Long time sufferer and new to this group

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.
BookmanJoe
Posts: 6
Joined: Thu Feb 07, 2019 6:43 am

Long time sufferer and new to this group

Postby BookmanJoe » Wed Feb 27, 2019 7:16 pm

Hello everyone,
I have had RLS for as long as I can remember. I'm a 65 year old male. I taught dance for thirty years, and during that time I rarely suffered. I stopped teaching about 15 years ago and have owned a used bookstore for the last 16 years. My RLS has been getting worse and worse over the last several years. I've tried a weighted blanket, an inflatable pressure boots, and several drugs. I'm currently on Mirapex, which seemed to work for about two weeks, and now is not working. .125 mg is the dose. I am on opioids for my back (I;ve had two laminectomies, and two fusions, with cages). I take Hydorcodone and Nycynta. I know that they sometimes help RLS symptoms. I take all kinds of supplements, pretty much everything that is recommended, and then some. I have a cannabis card, as it is legal in my state, and THC helps a bit. Oh, I also tried Restiffic, which didn't work for me. I'm going to try the OSKA device, to see if that works. It is pricey, but not as expensive as other similar devices. I just had a blood test for my iron levels, and looking forward to seeing the results. I am hoping that perhaps an iron infusion might help.

Thank you
Joe

stjohnh
Posts: 878
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Long time sufferer and new to this group

Postby stjohnh » Wed Feb 27, 2019 7:52 pm

Joe, going the iron route is the most natural and basic way of treating the BID (Brain Iron Deficiency) that causes RLS. It looks like you are thinking this as well. Your doctor probably doesn't know this, and so you will likely have to educate your doctor.

Download and print a copy of this paper
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub

Highlight the first sentence of section 5.3.4 stating that this iron therapy is now considered first line treatment (meaning IV iron should be one of the first medicines doctors use to treat RLS). Give a copy of the paper with the highlighted section to your doctor.

The guidelines also state that unless there is some problem, a patient should first give a 3 month trial of oral iron, so if you haven't done that, start now.

Don't be dismayed if the the doc says your blood iron (ferritin) is "normal." The normal values were set by the lab to mean if the ferritin is within a certain range, additional iron will not help your blood.
This is an important distinction since there is no test to detect BID (Brain Iron Deficiency=low brain iron). Since you have RLS, we already know you have low brain iron. The paper outlines the steps for the doctor to take to be sure you have a reasonable likelihood of responding to Iron and that you won't get too much iron (very bad as well).

The brain is separated from the blood by the blood-brain barrier. This keeps lots of bad stuff that can be in the blood from injuring the brain. To get iron from the blood to the brain, people have genetic mechanisms specific to moving iron from the blood to the brain. People with RLS have defective iron transport, so the usual circumstance is the blood iron level (ferritin) is "fine" but the brain iron level is not.
Blessings,
Holland

BookmanJoe
Posts: 6
Joined: Thu Feb 07, 2019 6:43 am

Re: Long time sufferer and new to this group

Postby BookmanJoe » Wed Feb 27, 2019 8:29 pm

Thank you Holland. That's quite a long article! I'll have to go through it carefully.

stjohnh
Posts: 878
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Long time sufferer and new to this group

Postby stjohnh » Wed Feb 27, 2019 8:38 pm

I presume you have some scientific background if you are planning on reading it. Let me know if there are parts you don't understand.
Blessings,
Holland


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