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Jamie
Posts: 2
Joined: Sun Jan 24, 2021 2:29 pm

Just joined

Post by Jamie »

Been dealing with RLS for 15+ years. I am a physical therapist. I have/continue to perform daily stretching and moderate exercise. I have tried epsom baths. Mirapex. Lyrica. Gabapentin (or as I call it, GABA-stupid). Trazadone. IBP. Tylenol. Sleep aides. Massage. Compression hose magnesium supplements. I think that about covers it. Sleep is poor at best (4-5 hours at most, sometimes up the entire night pacing the house and stretching). Again, I know all these treatments have more than likely been tried by everyone in the group. Any other ideas? The idea of just going to sleep at night is unnerving because of the daily symptoms. Thanks

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Just joined

Post by Rustsmith »

Has your doctor checked your serum iron levels with ferritin being the most important? RLS is due to a deficiency of iron in the brain. But even if your ferritin level is over 100 (normal min is 20, so you need to know the number), some of us simply cannot get enough iron across the blood brain barrier.

If your iron levels are fine and because you have already tried Mirapex, Lyrica and gabapentin, then the only thing left would be the opioids. A low dose of an opioid is usually all that is needed to resolve the RLS urges to move. Sometime of us still need to add Lyrica, gabapentin or marijuana (assuming that is legal where you are) to help with sleep. Of course, the challenge with the opioids isn't the med, it is finding a doctor willing to prescribe them and then fighting through all the bureaucracy to get them.

As for physical exercise, it doesn't hurt but as you have experienced, it doesn't fix things either. I used to be a competition class runner and trained year round for distances from 800m to full marathons. I had some of my best races while my RLS was totally out of control.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Just joined

Post by stjohnh »

Sounds, like Steve says, it is time for iron or opioids.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 83A240A179
Blessings,
Holland

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined

Post by badnights »

Iron! (As has been said.)

And consider diet. There are no studies on this, but I stopped eating gluten because of anecdotal reports that WED/RLS symptoms were relieved that way. I stopped dairy as well at the suggestion of my doctor. Over the next 2 years, I cut the dose of opioid I needed to half of what it was. Other diet changes I made - I don't know which was responsible, or if all of them had to be done - were no added sugar, no highly processed food, very low carbohydrates, and lots of vegetables of different kinds.
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.

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