Bizarre aid in relieving my RLS symptoms

[Niksles]

I have suffered severely from RLS for most of my life (I'm now 66).

For the last few years I have been prescribed Ropinirole and Pregabalin, although the Pregabalin was stopped at the end of 2021.

My symptoms have been unchanged for many years - sensations in legs, arms, shoulders and wrists; generally towards the end of the day (and when attempting to sleep), but many times during the day also.

The usual issues with sleep loss, spending many nights walking around or standing in a hot shower.

I continue to take a 2mg dose of Ropinirole every evening around 9.00pm, although I don't get much relief from the RLS sensations, maybe 3 nights out of 7 are reasonable.

So:

A month or so ago I made a wrist band with two stainless nuts attached which I fix around my lower arm when the sensations start (generally in my legs) - for some strange reason this has resulted in the sensations disappearing fairly quickly.

Apart from one night (when I didn't realise that I'd forgotten my pill) I have not had the (almost) regular appalling leg movements when attempting to lie still in bed - this has now lasted for about 5-6 weeks - and so far (fingers crossed) have managed almost perfect sleep for this period.

I certainly have no real idea why this works for me, but until it fails I will continue to use the band.

Initially I used standard bolts but I had a slight skin reaction, these are stainless steel domed coach bolts.

The domes are placed about 9cms from my wrist on the inside of the arm (left or right doesn't seem to matter). The band is from Boots.

[SueJohnson]

Have you had your ferritin tested?

[Niksles in reply to SueJohnson]

Hi Sue. A few years ago I had an issue with anemia and was prescribed a course of iron tablets, my iron levels are now back to normal.

[SueJohnson in reply to Niksles]

Iron levels back to normal does not really mean anything for RLS. First off the usual tests for iron doesn't measure ferritin. And even if it does, what is normal for other people is not normal for those of us on RLS. Check and see if your ferritin was tested and if so what it was and let us know.

[Niksles in reply to SueJohnson]

I will see if I can get that from the GP.

[Niksles in reply to SueJohnson]

Ferritin was tested in 2019 and I have been given a figure of 40 (whatever that means?)

[SueJohnson in reply to Niksles]

It means there is a 60% chance that raising it to 100 or more will improve your RLS. Since your ferritin is less than 75 take 325 mg of ferrous sulfate 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. If you have problems with constipation switch to iron bisglycinate. If your ferritin. Once your ferritin is raised to between 75 and 100 or , you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Joolsg]

You mention that you've been on Ropinirole for many years and still have bad RLS and it's moved to your arms.It sounds like classic augmentation ( worsening of RLS caused by the Ropinirole pills). It's extremely common and will happen to the overwhelming majority.

Read the pinned post on augmentation, follow Sue's advice on raising your ferritin and consider reducing the Ropinirole slowly by 0.25mg every 2 weeks and switch to pregabalin.

Obviously if your device continues to give you complete relief from RLS day and night, you won't need to do anything.

[Niksles in reply to Joolsg]

Hi. Yes I agree that there has always been a chance of augmentation, however the symptoms were dreadful prior to the decision to prescribe Ropinirole (over 5 years ago) and I have found that I am no worse than I was on previous medication (I forget which). Until late last year I was taking Pregabalin also but wanted to stop taking it as I felt it was causing other issues.Will certainly look into the ferritin levels, and continue to use my device.

Best wishes.

[Joolsg in reply to Niksles]

If the medication before Ropinirole was another dopamine agonist like Levodopa or Pramipexole, then youay have had augmentation on those meds & it would just continue on Ropinirole.Pregabalin won't help RLS until you're off all dopamine agonist meds.

Good luck.

[Madlegs1]

I'm intrigued by your " invention".

Do you think it works on the same idea as anti nausea/ travel sickness bands.?

Does it work only on one particular spot?

Thanks for the idea!

[Niksles in reply to Madlegs1]

Hi. Well it does need to be quite tight. I just put it about 9 cms from my wrist (either arm) and it seems to work, have not tried elsewhere though.

[Niksles in reply to Madlegs1]

Just in case you want to try for yourself

Coach bolt measurement.

[Madlegs1 in reply to Niksles]

Thanks. I might indeed make one up.!👍

[LFIT]

How did you come to think of such an option - have you got your own theory?!

[Niksles in reply to LFIT]

Not sure where it came from, possibly travel sickness bands.

[Pooh78]

Sounds like you may have applied pressure on acupressure point

[PolishCanary in reply to Pooh78]

My thought exactly!

[SueJohnson in reply to PolishCanary]

Is your RLS under control?

[PolishCanary in reply to SueJohnson]

Although my primary RLS is mostly mild, it can spike up to moderate and even really severe every couple of weeks. I do not take any prescription meds, but have mildly aching calves almost every night, although I can usually get to sleep OK after a hot shower or using a heating pad on legs.

[SueJohnson in reply to PolishCanary]

Have you had your ferritin checked?

[PolishCanary in reply to SueJohnson]

Yes, I've had the 4-test iron panel 8 times over the last 3 years (serum iron, ferritin, TIBC, % Sat). Except for 8-18-21 where ferritin was 112 (pretty sure because I had raised my Armour thyroid), the ferritin has been way below the suggested value of 100 for RLS.

07-08-19 Fer = 48 %Sat = 36

10-06-20 Fer = 75 %Sat = 27

06-09-21 Fer = 54 %Sat = 29

08-18-21 Fer = 112 %Sat =35

(felt great but free T3 was above range and by end of Aug developed symptoms of too much T3, so had to decrease Armour)

11-16-21 Fer = 63 %Sat = 23

02-02-22 Fer = 67 %Sat = 26

04-11-22 Fer = 57 %Sat = 25

06-07-22 Fer = 66 %Sat = 33

I have a special challenge taking iron supplements: I have dysphagia (difficulty swallowing due to being born with two 1/4 inch esophageal strictures). I have tried Floradix liquid (ferrous gluconate) and Apex Energetics Heme-Vite (ferrous fumarate + bovine liver) -- both stained teeth horribly because I have to pull capsule apart and mix powder with food. And yes I took Floradix through a straw but it still stained.

Starting 05-01-22 I took Three Arrows heme iron polypeptide, which did NOT stain teeth (yay!) -- I thought I had discovered the iron supp of my dreams! But after taking for 3 months I seem to have developed a sensitivity to it and can no longer take because of the severe side effects suggestive of iron overload. Strange, I know, but my body very clearly does not want this supplement.

Just had another iron panel 09-02-22, results due this week. I'm guessing that my ferritin is probably lower than 100 and I'll need to go back to some form of non-heme iron -- hello stained teeth

I have had very good results eliminating 90% of nightly symptoms by taking folate (NOT folic acid -- I have MTHFR) supplements instead of medication.

[SueJohnson in reply to PolishCanary]

WOW - you do have problems. How about an iron infusion?

[PolishCanary in reply to SueJohnson]

Have already discussed that in the past with Primary Care. She is willing to write the order for infusion but seems certain that the infusion center won't allow me as I am not a cancer patient. (I live in Indianapolis Indiana US). Yeah, seems screwy to me, too. I have an appointment with Primary Care on 8-19-22 to review blood test results and will discuss infusion again. Maybe being an RLS patient unable to get to 100 will make a difference in whether I can qualify for an infusion . . .

[StJulian1305]

Is t anything worth a try. Well done 👏🏻👏🏻👏🏻

[Niksles]

Sadly I have to report that I had one of my worst nights ever last night! Extreme pain everywhere, awake until 5.00am. Still feel dreadful.Almost like the symptoms had been 'stored up' for a number of weeks.

Will still keep trying with my band though.

[Guitarpickin in reply to Niksles]

So sorry to hear that. I hope it was a one-off and your wristlet thingy continues to work it’s magic for you. It was nice of you to tell us about it. If you ever remember the train of thought that prompted you to make it in the first place, please do let us know.

[SueJohnson]

I second what Joolsg said - you are suffering from augmentation and need to come off the ropinirole. There is no downside as it isn't controlling your symptoms. To come off ropinirole, reduce by .25 mg 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. But in the long run, you will be glad you came off it. 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...