looking for advice for RLS

[Tbone87]

Hi everyone, I am new here. Hoping to find relief for my RLS. I am located in the US. A bit of history, I’ve had RLS since about 2017. Started off moderate and was using cannabis for relief. Over time, symptoms got worse and smoking cannabis wasn’t working well. I then tried Kratom and got good relief for 6-8 months but began to get bad addiction and caused my RLS to flare up in the day from Kratom withdrawal. I eventually got off Kratom (that was miserable) and have been back on medical cannabis for a year. The edibles have worked great up now it seems to not be working. I take all kinds of supplements that’s I’ve researched but doubt it helps. I did see a neurologist and he gave me pramipexole but I didn’t like the way it made me feel and also didn’t help that much but I only took it a twice. I was also quitting Kratom while I was taking pramipexole so that could have been why it didn’t work? Anyways, looking to get some advice before I go back to see my PCP (who doesn’t seem to be knowledgeable of RLS). Thanks for any advice!

[ChrisColumbus]

As DesertOasis implies, various medications can trigger/exacerbate RLS. What prescribed and OTC meds are you on?

Iron levels are an issue for many RLS sufferers: if you haven't had a full iron panel blood test (preferably in the morning, after fasting overnight and after refraining from any iron supplements for 48 hours) you should get this done. And make sure you get the actual numbers, particularly serum ferritin, and report back here. (There is a wide 'normal' range for ferritin, but most doctors are unaware that RLS sufferers need higher levels).

Magnesium supplementation also helps some of us, but consider this AFTER checking and resolving iron levels.

Diet can also be a factor: too much sugar- and in some of us artificial sweeteners, too much caffeine .. - can also trigger RLS.

In my view: do not embark on ANY drug treatment for RLS - prescribed or otherwise - until you have investigated the above points.

Thankfully you only took Pramipexole briefly. This and other dopamine agonists that an out of touch doctor or neurologist might still prescribe while helping short/medium term, can make matters worse in the long term (a process called augmentation). Others here can recommend better alternatives IF drugs become necessary.

[Tbone87 in reply to ChrisColumbus]

Thanks, do you think augmentation is possible with cannabis? It was working well until the past week now it’s having hardly any effect and my symptoms are worse. I’ve had iron levels check but not a detailed test. I am going to schedule a detail iron test before trying anything else. As far as OTC I take magnesium glycenate, turmeric, lions mane, and gut probiotics (heard this helps with iron absorption).

[ChrisColumbus in reply to Tbone87]

I have no personal knowledge of cannabis but I've read that people using cannabis over a prolonged period may develop a tolerance of the effects. They may need more to get the desired effects or may experience dependency. Withdrawal effects can be reported where people become dependent. You should get advice from a medical professional.

SueJohnson has given you more detailed advice about full iron tests, the Mayo algorithm, and on gabapentin and pregabalin treatment for RLS in her Reply.

I personally wouldn't rush into a gabapentin or pregabalin prescription until you have had your blood test results: that should be arranged as a priority. Gabapentin and pregabalin are better treatments for RLS than pramipexole, ropinirole or rotigotine, but all drugs have side effects including these. However, that's up to you and your doctor or neurologist.

As to magnesium: yes, that helps some including me, but it doesn't help others including my brother! Even then I find that magnesium will not help me if I'm not careful with other meds or diet. Magnesium glycinate is however a good form in that it is bio-available and much less likely to cause adverse bowel issues than some other forms of Mg.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

As ChrisColumbus said the first thing you should do is have your ferritin checked. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 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. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin 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 (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

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. Keep a food diary to see if any food make your RLS worse.

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.

[Tbone87 in reply to SueJohnson]

Thank you, for OTC I just take tumeric, magnesium glycenate, lions mane, and gut probiotics

[Tbone87 in reply to SueJohnson]

My last test back in February 2023 didn’t test ferritin, but my TSAT was at 33% at that time. Should I retest for ferritin?

[SueJohnson in reply to Tbone87]

Yes - I would do that.

[David7]

RLS is tricky and requires a Dr. That knows the latest treatment methods and Medicines that work well. See if you can research a Dr. In your area that knows the protocol . What state do you live in?Contact the Restless Leg Foundation or ask in this forum for a knowledgeable

doctor in your state that can help guide you to lasting relief.

Kind regards,

David

[Tbone87 in reply to David7]

Thank you, I am in Virginia.

[SueJohnson in reply to Tbone87]

I am in Virginia and would recommend Dr. Stein in Falls church and Arlington. He also does video appointments - in fact I have never seen him in person. I don't know whether he prescribes opioids as I haven't needed them and he doesn't realize that gabapentin isn't well absorbed above 600 mg but is quite knowledgeable.

[Tbone87 in reply to SueJohnson]

Thanks so much! I will look him up.

[Tbone87]

No new medications.

[Tbone87]

nothing other then occasionally otc allergy medicine.

[SueJohnson in reply to Tbone87]

Do you mean antihistamines as some can make RLS worse?

[Nikos64]

Honestly, the best advice I can give you is to stick with mainstream medicine. I tried cannabis and yes it works, but you must inhale it and even if you vape it it harms your lungs. Cannabis is not a long term option for treating RLS imho and personally I don’t feel it’s all that safe. I personally wouldn’t try anything like kratom and other similar products. You don’t know what you’re getting and it’s been poorly researched.

Your best bet is to see a pulmonologist or a sleep specialist (often times they are pulmonologists anyway). Here in the U.S. they are the best trained and knowledgeable about RLS. Dopamine agonists like pramipexole are no longer front line treatments for RLS and they will significantly worsen your condition.

On this forum, Sue Johnson has excellent posts on how to deal with RLS . I found almost everything she posts helpful.

Good luck !!