My new Relaxis

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.]
legsbestill
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Re: My new Relaxis

Postby legsbestill » Tue Feb 21, 2017 11:21 pm

Relaxis is definitely helpful and I don't think I will be returning it at the end of my 30 day trial period. It is not a miracle worker and does not deliver a killer blow to full on powerful symptoms but it does really help and it is wonderful to have something to reach for when those ghastly very early tingles that pressage an attack wake me up. I love that it isn't a drug. I have a feeling that I read somewhere that the effects can be cumulative and I could believe that - I think my body is adjusting to it and I am allowing myself to hope that the positive impact will increase. My symptoms have improved over the last few months - I think due to increased iron levels. My iron is still only at 79 so I am daring to hope that if I get them even higher I might be able to cut the drugs even further.

I'm not sure that Relaxis would have helped so much when I had stronger symptoms - I couldn't say that it would not have but it is definitely more effective when the symptoms are less strong. Like many others, I am fixated on keeping my drug use as low as possible and I think Relaxis has a big part to play in that.

Polar Bear
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Re: My new Relaxis

Postby Polar Bear » Wed Feb 22, 2017 10:09 am

You have given quite a positive review of your usage of the Relaxis, thank you, we all need to hear how well these items work, or indeed don't work.
Please do keep us updated.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: My new Relaxis

Postby ViewsAskew » Wed Feb 22, 2017 7:39 pm

Anything that helps some and isn't something to put into my body - that's likely a very good thing.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

yawny
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Re: My new Relaxis

Postby yawny » Thu Feb 23, 2017 12:31 am

Legsbestill,
Thanks for the detailed review of your experience with the Relaxis Pad...maybe you'll get to a place in your symptoms, with higher iron levels, where the pad will be even more effective. I hope so! I, too, would love to keep my medication use as low as possible and am curious to try the Relaxis Pad at some point. But it seems I just keep adding and increasing my medications. My biggest problems are PLMS, twitching (Benign Fasciculation Syndrome), and my frenemy, Anxiety (I'm starting to question if she's really that good a friend...always there for me but...). My understanding is that PLMS features involuntary movements while sleeping. I get them as I start to drift off to sleep and am repeatedly woken up until eventually I fall asleep (from exhaustion or medication effectiveness, not sure) and throughout the night I'll wake from the same movements. I think that because of my anxiety, I'm unusually aware of these movements and they feel like body earthquakes, but my husband can be laying next to me and doesn't notice them (whatever, he doesn't notice my new haircuts either). I'm so shaken up by the abrupt wake up that I go through an anxiety response. I'm working on changing that response and wondering if the Relaxis Pad could provide a sort of soothing, lull-you-back-to-sleep effect?

legsbestill
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Re: My new Relaxis

Postby legsbestill » Thu Feb 23, 2017 7:10 pm

Oh Gosh, Yawny, those sound like difficult symptoms to get to grips with - your anxiety (which I usually think of as a psychological condition) even sounds very physical in its presentation. And you have tried so many options - I mean, they sound like symptoms that might be expected to respond to mmj but you've tried that and I think I remember you posting elsewhere that you listen to audiobooks or podcasts (I find these great for overcoming the black moods that can descend in the middle of the night).
I can see why you ask the question about the lull-you-back-to-sleep possibilities of Relaxis - it does sound as though your symptoms might respond to something like a physical form of white noise. It's just that I'm not sure Relaxis would be exactly what you need. It's really hard to say but if I had to predict whether Relaxis would work for the involuntary movements you describe, I would probably say no it would not. I think the particular vibrations of Relaxis might be a little too ... specific, abrasive, unsoothing, I'm not sure any of these is exactly the right word but something along those lines. Also Relaxis gradually fades out after 30 mins so wouldn't necessarily be on when you jerked awake - although you can put it on again really easily. I'm getting a bit personal here but maybe a ... er ... more conventional vibration device might be helpful and soothing? You could always try Relaxis given the 30 day return policy, I suppose.

On a different note, can I take this opportunity to take virtual notice of recent haircuts and let you know that I think your hair is very nice at the moment?

yawny
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Re: My new Relaxis

Postby yawny » Sat Feb 25, 2017 12:27 am

legsbestill, you're spot on...my doctor's think my anxiety is showing up in physical manifestations. I've been to so many different doctors this past year because I have symptoms that aren't obvious RLS/PLMS. I saw a neurologist who happens to specialize in MS in adults but with a side specialty/interest in child Autism. He asked the usual neurological questions and then questioned me about my childhood. At one point, he asked how long I've been aware of my sensitivity and I was shocked that he grasped that so quickly and without obvious dialogue about it. He then did the physical exam and the reflex tests. He told me I was one of the most sensitive patients he's ever had. He placed a tuning fork against my foot and told me to tell him when I felt it stop. It never did and I finally said to stop (I could tell he was finished) but I could still feel vibration from the tool. So I'm finding treatment a little challenging (aren't we all) with most of the doctors telling me to cut out stress from my life (no, please, I love it so much). They all mean well but it doesn't help knowing I'm a difficult case (I've been told). I finally found a well respected neurologist who is considered eccentric and "thinks outside the box." My first appointment, he tells me "I have patients just like you." I started crying out of relief. Anyway, I am still doing medical marijuana and it sedates me very well but the anxiety is still present. But I'm experimenting with various low doses of medications now that are truly making a difference. Thanks for your specific feedback on the Relaxis Pad...it really helps to know. I'm now thinking maybe a regular massage pad, like something you'd place on your office chair, might be helpful. I've spent so much money on different products and gimmicks that I'm in the hesitant phase now but I'll most likely get one.

Your hair compliment is very much accepted although you'd take it back if you saw it...after a night thrashing about, I see Phyllis Diller in the mirror.

Polar Bear
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Re: My new Relaxis

Postby Polar Bear » Sat Feb 25, 2017 6:28 pm

This is completely off topic - but couldn't resist letting you know that if you saw my hair when ready to face the day, you'd know that Phyllis Diller could be my role model. My granddaughter calls it my 'mad scientist hair'. (She saw a picture of Albert Einstein :) )

yawny, I fully get it that when you felt your neurologist understood what it was all about, the tears came. Tears of joy.
Are you still with this neurologist and has his out of the box thinking been all you hoped it would be.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Location: Dublin Ireland

Re: My new Relaxis

Postby legsbestill » Sat Feb 25, 2017 6:42 pm

Yawny, I love your posts. I laughed out loud about your response regarding stress. Have been thinking about your anxiety since you last posted. You've almost certainly considered this already, but my understanding is that pure CBD oil is particularly effective for anxiety. I tried it for rls - it is the only legal form of cannabis here - and it was no use for physical symptoms but apparently lots of people rate it for anxiety. I know you take mmj already but maybe it would be worth taking pure CBD additionally. I used Charlotte's web chocolate peppermint oil sublingually and it was surprisingly pleasant to take, although expensive.

Am so pleased for you that you have found a neurologist you relate to. I hope you get a good outcome.

I think of you as a person who looks fab even after a night of thrashing about - that attractive just-got-out-of-bed vibe; no? And no need to apply eye-liner below the eyes which I read in a recent fashion mag is the latest look. We rls sufferers have that built in.

I have been having on-going problems with insomnia - usually lasting nearly all night - even though my symptoms are much improved. I got particularly down yesterday when everything seemed to get too much. My brave daughters went out last night and managed through friends of friends to find a cannabis supplier. They had to travel to an apartment in a really scary part of town to pick up €50 worth and brought it home to me just after midnight. I had a great night's sleep after smoking some and feel so much better today. I am sitting in front of a lovely fire watching Ireland defeat France in the Rugby international and feeling like life is worth living again. The guy who sold them the cannabis told them his mother takes it for a medical condition also and they said he was very amenable to supplying it again so now it looks like I have access to a regular supply. I am hoping this is the last piece in the jigsaw for me to live a slightly more normal life. Just hope my next post is not from a custodial centre where I am visiting daughters incarcerated for dealing in illegal substances.

legsbestill
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Re: My new Relaxis

Postby legsbestill » Sat Feb 25, 2017 6:44 pm

Was only wondering, Polar Bear, is your hair still pink? I love that look. If rls prevents me from resuming my long-interupted career in October I think I will go pink in protest.

ViewsAskew
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Re: My new Relaxis

Postby ViewsAskew » Sat Feb 25, 2017 8:23 pm

Legs - great news on the cannabis. Your daughters are the bomb.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

legsbestill
Posts: 328
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Location: Dublin Ireland

Re: My new Relaxis

Postby legsbestill » Sat Feb 25, 2017 11:18 pm

Just in case it would help anyone to know, my husband (who specifically asked to be credited with this), noticed the Relaxis pad on in the bed for the first time since I learned to lower the vibration level and described it as like being on board a ferry ship and feeling the engine. And that is very much what it feels like.

I think I am starting to respond better to it. It seems to be getting slightly more effective at quieting my symptoms.

Polar Bear
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Re: My new Relaxis

Postby Polar Bear » Sat Feb 25, 2017 11:18 pm

LEGS - Yes, I still have some pink. Got a thorough razor cut 3 days ago with copper foils but there is still some pink glowing through. Looks grand :)

Well done on your daughters getting what you needed - I'm a scaredy cat and envision something between Trainspotting & The Committments !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

yawny
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Re: My new Relaxis

Postby yawny » Sun Feb 26, 2017 1:23 am

Polar Bear,
Is this the same delightful granddaughter that claimed pink lady is her favorite apple? How adorable! You must get so much joy from her. :D

Well, this morning I've upped my attractive Phyllis Diller look with Kleenex stuffed in both nostrils. I went to bed with the start of a cold and by morning I had a nonstop runny nose that's only fixed by inserting rolled up Kleenex. Add that to my Phyllis Diller, and I'm starting to believe my husband really does love me for my personality.

Yes, I'm still seeing the same neurologist and through his guidance I'm getting relief. Really, the first relief I've had from constant 24/7 anxiety my entire life or as long as I can remember. This may seem strange, but I'm having to sort of get to know a new me. The anxiety has always been so tied in to my personality and perspective. I'm finding that I am now open to new ways of thinking and it's a little disconcerting. In college, I traveled abroad and was amongst a new culture and a language I didn't speak. It feels like that. But without the amazing croissants.

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: My new Relaxis

Postby yawny » Sun Feb 26, 2017 1:25 am

Legsbestill,
You are so right, I think I've seen my thrashed-about look during New York fashion week. Who's to say that results achieved organically are any less fabulous?

I'm in awe of you and your daughters. What a wonderful family living the principles of family...unconditional love and support. Your daughters are kick-a** awesome and I'm sure the apples don't fall far from the tree! I despise that any of you have to be at risk to get cannabis for medical needs. It's unconscionable.

Thanks for reminding me about pure CBD oil...it's weird that you brought up the CBD for anxiety since I've been thinking about it a lot for two weeks now. There definitely seems to be enough anecdotal evidence to support it. I've been in this mode of adding or changing things at a sloth-like pace. Before I was so panicked by lack of sleep I was throwing everything at it but I continually found myself unable to decipher what was causing what, so I went into sloth mode. It's a painfully slow existence but you get clearer results. Like I was able to discover that something in the B vitamin family causes me problems. And I have others things I suspect but haven't yet run them through the sloth process yet. So I'd like to put CBD oil at the top of the list. It's a really good idea.

Glad you're having a better day. :)

Rustsmith
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Re: My new Relaxis

Postby Rustsmith » Sun Feb 26, 2017 2:54 am

Interesting that you brought up CBD for anxiety. When I was at the medical school for the research project on Thursday, I realized that I wasn't able to chill out when the nurse took my blood pressure and that the same thing happened last month at my GP's office. For years, I would calm myself to drop my blood pressure and heart rate so that I could surprise the nurse with how low they both were. So, yesterday afternoon I realized that my inability to relax and drop my blood pressure below "normal" was due to anxiety. My wife uses a CBD tincture for her MS symptoms, so I took a half dose. Within five minutes, the anxiety was completely gone and it has not returned. I am going to have to start a daily "test" of myself to see if I can really relax and then use her CBD if I find that I am simply too anxious to chill. The CBD doesn't do anything for the rest of my RLS, but it works like a miracle on the anxiety front.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.


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