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: 37
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Thu Dec 28, 2017 11:57 pm

Bad string of nights, my Dears; I'm sorry to say. Easing back on the coffee and diphens really seemed to be helping me. Been a stressful few days - after fighting for years, I got my tax refund from my state for the last two years. That's GOOD. I've been camping out in my church, and it also means I might move soon. Good, but moving stress. Trying to find an apartment etc etc. I may have to leave the town where I am now, where I've lived for ten years or so, and move 30 mins south. That isn't bad, but moving is stress. We all know this. I'm going to try to get myself in a better place, but what an uphill battle. I can't begin to express how deeply convicted I am of the fact that stress aggravates the legs. Last night I had it in my arms too :( Nothing to be done but get through it and hope it work out for the best - RD long peaceful nights to you all

badnights
Moderator
Posts: 5303
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to Site; hello to all

Postby badnights » Mon Jan 01, 2018 5:50 am

Moving is very stressful, even if it's just across the road.

If you're determined to reduce the level of your WED/RLS symptoms, you might want to experiment with eliminating all the foods known to cause problems, then gradually add foods back in. I haven't done this myself, but I have had great success with diet (search for diet here, you'll find lots of discussion, including a Topic where I discuss my foray into using diet to improve my symptoms - viewtopic.php?p=74259#p74259). If I had it to do over again, though, I would start with something like the GAPS diet. I suspect I would end up at the same place - eating lots of vegetables, not much grains, no added sugar, foods as whole and unprocessed as I can get.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Restless Dragon
Posts: 37
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Tue Jan 02, 2018 8:27 pm

Thanks Badnights. I think carbs and sugar especially gets me going. Hard for me to cut sugar and carbs completely out of my diet. Will try anything I can tho. The other side of the equation is, of course, finances. I haven't been working, so is hard to get fresh fruit and veg. It'll be a long walk for sure, on rough legs ..... still no hope for doctor here either. Heat helps somewhat, but again, I thin that's a generalized relaxation thing. Still taking lots of melatonin and valerian, staying awat from dipenhydramines. The string of rough nights continues here - best to everyone else out there

Wild6Flower16
Posts: 13
Joined: Thu Dec 28, 2017 6:17 pm

Re: New to Site; hello to all

Postby Wild6Flower16 » Wed Jan 03, 2018 12:54 am

i'm sorry to hear. It is not easy to treat like an aching tooth or something. For me it is a wait and see. today i was given clonidine. and to go back on the medication that was giving me withdrawal symptoms. one being restless legs

Restless Dragon
Posts: 37
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Wed Jan 03, 2018 11:14 pm

True WildFlower, I never know from day to day either if my RLS will be active or not. Hadn't slept well in days - took a WELCOME nap this afternoon and sure enough, a bit of RLS jerked me awake ....

Restless Dragon
Posts: 37
Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Fri Jan 19, 2018 8:39 pm

Ok, Medicine question here; so perhaps not the correct portion of the Sounding Board but here goes: My Mom's told me of a cream that's called 'MagniLife.' In the states, you can get it at Walgreen's or WalMart etc etc. Has anyone herd of this or tired it? Does anyone know what's in it? -Thanks all - Restless

Yankiwi
Posts: 387
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: New to Site; hello to all

Postby Yankiwi » Fri Jan 19, 2018 11:21 pm

I don't know the brand but magnesium cream is available in New Zealand. Even though I didn't think it would work I bought some and when my legs are really bad rub it in. It doesn't seem to do anything but the rubbing action helps sometimes. I think hand lotion works just as well but it's one of those things we rls sufferers tend to try, just hoping it will help.

badnights
Moderator
Posts: 5303
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to Site; hello to all

Postby badnights » Thu Jan 25, 2018 6:53 am

Magnilife cream is a homeopathic product. It contains miniscule amounts of various substances. The rubbing action can help, and even relieving dryness can help.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 7593
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New to Site; hello to all

Postby Polar Bear » Thu Jan 25, 2018 12:29 pm

I also agree that it's helpful to keep skin moisturised. If my skin gets to feeling a bit dry I feel more vulnerable to my rls symptoms.
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

szigmond
Posts: 1
Joined: Thu Sep 20, 2018 12:50 am

squats

Postby szigmond » Fri Feb 15, 2019 7:54 pm

I am finding that many nights I can do a squat and hold it as long a possible-- 60-90 sec. This is better for me than up and down squats and I can usually fairly quickly get back in bed and go to sleep

badnights
Moderator
Posts: 5303
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to Site; hello to all

Postby badnights » Sat Feb 16, 2019 5:52 am

Yes, wall squats or any squat hold. Going up on toes while squatting can help too.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

dickandjane
Posts: 1
Joined: Fri Feb 15, 2019 3:32 am

Re: New to Site; hello to all

Postby dickandjane » Sat Feb 16, 2019 11:34 pm

Also new to site...haven't figured out where to post yet, so first post: I have put up with RLS for many years, seems to be getting worse as I age. Luckily, I don't seem to have the nighttime RLS, but it hits in other aggravating times and places. I can't sit thru a play or movie without squirming around and crossing and uncrossing my legs constantly. I have stopped flying because the restlessness is like torture. I must drive people around me crazy as I can't sit still. I don't take any medications for it, but an occasional iron pill. I guess I have come in here to ascertain if anyone HAS found relief of any kind for these squirmy, restless legs. Thanks, Jane

stjohnh
Posts: 950
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to Site; hello to all

Postby stjohnh » Sun Feb 17, 2019 12:04 am

dickandjane wrote:Also new to site...
...I have stopped flying because the restlessness is like torture. I must drive people around me crazy as I can't sit still. I don't take any medications for it, but an occasional iron pill. I guess I have come in here to ascertain if anyone HAS found relief of any kind for these squirmy, restless legs. Thanks, Jane


Hi Jane, welcome to the RLS community. You will find lots of help and support here. Sounds like you have mild to moderate RLS. Has it interfered with your sleep yet? That is what usually gets folks in to see their doctors. RLS is caused by low brain iron. Taking iron tablets may help. Be sure to take them every day, if possible on an empty stomach, and with a vitamin C tablet. If you haven't had your iron checked, ask your doc for a ferritin test. This checks for the amount of iron in your blood. There is no test for brain iron deficiency (yet). If the number is below 75, then oral iron tablets have a chance of helping. The best treatment for RLS is IV Iron infusions. They may get your brain iron back to normal, causing your RLS symptoms to go away. Unfortunately, most doctors, even neurologists don't know that.

The usual first treatment given by doctors for bothersome RLS is usually Requip (=ropinirole) or Mirapex (=pramipexole). These medicines are inexpensive and usually effective as long as the dose is kept low. Increasing doses cause lots of problems, and if you can get it, IV Iron infusions are the only treatment that gets at the basic problem, Brain Iron Deficiency.
Blessings,
Holland

Yankiwi
Posts: 387
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: New to Site; hello to all

Postby Yankiwi » Sun Feb 17, 2019 8:23 am

When I only had rls occasionally, at the movies, a concert or confined in a car, I took Sinemet. It works very quickly and is excellent for occasional use but can't be used regularly as it causes augmentation (when taking medication causes increased rls).


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest