Restless Leg Syndrome

Hello...I've had RLS since my early 50's and I am now 77. Currently I'm taking Ropinerole (Requip) which helps somewhat. However, I notice that if I have something a bit salty for my supper, RLS gets worse. I know my body needs the salt but I try to stay away from it toward the end of the day. Has anyone else noticed this salt affect?

@vdherman5
I took Ropinerole for about 8 years. It became ineffective for me so I now take Prampexole 3 mg a day.
RLS is a horrible! I have not noticed a relationship with salt.

I have experienced RLS for over 35 years. After many anti-RLS medications, I am taking buprenorphine in tablet form. It has been the best to curb the leg spasms called periodic limb movement disorder (PLMD)
Salt doesn't affect me, yet I think at times a correlation with sugar at night does. When I vacation and have dessert at night, the sensations return.

Hi Jim, I believe there has to be "cause and effect"as a general principle but for some things it just isn't clear. Before I had the RLS diagnosis, I was mystified on a daily basis what I had done the previous day to cause my symptoms (achy pain in the back and sides of my thighs). Now, I think of it like having seizures, some "loose wire" in my brain (as a metaphor). I do think it is more likely "set off" by periods when my brain isn't as peaceful. I tried giving up all sweets/sugar additions and that didn't change my symptoms. I now take buprenorphine as a pieces of a film that melts under my tongue. The film is called Suboxone and is mainly used by drug addicts to control drug craving (like methadone). A couple months ago my dose was increased and I actually have many nights without any RLS symptoms. For YEARS I always had multiple episodes every (except once in a blue moon) night. My concern was going back to sleep and how much sleep was lost (how tired it made me and eventually the insomnia this created). It never occurred to me that symptom-free nights were possible. Maybe, I should have had more medication all along? In more recent years, I also have symptoms in the late afternoon and early evenings, if I lie down and watch TV--very much associated with a drowsiness or being very very relaxed. RLS symptoms vary in presentation, but I think are horrible for all of us. Until the last (maybe) 3 years, I never experienced any twitching or jumpiness in my legs. Now I have some on occasion, but an unbearable achy-pain is the greatest sensation. My understanding is RLS can worsen over the years--and spread to back, shoulders and upper limbs (for those of us whose symptoms began in the legs). Only you can tell if your medication regimen is working for you. It is not (as I understand) what is recommended by the RLS medical guidelines that came out in 2024, but these really took a bow to the fact the most common drugs prescribed in the real world are dopamine agonists (which you aren't taking) although these drugs (after some time) cause augmentation (which is a worsening of symptoms). On Dr Early's website (Johns Hopkins RLS doctor) he lists medications that are used for RLS, the opiate-variety being effective (but currently controversial because of the opiate crisis). Buprenorphine is a mild opiate (without the side effects of other stronger opiates/opioids). I respect each of our experiences is somewhat unique and people on this forum have posted a variety of medications that work for them. I warn to avoid the augmentation variety (dopamine agonists) because although they work super-well initially, my doctor told me that eventually cause augmentation (and then symptoms become more challenging to treat). Interestingly, I am now on thyroid medication like you. But, I have had RLS symptoms since 2010 and only had high TSH for the last couple years. (TSH--- thyroid stimulating hormone---goes up when making the thyroid hormone itself is becoming difficult---this shows up in lab earlier than when there is an actual thyroid hormone deficiency.) I don't believe there is a definite cause/effect link between RLS and low thyroid, although I can't say no association, at all. Like you, I have wondered about any other neurological factors that made me susceptible to having RLS. Like I'm left-handed and I have ocular migraines. But, on mentioning these things to my neurologist, he didn't go "oh wow, isn't that strange, so do all my other RLS patients." It's seems RLS is a thing in itself. I agree it is not curable. I believe medication is necessary (although which medication prescribed varies in reality). How well a medication is working is something only we as RLS sufferers can evaluate.

....I also use something called Nidra at night. These are bands that go around my legs under my knees and I activate when I wake with symptoms (or have symptoms lying on the sofa in the evening). They are FDA approved, paid for by my Medicare, and they work. Only currently available in some states. Manufactured by the Noctrix company in California. Google their website. I contacted them over a year before I was eligible to receive the Nidra and, eventually, they got back to me. You are not the only person with arm (not leg) symptoms and I believe their product should be (could be) modified to work on an arm (instead of just a leg). Suggest they do a study on use on arms and volunteer to be in that study. Probably, insurance will never paid for anything without research to back efficacy.

Another thing: before medication and before my Nidra, I used a strong massager on my legs when I woke with symptoms and that (for many years) worked. I held the massager on the areas where I have pain for anywhere from 5 minutes to 15 minutes, the pain stopped. Maybe, you could try a massager. I believe it confuses the nerve (like getting up and being physically active--but more effectively and with less effort).

Best of luck to you, Jim. It has been so interesting to me to learn how others experience RLS and how it is managed. Take care of yourself!

I have RLS and have been on Requip (ropinirole) 6 mg xl . For over 25 years started at 2mg I am 73 yo male in good health I think I want to change meds because I have been taking Requip to long and do not want to up the dosage and suggestions will be taken seriously

At bedtime: Hot showers, as hot as you can stand with only a night light on. Compression socks. and Gabapentin has really helped me.

How long have you been taking Gabapentin and what MG any side effects ? Thank you my I assume you are born in 1950 I was born in 1951. How long have you had RLS ?

Yes, 1950. At least 10 years. Started at 400 mg gabapentin, then 500 mg, now 600 mg. No side effects, tho I just started on 600 mg and I'm sleepier waking up. P.S. I tried everything they recommended, including OTC and herbal remedies, but nothing worked. I do not want to take stronger prescription medication.

PS I also had my iron tested and it was fine.

Diagnosed with RLS in mid 30s and now 77 and it has become unbearable as I aged. Iron infusions helped temporarily. Currently taking (3) Pramipexole 0.5mg; Gabapentin 900mg; Levetiracetam 500mg; Mirtazapine 15mg; nightly and still suffer excruciating pain. My current neurologist does not want me to become addicted. At 77 I would rather have a good nights' sleep than concern myself with addiction. Having read through your comments I intend to research drugs never prescribed for me to ascertain if something might benefit me. I don't remember the last time I slept lying in bed with my husband. Now what sleep I get (not rest!) is in a recliner and thus shoulders, arms, body aches from awkward positions. It appears there has been little gained in all the years of research or did I miss something!?