New to Site; hello to all

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Tue Nov 07, 2017 4:32 pm

Whoah. A lot of great info there, Badnights - thanks for it. Again, sad but true, I foresee no doctor in my future. I take 3 or 4 Valerian, and two regular OTC 'Sleep Aids.' Will try and cut down on the Sleep Aids. Isn't Augmentation a further kick in the butt? I've also heard Zinc supplement, and lots of other tips that don't seem to help my RBS (Restless BODY as the jerking has progressed to involve my whole torso) These last few nights have been ok for me, I've been walking miles and miles. I think more than anything, it's the exercise and fresh air wearing me out! I've also been trying to get more water, which I hear helps. I've learned to try to keep my feet elevated as much as I can through the day, and deep tappotment (spelling??) massage when I feel the symptoms coming on. The whole point, for me, seems to be DON'T STRESS. There's so much info out there about what meds and dietary supplements help with RLS, and why, and that what helps one patient might not help the next. I'm 49, and started feeling the symptoms at 13. That's far too long to suffer. Through that time, I've learned to stay away from stress triggers as much as possible. For me, more than anything, keeping myself as calm and peaceable through the day means a calm peaceful night. One the stress is triggered, the RBS is triggered, and no help for it. Thanks for the info, everyone, and best to you -

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Wed Nov 08, 2017 11:01 pm

Ok all. Got some Melatonin today. I've taken that before. Will try that with Valerian tonight and see how well I sleep! Wish me the best everyone - RD

Oozz
Posts: 54
Joined: Wed Oct 11, 2017 8:09 pm

Re: New to Site; hello to all

Postby Oozz » Thu Nov 09, 2017 1:26 pm

I believe my RLS is triggered by stress as well. It typically goes away 100% when I am on vacation. Anything specific you are doing to manage the stress? Any specific triggers you have found?

Polar Bear
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Re: New to Site; hello to all

Postby Polar Bear » Thu Nov 09, 2017 2:24 pm

Interesting to hear how you think the Melatonin works for you. My doctor asked me to try it and so to be cooperative I used it for the 13 weeks at his request. It didn't work for me, I hope it is better for you.
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

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Thu Nov 09, 2017 4:26 pm

My stress triggers - general worry over finances, as the RBS and Insomnia combine to make it so I shouldn't drive, let alone work. A lot of prayers for me to let go of that stress. I have been trying to watch coffee intake. That triggers things. I watch certain people that I come into contact with, as other folks often do not understand what it is to beat your own legs black and blue with a cooking pot to still the painful jerking. Trying to help these people understand that I may LOOK ok on the outside, and may even exercise and walk a lot - that isn't necessarily the truth. I get the whole ' Get a Job' things from a lot of people, none of whom have to take 7-10 OTC Sleep pills a night to rest. It stresses me to have to try to talk to some people, so I stay away as much as possible. As to the sleep meds - last night I took one OTC regular sleep aid - likely has benadryl/diphunhydramine (spelling) I took 3 Valerian, and 2 10 mg Melatonin. I, of course, am not a doctor and so would never recommend this to anyone else. I fell asleep all right, but then woke up several times through out the night. The RBS was a bit active - perhaps I can cut out the OTC Sleep Aids all together and stick with Melatoin and Valerian, and that might work for me. Its a matter of finding out the meds that work, and the stress triggers. Also, for me, it isn't the happiest thing, but lots of exercise helps - I walk 8-9 miles a day if I can, and do my arm exercises and sit-ups too. I think what's going on here is that your body releases good endorphins when you exercise, and it's good to let your body listen to those good endorphins intead of being plugged into stress. just one lay-person's theory. Best to you all - Restless

Oozz
Posts: 54
Joined: Wed Oct 11, 2017 8:09 pm

Re: New to Site; hello to all

Postby Oozz » Thu Nov 09, 2017 5:53 pm

I see. Thank you for the response.

badnights
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Re: New to Site; hello to all

Postby badnights » Fri Nov 10, 2017 6:19 am

perhaps I can cut out the OTC Sleep Aids all together and stick with Melatonin and Valerian,
If I could only recommend one change to you, it would be to never in your life ingest diphenhydramine again.

Of course, I can (and did) recommend a whole lot more :) . But diphenhydramine is certain to cause WED/RLS symptoms. It can even cause symptoms in people who normally never experience them, like my brother. But it is guaranteed to cause WED/RLS symptoms in someone who gets those symptoms already. So ditch any of your sleep aids that contain it, because they are doing the opposite of what you want. They're causing the RLS/WED, not stopping it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Fri Nov 10, 2017 4:39 pm

Thanks BadNIghts - I appreciate the head's up against diphenhydramines. It's a matter of figuring out what meds, if any, work for me. That might very well mean something very different for the next person. My case is, admittedly, extreme in how many sleep meds I take. I will be honest here on the sounding board, but would never recommend to anyone that my own personal level of immunity to sleep meds means that everyone should do as I do. Im no doctor, and that would be very wrong. I simply mean to honestly record things I'm experiencing. I've cut down a lot on the sleep meds I take, and on the good advice I've received from the Sounding Board here, I'm working on factoring out the Diphens all together. This last spring, I lived in a cute basement apartment. The upstairs neighbors had no idea how loud they sounded, and how often they woke me. I begged them so hard to let me sleep that the landlord evicted *me*, when I was only trying to work to support myself. I was taking all those sleep meds, beating my legs almost nightly, and still trying to work on three or four hour's sleep a night - constantly. I am currently camping out in my local little church. I can cook, and wash - but there is not hot shower. I try to live on the bright side - there are books at my church that I can read, so have access to worlds of learning. Most importantly for the purposes of this discussion, it is very quiet at my church at night so I have been sleeping better and taking fewer sleep meds, be it the Diphens or other types of meds. This is an improvement. My best to all - Restless

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Mon Nov 13, 2017 4:48 pm

OK, all. An update here. Still camping out in my little local church. I have pennies to my name. Just as a personal trial, I've been cutting back on OTC sleep meds with diphenhydramines. Well, my RBS let up a bit. I took 3 Valerian and 3 Melatonin Saturday night (not that I recommend that, I am only honestly articulating my symptoms) I did this at 6:30. As i said, RBS was a bit better - I just did not sleep. The good old-fashioned plain nasty Insomnia reared it's disgusting head. :/ :/ :/ I sleep poorly enough that I ought not drive, let alone work. I finally fell asleep at 3:30 am Sunday morning, and HAD to be up at 5 am, as church services were happening soon. Pretty much repeat this last night, except I got fed up at 10 pm, and so took a fourth Valerian and also a fourth Melatonin. Been staying away from the diphens. Best to everyone - Restless

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to Site; hello to all

Postby stjohnh » Mon Nov 13, 2017 6:13 pm

Congratulations on getting the diphenhydramine disedown. It is really important to get off it completely.
Blessings,
Holland

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Mon Nov 13, 2017 8:28 pm

Working on kicking the diphens. It means I do NOT sleep. My RBS pairs horrifically with Insomnia. Ill stay in contact with the folks here on the Board as I can - peace out -Restless

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Tue Nov 14, 2017 4:22 pm

Ok all. Simply exhausted here. Again, 7 sleep meds last night - Valerian and Melatonin. RLS was better with no Diphens, as advised - but I do not sleep. The insomnia is *not* breaking. I fell asleep readily enough last night after taking the sleep meds, but woke up around 1 am. I got 3 hours or so sleep. I laid in bed for a few hours, then around 3:30 just got up. I've been trying to cut out some coffee too, but made a cup this morning! My head hurts so bad, THAT brought on RBS. I also think for me, symptoms may be weather-related too - when weather changes symptoms seem aggravated. So, trying to see if there is any way I can find to ease RBS but still sleep. The fight continues ..... Restless

ViewsAskew
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Re: New to Site; hello to all

Postby ViewsAskew » Wed Nov 15, 2017 5:22 am

Melatonin does not make me sleep. Valerian actually awakens me- I lucid dream if I sleep at all. Could be that these work differently for you than for other people?
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.

leggo_my_legs
Posts: 307
Joined: Sun Oct 16, 2016 12:29 am

Re: New to Site; hello to all

Postby leggo_my_legs » Wed Nov 15, 2017 7:37 am

That sounds horrible! I know you're not into government stuff, but you may want to consider getting an attorney on contingency and applying for SSI. You do need a medical record for that so maybe re consider going to the doctor. This is a complex illness and I can't imagine trying to go it alone. It's truly awful to be invalidated by doctors but now you have us.

If you are able to get another job, my thought would be if it gets rough don't quit, let them fire you if that's what they want to do. If you quit it weakens your benefit case. You have paid into the system through your work history so it's actually not a handout!

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Wed Nov 15, 2017 8:02 pm

Im hoping i'll be able to wean myself off the Valerian and Melatonin. Bit by bit. Trying to give up sugar too - trying different things. Ok, a brief note on why I'm against government. A few years ago, i rented what was supposed to be subsidized housing. As part of my then employers' plan to get rid of me by making me quit (thus escaping paying Unemployment) they cut my hours, and my pay - one-half to one-third. I begged my state's housing program for help. Nope. My rent got raised, then I got evicted. I did get fired from my then job. I had to work two hours free every shift, and never got lunch or break. I did that for three years - I was in health care. You do that for the care of the people you are responsible for. Truth. How do we think being on my feet like that helped the RBS - and it was a very physical job. I begged the Authorities for help to get the situation quietly resolved - nope. I got fired. I could never even get through to unemployment to start a claim. My ex-employer slimed away from paying Unemployment, and in fact BRAGS that they don't pay Unemployment. I have made Unemployment aware of that, and heard nothing. I am out all the money that people are lied to and told we pay into the system. That's wrong, that's not what my direct experience showed me. None of this helped my stress levels. I have not seen my state tax return for two years - again, I am currently camping out in my local church, and I'm nothing but grateful for the place to stay. I can cook, but there is no hot shower. My bed is still that table with a few blankets thrown on top. I BEGGED Disability for help - well, my car was acting up. They wanted me to drive two hours for a doctor appointment when there is a perfectly fine medical clinic five minuted from my door. No help from the government there. They have this all planned out, I'm sure. WHY try for state health care when the state has so harmed me in the recent past? Now, I'm sorry, but I ask you - WHY IN THE WORLD WOULD ANYONE KEEP ASKING THE GOVERNMENT FOR HELP??? The best I can hope for is, as I said, to slowly wean myself off the Valerian and Melatonin. I've tried to cut out coffee too = this does seem to be having a beneficial impact on RBS symptoms. Last night I thankfully slept quite soundly, but when you are as drugged as I make myself - that isn't 'normal' sleep. For the foreseeable future, it's me and my cooking pot that I crack my legs with. My best to all - Restless


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