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Restless Legs - Any suggestions as seen many doctors and medications
Sleep Health | Last Active: May 20 9:16am | Replies (149)Comment receiving replies
I've seen several references to the RLS foundation, but when I looked at it, they wanted donations and well...guess I'm cheap as have tried so many things from people and doctors over the years that not sure I want to be solicited constantly. Not saying they would but found it interesting that the first thing I see is a pop up to donate in order to join. It's like my father in-law who has Alzheimer's and the WORST by far and I mean by far was the Alzheimer's foundation for soliciting. Poor dad was giving away hundreds of dollars a month due to solicitations and he has Alzheimer's and didn't realize...sometimes he was sending checks 2 or 3 times a week. My sister in-law caught it and took away his checkbook and only donated to a few organizations that dad had donated to for years. He was not only receiving calls but mail like 3 times a week after week after week. Needless to say, I stopped donating to them after all that, but it makes me wonder on the RLS foundation when the first thing on the website was wanting money.
Replies to "I've seen several references to the RLS foundation, but when I looked at it, they wanted..."
I have had only 1 solicitation since I joined & that was for a membership renewal one year after I joined.
The quarterly newsletters are usually full of information. For instance, my husband got little to no relief from pramipexole, ropinerol……only augmentation. It got worse, earlier in the day. We discovered that the only thing that would work for him was oxycodone. One of the newsletters discussed augmentation, ferritin levels & oxycodone.
That’s my 2 cents. I’m sure that some organizations solicit heavily, the RLS Foundation hasn’t.
@3dogs Hi. My RLS has pretty much ruled my life since a child. I remember hearing my dads knees pop and crack as he walked up and down the hallway late night/early morning, as well as my earliest experiences with RLS in the 1970’s. Its been 50 or more years now. I am a retired nurse now. It was considered a phantom chronic condition. I was afraid to tell anyone about it. In 2005 I lied to my dr and wanted Ambien for sleeping issues. It worked well I also got a benzo for anxiety. I was able to sleep now. Then I got ill and was given dilaudid and norco for pain. I was OVER MEDICATED now. I actually had a sleep walking episode. I quit the ambien and narcotics. Benzos were enough. About 2014 i didnt want the benzos anymore. Oh my Lord!! Was i in the shock of my life. That RLS was back! I wasnt prepared for it. I did everything i could Lotions, supplements, I found the RLS FOUNDATION. It was a great tool for me. I tried Requip. It gave me tremors in my hands so I stopped it. This is when this opiate epidemic was in full swing. So, I told my dr i got hand tremors. He then said take more Prescription strength antihistamine.?!! RLS is still treated like the phantom condition. So I said my back hurt and could i get tramadol 2 tab BID. NOPE sorry tylenol doesnt work for me. Ive had RLS since a little kid. Tramadol is the least potent narcotic out there. I dont get ‘high’ at all but 2 tabs, 100mg at night stops the RLS last 10 yrs. Without tramadol i probaby would have killed myself 8 to 9 yrs ago. Tylenol doesnt work. All my labs are in normal ranges. I pay the membership fee to the Foundation because without them no one would be doing the research like they do.
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I understand your concerns, they offer a great deal of information without you joining. I opted to join , first of all because I was desperate, spent 2 months with little or no sleep after I stopped meds ,but mostly so I would receive the newsletter “Sleepwalker” through the REAL mail, plus access to all the webinars. They only send out 1 email each month.