Has anyone either found a medication or had an iron infusion and been "cured" completely?
If not, what helps control it, how long you've taken/used it for?
Has anyone ever had a GP or healthcare provider understand what RLS is and how to treat it from the first visit?
I'm new to this site and already had so much information and understanding - something I've yet to find in a GP. They've all pushed the patches that I've learned here should not be used. The GP suggesting them was offended I refused and told me I'd not be prescribed anything else until I'd tried them!
I read here that massage guns sometimes help. Well, that bit of advice has saved me (thanks again SueJohnson).
I'd tried pacing, trying to get up and down stairs (that IS helpful for the RLS but not very safe for me), stretching, thumping my legs (I think everyone will recognise these methods!), all of which can last 30 minutes to an hour plus at a time.
Now, I'm 10 minutes a time with the massage gun that was bought for back spasms and rarely used and I can get back into bed for another hour or two (if I'm lucky).
If you haven't tried one, have a go. It's not a cure but it is a relief for short time.
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Princegwyn
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Not sure if this counts as a cure but a temporary remission.
I’ve had RLS since childhood and it was particularly bad during my high school years. But oddly it went away from age 19 to age 35. During that time the symptoms were negligible if any. However, starting at age 28 I started gaining weight and started experiencing obstructive sleep apnea and it was around that time I also started experiencing RLS again. Both the RLS and OSA progressively got worse. At age 48 i started seeking help from my doctor.
To this day I wonder why I had no symptoms. Perhaps it was because I was in excellent physical health at the time and was running 5k s several times a week.
I’ve been trying to lose weight because there’s a *strong* correlation with weight and OSA and also a strong correlation with RLS.
Now at age 60 I’m losing weight and trying to get my BMI under 25. Unfortunately, my doctor told me a few days ago that RLS and OSA will be with me for the rest of my life although I might be on fewer drugs. But I still retain hope that I might beat this disease.
There seems to be no cure but lots of treatments that help stop RLS. We need to know the actual cause and I'm not convinced it's just caused by iron deficiency . Therapulse for 10 minutes on each calf works for me..but not while it's on the legs..after . No medication for me. Garlic/ginger paste worked for a while, but didn't prevent totally. Magnesium butter from Sweet Bee rubbed on soles of feet and legs helps...
No alcohol last thing, caffeine, sugary sparkling drinks...all triggers for me.
I agree with you in that, in my case, I don't think that iron levels have any effect on my RLS. Neither does it seem to be triggered by anything diet related. The triggers for me are tiredness (if I don't get a decent amount of sleep I usually get RLS in the morning, and certainly in the evening) and just thinking about RLS. For example, if I in a situation such as a concert, theatre or cinema, I'm absolutely fine until the performance or movie begins. At that point RLS begins and builds until it becomes intolerable. Surely this is nothing to do with iron deficiency. I'm sorry that this doesn't help the original poster re a cure, but I was interested to read about your experience. I would love to know more about the psychological triggers for RLS. Once it's in my mind that RLS might be a possibility, it seems to become an inevitability.
Hi Jools. thank you and everyone on this wonderful HealthUnlocked site for all your postings which have been hugely helpful to me in planning my next move - I'm in the 'severe' category scoring 38/40 on the RLS International Scale. Tried all the Alpha2Delta and DAs and now my GP is willing to try me on small dose of Buprenorphine. Can I ask - do you take the sublingual tabs or use patches? I don't have RLS during the daytime (yet) - mine kicks off anytime from 7pm onwards right through the night, generally quietening down circa 5-6am. Would I be right in thinking the tabs would be better as I don't need a constant feed of opiod throughout the 24 hours?? what do you advise? I want to be well informed at my GP apt.
Buprenorphine pills work better for RLS as RLS follows the dopamine cycle. Dopamine drops from 6/7pm and is at its highest around 6/7am.Buprenorphine pills have a 25 hour half life, but release most of the dose within the first 12 hours. So, pills work brilliantly for the 12 hours after you take them.
The patches release a steady, even hourly dose over the 24 hours so work better for pain relief. Most RLS patients have reported that the patches stop working after 4 days. They're supposed to last 7 days. So patients then experience opioid withdrawal AND rls for the last 3 days.
So, ask for pills. Start low, at 0.4mg. I cut my pills and take 0.2mg at 9 pm and 0.2mg at midnight. I did this to counter breakthrough RLS that started at 9 pm a few evenings.
Buprenorphine is red listed in many prescribing areas so ask your GP in advance. A specialist may need to prescribe it.
Side effects are common and include severe nausea, sweats, palpitations and constipation.
Plan in advance so you have remedies to settle the side effects.
For nausea I used medical cannabis and it settled within 2 weeks. For sweats I take cetirizine and for palpitations and panic attacks I added low dose pregabalin, 25mg.
I do hope your GP is willing to listen.
I presume you're off dopamine agonists and have had iron panel blood tests?
Sincere apologies Joolsg for my delay in both acknowledging your response and in thanking you most sincerely for your detailed information and guidance. I had hoped to have an update before now to post on the forum but I had a few hitches. Anyway, all is well that ends well...
GP prescribed the Buprenorphine – Subutex 0.4mg. Pharmacy had trouble sourcing it but I got it within a week. First night took 0.4mg at 9.30pm – Zero RLS for the first time in years, a miracle! However, at 7am next morn I felt ill and had two hours of vomiting. Felt v disorientated and had ‘sweats’ that day so didn’t take any that night. Next night I split tab and took 0.2mg. Zero RLS again – fantastic! But felt ‘whoosy’ next morn and a little nauseous and sleepy. Next night I split the half tab – taking 0.1mg (not exact as pill began to crumble when cut so small…). Some RLS in the early part of the night but 12-5am was zero RLS and body fairly calm for those 5 hours, getting 2-3 hours sleep uninterrupted (as opposed to my usual 45mins max intervals). Same drill for past few nights and same outcome, which is good. But I wonder should I try to up the dose again to 0.2mg in a few days when I know my system has got used to the drug, in the hope that I get an even better outcome re RLS and sleep. I’d appreciate your suggestions and anyone else who takes Buprenorphine.
Also, I’m following the prescription guidelines fully re NO Alcohol. But we have some family celebrations coming up this month and I’m wondering as my dose is very low if it would be safe to have a glass of wine? What is your experience re alcohol and can I throw out this question to members of the forum?
I would increase to 0.2mg to fully cover the RLS.The nausea & vomiting seems to be common in the first 2 weeks.
I used my medical cannabis oil with 20% THC ( 0.2 - 0.3ml.at night & 0.1ml in daytime if nausea was still there).
It stopped the nausea completely.
If you can't source medical cannabis, ask for Zofran anti nausea pills. They are RLS safe.
For the sweats I use a small dose of pregabalin (25mg) and 10mg cetirizine at night. And I have a glass or two of alcohol occasionally. It's never been a problem for me with Buprenorphine and alcohol has never made my RLS worse.
I second Joolsg. I also take buprenorphine, but never had the nausea whereas Jools did. And I do take the occasional glass of wine without any ill effects. Just be cautious and take it slow. You have done wisely, splitting the pills.
Cure? I don't know about that - even without symptoms it seems to be lurking in the background! I had growing pains as a child - I remember it being said I was anemic and they treated me with iron supplements. Fast forward 50 years! Severe RLS - NO sleep - went on for months - docs said try these muscle relaxants - no help. Finally, I found this forum and Johns Hopkins Neurology website. Docs continued to wave DAs at me as "nothing else will work". Iron supplements (ferous bisglycinate) eliminated the severe RLS in a week (ferritin went from 49 to 105 in 3 months). That was 2016! I still have sleep issues but only rarely anything resembling RLS. So what was it? Why did I become iron deficient in the first place? I have 2 theories - one was an un-diagnosed concussion from a ski accident 8 months prior and/or SIBO (Small intestinal bacterial overgrowth) from a course of Cipro antibiotics. SIBO has been linked to RLS as a cause of poor iron absorption.
Questions like this always get me to re-think my health history. I NEVER had sleep issues at all - until that episode in 2016.
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. If you read my many posts there 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.
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.
that's an impressive reply...I'll look at oxalates more closely to see if there's a relationship to my RL. Mine is genetic but it surely can be improved from severe to moderate and hopefully reduce medication, 5mg Methadone atm. Thanks.
Hi Princegwyn, I’m 69yr old woman from north wales. I’ve had RLS for 30 yrs and I’ve tried everything. I’m on a prescription of 2mg Ropinirole nightly but I only take 1mg. I refuse to let these tablets get the best of me! They do help but I know by listening to everyone on this site that you become addicted to them and then need to take more and more to get any relief. Like you I bought myself a massage gun (from Amazon) and yes it does help to relieve the symptoms for a while hopefully while you fall asleep for a couple of hours! But the very best information I EVER had was from my very down to earth yoga teacher. She said it was a lack of magnesium. I told her I already take magnesium before bed. She shook her head and said no! Magnesium is not easily digested and can actually just be dissolved by stomach acids before being flushed out of the body. The best way to absorb magnesium is (would you believe) through the skin! She advised me to have a salt bath every night. Any salt, sea salt, Himalayan rock salt or even Epsom salts! I did this that very first night with the Himalayan pink salt I had in the cupboard and OH MY GOODNESS!! The relief I had, I actually cried with relief. Now, I’ve researched it on line and I’ve bought a Dead Sea magnesium oil spray (from Amazon again) which I use morning and night. I still have a salt bath about three times a week but I’ve got problems with my knees so I can’t actually get in or out of the bath so I’ve bought a seat to go across the bath and sit on that with my legs in the water. But yes I really do think I’ve mastered this nasty mind bending condition after so many years. Please do try it. You never know, it may help you too! Good luck!
Hi Princegwyn, I’m 69yr old woman from north wales. I’ve had RLS for 30 yrs and I’ve tried everything. I’m on a prescription of 2mg Ropinirole nightly but I only take 1mg. I refuse to let these tablets get the best of me! They do help but I know by listening to everyone on this site that you become addicted to them and then need to take more and more to get any relief. Like you I bought myself a massage gun (from Amazon) and yes it does help to relieve the symptoms for a while hopefully while you fall asleep for a couple of hours! But the very best information I EVER had was from my very down to earth yoga teacher. She said it was a lack of magnesium. I told her I already take magnesium before bed. She shook her head and said no! Magnesium is not easily digested and can actually just be dissolved by stomach acids before being flushed out of the body. The best way to absorb magnesium is (would you believe) through the skin! She advised me to have a salt bath every night. Any salt, sea salt, Himalayan rock salt or even Epsom salts! I did this that very first night with the Himalayan pink salt I had in the cupboard and OH MY GOODNESS!! The relief I had, I actually cried with relief. Now, I’ve researched it on line and I’ve bought a Dead Sea magnesium oil spray (from Amazon again) which I use morning and night. I still have a salt bath about three times a week but I’ve got problems with my knees so I can’t actually get in or out of the bath so I’ve bought a seat to go across the bath and sit on that with my legs in the water. But yes I really do think I’ve mastered this nasty mind bending condition after so many years. Please do try it. You never know, it may help you too! Good luck!
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