How long have you had RLS/WED

For everything and anything else not covered in the other RLS/WED sections.
Oozz
Posts: 54
Joined: Wed Oct 11, 2017 8:09 pm

How long have you had RLS/WED

Postby Oozz » Thu Sep 06, 2018 5:16 pm

I’m 32 and it seems like I’m one of the younger people on the forum. Given that I may have to deal with this for the rest of my life, I’m wondering how long other people have been dealing with RLS/WED.

For me, it’s been about 4 years - night only. It’s really amped up in the past two from maybe 2-4 nights to every night.

Rustsmith
Moderator
Posts: 3396
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: How long have you had RLS/WED

Postby Rustsmith » Thu Sep 06, 2018 6:28 pm

I cannot say exactly how long that I have had issues with RLS, but I can remember having problems during my late 20's. The job that I started about then required loads of international airline flights and I can remember how uncomfortable I was on some of them. But my RLS was mild to moderate until I retired at age 56. About 4 months later it took a step change and went to the severe level. I'm not sure what triggered the change, but I have speculated that it took that long for me to recover from years of chronic jet lag and return my circadian rhythm back to "normal".
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
Moderator
Posts: 7239
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: How long have you had RLS/WED

Postby Polar Bear » Fri Sep 07, 2018 4:24 pm

I can recall my very first episode of RLS.
I was sitting on the sofa and my son aged about 7 was lying on the sofa with his legs across my lap, I was rubbing his calf.
These weird symptoms appeared from nowhere and I wanted to get up but that would have disturbed my son who wasn't well and trying to sleep. I tried to sit still but coulldn't. That would have been around 35 years ago.

I tolerated it day and night in arms and legs for 20 years until 15 years ago when in the USA I saw an advert for Requip. Back to UK and straight to my GP who prescribed it for me..... It was never a great successs and after about 5 years I discovered that cocodamol added was very helpful.
Also Slow Release Tramadol which I am currently slowiy reducing. My GP also has prescribed me codeine phosphate i.e. taking away the paracaetamol, at my request. Also as the Tramadol is being reduced I have been prescribed a few extra codeine phosphate pills for as and when necessary.

So, in summary - My RLS has been with me for 35+ years. It was in my arms and legs, day and night for about 20 years before I had any treatment.
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

2BassetMom
Posts: 160
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: How long have you had RLS/WED

Postby 2BassetMom » Sat Sep 08, 2018 6:59 pm

I had RLS intermittently from around 40 years of age. Usually I would get it on long flights. I didn't know there was a name for this. My mom had it in her later years and took Xanax for it. About 3 years ago I started having a problem with pain in my left knee. I was on hydrocodone for that but it was still painful. My doctor retired and I found another practice that wanted me off the hydrocodone. They sent me to a pain management clinic which was a huge blessing. They couldn't pinpoint the knee issue so I ended up at a knee doctor who diagnosed bursitis and gave me a shot. End of pain. All that to say that during the worst of the knee pain I would get terrible spasms in my left leg that caused the knee to hurt worse. I think that may have been the start of RLS. That's also when the nightly RLS started. I would guess I was 68 when it really set in. I'm 71 now. My 43 year old daughter has started showing signs and I am sad for her. She and I will be attending the symposium down in San Diego at the end of this month. Hoping for answers.

stjohnh
Posts: 576
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How long have you had RLS/WED

Postby stjohnh » Sun Sep 09, 2018 1:48 pm

I am 70. Symptoms started about age 35. It didn't interrupt my sleep until about 5 years ago, that's when I started on medication.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 15326
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: How long have you had RLS/WED

Postby ViewsAskew » Sun Sep 09, 2018 9:44 pm

Mine started as a teenager, but didn't get to this level until my late thirties.
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.

Yankiwi
Posts: 355
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: How long have you had RLS/WED

Postby Yankiwi » Mon Sep 10, 2018 4:45 am

I am 69 and have had it for at least 25 years. It really kicked in during menopause. I've been trying to find drugs for about 20 years starting with Sinemet. Doctors seem to have a better understanding now than then.

badnights
Moderator
Posts: 4934
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: How long have you had RLS/WED

Postby badnights » Sun Sep 16, 2018 4:50 am

I was a kid when it started - I feel like I've always had it - but it was only intermittently a problem. Every now and then I would think "wouldn't it be horrible to have this all the time, or to have it in my arms" only I didn't think that in words, and my mind skittered away from the thought as soon as it began to form. I had already felt hints of it in my arms.

It began to be a problem when I was 46. Right after a knee operation, but also right after a cellulitis infection that ate into my forearm (from a spider bite). Maybe all the antibiotics they gave me for the cellulitis destroyed my gut biome; apparently that can have far-reaching neurological effects.

Seven years later - one year to get a diagnosis and six years of augmentation, mood disturbances, increasingly poor sleep, backsliding career, vanished social life, decimated relationships, and general cognitive decline (you can probably detect the bitterness) - I started a diet that excluded gluten, dairy and added sugar, heavily restricted carbohydrates and processed food, and included loads of vegetables, wild cold-water fish, and organ meats. I was ketogenic for a while. Something about this diet improved my symptoms and enabled me to reduce my medications and start feeling better. That improvement started in 2014 when I was 52. A bit over a year ago, I had another massive improvement, not in WED/RLS symptom severity but in quality of life, because my circadian clocks synchronized with each other and with real daytime/nighttime (I had been almost 12 hours off).

I think it's a mistake to think of it as a life sentence. There are plenty of cases of remission, and cases like mine of dramatic improvement (but I cant say my life is as good as it was before, sadly). There is so much about how the body works that we don't know - - -
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.

Yankiwi
Posts: 355
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: How long have you had RLS/WED

Postby Yankiwi » Sun Sep 16, 2018 5:30 am

My father had it and half of my nine siblings have it to one degree or other, one fairly severe. Lots of my cousins (on my father's side) have it too.

rjdishon
Posts: 6
Joined: Fri Jan 19, 2018 4:51 pm

Re: How long have you had RLS/WED

Postby rjdishon » Wed Oct 24, 2018 1:20 pm

I have had RLS symptoms since my mid-late 20's (I am now 48.) My father has suffered with RLS for as long as I can remember, and on a side note he is now fighting Parkinson's disease. My RLS became "severe" around 5-6 years ago, to the point of not being able to drive more than 30 minutes without stopping, being unable to sit through a meal or a movie, etc. Requip does help me sleep, but as I discussed in another post, the side effects are taking their toll on me. Kind of like being stuck choosing between 2 bad outcomes...don't sleep or suffer the consequences of long-term use of Requip.


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 1 guest