Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
I am a longtime RLS sufferer with what my sleep doc (chief of clinical sleep neurology at a major teaching hospital) says is one of his most extreme cases. I was on Clonozepam for 16 years (that's not a typo), and tried DAs but had augmentation with both Pramipexole and Ropinerole. I am now on 400 mg of Lyrica along with 1 mg of Lorzaepam; this combination is yielding about 4-5 hours of inefficient sleep per night. I also tried and failed as a subject in a study using the SENSUS device. Now my doc is recommending that I buy a sequential compression device for my legs and feet. I previously bought lymphadema bags on eBay but they didn't help me; my doc would like something that wraps around my ankles and feet (the bags were not compressed to the feet). Am wondering whether anyone has a recommendation. I've seen a lot of products online (Kendell, ArtAssist) but my doc doesn't know one from the other. Note that SENSUS provide electrical impulses which is different from sequential compression (most if not all of you know this already). Thanks!!
I haven't tried any of these but hopefully you will hear soon from someone who is familiar with their use.
In the meantime, referring to compression, brought to my mind the simple use of ACE bandages. Some members have at times used these to give compression and some element of relief My own feeling is that if ACE banadages worked very well we'd all be wearing them, but who knows, they could be worth a try at little cost.... and could be wrapped as tighly as wished. Compression stockings have also been discussed.
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There is so little evidence here about these devices. The only study I'm familiar with definitely showed improvements for most participants. These machines are often expensive and you have to wear the device up to an hour before bed. For many of us, that makes it hard to incorporate into our lives - so if other methods work, we tend not to try this. And, I'm not sure how you use it if you have symptoms that last many hours a day.
I think Polar Bear's idea may be a good one - at least try something like surgical quality stockings and see what happens. For many of us, it either works great or doesn't help at all. If it helps - even a bit - then you'd know trying one of these devices would be a good thing.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I'd love to try some of those, but the cost is prohibitive. If I was SURE it would work, on the other hand, I;d go for it. But definitely it would have to go around the foot and ankle.
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I don't know, Beth. I just remember reading that you treat yourself before bed, then go to sleep. They are long - cover the body from foot to top of thigh - looks like something I'd want off .
I've been suffering from RLS for decades, and it plagues me at least a few times a week. About 6 years ago, I read about an expensive compression device. It made sense to me, as I saw a possible connection between that theory and how itch "signals" to the brain can be stopped by scratching NEAR--not ON--the affected area. Anyway, I thought I might get a similar response using ACE BANDAGES-- and they WORKED! SERIOUSLY! I do have to wrap up (from my foot to my knee) ASAP, after the first tingling starts, to get the BEST results. If I put it off, it ends up taking longer or I have to wrap tighter. But, ACE bandages have worked so well for me, for the last 5-6 years, that I very rarely need to take my Clonazepam! I don't think I've needed to take it more than a few times (total) in the last YEAR! Now my husband thinks I should try compression socks, but I haven't gotten around to trying them yet.
I've used both compression socks and tensor bandages, but they are just nowhere near enough, and if I make them tight enough to help significantly, they cut off the circulation
It's great - beyond great - that the bandages are still working for you. You might like the socks. The socks come in different grades from high to low compression.
What I'd really love to do is create a set of questions for all of us - so that we could possibly identify who is helped by what. Beth and I are very similar re. how our bodies respond to treatments and how we experience symptoms. The compression bandages and Ace bandages have never worked for me, either, but they clearly work for a sizable minority of people.
As Beth noted, definitely try the compression stockings. They come in different lengths, too. Years ago, a chiropractor would stop by every year and post about how these stockings were still working for him. He used them for years. It's definitely something worth trying for everyone.
As far as I know, there are 2 studies showing the effectiveness of SCDs for RLS. Here is a link to the first one, which is a small study (https://www.researchgate.net/profile/Ar ... 000000.pdf). The following study did something similar, but with more research participants (it's behind a pay wall...sorry). Things that stand out to me: 1. they used an Aircast system, though it looks like they just chose that because that was the machine that they had access to. 2. The people in the study had to use the SCD before bed for an hour, but using it during sleep was "not proscribed", which means they could sleep while using it if they wanted to. So it might be nice to pick a model you think you could use while going to sleep 3. The system they used had a knee length legging, but they don't say why they made that choice. I know knee length is much more common, so maybe that's just what they had to work with.
For me, I've been looking into which systems might be best. The Kendall is nice in that the leggings look comfortable, and it monitors the rate at which your blood vessels refill, so it can maximize the rate at which it compresses and releases (ranging from every 20 seconds to every minute, I think). In the research cited above, they chose 1 compression every minute, but it might be nice to have a faster rate as long as it doesn't hamper your circulation. Sadly, it doesn't seem to let you choose how fast it goes, or how strong the compression is, so you have to hope that the automatic settings are appropriate for your RLS. I think the Aircast is more programmable, but I'm looking into that right now, so I'm not certain.
To ViewsAskew: I was thinking it could be smart to make a survey asking people about how they experience their symptoms, what has worked for them, and maybe some other factors (e.g. family history of RLS, biological sex, age of onset). There is an analysis called Cluster Analysis that might be able to tell from that data if there are distinct types of RLS, kind of like we are now learning that there are multiple disorders that all get lumped together as schizophrenia. I know how to make web surveys and analyze data, but do you have thoughts on the practical side of how to get something like this running?
As for compression stockings, about 10 years ago I got a pair when I had surgery. In the hospital they used a compression device and that was fine, soothing in fact. A few months later I wore them onto an airplane for a long flight. The plane hadn't even taken off and I was getting rid of the stockings which was pretty tricky while strapped into my seat. I absolutely hated them but if they do work for anyone—great. It seems that RLS people fall into two opposite camps with these, as with a lot of things.
Quick update: I rented the Kendall 7325 SCD with a knee-length legging (my symptoms are in both the upper and lower leg) but didn't find it to be particularly helpful. I tried using it for an hour before bed some nights, and also using it while going to sleep other nights, and neither reduced my symptoms nearly as much as just a long session of stretching or using a percussive massager. Going to sleep while using the device was a challenge in itself.
I went through a company called the Medcom Group. I paid $325 for a 1 month rental, and after a bit of a discussion about price, they said they would have been willing to apply half of that money towards a full purchase, which cost about $600 for a refurbished model. If you want to give it a try, your doctor will have to send them a prescription.
RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
badnights wrote: Actually, it's been brutal. I was to go visit my parents on Monday (tomorrow!). When it first happened, during the scream I was already feeling the bitter disappointment that I wouldn't be playing the game (it happened during warm-up! My own teammate stepped on the outside of my knee joint while running at the net. Right on the joint, not near it, on it) Then I realized, as I watched the game from the bench, that I probably couldn't play for the rest of the broomball season, which ends in February. Then after I saw the doctor at Emerg on Monday morning, I learned I would also miss the rest of hockey season, which goes til April.
You are having surgery, will miss the rest of season & your trip to see your parents, and happened by a teammate! Terrible news.
I hope you have a speedy recovery with no additional WED problems. I have had surgeries where the additional meds actually helped WED, I hope it will be the same for you.
thanks everyone for the advice and good wishes! I have seen Mr. Knee God here in Edmonton and have even worse news in a way - or better - not sure how to think of it. Worse, in terms of my life, for the same reason you have, Steve: both ligaments are indeed torn, but the MCL will be left to heal on its own (with careful and abundant PT) which will take 3-4 months. I cannot have the ACL surgery until the MCL is healed. I didn't really understand why, I was too shocked to comprehend. I shouldn't have been, I guess. I shouldn't have expected anything, then I would not be shockable.
So the soonest I could have ACL surgery would be this spring, but then I would miss my fieldwork season; if it was in the fall, I would miss almost an entire season of hockey. I can't tell which is worse; but the choice is probably not mine anyway, it will depend on the availability of surgeons. My sister skated for 3 years with a brace and no ACL, but she says it wasn't very stable. Not liking the sound of that. Sigh.
On the bright side, my daughter probably gets great results from almost anything and would be a terrific subject for a placebo trial Meanwhile I slathered on the Traumeel for my basal joint arthritis the other night, and finally got to sleep only after I went for the Bio-Freeze. Menthol trumps arnica I reckon. Now I can try it out on my coccyx which I cracked falling on ice. It's sore enough for me to feel even more empathy for your inactivity -- but doesn't come close to what you're putting up with. Keeping you in my thoughts!
I'm doing OK, in most respects, but only because I don't let myself think too much, and I signed up for a 21-day yoga thing. The sudden cessation of 5 nights a week of sports had me flirting with depression, so I have to do something. I will sign up with a gym when the yoga is over. Meanwhile I am taking 21 yoga classes in 21 days, and there's a diet to follow as well. I couldn't do it if I was working, the timing is all wrong, and the shopping and food prep take a lot of time; but I had holidays anyway from the trip I had to cancel to get my knee checked out, so I am spending them in Yellowknife. Wondering why I still feel as if I can't get everything done in the day.
I decided to use the yoga diet as an opportunity to go wheat and wheat-gluten free, but it turns out my oatmeal "may contain wheat". Does that mean I am not gluten free?
Also I think next week is supposed to be juices only. I don't think that's the best thing I could do for my knee at this point in its recovery. I think it needs all the nutrients it can get. I have been worried about going meat free, but figured I was doing OK with the beans and other protein sources. But this juice-only thing, that might leave my ligaments without something they need to heal?
I am a bit freaking out because of a discrepancy between what the Edmonton surgeon said to me in person and what he wrote on a note. He said that I should be re-assessed in 2-3 months when the MCL had healed, at which point they would decide if I was a candidate for ACL surgery (!! I thought it was a given! I'm a candidate! I want an ACL!) But in the note he gave me, it says f/u 6/12 which I found out meant follow up in 6 months. That would place it in August, AFTER my field season, but I really need to see someone before then to confirm that I can go in the field without an ACL. etc. So I am trying to get hold of him to clear that up. I don't even know if it will be him who sees me or if his job is done and he's sending my file (so to speak) back to Yellowknife. So confusing.
The only reason I was sent to Edmonton was that the guy here thought I might have some kind of complicated tear that would need surgery within 3 weeks, but the guy down there says I don't. So I missed my trip to my parents just to find that out. I had to do it, but still. It would feel like a more worth-while sacrifice if I had actually needed immediate surgery.
Per the oats, studies show they are often contaminated with as few as 5 parts per million to as many as several hundred parts per million. It varies batch to batch. So, you could be gluten free...or might not.
Um, though this isn't exactly related, I have chondramalacia and have yet to find a good solution. But, there is a guy in a chondramalacia group I'm in who's done a LOT of research about knees and how they heal. I can't think of his name, but I remember him saying some things that were at odds with what most doctors say about regeneration of tissue and how knees and knee components heal. Just like with WED, most docs are going to be behind and not up on the latest - research says an average of 15 years behind. Not sure how that might affect you....
I can see why you'd be upset about what the doc said vs wrote and how it affects your work this summer. And, how going to see this guy totally messed up your plans to see your parents when it didn't really end up mattering. Life isn't fair, is it?
Not know exactly what is going to happen, and when, or hearing conflicting versions leaves us in a limbo which in turn runs out in ripples and effects our whole circle, both social and working.
And then on top of that you are limited physically - good luck with your 21/yoga, I hope you find it beneficial.