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Anyone use Nidra bands for restless legs (RLS)?
As I researched my RLS issues I came across these bands that wrap around you legs under the knee. They have helped my RLS a lot and were mostly covered by my Medicare. Someone comes to your home and shows you where to place them and adjust the levels. It isn't painful. Just a tingeling sensation for the 30 minute session. My doctor have never heard of them because they are so new. Im still on Requip but hope to change to something else because this isn't a good way to go. I was put on it years ago before they knew the issues. But I have to say that using both the med and the bands I have evenings when I don't need a session at all.
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@lauriefeenstra
Hi Laurie, This may seem silly but I saw on Temu.com a some knee massager bands that also have heat. They only cost 22 bucks and may be worth a try. I have the Nida bands and they do help along with Requip. I also take hot baths with epsom salts and a claming bubble bath and soak as long as possible. Also I put ice packs behind my knees for a while. Hot to cold seems to help. I wish you good luck with finding a lasting solution. I understand.....
Does anyone here have RLS related to iron deficiency? Mine is not exactly painful but irritating enough that I have to get out of bed and walk about 50-100 yards to quell it.
You should have it checked by your doctor. Low iron can be a factor for
sure. Good luck.
@steven46 Years ago, the Restless Leg Foundation sponsored some research where donated brains of people who suffered from RLS were examined and low iron (in some specific area of the brain) was the very common finding--and consequently linked to RLS. This study involved a good number of donated brains (if I remember, around 300) so low iron (in the brain) has been established to be related to RLS symptoms. For some people with RLS, an IV iron infusion can be very helpful, I understand. Did NOT work for me. If this is something you want to pursue, you want a knowledgeable doctor ordering this treatment--the specific type of iron (I've read) is important and it needs to be given in an infusion center, where you are watched by nurses. I had my IV iron ordered by a RLS doctor--it wasn't something my primary doctor had ever heard of. If you have not yet been treated for RLS with a medication, go to the Restless Leg Foundation website and read about augmentation that comes from taking dopamine agonist drugs. These drugs (which work initially) are known to cause horrific side effects in time and they are no longer recommended for new onset RLS patients. For years, they were the first line recommended drugs. Now there are not. Unfortunately, doctors who are not RLS experts have not yet caught up with this fact and still prescribe them. In the UK (Britain etc) there is a law that dopamine agonist drugs can no longer be prescribed for RLS. Google this. Educate yourself and advocate for yourself. The Foundation website has lots over great information--you don't need to be a member to view it. Best of luck to you.
@missjb thank you for the info. So far, iron supplements don’t raise my ferritin level which is the only blood iron marker that is low. I had an iron infusion about 9 months ago and that both raised my ferritin and relieved the symptoms. The symptoms returned as the ferritin level dropped. I’m scheduled for another iron fusion in a few weeks. You’ve given me some good direction to investigate further.
@steven46 It sounds like you have a classic case of RLS. From my position of needing nightly medication and the occasional use of the Nidra bands, your treatment seems straight-forward in comparison. (I am jealous)
Unfortunately, the majority of RLS sufferers seek treatment from their primary doctor, someone not versed in IV iron. It sounds like you are receiving the best care from a knowledgeable practitioner!
Weirdly, when I had the one IV iron dose, my ferritin shot up to 800 and something. Every year since then, it's come down about 100--so still (4 years later) mine is elevated (in the 400s). No symptoms from this (and it doesn't worry my doctor), but it's odd.
Despite my lack of response to IV iron, my RLS doctor checks all my iron blood work yearly. Your experience is a reminder that everyone with RLS should have this done. Since low brain iron is the root-cause of most (if not all) RLS, there should be more discussion of this in our Mayo forum. It is so good you have shared your experience.
What you seem to have is efficacy--responding with no RLS for months at a time. That is great!
I do feel fortunate to have a pcp who is open to expanding his expertise and actually listens to me. I feel really optimistic that we can get on top of this.i do wonder what precipitated this deficiency.
@steven46 For at least 10 years, I thought my RLS was a muscular problem. It began while I recovered from a very severe tendon injury and I was forced to sit most of the time for 18 months. I went to physical therapy 4 times over the years, trying to address my symptoms. I kept wondering what I did in the daytime that caused this problem at night.
When it was finally diagnosed, I shifted to thinking about my symptoms as being like a seizure--neurological and beyond my control. Before that, I mentally wanted a cause-and-effect explanation in terms of activities--and wondering drove me crazy...
Once I knew it was RLS, I started to remind myself that brains have both conscious and unconscious. The unconscious plays into my RLS. I was never an anxious person, but RSL made me anxious about sleep (which then made sleeping more difficult). Also, anxiety causes muscular tightness and my legs become tight during RLS episodes. I suspect tight muscles are a RLS trigger for me and maybe this can be very subtle and still set me off.
The physiological piece of the puzzle--the "underlying why"--is a question mark. And, unlike you, it seems that my RLS isn't related to lack of iron (in some particular part of my brain).
I try to focus on the fact that I'm not plagued with something worse. My RLS presents as painful, never much jerking involved. It's like my jerking can't happen (to create a release) and this builds as unbearable pain. On the brighter side, unlike neuropathy, it isn't all day--all the time--pain. It could be something worse.
I discuss the "why" question with my doctor, but he contributes more by successful treatment than conjecture about "why." Maybe there was some internal nuanced "why" in my life that affected my brain--but nothing I picked up on at the time...
Pathophysiology is not part of normal aging, but aging makes us vulnerable to pathophysiology. Maybe, some gene has replicated (in me) incorrectly (due to age) and changed some little "something" in my brain. But, this doesn't explain why several in our forum describe having had RLS for 30 years with much younger onset.
You bring up the profound question of "why." I spent years wondering this myself. Over time, for practical reasons, successful treatment has become my focus, but I agree: there should be a concrete reason and I do wish I understood it.
You are fortunate with your open-minded doctor. I shudder to think of the AI medicine that awaits all of us--virtual doctors cook-booking treatment without the part where someone smart is thinking with an open-mind. Not all doctors are equal and you, it seems, have a good one.