Restless legs syndrome specialist in Albuquerque?

[BurntOrangeBleeder]

I was just over on Reddit.com, on their restless legs syndrome subforum, and a member posted that this website’s RLS section would be able, hopefully, to point me to an RLS neurologist nearby. I’ve been doing pretty well on a combo of gabapentin and ropinirole for some 7 or 8 years, but lately things have been worsening, so I suspect augmentation. So, any of y’all out here with me in the Land of Enchantment (not!) who can provide a name or two? Santa Fe would be OK , and I’d even be willing to travel to Colorado or the Texas Panhandle (Lubbock, for example) to see a doc who is worth a tinker’s damn. Thanks!

[ChrisColumbus]

Welcome to the forum.

I know that the last time I looked into RLS experts in NM I came up empty so have just had another look.

Unfortunately, as you'll know, there's no nearby RLS Quality Care Center - both San Diego and Houston are a long way away:

rls.org/quality-care-centers

And no RLS Foundation members have recommended anyone in NM on their site (you may already know this as well), but they have recommended a few in AZ, CO and TX - but none close, and this doesn't necessarily mean that these doctors are totally up to date with latest research and treatment:

rls.org/find-HCP

SueJohnson : anyone on your radar? And/or can you give your usual advice on coming off ropinirole etc?

[ChrisColumbus]

PS: I see that there is a Sleep Disorders Center at UNM Albuquerque which treats RLS, but how good it is...

unmhealth.org/services/slee...

It might be worth contacting them to enquire whether they follow the 2025 published AASM clinical practice guideline for RLS.

[SueJohnson]

Albuquerque - Dr George Uhl neurologist. He is on the RLS Foundation Scientific and Medical Advisory Board so is very knowledgeable. He is at the Raymond G. Murphy Department of Veterans Affairs Medical Center in Albuquerque. He might see non-veterans. You can call the Center at Phone: [phone] to ask. Let me know what you find out. It's also possible he can recommend someone.

[SueJohnson]

I have the names of several doctors in Phoenix if you want and in Denver. The problem with going out of state is you can't get prescriptions you can use in your state.

Meanwhile I can give you advice on your augmentation.

Your gabapentin won't help you while you are on ropinirole but might afterwards. You don't say how much you are on nor how you take it so I will just give you my usual advice as if you weren't taking it.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the gabapentin the beginning dose is usually 300 mg gabapentin . (Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason .

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers ferritin and transferrin saturation (TSAT) numbers and reply back here with them. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Matrix]

my dr only offered me more Amytriptaline which has done nothing . It’s so painful I look like death warmed up . Why won’t it stop xx

[SueJohnson in reply to Matrix]

Amytriptaline makes RLS worse for most as it is a tricyclic antidepressant.