Right! Although clonus is usually annoying, it does at least contribute to overall blood and lymph circulation. Exercise causes a release of endorphins, so logically, this raises our spirits. I think, IMHO , that a major reason doctors are so enamoured of prescribing Baclofen is because seeing our clonus bothers able-bodied people. What I mean is,...remember how, when Thalidomide children were born with malformed hands and flippers for arms?...the first thing doctors wanted to do was start operating on them,...just 'removing' those malformed appendages? But, when they were old enough to be consulted, those who had the deformities usually wanted to KEEP those appendages, even when other people saw them as 'ugly'. The little flipper hand could 'feel'. They could touch a cup to see if it was 'warm', 'hot', or 'cold'. True, the flipper might not be able to pick up the cup, but the owner of the flipper hand knew the VALUE of the appendage. And as the owner of the flipper hand, it was the right of the PERSON to decide between keeping an appendage or having it removed. It wasn't right to remove an appendage just because someone ELSE didn't want to have to look at it.
I'm so glad that you only have some minimal burning in your toes. There are nights that my neuropathy keeps me awake. I'm sorry if I've hijacked this Thread. It wasn't my intention.
Post by hybroanglid on Dec 6, 2016 19:37:34 GMT -8
Ooh...VERY interesting theory, Vintage! I think that probably happens a lot. It's also very difficult for an AB to see the value of little things in life--and often life itself--for the disabled, as they simply can't imagine how they would handle our lot if it should befall them. I think the specter of disability is very uncomfortable for many people, even more so when they see how random and egalitarian misfortune truly can be.
Great thread! I encounter this exact same issue and find it to be very annoying. I go to bed with straight legs only to later wake up and find out that they've spasmed into some weird position. Sometimes the spasms are so bad that they cause my legs to tug on the night bag tubing which sometimes pulls my condom catheter right off. I've woken up to mangled legs and a wet bed many times because of that.
I too don't like to take meds for spasm and have never taken meds for spasms. I don't plan on taking them either. What I've found is that not putting a pillow under my feet at night (to off load my heels) helps my legs straighten themselves back out. Sometimes I use a wide pillow that's not as bulky to raise my legs and I find that that works better. Also, I've found that using a big heavy blanket help because I guess it weighs my legs down. I know califanna suggested leg weights which sounds like a great idea but you got to be careful because it could affect circulation or cause sores from being there the whole night.
Since your legs bend at the knee, it'd be more effective to prevent your knees from bending than to prevent your feet from moving. I have had nights where I put my over-the-bed table over my knees (hovering above the knees, not directly on them) and that worked great with preventing the legs from moving around. Only downside to that method is that sometimes the bang if your knees against the tables can wake you (and maybe others) up. If you have a thick blanket or padding under the table to use as protection, it should be fine!
DJ, I want to correct your review of what I said in my post. "However, do not sleep all night in them because you could cut off circulation." My suggestion of using leg weights is prior to going to sleep. The weights are only used to apply pressure so that the contracture releases. This happens over a long period of time. The ideal method to straighten legs is sleeping on your stomach but most people do not like doing it
Inspiration comes and goes but when it arrives, oh how I cherish it.
Since your legs bend at the knee, it'd be more effective to prevent your knees from bending than to prevent your feet from moving. I have had nights where I put my over-the-bed table over my knees (hovering above the knees, not directly on them) and that worked great with preventing the legs from moving around. Only downside to that method is that sometimes the bang of your knees against the tables can wake you (and maybe others) up. If you have a thick blanket or padding under the table to use as protection, it should be fine!
That is a great idea DJ. I'm going to adapt it a bit to suit my needs/equipment better. I have ordered some MDF board and upholstery foam. I'm going to lock this in place across my bed using the bed rails as the support frame. Hopefully this will block my spasms to a point where my legs can return to a resting position themselves. We shall see...
Looking at this from a different angle (no pun intended ... OK .. Pun intended!!) www.cyclonemobility.com/f.e.s/what-is-fes Have you ever had FES therapy? This is a great way to deal with spasm as well as many other health issues. Are you English? American? Or .... OK, OK, another useful thing to know as the possibilities and resources for different parts of the world can be advised on. I'm desperately trying to get a FRS bike at the moment!!!
I had FES therapy over a number of months at physio following discharge (spinal specialist). It did not provide any significant benefits to me so I decided against continuing or purchasing one. I do use a standard leg and arm bike without the FES (motomed).
I'm in the UK. I had a horrendous customer experience on a large order with cyclone mobility and will never use them again. If I was going to buy one I would go with anatomical concepts (http://www.fescycling.com) who are genuine specialists. They can also retrofit standard leg bikes if you have one which reduces the cost compared to a full FES setup.
That is a great idea DJ. I'm going to adapt it a bit to suit my needs/equipment better. I have ordered some MDF board and upholstery foam. I'm going to lock this in place across my bed using the bed rails as the support frame. Hopefully this will block my spasms to a point where my legs can return to a resting position themselves. We shall see...
Great idea! The MDF over your knees should work well. Be sure to post pics of it when you're done making it!
Right! Although clonus is usually annoying, it does at least contribute to overall blood and lymph circulation. Exercise causes a release of endorphins, so logically, this raises our spirits. I think, IMHO , that a major reason doctors are so enamoured of prescribing Baclofen is because seeing our clonus bothers able-bodied people. What I mean is,...remember how, when Thalidomide children were born with malformed hands and flippers for arms?...the first thing doctors wanted to do was start operating on them,...just 'removing' those malformed appendages? But, when they were old enough to be consulted, those who had the deformities usually wanted to KEEP those appendages, even when other people saw them as 'ugly'. The little flipper hand could 'feel'. They could touch a cup to see if it was 'warm', 'hot', or 'cold'. True, the flipper might not be able to pick up the cup, but the owner of the flipper hand knew the VALUE of the appendage. And as the owner of the flipper hand, it was the right of the PERSON to decide between keeping an appendage or having it removed. It wasn't right to remove an appendage just because someone ELSE didn't want to have to look at it.
I'm so glad that you only have some minimal burning in your toes. There are nights that my neuropathy keeps me awake. I'm sorry if I've hijacked this Thread. It wasn't my intention.
Interesting! I know when I was in rehab I was thinking "what the heck is going on?!" when someone's feet started tapping on their footplate. I leaned that it was just a spasm and a couple months later when I got it, I learned that it was called clonus. I can completely agree with it contributing to circulation because normally my blood pressure is very low, but when I get spasms I feel instantly energized and I'm left with a warm feeling after it goes away!
DJ, I want to correct your review of what I said in my post. "However, do not sleep all night in them because you could cut off circulation." My suggestion of using leg weights is prior to going to sleep. The weights are only used to apply pressure so that the contracture releases. This happens over a long period of time. The ideal method to straighten legs is sleeping on your stomach but most people do not like doing it
Ok. Thanks. I don't remember exactly either, but mine would have been much sooner than that, because it started while I was still in the hospital...and I was only there for 2 1/2 months. (I say "only", but it seemed like forever.)
Post by donnaptwithsci on Dec 8, 2016 19:25:12 GMT -8
wow, guys....there can be serious side effects from just stopping Baclofen... That is a medicine that should have a ramp up and a ramp down. It also is a med that a person will accommodate to over time. I don't like meds either, but it is important to pay attention to those kind of warnings on the information piece that comes from the pharmacy.
Clonus is different from a spasm... and spasms can be different from spasticity. Clonus and spasticity are related in that they happen because the normal reflex arc in a SCI or brain injury is disrupted. A spasm can happen with or without neurological damage. Clonus is triggered... usually by a slight stretch to the heel cord or even a relative quick movement. Spasticity usually occurs in an extension pattern or a flexion pattern. The spasticity I have, I can feel it before I can actually see it and it builds up until my legs reach the peak of the motion and then it ebbs away....
I'm chiming in on the thread because one it seems like people may be talking about different types of problems that usually have different interventions... like contracture vs. a spastic pattern leg movement. If you are in need of stretching out a contracture, it's good to understand that each joint is a pulley system--each joint's movement has an influence on the joint above and below it. So putting a weight on the top of your knee may help stretch it, but there will likely be some carry over to the hip and maybe the ankle... Each exercise needs a cross check to make sure that it is actually doing what you think and does not potentially harm a different area. I wouldn't recommend sleeping with weights on your knees to stretch them. --just my two cents.
Since your legs bend at the knee, it'd be more effective to prevent your knees from bending than to prevent your feet from moving. I have had nights where I put my over-the-bed table over my knees (hovering above the knees, not directly on them) and that worked great with preventing the legs from moving around. Only downside to that method is that sometimes the bang of your knees against the tables can wake you (and maybe others) up. If you have a thick blanket or padding under the table to use as protection, it should be fine!
That is a great idea DJ. I'm going to adapt it a bit to suit my needs/equipment better. I have ordered some MDF board and upholstery foam. I'm going to lock this in place across my bed using the bed rails as the support frame. Hopefully this will block my spasms to a point where my legs can return to a resting position themselves. We shall see...
Looking at this from a different angle (no pun intended ... OK .. Pun intended!!) www.cyclonemobility.com/f.e.s/what-is-fes Have you ever had FES therapy? This is a great way to deal with spasm as well as many other health issues. Are you English? American? Or .... OK, OK, another useful thing to know as the possibilities and resources for different parts of the world can be advised on. I'm desperately trying to get a FRS bike at the moment!!!
I had FES therapy over a number of months at physio following discharge (spinal specialist). It did not provide any significant benefits to me so I decided against continuing or purchasing one. I do use a standard leg and arm bike without the FES (motomed).
I'm in the UK. I had a horrendous customer experience on a large order with cyclone mobility and will never use them again. If I was going to buy one I would go with anatomical concepts (http://www.fescycling.com) who are genuine specialists. They can also retrofit standard leg bikes if you have one which reduces the cost compared to a full FES setup.
Interesting!! So does the passive movement stretch your legs allowing them to relax? I am looking at FES therapy very carefully at the moment. I wont comment on Cyclone. These look very well set up too! www.fescycling.com So would you not consider repeating a course of FES therapy as this means no drugs! Stretching in a correct and natural way. Plus the additional benefits as well. The difficulty always appears to be as an able bodied person you can move in your sleep so your body doesn't become uncomfortable and tighten up. Then we have to lie immobile for hours and the body screams "I don't like this". Understandable. This is why I'd hoped suggesting natural stretching might rebuild signals so you relax?!
I have clonus, spasms, and spasticity. Yes, each is different. I regret having taken Baclofen because of its ability to damage nerves. I was in a hospital and later a nursing home when I was regularly being given Baclofen. I didn't have good internet connection, and during the first ten months, some months none at all. Sometime after those first ten months was when I got wifi, I Googled Baclofen and found out that it could have been interfering with my nerves' attempts to heal themselves, so I quit taking it immediately. No doctor or nurse ever mentioned anything about tappering off of it. Maybe my prescription already said "as needed". Maybe my dosage wasn't high. But, I don't recall any discussion as to "why" I wasn't taking it any more. And I did stop immediately after I read about Baclofen's potential to impede nerve healing.
As Donnaptwithsci said, abruptly stopping Baclofen can be dangerous. To me, this is another good reason not to begin taking it.
Dr. John McDonald has been quoted as saying, "Our recent work demonstrates that baclofen impairs recovery of function and it is simply an agent that should only be implemented when everything else has been tried."
I haven't seen this statement by Dr. McDonald published in any research paper, but I can only imagine fight that the makers of Baclofen would put up against a revelation of this sort. For me, the side effects listed below are powerful enough deterrents for using the drug.
those side effects are serious and have experienced some, I'm going back to taking dantrolene for now until I can get a prescription for medical marijuana and see how that works for me. I stopped the baclofen cold turkey and nothing real serious happened except more muscle tension and spasms.