Hi all, I've been suffering from RLS for about 7-8 years now. Have refused the dopamine options continually thrust at me by GPs (who prefer to believe their pharma rep than do any research - or read here!), and have done all the iron and magnesium tests, sleep apnea, etc, with no helpful conclusions.
When I know I'm going to have a really bad night I have 100mg Tramadol, but that's a last resort for me now as it makes me woozy but not sleepy, and I get a bit of augmentation the next morning - but I have found short term relief from big slugs of an electrolyte drink I heard about via a keto forum - 4tbsp lemon juice, 2 tbsp ACV with the mother, 1/2 tsp Himalayan salt and 1/2 tsp cream of tartar. Add 800ml water, shake and drink. When the vibrations come on I usually have 5 big gulps, followed by 5 more, then go off and do a household chore for 20 mins or so, and that seems to stop the shakes in their tracks most of the time (not always sadly).
I also use Hemp Source Hemp Muscle & Joint Relief Cream, and magnesium oil rubbed into my knees (not at the same time as the hemp cream) - and I've just bought a massage gun. Also starting on chair yoga next week.
I really think a lot of my RLS problem is to do with poor circulation and a lack of mobility (due to worsening arthritis in knees and ankles, and morbid obesity). I wear compression stockings every day after my legs 'exploded' two years ago with venous ulcers, but about Day 7 they make my RLS worse and it starts much earlier in the day.
Anyway, hope my suggestions help someone x
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Lovejoy100
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Morning Gmc - yes I feel the same about DAs. I read somewhere (RLS USA website I think) about a study showing that DAs didn’t work for 80% of patients and generally all suffered augmentation! Yet still it’s offered up as the holy grail of RLS treatment.
I think what upsets me most about having RLS is the inconsistency in how my knees respond to my various ‘treatments’ day to day. I get it every night, with differing levels of severity and in only one knee at a time (although they like to swap to keep things lively). Sometimes the electrolyte drink will work, sometimes it won’t - and this goes for the mag oil, hemp cream, stretching, compresses and Tramadol - last night (after I posted here) was exactly that, I tried everything, even two doses of Tram, but the RLS was relentless. I’m sure it’s the same for most of us!
The joy of working from home is that at least I can sneak a little 40 winks in over lunch 😬.
Lovejoy, I think you remember the info on rls.org re DAs incorrectly. Actually, DAs are -initially- extremely effective. They are even occasionally used to help the diagnosis of RLS if the urge to move isn't obvious enough. The (70-)80% refers to the percentage of people on DAs that eventually will experience augmentation. For some, like me, augmentation started within about a month. For others, augmentation started after 10, 12 or even 20 years of use. The group of people for whom a DA remain effective is hard to assess, as they most likely don't experience problems and will not seek medical advice other than their standard care and will surely not go online to seek help in desperation, as they will not experience that.
I am not saying to take a DA. I mean to help getting good info before anyone starts on a medication. Also, The alpha2delta ligands or gabapentinoids bring their own problems, as do the opioids. With such strong medications, all three groups!!, prudence is always called for.
Hi LotteM - thanks for the clarification. I guess the point I was trying to make was that I've discounted DAs as a suitable treatment for me, given the very high chance of augmentation. Sorry you had to go through it x
Could the relief be because you're not drinking what you used to drink rather than anything special about the ingredient's you use? Just a suggestion as that the fact that you're still suffering from arthritis indicates to me that you're still eating a diet containing inflammatory foods like refined sugars and starches and/or refined seed oils.
Hi Eryl - thanks for your thoughts. I'm following an eating plan that is sort of low carb - protein but mainly lots of green veg - and I've cut out most carbs and sugars. Gave up smoking and alcohol, cut back on caffeine, and losibg weight - all to help ease the pressure on my knees, which is part arthritis and part wear and tear from the weight. I introduced the electrolyte drink after all these changes were made, and noticed an immediate difference - so it's definitely helping. I also take hemp seed oil capsules, which are good for instant muscle pain relief.
You do not want to get started on gabapentin...unless you can find Horizant (a different form of gabapentin). True gabapentin has terrible side effects. It makes you dizzy, wobbly, bounce into walls, extremely unsteady. I couldn't get past the initial starting dose when my family doctor prescribed it early on. Horizant, however, is different, and I had no side effects from the Horizant.
Yes. I take 1500 mg and it completely controls my symptoms. It is now the first line treatment for RLS. 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... Beginning dose of gabapentin is usually 300 mg or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. You say you have had your iron tested. Did they test your ferritin since that is not normally included and if they did was your ferritin over 100? Improving it to 100 or more helps 60% of RLS people.
Your "electrolyte drink" is a variation of the Adrenal Cocktail, popularized by Morley Robbins and the Root Cause Protocol. I have used it very successfully for leg cramps. You can purchase a premixed version from Jigsaw Health.
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