I am new here and I joined the group to try and help my wife with her RLS. I have been trying to find a way to help her with it for quite some time to include chiropractic visits (which the last chiropractor caused her more pain and she stopped), oil massages before bed, Calcium and Manganese supplements, She is currently taking medication for it Ropinirole (A drug commonly used for treating Parkinson's Disease), and I have also tried to get her to take iron pills (which she hates taking due to the metallic taste, even if they are coated).
I came upon this page when I was searching for pads called Kailo, that are claimed to be for pain mitigation and I was wondering if they could be used for RLS?
I have done some research on the effects of chiropractic intervention on RLS being a nervous system disorder and wanted to get her some relief. I also do believe she is hypoglycemic at times and I have read this can trigger RLS.
She suffers from RLS almost every night and I am just needing to find something that can help her get a restful night of sleep.
Ok, that is it for now, looking forward to finding some ways to help my wife with this.
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PrinceValium
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Welcome. Lots of information on this forum, so do read around a bit. You can use the search function. In my app on my phone I always have to include 'rls' in the search terms, otherwise I also get results from other fora. But that may not be the case on the web version.
I don't know where you are based, but in any case both the UK and US RLS foundations have good info on their website: rls-uk.org and rls.org respectively. The US has more, but only partly freely accessible, whereas the UK has clearly organised menu-based info.
Two important things for you to research now: (1) the role of iron and (2) augmentation. Blood iron values for people with RLS should not be just 'normal', but rather high within the normal range. Especially the value for ferritin (iron stores). Augmentation occurs frequently, sooner or later, when you take a dopamine agonist (DA) for RLS. Ropinirole is one, pramipexole and rotigotine are the main others. Augmentation is a paradoxical worsening of symptoms. It should not be treated by an increase in dose, but rather by a reduction and often eventually discontinuation of the (or all) DA.
Tell is more about the symptoms and the medicines of your wife, and you'll get more tailored information and advice. I'm off to bed now. Others will most likely add with more or more detailed info.
And chapeau 👏🏻 to you for helping your wife. Most people with RLS have to face people around them, including doctors, who do not really understand how debilitating this disease can be.
I do everything I can for my wife and it has been something I have tried to help her with for quite awhile now. It is good that I found this sute as I will have to look around and see what else I can learn.
Check out my posts about using caffeine. I know it sounds counterintuitive, but it works in small amounts. Think about how ADHD is treated, also counterintuitive. I've had severe full body RLS for about 45 year. Well it started with just legs until my late 20s, early 30s.
I am sure you'll get plenty of ideas here. the people here are really helpful. If possible, we all just should be each other's doctors.
Anyway, Could you tell us the dosage your wife is taking ?
Ropinerole is one of the Dopamine agonists which are known to make RLS worse after an intial period of tremendous relief. At that point, most of the doctors who are oblivious to RLS treatment guidelines just keep on increasing the dosage which is just adding fire to fury. So the best way after that is to reduce the dosage and eventually try getting off of them. I say try because it is one of the hardest things to do. I've failed twice and I struggle everyday but relief is so elusive with the RLS.
Also, please get her ferretin levels tested. Ideally they need to be atleast above 100; however, I met a specialist a few months back and he recommended that it should be raised to 400 to expect any sort of relief. This again is tricky because one needs an IV Iron to get ferretin levels so high. Oral iron just isn't that powerful although for some people it works well. I am again in the former. I need IV Iron but I've not been received well by the doctors plus with this covid 19 pandemic its become even harder.
I have had it all my life. My mom called it growing pains but I’m not growing any more except growing old - I’m 73. So many comorbidities I won’t listen them. I finally found something thst actually helps. CALM. It’s a powder form of magnesium and vitamin C. I put it in with chamomile tea and honey every night. When mixing be careful. It foams up like Alka seltzer. It’s bitter, so put in enough honey or agave nectar to sweeten. I am hypoglycemic so I don’t use regular sugar, but honey or agave nectar or pure maple syrup. I use 2 heaping teaspoons. If I forget I wake up with rls and get up walking the floors screaming into a pillow into legs calm down. If too tired to make the mixture, I take 2 capsules of 500 mg of magnesium. I hope it helps
I hope the gummies work. Nothing works for me like the powder mixed in water or tea. Sometimes I just mix it in cold water with sweetener and drink it down (cupful) quickly. If gummies don’t help please try the powder b
Hi, as the others have pointed out iron is a major factor in RLS.
I appreciate that iron capsules might leave a bit of a nasty taste and other medicines might have side effects, but to be blunt, if your wife wants to improve her situation she has to compromise. There is no perfect solution for RLS.
Apart from taking iron orally, your wife might benefit from IV iron infusions, but these aren't easy to obtain and woukd be unwise without a ferritin test.
Oral iron is better tolerated if your wife takes "gentle" iron. Additonally, it's better to take it every two days, not every day. This is because, counter-intuitivelymore of it will be absorbed. It's also better to take it in the evening, on an empty stomach and with a glass of orange. This all helps better absorption.
If your wife has a vitamin B12 or vitamin D deficiency, taking supplements of these can help.
Unfortunately, things like chirapractice, osteopathy and acupuncture are usually of little help for RLS.
I am aware of patches called kailo and others called ncap. As far as I have read the claims made about these appear to have a very tenous scientific basis. The explanations about how they're supposed to work seem nonsense.
There is a huge variety of different CBD oil products and there's no consistent information about what the best formulation is. Some RLS sufferers do find cannabis helpful however.
A further thing your wife could look at is to see if anything is making her RLS worse. These things are called "triggers".
Firstly there are a variety of medications that can trigger RLS. These include
Tricyclic (e.g. amitriptyline) and SSRI antidepressants.
Some antacids especially the "prazoles"
Some antihistamines
Some anti-nausea medications
beta blockers.
What your wife eats or drinks may be a trigger.
Commonly alcohol, refined sugar and caffeine can trigger RLS.
Any carbobydrate may be a factor for some folks.
As the others say, ropinirole is a dopamine agonist (DA). These were the first medications to be specifically used for RLS. They are also used for Parkinsons disease in a higher dose.
The problem with the DAs as has become increasingly apparent is that after taking one for a while for some years, for others only months, they lose effect. Doctors tend to deal with this by increasing the dose, but this can lead to a condition called augmentation. As the others have mentioned.
It does seem, from what you write, that the ropinirole is not working for your wife. It may be tempting to increase the dose. She may have already increased it .
Increasing it is not at all advisable. If it's not working, it might be better to switch to an alternative medicationwhich does not cause augmentation.
Yes the Ropinirole is not working like it has in the past and she already increased the dose. I will try to go get her tested for ferritin levels as soon as I can (getting her to go to the doctor is like pulling teeth). She has been taking calcium and magnesium suppliments (500mg each I believe) as well as B12, prenatal, Biotin, and Apple Cider Vinegar pills.
She is well aware of the repercussions of antihistamines and doesn't take anything with that included. I have also tried having her use the compression socks and they worked well for a bit then she stopped using them due to it causing her pain close to her ankles.
I will keep looking into this site and see what else I can learn.
Hi, what dose of Ropinerole is your wife currently taking? I would suggest reading the pinned posts on augmentation. You have had some excellent advice
Thank you for trying to help your wife so much. Yes, people need to be careful with the compression socks, they come in different levels of compression. Did she consult her doctor before using them?
I can appreciate anybody's reluctance to go see a doctor, but it is up to her really.
In the circumstances you describe it would help to start on an alternative medicine, an alpha 2 delta ligand, i.e.either gabapentin or pregabalin.
In this case it's better to start on the new med before reducing the ropinirole. It takes these meds about 4 weeks to start working. THEN she could slowly reduce the dose of ropinirole - s l o w l y.
Reducing the ropinirole will cause withdrawal effects, RLS symptoms will worsen temporarily.
Your difficulty is getting your wife to consult a doctor and having a doctor that's familiar with prescribing an alpha 2 delta ligand for RLS.
She may be reluctant to see a doctor out of anxiety. Sometimes I've had doctors whose manner has been patronising and I've found that offputting as well.
Hopefully you can reassure her that a simple change of medication can make a difference to her RLS.
I was suffering significantly from augmentation for years before switching from a dopamine agonist to gabapentin. Now I rarely suffer RLS symptoms at all.
Thank you we will look into it. We have a general practice doctor and not someone specializing in RLS, it is through Kaiser. I will look into if we can see someone who specializes in RLS and how to properly treat it.
Bravo for seeking help for your wife. Everyone has given you excellent advice and it sounds clear that your wife is suffering augmentation as pointed out.
Sadly, she will continue to have RLS badly every night until she gets off the Ropinirole.
Nearly everyone on this site has joined to ask for help when their RLS worsens due to augmentation. The only option is to reduce the dose very, very slowly. She will need to ask the doctor for the lowest dose pill ( in UK I think it’s still 0.5mg) and get a pill cutter ( Amazon sell them) to cut the pills to 0.25mg size. Reduce by 0.25mg every 2 weeks. With each reduction the RLS worsens but settles ( but it’s still there).
Ask the doctor to help by prescribing a strong pain killer like tramadol to deal with withdrawal symptoms.
She should start taking an alternative med while reducing the Ropinirole. Pregabalin or Gabapentin are good options so ask your doctor to prescribe. Pregabalin takes 3 weeks to become fully effective so she can increase the dose slowly up to the recommended dose for RLS.
Withdrawal is tough but raising ferritin can help a little at this stage. Try gentle iron ( ferrous bisglycinate) in pill and patch form every other night ( it raises levels faster) . You don’t get the metallic taste.
I really wish your wife strength getting off Ropinirole. Once off it, the severity of the RLS will diminish and the pregabalin or Gabapentin should give her relief.
Tramadol doesn’t touch my RLS. I’ve also read that it is a dopamine agonist as well and may cause some augmentation if taken long term Not sure. Not a doctor. 😊
I have expressed the need to cut back on the Ropinirole dosage to my wife and she has agreed to go from 1.0mg to 0.50 immediately. I am also having her take some apple cider vinegar before bedtime to help regulate her blood sugar while she sleeps to hopefully help the transition from the meds reduction.
That sort of reduction shall bring severe withdrawals. I hope they don't and I'm sorry but it will. Please try 0.75mg and then after a couple of weeks try for 0.5mg.
Good for you for being so supportive. Order Kratom on the internet. Red is best. 1/2 tsp is good to start. Let it soak in a little orange juice first so it dissolves. If she find she needs more than 2 tsp she might add the smallest ropinarole pill (0.25). Or a little marijuana candy. If she’s taking more than 1 mg of ropinirole now she may have augmented and you’ll have to taper her off. Don’t try until you have the kratom. This is a great rls site. bb.rls.org.
Oddly enough she reduced the medication to 0.50mg and I have been having her take an apple cider vinegar pill with dinner before bed. She has not been complaining of leg pain since doing that so far. Thanks I will look up the Kratom.
Please give the small dose of caffeine, as I have mentioned in another thread, RLS and Caffeine. It is all I use now, and have for the past 12 years. I've had severe RLS for about 45 years.
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