posted
Please guys I need hope and perhaps someone to relate to. I am 24 years old (male). I have RLS, sometimes all day. Luckily it doesnt always keep me from sleeping yet, but I would still say that it can sometimes be severe.
What I do know is the following:
-There is no known cause or cure. -There are treatment options that have limited success and that don't work with everyone.(Augmentation, tolerance) -It's going to get worse as I get older.
It has been said that RLS has been associated with depression and anxiety. How can I NOT be depressed? I don't feel like doing anything because this constant nagging feeling in my legs just won't let me forget that this is my fate. I am afraid to not be able to work and pay my bills anymore. I am afraid of not being able to cope with this for a long time and to no longer be able to enjoy the things I enjoy. I read stories online about people who are 60-70 years old that say ''I dont think I want to live with this for the rest of my life''. At 24, how do you think that makes ME feel?
I am not on any medication and I fear that if I start taking some now, they will wear off too soon and then I'll have nothing left for the rest of my life.
Has anybody else been dealing with this or heard about anybody dealing with this since their ealy 20's?
I guess I don't really have a point here. I guess I'm just looking for someone to relate to and if anyone can tell me something that'll keep me going or perhaps give me hope.
thank you, Nic, Worried in Canada.
Posts: 8 | From: Gatineau, Quebec, Canada | Registered: Nov 2009
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posted
I've had it since I was younger than you though perhaps not as bad as you seem to claim.
The first thing I'd ask you is, are you an active person? Staying active is the best way I know of to ward off the effects of RLS or depression or loneliness. The only time I feel my RLS is when I sit down at night after an active day.
I wrote a posting just under this one about using a simple TENS unit. If you cannot make one yourself find a friend who's good with electronics to build one for you. Give this a try. It just might help you.
If I were you, I'd stay away from the drugs.... you're way too young to get hooked for the rest of your life. I'm lots older than you are and RLS, while sometimes a paid in the butt (pardon the joke), is not the end of the world. I'm glad to say I can manage my RLS with a $15 home made TENS unit, positive thinking and staying as active as I can.
No drugs for me, thank you!
Posts: 10 | From: Connecticut | Registered: Oct 2009
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Hi YoungandKicking: Sorry, I disagree with Steve. If taking a pill helps you have a better quality of life than I'm for the pills. I am 73 and had RLS for as long as I can remember, maybe 30 or 40 years at least. For the last 15 months I have been taking Mirapex and before that tried many other medications. But have had more success with the Mirapex. At least I can get some sleep. My granddaughter, who is 27 also has RLS. Hers isn't as severe as yours, or mine. Of course you have to use common sense when it comes to taking medicine for any reason. I suggest you get and read, "Restless Legs Syndrome, Coping With Your Sleepless Nights." by Mark J. Buchfuhrer,MD, Wayne A. Hening, MD,PhD and Clet A. Kushida, Md, Phd. Dr. B. (Buchfuhrer) is an expert in RLS. He has a sleep clinic in Downey, Calif. This book is great and will help you understand all about RLS. Don't give up, RLS is a battle but you can learn to deal with it. Learn everything you can about it. And try to find a doctor who will work with you (this isn't easy to do). Read the Mayo Clinic Algorythm, and this site is a great place to come an vent. I wish you the best. And as for the TENS unit that Steve mentioned, I've been looking into how it helps RLS. Maybe it does and if it does, go for it. But some people believe that putting a bar of soap under their sheets helps their RLS and the same thing goes, if it works for you, wonderful. But most people get no results. There are some very knowledgeable people that frequent this site and I'm sure will be able to encourage you. So Welcome and keep trying. Look forward to hearing from you again. BETTY/WV
Posts: 99 | From: West Virginia | Registered: Mar 2005
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Hello Again: Try RLS.org site, also a wonderful place to meet people with RLS. I have found so much encourgement from these 2 sites. There have been times when I've "stood" at the computer crying, I would stand because the RLS wouldn't let me sit. And I would pour my heart out and know that those who read my posts understood what I was going through. That helped so much. BETTY/WV
Posts: 99 | From: West Virginia | Registered: Mar 2005
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I have had RLS for over 20 years. In fact it seems to run in my family. My symptoms are not just the creepy crawly stuff, but flat out pain. First the right leg, and then the pain moves to my left leg. I tried the usual meds with no relief. Then about 15 years ago I started taking 50 mlg of Tramadol (Ultram) which completely removed 95% of the pain, Within the past 2 years I have added Requip to the Ultram. I now am 99% pain free IF... I take the meds at 4 pm and again at 10 pm. It is also important for me to take them on an empty stomach. I have not felt the need to increase the dosage of either medications. My challenge has been to take them at the right times. I do find that If I am active, I may not feel the pain until 6 p.m., but it then comes on with a vengence.
I hope this info. is of some help to you. Dave
Posts: 1 | Registered: Jun 2009
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quote:Originally posted by Betty/Wv: And as for the TENS unit that Steve mentioned, I've been looking into how it helps RLS. Maybe it does and if it does, go for it. But some people believe that putting a bar of soap under their sheets helps their RLS and the same thing goes, if it works for you, wonderful. But most people get no results. BETTY/WV
Betty: Are you saying you equate the "bar of soap" theory with a device like a TENS unit? If the unit is truly snake oil then why is it regulated by the FDA in the US and require a doctor's prescription?
I'll go head to head with anyone on this but let's do it on my posting.
It's a potential solution that's cheap, safe and in many cases, effective... and has no side effects whatsoever.
Posts: 10 | From: Connecticut | Registered: Oct 2009
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You don't say if you've talked to your family Dr. about your rls. Many Drs. are not very knowledgeable about rls and if yours in not, ask him/her for a referral to a Dr/neurologist who is.You should probably have your iron levels checked and other non-genetic causes of rls ruled out {Secondary rls}. See the 'What Causes Restless Legs Syndrome' page on this website {click on Restless Legs Syndrome in the menu to the left on this page}.
Betty is right about you needing to read as much as you can about rls. In order for you to make some decisions you need to know as much as possible. Another website you need to read is rlshelp.org. They have a drug treatment page you could check out {#3 in the table of contents}.
Feel free to come here and reach out to folks here. That's what we're all here for, to get support/help and give support/help.
Btw, welcome to the board from a fellow Canuck. I live near Toronto.
-------------------- Kim Posts: 136 | From: Ontario, Canada | Registered: Nov 2005
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Hi Steve: The TENS unit is very beneficial for lots of things. I just don't know if it is for RLS. Like all other treatments, it may work for you and not others. I'm going to check it out and believe me if it helps I will use it. I may not be able to make one, but I understand you can buy them, with a prescription. Sorry if I upset you, I didn't mean too. I would like to hear from others who may get good results from the TENS units. Glad that you found something that works for you. BETTY/WV
Posts: 99 | From: West Virginia | Registered: Mar 2005
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OK so this is going to be long but I replied to everyone individually so you dont have to read it all. Thanks to all of you for replying.
Steve: I'm quite active. I am into mixed martial arts and usually train alot. I have actually stopped for the last 2 months or so, because i got depressed and lost interest when my RLS kicked in. I am willing to try to TENS unit. I want to try alot of things before taking drugs that I need to take on a daily basis. If it comes to that though, I will take mirapex as it seems to be a miracle drug for most people who are on it. I would simply rather wait as long as possible before taking drugs.
Betty: I have bee reading up obsessively on rls since I developped it. I have been on rlshelp.org and even sent a few emails back and forth with Dr. Buchfuhrer. He is really great. I also frequent rls.org frequently to read up on new developments. I am closely monitoring the new pro-gaba drug XP 13512 as it seems promising for us RLSers.
Dave: It is relieving to hear that your RLS has been under control with medication for 15 years. I guess my biggest worry is the fear of having no long term relief from this. Just this morning I was in bed thinking ''is this it for relaxing for me? will i ever be able to lounge around comfortably again?'' It's pretty depressing.
Kimberley: Fellow Canadian! I like toronto, but the leafs are another thing though ;P. I have talked to my doctor about it and it really made my mental state worse. She said there wasnt really anything that could be done, that mirapex is a last resort and that doesnt cure the problem and has side effects. She prescribed me quinine, which is totally outdated and doesnt work (I tried it anyways, it doesnt work). She did have some bloodwork done, and everything came back normal. I asked her to let me know if my ferritin was under 50, but all she did was have her secretary call me and say that it was ''normal''. Normal is considered 15 alot of the time, and for RLSers, they like to have it at at least 50. Oh well, guess that'll remain a mystery.
Anyways... i guess I am more worried about my attitude towards the problem than the problem itself. I am worried cause I want to be happy and this constant nagging feeling just wont let me forget! Are you guys happy?
Posts: 8 | From: Gatineau, Quebec, Canada | Registered: Nov 2009
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Steve: ...I am willing to try to TENS unit. I want to try a lot of things before taking drugs that I need to take on a daily basis.
My posting about using a TENS device for relief of RLS was removed by the moderator of the site. The web page it provided a link to is still up but you will have to do a Google search to find it. It may take Google's spider a week or two to pick it up.
I think it very wise that you are wanting to try alternatives before embarking on using drugs.
Hope things work out for you!
Posts: 10 | From: Connecticut | Registered: Oct 2009
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Steve: ...I am willing to try to TENS unit. I want to try a lot of things before taking drugs that I need to take on a daily basis.
My posting about using a TENS device for relief of RLS was removed by the moderator of the site. The web page it provided a link to is still up but you will have to do a Google search to find it. It may take Google's spider a week or two to pick it up.
I think it very wise that you are wanting to try alternatives before embarking on using drugs.
Hope things work out for you!
I dont understand why they would take it off... did they give you a reason?
Anyways, I'm not sure what you mean about the googling thing. Can you maybe PM me a link or something? I'd appreciate it.. thanks!
Posts: 8 | From: Gatineau, Quebec, Canada | Registered: Nov 2009
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Apparently their policy is you cannot provide links to products or services in your postings so the entire topic was deleted and I was booted off for a few days.
RE: Googling. I mean the search engine Google. It will have the page I created about my home-made TENS unit as part of the directory but it takes a while for it to "find it" on the internet. Maybe a week or two. Then if you do a search for something like "Using a TENS unit for RLS" it should appear early in the list.
Posts: 10 | From: Connecticut | Registered: Oct 2009
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