts with the golden raisins, you can’t use regular raisins. I complain when I have to buy pricey gin, I usually get the one from England that is wearing a black hat for a cap. My husband points out to me that it is cheap compare to most medicine. I am not much of a drinker and I hate gin so I take it like a kid getting cough syrup. Dr Oz did a segment on his show a couple of years ago about it and how great it worked, I was already using it. I’m not saying this will fix your problems, it has prevented me from having surgery so far. Potter


noelie
11 months ago

@purl2 yes, i am hyper mobile and my inability to walk for a while got my muscles so weak that i ended up walking with bent knees to avoid my left knee snapping into hyperextension at every step. It kept getting worse until a pilates teacher recommended that i did some knee extensions, https://www.youtube.com/watch?v=2VJNa2VyGyE i used an ankle weight . Then my neuro physio explained that a curved back doesn’t help either, so tilting the pelvic floor forward can make things better. A visit to physio can’t hurt.


cameron
11 months ago

@candy88 – I’m not medical, but it sounds like the dreaded ‘secondary damage’ – i.e. it’s not the MS itself, it’s the damage caused by the MS. Too much strain being put on parts of your skeletal structure because the body is compensating for weakness elsewhere. If it is that (and a good idea to discuss it with the neuro), at least there are solutions!! @potter, I’m intrigued! I wonder if you left the raisins to dissolve completely, would it still work? Then you’d have something like the sloe gin we make here in the autumn, which I have to say is extremely tasty…. xx


purl2
11 months ago

@noelie – yeah – the whole scenario is frightening. I have done knee extensions – since my patella doesn’t seem to track properly, and these lifts with the weights are supposed to strengthen the thigh muscles. But the hyperextension is different and seems to be directly MS related.

And as our bodies are all connected (head to toe) I still do see my chiropractor. And @candy88, I had several nasty falls many years ago which were, like @cameron said, the secondary damage as a result of the MS… so the chiropractor seriously helps. It doesn’t seem to save my knees however … have to check out physio now.

@potter – marinated raisins??? who knew??

Thanks everyone – I’ve already started to make my phone calls this morning. :))). Feeling at least more hopeful!


potter
11 months ago

Cameron I have never had sloe gin not much of a drinker. Why don’t you give it a try and let us know. It might be easier to take if it was blended into a liquid, I drain the gin off of the raisins. The taste is so awful to me I shudder when I take it, so you know I wouldn’t take it unless is was working. I am kind of a pansy when it comes to bad tasting food. Potter


avengr13
11 months ago

@potter hi lady. I love sloe gin although my husband frowns on my drinking except occasionally. Does the alcohol evaporate? Or does it make you tipsy?


bowlocks
11 months ago

A Fixed Swedish Knee Cage sorted out my problem, although it took a year, or two.
http://www.chaneco.co.uk/orthotic-products/hip-knee/hyperextension-braces/fixed-swedish-knee-cage.html


potter
11 months ago

As far as I can tell the alcohol evaporates, but I drain the gin off the raisins so I may not be a good judge of it. You can tell your hubby to think of it as medicine. I am surprised that people haven’t heard about the raisin and gin fix it was quite the rage here about 5 years ago. Potter


purl2
11 months ago

@potter — a question – is the ‘gin -raisin’ remedy actually a cure though for your knees? Or simply good for reducing pain? I worry about that – I feel as though I’d want to know if my knee is still rubbing bone on bone, and the pain is just masked? Trust me, I realize that at this point I’d take anything – and pain reduction is always a good thing!


potter
11 months ago

I don’t think it is a cure but it has kept my knees from falling apart. It doesn’t get rid of all of your pain, my knees still have some pain. I know there is segment on it, on Dr. Oz internet site, he explains how it works to Joan Rivers. This episode was on several months before she died. Potter


purl2
10 months ago

@cameron @noellie and @merfield — Just an update — I’ve been to the Physical Therapist, no aide recommended. But – a lot of exercises that I can easily do at home, including some with ankle weights.
I have to say that my knees feel so much better – a bit stronger overall. I mean, at least the hyper extension seems a bit less and I have quite a bit less pain – it’s amazing! I just wanted to thank everyone and recommend the little exercises – including, if you can do them, especially this one I really like: – laying on your stomach on a blanket, and lifting the foot towards your butt. 10x each leg. 3 reps. I’m doing these with the little ankle weights and it’s HARD!!! But I get through and always happy it’s done.
(now if only these would cure M.S……………)

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