hi just joined

[Barabrithlady]

hello, I’ve just joined in desperation! I have all the same symptoms for RLS as I’ve been reading from your life stories. Can someone please tell me simply what foods (if any) can trigger RLS? Some nights are worse than others so I must be doing or eating something different to trigger it. My husband of almost 50yrs is seriously ill and has only months to live. So I’d appreciate very simple down to earth advice as my brain is frazzled at the moment! Thank you all in advance. 👍

[Madlegs1]

So sorry to hear about your husband. I hope he has a peaceful and painfree journey.

Medications such as antihistamines, antidepressants, statins can all set off the heeby jeebies.

Foods are very personal, but for myself--- msg- most gravy sauces and shop soups., alcohol, high salt, raising agents-- most biscuits!

Keeping a food intake diary can help pinpoint triggers.

Good luck.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen 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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

I see you are taking ropinirole. Are you aware that Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

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. If this happens post back here and we can give you some advice.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done.Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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.

[Joolsg]

I'm so sorry to hear about your husband.The best thing you can do is get full iron panel blood tests ( morning fasting). If your percentage saturation is below 45% you can start taking ferrous bisglycinate every other night. Raising serum ferritin by taking iron supplements or an iron infusion resolves the majority of RLS.

Also try magnesium citrate at night.

Food/drink can be triggers for some people, so keep a diary.

Don't let your GP prescribe Ropinirole/Pramipexole or Rotigitone, as they are no longer prescribed by experts because of very common complications.

Stress is a major trigger, but understandably, you can't avoid that at the moment.

I wish you strength.

[SueJohnson]

I agree 100% with what Joolsg said.

To expand on what she said. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

[Jumpey]

I'm so sorry you are suffering whilst also caring for your beloved husband at the end of his life.I wish you strength and him a peaceful and comfortable death.Definitely get your iron checked as already advised. If your RLS symptoms are intermittent and you have no history of addiction you could ask for a prescription for diazapam which will help you sleep through this stressful time. When my RLS was intermittent it helped me. It is also prescribed for anxiety and is sedating. If your symptoms aren't severe, cocodamol ,available over the counter, could help in the short term.

Are you in Wales? I'm assuming you are by your name.If so ,for longer term help, Dr.Jose Thomas is RLS knowledgeable and runs a sleep clinic based in Nevill Hall Hospital. He also has a private practice at St.Joseph's Hospital. Huge good luck

[Kejimkujik]

I am so sorry to hear about your situation and your husband final journey. Stress absolutely can make RLS worse. When I was first diagnosed with it, my husband was also diagnosed with stage 2 breast cancer. The demands of looking after him post surgery, working (self employed) and trying to get the RLS under control did not help. Much of the recommendation for healthy eating for my husband apply to RLS and to some degree help. I have since experienced augmentation and a traumatic brain trauma from a fall. The augmentation escalated and made life miserable. To add to this my husband was diagnosed with stage 4 metastitic breast cancer, inoperable. To manage and juggle everything and be there for my husband, I had to absolutely make time for me.....take some time out in everyday even just 1/2 hour here or there, to go out for a walk, go to a cafe and treat myself, with or without a friend. A trip to the library and browse for a good book. The browsing I found took me out of my head and was in itself quite a good form of meditation. This helped calm the RLS attacks as the doctor was not prepared to increase my pramipexole dose as I was already on a high dose. I am now embarking on a program to withdraw from pramipexole, but not without help and support....this is a valuable place for this. I wish you all the peace and support for you and your husband on this journey;