yikes

[Bjolly8]

Hello from USA. I was on Ropinpole for years - it stopped working so I stopped taking it. Luckily, I had no withdrawal effect at all. Then i was put on Pramapexole, Gabapentin & Clonzepan ( i also have major insomnia). That was about 3 yrs ago. Unfortunately, the RLS has decided to start up during the day. At bedtime the RLS has also worsened no matter what I take. Saw my Neurologist 2 weeks ago who ordered b12 & iron bloodwork. Havent gotten bloodwork done as of yet due to my Appendix bursting. Spent a week in the hospital on Morphine and/ or Dalutin first time in years no RLS. However, cant take those meds - id be a zombie. Getting bloodwork done today. I hope you are all doing well .

[Madlegs1]

Glad you're ok.Your doctor obviously hasn't heard about the various protocols for treating RLS, and especially not prescribing dopamine agonists for augmentation.

"I have a dream". That someday all doctors will know how to treat RLS.

Meanwhile, the nightmare continues!💀☠️😭🤕🦵🦵🦵🦵🦵🦵

[SueJohnson]

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. so I hope you are getting a full iron panel and you stopped taking any iron supplements including multivitamins that have iron in them 48 hours before the test, and you didn't eat a heavy meat meal the night before, you fasted after midnight and will have your test in the morning before 9 am if possible. Otherwise the results you get on your ferritin will be higher than what they would be otherwise. 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 some advice.

You are obviously suffering from augmentation from Pramipexole. The signs of augmentation 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.

Therefore you need to come off it. To come off it, reduce by by half of a .125 mg tablet 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. Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Some have used kratom or cannabis temporarily to help.

How much gabapentin are you taking and are you taking it all at once? Youmay be taking it wrong which is why I ask. In any case it is not going to be fully effective until you are off pramipexole for several weeks.

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, eating late at night, estrogen including HRT, 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, fennel, 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, CBD, 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, vibration devices, using a standing desk, listening to music, meditation 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.