learning to help others

[Betrue2u]

Hi I am new and was recommended this forum by a client who is a RLS sufferer. I am trying to gain insights and understanding from those with lived experience in this situation to be offer better help to this client and potentially others. Thankyou.

[Amrob]

Welcome to the forum and good on you for wanting to better help your client.

To guide responses, it would be really helpful to know:

a) what line of work you're in eg. carer, mental health worker, medical professional etc.

b) whether you're looking to find out more about the physical symptoms, the emotional/mental toll of the condition, the impact on one's day to day functioning or otherwise.

[ChrisColumbus in reply to Amrob]

I answered this because seemingly no one else had, and only then found that you had actually done so nearly 2 hours before. Do you perhaps have a time machine? 👽

[Amrob in reply to ChrisColumbus]

Doo-doo-doo-dooo...I can't actually explain that one Chris!

[Betrue2u in reply to Amrob]

Thank you, I work as a psychologist, and am new to this condition. My client has recently shared how much it affects her life and functioning as her GP is faciliating weaning off pramipexol after over 10 years of using it to treat RLS.

[Joolsg in reply to Betrue2u]

Reducing Pramipexole is described by the top RLS experts at Johns Hopkins University as 'hellish'. Withdrawal will cause very, very severe RLS and little to no sleep.It also causes suicidal ideation, depression and anxiety. Dopamine agonists are very strong drugs affecting the brain and so, withdrawing from them is extremely difficult and unpleasant.

Doctors have no idea how serious Withdrawal can be. Dopamine agonists withdrawal syndrome (DAWS) is very serious and is NOT rare!

Most people will need a low dose opioid to reduce the severity of symptoms at each dose reduction. Reduction is best done very slowly, by half a 0.125(0.088) pill every two weeks.

Raising serum ferritin above 100ųg, preferably 200ųg will also help reduce SOME of the severity.

If the patient has been prescribed pregabalin or gabapentin as a replacement med, they won't help the hellish withdrawal. They start to work around 4 weeks after the last dose of Pramipexole.

Some doctors, especially in the USA, are now prescribing methadone or Buprenorphine to help patients through withdrawal. They are both highly effective at low dose for severe RLS and do not cause addiction ( unless there's a history of abuse) or tolerance. See Dr Winkelman's opioid register.

All anti depressants and anti psychotics trigger/worsen RLS. The only safe options are trazodone or Bupropion.

Hopefully, soon, dopaminergic drugs will be banned for RLS. They ALL cause severe worsening of the disease and leave patients with permanently damaged dopamine receptors.

[Mongolia2020 in reply to Joolsg]

So what do you do after you have successfully got off dopamine agonists - I have done this with the help of methadone. I am now on 7.5 mg methadone and it is working quite well, main problem now being managing constipation.

Should I stay on 7.5 mg methadone or switch to gabapentin or Pregabalin or something else?

[Joolsg in reply to Mongolia2020]

Stay on methadone. It is highly effective for refractory RLS. If it's covering your RLS symptoms, stay on it. See Dr Winkelman's opioid register, set up to show the efficacy of low dose opioids for severe RLS.For opioid induced constipation, first ensure you eat a soft pear or papaya and a large portion of cauliflower or broccoli or cabbage every day. And at least 2 pints of water. Also take 2 magnesium citrate pills every night.

If that doesn't help, add flaxseed to your cereal or yoghurt.

And if dietary changes don't help, ask your GP for a supplement to help.

[Mongolia2020 in reply to Joolsg]

Thanks so much. I am so scared of being back in that dark place. Thanks for this site and thanks for people like you.

[TheDoDahMan in reply to Betrue2u]

I was suicidal after months of inability to sleep because RLS would continually awaken me. When I finally received low-dose (10 mg/day) methadone therapy from Dr. Mark Buchfuhrer, a renowned specialist, my symptoms were completely ameliorated. That was 5 years ago and I haven't felt a need to increase my daily dosage, as no tolerance normally develops at such a low dose.

[Betrue2u in reply to TheDoDahMan]

Hi there, this is the direction the person I am supporting is going. The absence of longitudinal research regarding different treatments has made her tenetative about her next step, given her experience of augmentation that was not monitored by her GP.

[ChrisColumbus]

All are welcome here, we have participants from all over the world. Feel free to ask questions: there are people here with a lot of experience and knowledge of RLS. Do you know something about RLS already: you mention clients - are you a doctor/other medical practitioner, a carer...?

You will also find useful information at RLS-UK and the US RLS Foundation:

rls-uk.org/

rls.org/

[Betrue2u in reply to ChrisColumbus]

Thank you, I work as a Psychologist.

[nocturne in reply to Betrue2u]

Your client is very lucky to have such a compassionate and caring therapist like you!

[Madlegs1]

A useful strategy is to read through the last few weeks posts and replies to get an idea of information.

For specific information, use the search button.

Any questions are welcome.

[Betrue2u in reply to Madlegs1]

Thank you I appreciate the kind welcome

[SueJohnson]

If your client is trying to wean off pramipexole this is the advice I would give. Since I don't know the gender of your client I will just use "you" in the answer as though you were the person with RLS.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off pramipexole reduce by half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. 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 1-2 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 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done 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 including in a multivitamin 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. 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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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 she is 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.

[SueJohnson]

Other things you may want to know:

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

PLMD (periodic limb movement disease) is treated the same way.

Up to 70% of people will eventually suffer augmentation on dopamine agonists (DA) according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

After many years on a dopamine agonist, gabapentin and pregabalin may not work. Then they need to go on a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals.

[Betrue2u in reply to SueJohnson]

Thankyou very informative. What are your thoughts on the long term use of buprenorphine? What happens after this?

[SueJohnson in reply to Betrue2u]

Buprenorphine works very well. Many people on this forum are using it. And it can be used long term.

[Edengirl58]

You may also be interested to check out Mind Body syndrome. Most MBS (also known as TMS or Psychophysiological Disorders) practitioners seem to be saying rls is to do with neural circuits misfiring, although this is new science. I am trying it for my rls and had amazing success with long covid. I’ve not had dramatic success so far, though am off my meds for rls with no worsening of symptoms. The unlearnyourpain.com website is a good place to look, and Curable app.

It’s great to see a therapist trying to find out more- well done.

[Betrue2u in reply to Edengirl58]

Very interesting. Yes a physio colleague has mentioned the book also.

[Merny5]

welcome to the forum. This is the place where you will find an abundance of accurate information from the Health Unlocked experts. Your client is very fortunate to have you. Our hope is to have doctors who treat RLS join this group to get the real story on this horrible disease.

[notnowdad]

I have helped dozens, and perhaps hundreds, of people get relief from RLS by following a low oxalate diet (LOD). However, after I found relief by avoiding oxalate in my diet 8 years ago I had to spend several more years figuring out why it was difficult to sustain the relief consistently. Over and again I proved to myself the concept was correct, but there was a missing factor that was mucking things up. Eventually I realized there were two factors which I had to discover by myself because they weren’t on all the websites giving advice about LOD’s.

First, when I happened to change my magnesium supplement from citrate to gylcinate my RLS came roaring back. After going through a process of tedious experimentation I proved to myself over time that the magnesium glycinate was a trigger. This opened a whole world of understanding about why a LOD can provide relief and why the available advice about oxalates was inadequate. Eight years ago all the websites were saying the meat products were essentially free of oxalate and safe to eat. Despite this advice I believed I had noticed that meat based gelatinous soups and stews would trigger my RLS. When I learned that gelatin is high in glycine everything fit together. In the past couple of years I have seen on the medical websites for LOD’s new advice to avoid gelatin because the scientists have noticed that it raises urinary oxalate levels.

The other key factor I had to discover through observing my physical reactions and online research is that most of the “non-organic” fresh fruits and vegetables in our grocery stores have been sprayed with an oxalic acid solution because it preserves “freshness and nutrients”. The food industry scientists who support this adulteration of our food with a highly toxic chemical claim that it must be safe because our bodies produce it. What they don’t say is that it is a dangerous waste product of a critical liver function known as the Citric Acid (or Kreb’s) Cycle. They should read the poison warnings on Bar Keepers Friend, the household cleanser which is pure oxalic acid and is the most effective product for removing iron stains.

It is common knowledge among scientists that taking vitamin C (citric acid) supplements raises oxalate levels in the body. I think this is an indication that a disruption of the Citric Acid Cycle should be investigated further. Scientists have recently discovered that oxalate can replace carbonate as the binding agent which attaches iron to transferrin, our body’s iron distribution vehicle. They also have found that when oxalate takes the place of carbonate the iron becomes “locked up” and doesn’t get properly distributed around the body. I believe all the focus on the benefits of iron supplementation is simply a “work around” for this malfunction of iron distribution but doesn’t address the root cause of the problem.

Because I was blessed with the insight that I could switch my RLS “on and off” by controlling the oxalate in my diet, I have made it my life’s work to perfect my understanding and to share the information to help others. Over these past years I have been able to convince many to other people to follow LOD protocols and prove that what I have achieved can be replicated by others. Their stories are available on the rls.org discussion board for Non-prescription Medicines, Supplements, Diet. As an example, in May of 2021 Deb212 posted: Several years ago I started weaning off RLS meds as I was experiencing augmentation. I’ve been medication free for 15 months. I was afraid I would never sleep again and then I found this post.In August of 2021 she posted: One thing that really helped was Jim’s information about how the offending food shows up 24 hours later. I was always looking at a closer correlation between eating something and symptoms but have seen it is 24 hours or the next night almost always. In April of 2022 she posted: Today I look back on one year ago and my desire to end suffering from RLS. I really didn’t expect a happy ending. Thanks to “notnowdad” and his excellent information on oxalates and their impact on RLS, I have a life that is worth living!!!

If you read my many posts on the rls.org site you will learn that my further dietary experimentations changed me from being a person with very severe allergies to seasonal pollens and dust mites, to being a person without allergies. The two modifications I had to maintain simultaneously in order to not have allergies were avoiding all the standard refined, bleached and deodorized cooking oils made from seeds (soy, corn, canola, etc.) and all forms of fluoride (in public water supplies, in the pesticides on our foods, and especially in standard non-stick cookware). I also avoid canned foods and drinks because of potential PFA’s in the can liners. And I don’t drink tea.

Amazingly, by following this extremely difficult protocol for several years I believe I have recovered my ability to tolerate dietary oxalate and not have RLS. Unfortunately I haven’t been able to prove that these remedies will work in other people yet. I am doing everything I can to get the scientific and medical communities to hear my story and do the research. I believe in my heart of hearts that fluoride disrupts liver function in some people and causes a low grade hyperoxaluria (overproduction of oxalic acid) by a disruption of the Citric Acid Cycle and the subsequent mishandling of glycine. Many of the medicines that can trigger RLS or cause augmentation (including Pramipexole and statins) use fluoride as an adjuvant because it enhances the “time release” aspect of the pill. I think when the liver is working to remove the medicine from the body it becomes vulnerable to the toxic effect of fluoride. On the subject of the RBD seed oils I have found research which explains how they are poorly absorbed in the small intestine and this causes inappropriate entry of bile salts into the colon and this causes damage to the colonic mucosa and this allows inappropriate absorption of oxalate from our foods. I hope you find this information useful.

[Marzipana]

So good of you, Betrue2u, to check out this forum for a client. For me, it has really been a Godsend to over the last several months. It's as if I finally found people who speak the same language and offer support, advice, and friendship. I'm sure you'll receive e a wealth of understanding of RLS!

[Betrue2u]

My client is very grateful too. So important to be seen.