I was diagnosed with RLS in September and suffer with severe stinging pains in my feet. As a result I often experience nights with very little or no sleep at all.
I am currently taking 400mg of Gabapentin morning and night and I am gradually increasing the dose until I find the level that brings satisfactory relief.
I have come across various devices online which claim to help relieve the symptoms of RLS. Does anyone use these devices and are they helpful? The devices which I have come across are called:
Revitive and Theraulse
Any feedback about these devices would be appreciated as I am desperate to find relief and get proper sleep.
Written by
DonWilliams
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Revitive made my RLS unbearable. I managed to sell it on without too much loss.
As for therapulse, it claims to be the top treatment for RLS and many of us have made several complaints to the Advertising Standards and the complaints have been upheld. They still use the advertising so clearly ASA has no authority to fine and force them to stop. It may help but it's not the top treatment. Someone posted recently that it was helping them. Use the search engine at the top right hand corner of the website and you can message to discuss. Put "therapulse" in the search box.
As you're newly diagnosed, please look at RLS UK website and the Mayo algorithm.
Before prescribing any meds your GP should have ordered full panel fasting bloods. Serum iron should be above 60 and serum ferritin above 100, preferably 200. Raising ferritin resolves over 60% of RLS cases. Then you would not need meds. They should also have discussed fully the list of other meds you are taking as many cause or trigger RLS, including anti depressants, anti histamines, statins, beta blockers and PPI gastric meds.
RLS isn't taught at medical school or during GP training so doctors and many neurologists are unaware of the link to low brain iron. They're not familiar with how to prescribe meds either. Gabapentin for RLS is usually given at night because the disease follows the dopamine cycle and levels are lowest at night so we get symptoms. Taking gabapentin at night also reduces the side effects of dizziness and double vision etc. So before you increase gabapentin, check your bloods and raise levels.
Spend a few hours looking through the Mayo algorithm and RLS UK website. The more you learn, the better treatment you will receive.
I am aware that my Iron levels should be checked before taking Gabapentin. I discussed this with my GP but he was not really interested and gave me a prescription for Ferrous Fumerate tablets. I am taking these but without the cooperation of my GP I have no way of knowing if my iron levels are increasing.
My GP prescribed Ropinirole and after I rejected it he reluctantly prescribed Gabapentin after I mentioned this forum and the latest Mayo Clinic paper on RLS treatment. I am now taking 400mg morning and night but still experience severe pain. I am not clear if it would be better to take all the 800mg at night instead.........I am gradually increasing the dose but in the meantime I wondered if any mechanical devices could help. I note your reservations so will be careful before committing.
I am sometimes so desperate for relief in the middle of the night that I would try anything to it.
Gabapentin is best taken at night for RLS so take 400mg 2 hours before bed and 400mg right before bed and take any magnesium 2 hours before first dose.
800mg is very low for Severe RLS so your GP should increase the dose. 1200- 1500mg is average dose taken in 600mg doses 2 hours apart. Any dose above 600mg is poorly absorbed, hence splitting the dose at night.
Hopefully increasing the dose will help your unbearable symptoms. Low dose opioids are highly effective if the higher dose of gabapentin doesn't work after 6 to 8 weeks.
It's strange to prescribe iron supplements without first taking full bloods. How does your GP know it's safe? You might have haemachromatosis. Also, as 60% see dramatic improvement after raising levels, it's more cost effective for the NHS and the economy to give supplements,blood tests and iron infusions.
I'd direct him to NHS guidelines which recommend iron tests. Hopefully GP will listen.
in terms of mechanical devices, there is some evidence to support the use of compression to help RLS symptoms. Compression socks shouldn’t be too expensive & they can help. I also use an air compression massager on my legs which is great, but unfortunately I can’t sleep with it on. It just takes the edge of for a good 20 minutes or so & that’s sometimes enough to allow me to sleep.
I take 4 tablets of pramipexol at 4pm every day. If my legs start before the tablets start working I go for a quick walk which usually does the trick. I have haemachromatosis.
"Raising ferritin resolves over 60% of RLS cases." Uhh No. Raising ferritin to over 100 helps 60% of patients and in some cases completely eliminates their symptoms.
severe stinging pains in your feet suggest you may have a peripheral neuropathy which can also be associated with RLS. Neuropathies are caused by various processes eg Diabetes which should be identified & treated or inflammatory autoimmune neuropathies which attack myelin which nowadays are treatable if found early enough ( though rare ). You should ask your GP to check you don’t have a neuropathy. Some of the simpler causes can be identified by your GP. Others need referral to a neurologist.
I would like to see a neurologist but I am having difficulty finding one and finding one with knowledge and experience of treating RLS will be harder.
Ideally I would like a face to face appointment but I may have to consider a telephone consultation.........
I feel a neurologist could provide more help than I am getting so hopefully I will be able to find one.......
are you hoping for an nhs appointment or would you consider private? I have a private appointment organised involving travel to London ( some way away ) in November, specialist recommended on this site. He does remote consultations if need be and accepts referrals without the need to ask GP ( though I informed GP ).
I also have an appointment arranged with a neuropathy specialist the next day but I do know I have a neuropathy. The RLS specialist, being a neurologist, may be able to advise on that as well but in a less specialist way,
Consultation is £350, remote or face to face.
Kaarina has lists of others in other parts of the country ( I am assuming UK here )
i got a Therapulse too - its seem to help in the middle of the night when I wake up with it. Often I don't get back to sleep but it makes it bearable until the battery dies. I wish it had a longer battery life.
He said my iron level of 69 was satisfactory. I am taking Ferrous Fumerate which he prescribed with no real conviction. I do not know if this will help but I feel it is worth trying.
Thanks for taking an interest in my ongoing problems with RLS.
Yes the ferrous fumerate should help. I assume it is 210 mg. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. Don't take tumeric as it can interfere with the absorption of iron. If you take magnesium or calcium supplements don't take them at the same time as iron tablets as they interfere with iron's absorption. Take them at least 2 hours apart. Also antacids interfere with its absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Mechanical aids just distract your mind fron the symptoms, they do nothing to address thd cause. The symptoms invariably get worse towads bedtime which indicates that the cause is something that builds up during the day and wears off at night. The obvious thing is eating. Iv completely eliminated my rls by changing my diet completely. I now no longer eat anything which could cause systemic inflammation, this involves avoiding processed foods, even bread, fruit juices, refined sugars and refined starches.
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