So im here to learn and try and help my partner who means the world to me,She has RLS and spent a few years addicted to nurophen plus which helped her alot shes been off them for 2years plus now and ive never been soo proud of someone, no other tablets helps u name it shes tried it.
I have never seen my partner like this in 7years of being with her,not sleeping at all maybe grabbing upto 3 hours a day max.
i see the pain and the torment in her it hurts to watch i massage her legs which sometimes helps i do all i can do to help her which isnt alot . I know the tablets she was taking helped her but the amount was killing her, she was in and out of hospital for blood transfusions because of the ibuprofen in the nurophen plus codine alone does not work. She doesn't want to fall bk into that cycle which would most definitely kill her just feel like we are at a crossroad. How can she live in pain knowing what helps could kill, this is obviously shorter than the full story but you get the point.
Really i just want to know if other people are this bad and what the take/ do to help as i hate seeing her in pain daily.
hi, yes, I'm that bad too. Her story resonates with many RL sufferers. I was ok on 4 to 6 hrs sleep for yrs but past 2 yes only 2-3 hrs. I have a 'green fairy' who makes cannabis edibles and that will give me a week or three till tolerance develops. So started codeine early April hoping for a more permanent solution but it isn't strong enough for my severe RL. Next option is methodone. But I do feel good on cannabis (must have THC or it isn't effective for me). As with many of us it's trialing different options to see what suits you best. There are some very experienced people on this forum who can offer more and better advice then me. How great it is that she has such a caring partner! All the best.
She is not alone, and all on here will have huge sympathy for her and your fight with this.
Unfortunately, yes - some do have very severe RLS, and struggle to get the help that they need - partly because few doctors have detailed knowledge of the condition.
As a first step, has she had a recent full iron assessment blood test, which should include serum iron, ferritin, total iron-binding capacity, and percentage transferrin saturation - measured in the early morning after an overnight fast and having not had any iron supplements for at least 48 hours? If so, what were the results? - the actual numbers rather than a doctor's 'fine, normal'? Many RLS sufferers have low brain iron stores and benefit from iron supplementation or infusion.
Has she ever been prescribed prescription drugs specifically aimed at treating RLS, as some can eventually make the condition worse? Pramipexole, ropinirole, rotigotine patch...?
What other over-the-counter or prescription drugs is she taking, as many things (even simple things such as anti-histamines) can make RLS worse?
A diet containing too much sugar, sweeteners, caffeine etc can also be problematic for some suffererers....
If you can answer these questions and post them here many members can offer help.
Since you haven't said what else she has tried I am going to give you my standard answer. When she sees her doctor, she should ask for a full iron panel. She should stop taking any iron supplements 48 hours before the test and fast after midnight. She should have her test in the morning. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her ferritin to be over 100 as improving it to that helps 60% of people with RLS and her transferrin saturation to be between 20 and 45. If her ferritin is less than 100 or her transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all she shouldn't let her doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels she needs it.. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead she should ask him to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks to be fully effective. After that she should increase it by 100 mg (25 mg pregabalin)every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 (200 to 300 mg pregabalin) daily." If she takes magnesium she shouldn't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of them and she shouldn't take calcium within 2 hours. Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her 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...
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, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If she is 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.
Safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, glycine, and GABA although they probably won't help much. The best prescription medicines are Ambien and Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.
First step is to realise UK doctors know ZERO about RLS. It's therefore important to read and learn all you can about the condition.Very simply, the treatment steps should be:
1. Full panel fasting blood tests. Raising brain iron by increasing iron helps the vast majority. GP will tell you results are normal, but for RLS they need to be much higher. Serum ferritin should be above 100. Pills often take months to raise levels. Iron infusions are incredibly effective, but UK doctors are still wary and think they cause anaphylaxis. The newer formulas are very safe and effective.
2. Review existing meds. Many will trigger RLS in susceptible patients. Anti depressants and sedating anti histamines are the main culprits. Swap to safer options( with help of doctors).
3. Do NOT allow her to take Ropinirole, Pramipexole or the Neupro patch. These drugs cause severe worsening of RLS ( it can happen after weeks or years). These drugs are no longer first line treatment because they worsen the disease for the majority.
4. Follow Sue's guidance as to things that help.
She may need medications if raising serum ferritin above 100, preferably 200 doesn't help.
Pregabalin and gabapentin are now first line treatment.
As she responded well to ibuprofen she would probably respond to low dose opioids BUT, given her overuse of Ibuprofen, she would need close monitoring to avoid overuse.
Hopefully, raising serum ferritin and replacing any trigger meds will help and she may not need Pregabalin or gabapentin.
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