I have had a worsening of my RLS over the past two weeks where I have experienced symptoms every night, severely impacting on my sleep. This is affecting my mood and my relationship with my husband. I am now also experiencing a feeling of ‘cold’ down my left calf. My leg does not feel cold to touch but it’s a weird sensation. This happens whenever I sit for any length of time.
I am seeing my GP tomorrow. Please could I ask for some advice on what I should be asking him to do and any recommendations for something to help me sleep until this has been sorted (something that doesn’t worsen the RLS).
I have cut out alcohol and caffeine and take daily exercise. I do take a PPI (Omeprazole) but no other drugs.
HELP !!!!
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Dires
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Read the Mayo algorithm, and ensure your GP arranges Full panel fasting blood tests.Raising serum ferritin above 100, preferably 200 resolves the majority of RLS. The PPI meds can stop iron absorption and that could be why it triggers RLS. You could try a really high quality pro biotic like Symprove to see if it works better than PPI if you have GERD.
Do NOT let the GP prescribe Ropinirole, Pramipexole or Neupro patch as they are no longer first line treatment because of the extremely high rate of drug induced worsening ( augmentation) and Impulse Control Disorder.
Until you raise serum ferritin above 100, a low dose opioid like codeine 30mg or short term diazepam might resolve the nighttime RLS.
If your serum ferritin is below 100 and serum iron below 60, oral pills may take some time to raise levels, so ask if you can be referred for an iron infusion. They are safer today with newer formulas. Quite a few UK hospitals now do them for RLS.
It's OTC. The best prescription medicines for insomnia are Ambien and Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.
Does oral Magnesium help? I can only find anecdotal evidence.
My symptoms are definitely changing in that the left leg sensation (lower leg) has worsened having been with me all day even after my walk. It’s not painful exactly but it is uncomfortable. I’m wondering about peripheral neuropathy?
It can help with sleep. Magnesium glycinate is the one usually recommended. To elaborate on what Joolsg said, 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 multivitamins 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 some advice. the address for the Mayo Clinic Algorithm is 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 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. Joolsg has already given you a safe substitute for Omeprazole.
Also since your RLS is bothering you you are going to need to take some medicine for it. As Joolsg mentioned you don't want your doctor to prescribe ropinirole nor pramipexole because of the danger of augmentation which believe me you don't want. Many doctors are not up to date on RLS and will prescribe them because they used to be the first line treatment for RLS but no longer are. If needed refer your doctor to the Mayo Algorithm. Instead ask your doctor to prescribe gabapentin or pregabalin which are now the first line treatment. (Pregabalin is more expensive than gabapentin in the US) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and 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 you take magnesium don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and don't take calcium within 2 hours.
Thank you again. Do you recommend that I wait for my blood results before asking for Gabapentin/Pregabalin? If my results show I need iron, is it best that I wait for that to be addressed first. I am 71 years old and I have to admit, I don’t like the sound of the side effect profile of these drugs
No I don't advise waiting as even if it shows you need to raise your ferritin, that can take up to 3 months and I doubt you want to suffer that long. If you do need to raise your ferritin and after 3 months you have a new test to show it is over 100, you can try slowly reducing the gabapentin or pregabalin to see if you need as much or need it at all and it is only in some cases of raising one's ferritin that it completely eliminates their symptoms. Don't be afraid of the side effects of gabapentin or pregabalin. As mentioned most of the side effects of gabapentin and 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. And if you find you can't live with the side effects you can always slowly stop using them, Then the only option is opioids.
All the above advice confirms what I've experienced. I particularly want to confirm that Ropinorole is not a path you want to go down. At first, it was a savior for me and I could finally get a full night's rest after years of suffering. But then I had to keep increasing the dosage and augmentation kicked in to an unmanageable level. Getting off Ropinirole (I now take Gabepentin) was a nightmarish 3+ week process with very little sleep.
I’m in the same position, have gone down to 1.5mg from 2mg, but putting off going down again. I know it has to be done, but difficult to manage the sleepless nights when working full time.
I’m concerned about taking any other medicines to help me through, but guess that’s the only way.
It’s not impossible that you have some sort of nerve issue in the leg which could be consistent with getting it after sitting, the feeling of cold and the fact that it’s just one leg. In my experience RLS is felt in both legs. Normal advice for that might be gentle exercise, don’t sit for long periods , careful exercise for posture and core strength e.g. light Pilates.
ok. Often difficult to unravel these things. Trying to find something which has changed can sometimes help but there’s a long list of things which affect RLS not to mention plenty which don’t. However one thing to think about is whether the leg pain occurs at the same time as the rest of the RLS If it’s independent then it’s unlikely to be connected and could be some nerve/neuropathic cause
PPI (Omeprazole) can cause RLS . I was on it and ended up going off it due to the symptoms of RL. Sue will know what can be used instead. I used a liquid antacid which was sufficient for me. Good luck.
Several reasons to avoid omeprazole. Try Gavascon Advance instead. Note - regular Gavascon is a different formula and it worsened my RLS. Gavascon Advance is a totally different product, available in UK, my wife imports it to the US.
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