I have severe rls and am lost what next to do? I’ve tried every natural and prescription I’ve been advised about by doctors and naturopaths. Nothing works now. Am I getting immune to meds over time?
I also am so sensitive to meds I feel like I’m still high next day and unable to drive.
Does anyone know a natural treatment that can work?
Leg massage recliner?
Legercise pro?
Im so bad at this time I cannot even sit or stand at night when rls kicks in.
Do you know any furniture helps you sleep standing up? Is this the answer?
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Welcome to the forum. You will find lots of help, support and understanding here.
I will give you my normal advice some of which does involve medicines but then will give you some natural ones.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask 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. 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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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...
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, C, 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.
So many risks associated with Gabapentin. Many states have it listed as a Schedule 5 controlled substance. It has toome really ugly side effects, and withdrawal can be complicated.
The definition of a Schedule 5 drug is "drugs with lower potential for abuse than Schedule IV . " Since people with RLS don't abuse it, that doesn't matter.
All drugs have side effects even aspirin.
Gabapentin side effects usually disappear or lessen after a few weeks for most people. Some have side effects they can't live with and need to come off it. But withdrawal doesn't need to be complicated. It does need to be done slowly. The usual advice is to reduce by 100 mg every 2 weeks. If one does it slowly enough there with be no withdrawal effects.
What medications are you currently taking? SueJohnson has set out excellent information for you to start with.Dr Buchfuhrer says that 97% of RLS patients can be RLS free with the right doctor and the right treatment.
I agree with Sue and Jill’s. I am wondering if you are experiencing augmentation.
After augmentation I have found nothing that works for me except methadone, and, while I did not want to go down that road, I feel there is no other option but opioids.
After approx 4 months, I have titrated slowly up to 8.75 mg and think 10 mg should be sufficient to control the breakthrough symptoms. I am now sleeping mostly around 6 hours a night, sometimes 7-8 hrs, sometimes 4-5 hrs. I still cannot work out why one night is different to another.
Have you considered opiates yet?
Hang in there - there should be something that will work for you.
Gabapentin have allergy to. Prsmipexole and tramadol. Another med started with Q. Fave me restless legs on all my nerves in my body so bad paced for 3 days while detoxing taking 1 pill. Detox in bath with epsom salt.
But I had a stroke 1.5 years ago and since it’s worse and putting on weight. I’ve tried every diet (gluten free, keto , vegetarian paleo etc. but is there a list of foods to stay away from. I haven’t had full iron panel done yet or tried methadone.
I just read your bio and noticed that you marked pramipexole. That is a dopamine agonist.
Are you currently on pramipexole? If so, I strongly suspect you are suffering augmentation.
If so, look up augmentation and follow Sue’s suggestions. I have been there too, as I think many people on this site have. It is horrible to get off, and will take time, and things will get worse before they get better, but you will need to get off any dopamine agonists before you can get better.
If I have jumped to the wrong conclusion and you are not on any dopamine agonists, or have not just withdrawn from them, then I apologise in advance.
This is a hellish place to be, but you are not alone. There are some very knowledgeable people on this site and I can only suggest you follow the fantastic advice from Sue and Jools.
Thank you. I’ve tried most of the drugs people take for rls. Ropinerol, gabapentin and pramipexole and more don’t remember the names been so long with this. I am so sensitive to prescriptions I have such reactions to them. Gabapentin almost killed me. I’m allergic to this makes me swell and stop breathing. The other meds make me a zombie the next day I cannot wake up or drive anywhere. One year ago I hurt my back and given oxycodone which I cannot tolerate so my primary doctor gave me tramadol for pain. If I take 1/2 a pill with 3 .125 pramipexole it actually helps me sleep. But if I do this more than a few days. I never get back to normal. I mean seems I never come down from a high it produces in me. So I can function. Then when I stop it such headaches and I’m sick. I’ve stopped all prescriptions I’ve taken at some time so worried s about getting addicted. But just doing some meds when nothing else works. I’m so tired now
We need to know which meds you are still taking now.If you're on Pramipexole 3 x 0.125 pills, how long have you been taking them?
As everyone has suggested, you are probably experiencing worsening RLS caused by Pramipexole. It's a common problem. Everyone taking it will see their RLS become more severe.
So, you need to follow SueJohnson advice and get blood tests, raise serum ferritin via iron pills or infusions and reduce the Pramipexole very slowly.
As you can't take gabapentinoids like gabapentin or pregabalin, you will probably need a low dose opioid.
Many people have bad reactions to oxycodone, but do well on other opioids, like methadone or Buprenorphine.
You need to see a good doctor who will help you get off Pramipexole and find the right treatment.
Where are you? We can hopefully recommend a knowledgeable doctor near you.
The meds you're taking just try to soothe the symptoms of RLS not address the causes of RLS. The most common cause is inflmmation of the nerves and the most common cause of this inflammation is the food that you're eating.
There are lists online of foods which cause inflammation and lists of foods and vitamins that will fight this inflammation. I've eliminated my RLS by concentratingon lowering my inflammation.
You can find lots of help here, but please take the time to provide some more info.
Can you describe your recent experience with pramipexole -- How long did you take it for? Dosage? Do your RLS symptoms occur every day? every night? You say you have stopped all prescription meds. What other meds were you on recently besides pramipexole and tramadol?
If the RLS symptoms are sporadic, I would recommend that you start keeping a daily log showing what you eat, meds taken, physical activity, symptom level. Identifying triggers can help dramatically. They are different for everyone. Sue listed the common ones, but everyone is a bit different.
If your symptoms occur daily, then I would encourage you to think about this a little differently. The "good" meds (definately not the DAs - dopamine agonists like pramipexole) that help control RLS might induce dependence, meaning you need to keep taking them or the symptoms re-appear. This is different than addiction. A diabetic has to keep taking insulin - that doesn't mean they are addicted. RLS is a disease, and many of us need daily meds to control it. Your strong reaction to meds will make this challenging. So you will likely need to work with a knowledgable doctor to find something that works for you. Any doctor that recommends DAs should be avoided. The medical profession is woefully uneducated about and indifferent to learning more about RLS. So finding a doctor may be challenging. Let us know where you live so we can maybe give you a suggestion.
Yes, RLS is debilitating. Most of us here have experienced that. But most of us have found a workable protocol (meds, diet, activities, etc.) that controls it. So don't lose hope.
I am really sorry about you horrible reaction to gabapentin!
I missed the pramipexole in your profile and yes you are suffering from augmentation.
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 switch to the regular pramipexole because the slow releases ones can't be cut.
To come off ropinirole pramipexole) reduce by half of a .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 as Joolsg mentioned 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.
What city and state do you live in. I may be able to give you the name of an excellent RLS doctor.
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