I have recently heard of Pulsating Electromagnetic field therapy. (PEMF)It involves a device which is used quite widely for pain relief and a number of conditions. Vets use it on horses! It has been trialled with some success for RLS. Does anybody have any knowledge ? I have suffered from RLS for many years and am currently taking Sifrol - 150g daily. I have some relief at night but intermittently and augmentation from around midday. I suffer from quite extreme fatigue and would like to cease the Sifrol . My sleep specialist ( in Melbourne Australia) does not ’ seem to have anything else to offer.I happen to know somebody who has just started to manufacture the machines. I’m not sure of the cost but I think quite substantial.
I would be interested in any thoughts.
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Hasnt your sleep specialist talked to you about iron levels and offered a gabapentinoid or a low dose opioid? There are forum members here, such as Joolsg and SueJohnson who can give you expert advice on coming off pramipexole (Sifrol) - one of the dopamine agonists no longer recommended for RLS by experts.
As far as PEMF goes, you've probably already done this - putting pemf rls into your favourite search engine brings up various claims and some reviews.
If you put pemf in the forum Search box you'll find it mentioned a few times here:
No devices will help while you're suffering drug-induced worsening of RLS on Sifrol.I'm stunned that a sleep specialist is not up to date on RLS treatment.
You have to get off Sifrol very slowly.
Reduce by half a 0.088mcg pill every 2 weeks. Ask for a low dose opioid ( codeine, tramadol,oxycontin) to settle the severe withdrawals.
Treatment now for newly diagnosed is
1. Full iron panel, morning, fasting blood tests. Raise serum ferritin above 200 by pills/iron infusions.
2. Review & safely replace all trigger meds (anti depressants, anti histamines, statins, beta blockers, PPI).
3. If 1 & 2 don't help, start pregabalin or gabapentin.
4. If 3 doesn't help, start low dose opioids.
In your case, you should get serum ferritin up above 200 by pills/iv iron infusions as that can help reduce severity of Sifrol withdrawal.
Find a different doctor who actually knows the latest treatment for RLS. You will need a prescription for pregabalin or gabapentin and you start to take it 4 weeks before the last dose of Sifrol.
Read every post on here headed Pramipexole or Ropinirole and follow the detailed advice.
Your severe RLS will never settle until you get off ALL dopamine agonists.
Like you, I thought trying devices and supplements would settle my severe RLS. Nothing will settle it until Sifrol is completely out of your system.
Dopamine Agonists are dreadful drugs. They're miraculous at first. Then, insidiously, they worsen the disease. They over stimulate D1 receptors and that drives the severity. Your whole body screams for the drug. The receptors do settle eventually. But only if you get off Sifrol.
It's tough and the RLS gets much worse during withdrawal, with little or no sleep for 2 weeks.
To expand on what she said. Stop taking any iron supplements 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.
As Joolsg said to come off Sifrol reduce by .half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off Sifrol 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 divide the doses on 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 of pregabalin)." 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).
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, carbs, foods high in sodium(salt), 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.
Well I have a Therapulse which vibrates on my leg for about 15 minutes ...sounds similar...doesn't stop RLS till after it's finished ..it's my last resort...only use when all else has failed!
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