Feel like joining you!

[Histology2020]

I too have been where you are more than once. Quality of life is pants, RLS wins everytime. Tried all the meds, nothing has worked so far over 12yrs. Im 64 this March we are in the same boat. I wish I could offer you some comforting words and help but I can't.

[SueJohnson]

I see that 2 years ago you were switching to ropinirole. Are you still on it? Are you taking any other medicines for your RLS like opioids? I also notice you listed sertraline. Are you still taking that? It can make RLS worse for many people. I also noticed your ferritin was 47 and you were taking ferrous sulfate for it. Has it improved to over 100?

[Giovanni10]

I’m 74 and I have had this dreadful disease probably 40yrs…I didn’t know what it was but my son was over with his family last night and we were talking about it and he remembers me watching Yvonne and all of a sudden I would jump up and say I gotta get up my leg jumped… I had no idea that after years of having this and continuing to get worse that it was rls… so about 10 yrs ago my rls became severe and I started taking medication… I had major lumbar surgery last July and it got better then worse then better and some nights I cried for hours between pain and rls symptoms… I’ve tried different meds and alternative solutions and the worst one for me was a non approved FDA and not found in any regular store called Kraton…horrible horrible!! All rls symptoms got worse and then some and I wasn’t sure if I would make it through the night but I did of course!! I went back to my ropinerole and added a diet supplement called Seratame and Magnesium Glycinate and I’m still in my first month but my symptoms are less so I’ll continue with this regiment and hope for the best!! I’ll keep updating my progress because anyone that has this knows appreciate and enjoy any day and night that’s even a slight better because you don’t know what the next one will bring! 🙏🙏🙏and fingers crossed 🤞 I am blessed with a lot of family and friends support and no one else has this horrible disease except my 52 year old daughter I think is getting it 😩I do have a 71 year old bother who has MS and has had it since he was 19 and in the Army but still walks and enjoys life everyday because he’s blessed with family and friends and his determination and stubbornness ❤️❤️❤️good luck to all and I pray for all of us that they find a cure someday 🙏🙏🙏🙏for this unknown illness!! God bless🙏🙏

[SueJohnson in reply to Giovanni10]

You said in a previous reply that ropinirole stopped working and your doctor switched you to gabapentin which made your RLS worse. I suspect your doctor took you off ropinirole without slowly weaning down and started gabapentin right away. If that is the case the symptoms you had were a result of your withdrawal from ropinirole, not gabapentin. Gabapentin does not cause an increase in symptoms. Ropinirole needs to be reduced very slowly like by .25 mg every 2 weeks and possibly even slower and you will have bad symptoms during that time even doing it that slowly. And if ropinirole stopped working, it means you were suffering from augmentation and will do so again when you go back on it. probably not immediately, but it will happen. Be aware of the signs which are: when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. When that happens, post back here and we can give you some advice on how to get off it and what to do next.

[SueJohnson in reply to Giovanni10]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

[SueJohnson in reply to Giovanni10]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, 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, 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, using a standing desk, playing and listening to music, meditation, creative hobbies and yoga.

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.