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

New to Site; hello to all

Postby Restless Dragon » Mon Oct 30, 2017 10:16 pm

Hi everyone. I'm new to the Board here, but 49 and old to Restless Leg. I started experiencing RLS when I was 13. It's progressed now so that it involves my torso as well. I've lost jobs due to the condition - I'm in a very economically repressed area of the US, and about the only jobs here are those where you're on your feet all day - the worst thing I can do for my RLS. I have not worked since Memorial Day of last year, so I now have very little cash to my name. I have had no end f trouble with the government of the state I live in, so am not one for state-sponsored health care. When I did try to go see doctor to track down the Restless Leg and get some relief from my symptoms - I was advised to take a few vitamins. This made little impact on the symptoms. These days, I take 7-10 OTC sleep meds nightly, and still tend to lose hours of sleep to RBS. I have a cooking pot that I use to beat myself in the legs, as that shocks and outrages the associated muscles and ligaments to the point where I can (hopefully) drop into a sleep deep enough to not be aware of my legs painfully jerking. There is no doctor i my future. Disability Benefits in my state denied my claim, as they of course are not with my nightly to witness my struggles. Any advice from anyone out there would be greatly welcome - Restless Dragon

Rustsmith
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Location: Pueblo, Colorado

Re: New to Site; hello to all

Postby Rustsmith » Tue Oct 31, 2017 1:03 am

Sorry to hear of the variety of troubles that your RLS is causing. First, check the list of ingredients in the OTC sleep meds that you are taking. Many, if not most, of them contain anti-histamines to promote drowsiness. These anti-histamines are one of the worst things that those of us with RLS can take. Specifically look for Benedryl or Diphenhydramine in the ingredients. You should try to stop taking anything with these in them, even if you don't sleep as well for a few days.

Second, a trick that many of us use is to soak your legs in very hot water (others use very cold water). This can help switch off the need to move long enough to allow you to fall asleep. You might need to do this a couple of times a night, but it is better than taking the OTC anti-histamine sleep aids.

Another thing to try, but it carries some risk since you don't have a doctor, is to take an iron supplement. Too much iron can be harmful, but most of us run very low. The least expensive form of pill is iron sulfate, which should say something like 65mg elemental iron or 365gm of iron sulfate. This needs to be taken on an empty stomach either with vitamin C or some orange juice. It takes a few weeks for this to help, so don't expect an overnight change.
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.

Polar Bear
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Location: N. Ireland

Re: New to Site; hello to all

Postby Polar Bear » Tue Oct 31, 2017 1:29 pm

Restless Dragon - I'm one of those who have used the cold water method of calming my legs when trying to get to sleep. We're talking icy cold water in as deep a bucket/container that you might have. The kind of cold that takes your breath away for a moment. Get the feet in and draw the water as far up your legs as possible, it very quickly becomes more comfortable. I found that it took about 15 - 20 minutes for my legs to calm sufficiently, then it's.... get rid of the water and into bed immediately. It nearly always worked, sometimes not.

This was at a time before my medications were adjusted enough to give me some relief, I have no need to do this at present but it did see me through many's a tough night.

There are also those of us who find that certain foods can be a trigger, sugar, caffeine. And of course certain medications .... Anti depressants, anti histamines. Alcohol and nicotine are very often triggers as is stress and anxiety. Exercise in moderation might help and extreme exercise is generally a trigger.

What we can be sure of is that what works for one sufferer may not work for another and so we find ourselves using trial and error.
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 » Tue Oct 31, 2017 3:27 pm

Thanks Polar Bear. I hope to see doctor soon about symptoms. I have buckets and can try cold water trick. I just know I'm ready for better quality of life

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

Re: New to Site; hello to all

Postby Restless Dragon » Tue Oct 31, 2017 3:38 pm

Thanks as well Rustsmith. I was taking OTC sleep meds. Tylenol Pm. NyQuil. Melatonin. Valerian. I am trying to do better, and so am trying to stick to Valerian and OTC sleep aid. I've been trying to watch caffeine intake. I've noticed that, for me, elevating my legs helps. I often rub my calves intensely against any hard surface, and I can feel the associated muscles, like taught bungee chords, under my skin. I also will say I get quite a bit of exercise, and even walking miles and being on my elliptical exercise machine doesn't tire me out well enough to drop off into sleep at night. Again, this causes loss of jobs, and other factors that go into good quality of life. I am grateful for all feedback and suggestions - my best everyone!

ViewsAskew
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Re: New to Site; hello to all

Postby ViewsAskew » Tue Oct 31, 2017 4:39 pm

Valerian doesn't help most of us - and can cause other issues. I would agree with Rustsmith to take none of them for now. The OTC sleep aids are not designed for RLS and at best you are wasting your money, at worst you are inadvertently making the RLS worse.

Taking some time off from these might improve your condition quite a bit. And, might not. If not, many people use kratom and marijuana. That in itself can be tricky, as certain strains of MMJ can cause it to worsen and it is not legal in many places! Kratom is only available by mail and is also illegal in a few states, with others trying to make it illegal. Not suggesting you do anything illegal...just letting you know what some of our members do. No judgement here - by me or anyone on this site. You can read the posts of those who use these to see what they do.

Diet can help some folks.There are lots of posts about that and reading them might give you some ideas.

A few folks here have great results with a TENS unit. Costs about $20-30 for a unit on Ebay - at least that is where I bought mine. I think they are a bit higher than that at a local drug store, such as CVS or Walgreens.

Rustmith mentioned iron - definitely can help some of us. I needed an actual iron infusion, as OTC iron was not enough. But, some of us can take oral iron and in a few months have an incredible reduction. If you get any medical care from anywhere, if they can run a serum ferritin panel, that would be helpful. As Rustsmith said, some people already have too much iron and more can be dangerous.

Once you stop all the OTCs - and seriously, please try this - you may find that some yoga or long-held stretches help. I am also one that beats my legs with things (my whole family does, lol) and long-held stretches have always helped me to some degree. When very tired, I can even fall to sleep in a yoga pose, lol, then wake up when my muscles relax. I have found ways to keep my worse leg taut while sleeping (one leg is always worse for some reason), too.

I am sure others will be by to think of other things.
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.

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

Re: New to Site; hello to all

Postby Restless Dragon » Wed Nov 01, 2017 7:38 pm

Thanks for the Welcome and responses all - a lot of information out there. What works for one person's Restless Body may not work for the next. Which, of course, complicates things. I do as I can as to diet - I cut back on coffee a lot - I used to down 3 or 4 mugs, now I limit myself to 1. I eat a lot of carbs - as my finances are tight, I get my food from the local Lord's Cupboard. You get what you get, and appreciate it. Yoga and stretching does help, momentarily. If I could drop off to good sleep 10 - 15 minutes after I lay down, that may well be the answer. However, the Insomnia kicks in. I often lay in bed for quite some time before I can drop off - plenty of time for the RLS to activate *grrr* This is constant chronic aggravation. I usually start feeling the numb-stiff-tightness ten minutes after I wake up, so RLS is also all about the Inevitable. Everyone tells me to go on State Health Care, and get things 'sorted out' that way. I'm sorry to say that my RLS is directly related to stress, and the government has caused a lot of my stress and problems. So, I want nothing to do with state health care. That means no doctor. That's the best solution people here where I am can come up with. My last job was a very good job, and paid about the best you're going to get in the are where I live. I had to quit not only because of the RLS/Insomnia, but also because I was never going to be able to afford the company health insurance through my employer! As an employee there, you weren't allowed to waive the company health plan, and even if you COULD, you made too much money to qualify for state health care anyways. And so, my dears, the RLS and stress and Insomnia are quite a vicious cycle for me. I appreciate all the advice/tips I can get. A doctor simply is not in my future. Best to all

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

Re: New to Site; hello to all

Postby Restless Dragon » Wed Nov 01, 2017 8:39 pm

*laughter* Ok, so a tech question with posting on the Board here. My apologies; as you all see my spelling can get pretty awful. Can anyone please let me know how to go back and Edit posts to correct spelling? Best to all -

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: New to Site; hello to all

Postby Rustsmith » Wed Nov 01, 2017 9:36 pm

I don't thing that users cannot edit posts, so I went back and corrected the RLS acronyms for you.
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.

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

Re: New to Site; hello to all

Postby Restless Dragon » Wed Nov 01, 2017 11:21 pm

lol I see my first Post has lots of spelling mistakes - I think you all get the jist. Ill watch the typos in future. I think it's going to be a bad RBS night for me ....

jul2873
Posts: 371
Joined: Thu Nov 15, 2012 7:32 pm

Re: New to Site; hello to all

Postby jul2873 » Thu Nov 02, 2017 12:54 am

Hi R. Dragon - welcome!!!

I also had years of mild RLS, and then when I was in my late 60's it became severe. For the last five years I've used kratom to manage the symptoms. Kratom is the powdered leaf from the kratom tree in South East Asia. I get mine online from Velvet Soul but there are a lot of dealers. It is legal in most states; check online sites to see if it's legal in yours. At any rate, I think it's great and you don't need a prescription. You can do a search on this board and find out lots more about it. Oh, and to help me sleep I use a little melatonin, and then I listen of audio books. They always put me to sleep.

I wish you all the best. It sounds like you're in a bad situation. Have you considered moving--looking for a better job somewhere else?

sleepdancer2
Posts: 183
Joined: Sun Jun 29, 2014 7:46 am

Re: New to Site; hello to all

Postby sleepdancer2 » Thu Nov 02, 2017 9:12 am

Oh my - so much you're dealing with, so much of it I can relate to. I remember being unable to work and waiting in line at charity food pantries and just being grateful to have something - anything - to eat. About the supplements your former doctor recommended, is there any chance magnesium and vitamin D were a part of that? Those are two things important to muscle and nerve health. About that state health care - been there too. To be honest, when it comes to RLS, I've had as much luck with those doctors as with any others. Even after getting on Medicare, I chose to stay with my local clinic. It's difficult to find a doc knowledgeable about this. Sometimes we just have to become super informed ourselves then find a doctor who loves to learn and appreciates a challenge. Would state health care cover you getting blood tests to see what supplements might be needed? About your stress, consider that a sleep deprived person, especially with RLS, has little reserves to deal with even the least stressors. I'm wondering if you can manage to separate other things you've gone through with your need for health care right now. If you don't like a doctor or their advice, you can always choose to walk away. But maybe after getting what you need. :) Besides the ferritin level, I'd ask them to check your vitamin D and magnesium too. Good luck with sorting things out. Have you already tried melatonin? I saw it was suggested. I took a very tiny dose of it, but I would caution against starting with the commonly available 3mg. That was way too much for me and my first night was from hell. Backed off to a tiny bit every night. Didn't fix my sleep, but did seem to help a bit. With some things more is not better. If a reasonable dose of a med or supplement isn't working, might be best to move on to something else. BTW, I am one who has found a TENS Unit helpful. If you see a doctor and they want to prescribe a med, please check back here for any watch-outs. Many doctors will go straight to prescribing a dopamine agonist. My opinion is they should NEVER be given until a ferritin test confirms your level is up near 100, which likely will require iron supplemetation before starting the med. Good luck going forward.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

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

Re: New to Site; hello to all

Postby Restless Dragon » Thu Nov 02, 2017 3:42 pm

Thanks for support all. I guess I can check kratom; I've used melatonin and valerian for years. You get used to that stuff and build up a tolerance to it. At one point, I got some pills called 'Legatrin PM' -AUGMENTATION! At least it certainly was for me. All doctors and medications and treatments aside, I'm beginning to come to the understanding that, really, dealing with RLS is about identifying what STRESSES you, and staying away from that if at all possible. Dealing with RLS means, perhaps, swapping out stress for things that calm and soothe. If I can, I'll try waking up with tea instead of coffee in the morning - still caffeine, but much less. Exercise is good, I jump on my elliptical three or four times a week - perhaps I can do that in the morning, instead of the evening when my legs are already screaming at me. I find cooking and baking very soothing and relaxing - I plan to do more of that in future, instead of trying to fight with the government system that has no concept of what all this means. And yes, perhaps I can look at getting some recommended meds online. Going round and round with doctors has never been of any help to me. Wishing everyone else the best and Quiet Legs - :)

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

Re: New to Site; hello to all

Postby Restless Dragon » Thu Nov 02, 2017 7:15 pm

Way too much stress for me today. It's a little after 2 in the afternoon, and I can already tell you it's gonna be an RBS night .... :(

badnights
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Location: Northwest Territories, Canada

Re: New to Site; hello to all

Postby badnights » Tue Nov 07, 2017 5:38 am

We tend to do poorly with sleep meds - OTC or prescription - unless our movement and sensory (pain) symptoms are dealt with first. If they are not, the relaxation brought on by sleep meds can actually make the symptoms worse. On top of that, as Steve said, some OTC sleep meds have diphenhydramine (the active ingredient in Benadryl) - including Tylenol PM. That substance is guaranteed to make RLS/WED symptoms worse for anyone with this disease. Don't touch it.

Melatonin is an unknown - there is good evidence that as melatonin goes up, RLS/WED symptoms get worse, but no one knows if melatonin causes this or if they both happen at the same time because they're both related to our circadian rhythms.

Re yoga, I cannot do anything involving forward beds late in the day or the evening, it will set the symptoms off. Those are the poses that are said to induce relaxation, so it's not surprising. WED/RLS is a disease of the resting state, in that relaxation will induce symptoms. I do squats or lunges til my legs are very tired - and that usually allows me to get back to sleep.

If I need calming and it's too late for seated meditation, I do moving meditation or chi kung.

You can edit your own posts within 30 minutes of posting. You can delete the entire post within 3 minutes of posting.

Re supplements, as others have said, iron and vitamin D are the two things that have been linked to WED/RLS symptoms, that we tend to be low in. You take a risk adding iron without a doctor's ok though I know of people who have taken that risk. As for vitamin D, my doctor told me that people can take up to 4000 IU - anything over that, the doctor needs to check their blood levels. you might want to look into it a bit more before making your own decision. The Foundation has some publications on the role of iron in WED/RLS - though you might need to be a member to get at some of them (https://www.rls.org/member-portal/publications). I also have a link to a no-longer-available webpage from Johns Hopkins on iron in WED/RLS - see the link under my name below any of my posts including this one. It's over halfway down under the header "From the Johns Hopkins Center for RLS website, a good description of the role of iron in RLS/WED; recommends raising ferritin to over 100 & trying iron infusions:"
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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


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