Hi allNew to the group!
I'm having a really bad time with insomnia because of RLS. I had it under control when I started on HRT. The times I've had RLS have been puberty and pregnancy. So does seem to be related to hormonal changes. I'm on highest does of HRT but seems it's not working anymore as RLS hitting hard along with the heat at night! Also have fibromyalgia.
Love to hear from anyone going through the same!
Welcome to the forum. You will find lots of help, support and understanding here.
HRT makes RLS worse for most. Amitriptyline also makes RLS worse. I assume you are taking it for your fibromyalgia.
Cyclobenzaprine is safe. Things that are helpful for fibromyalgia which are also helpful for RLS are yoga, massage,medical marijuana and exercise - but make sure it is moderate since strenuous exercise can make RLS worse. Check for low Vitamin D.
Also you might want to increase your gabapentin as that helps both RLS and fibromyalgia.
Make sure you are taking gabapentin the right way. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it atHttps://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. 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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 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.
Your serum ferritin levels drop during puberty (blood loss through menstruation) &.pregnancy ( each pregnancy uses up 1000mg iron). We also see iron drop in peri menopause.As SueJohnson advises, the first step is to check iron and raise serum ferritin above 100ųg/L, preferably 200ųg.
You can try taking ferrous bisglycinate at night as soon as you have the blood test results. Many people report improvement.
Amitriptyline and similar 'nerve pain' meds trigger and worsen RLS, so reduce the Amitriptyline slowly and use gabapentin or pregabalin, which help fibromyalgia and RLS.
Let us know the actual numbers from your full iron panel blood tests, and we can direct you to an iron clinic if you might need an iron infusion. The NHS is unlikely to arrange one as they're so behind on RLS knowledge and treatment, and funding is through the floor.
HRT can make RLS worse for some, but not everyone. The progesterone part of HRT made mine worse, but not the oestrogen. So, it's a case of trial and error with HRT.
But first, check the iron levels.
Thanks for all this info. I'm not on Amitryptiline now. It did make RLS worse. Gabapentin and Pregabelin both gave me severe dry mouth which I couldn't deal with.
I didn't realise you'd tried gabapentin and pregabalin. Presumably for the fibromyalgia?If you need meds to treat the RLS, if raising serum ferritin doesn't work, the other meds to treat RLS are low dose opioids, and they can also cause dry mouth. I'm on Buprenorphine and I use dry mouth products to help.
Evoxac(cevimeline) helps with dry mouth by causing the glands in the mouth to produce more saliva. Boots Dry Mouth Spray has been used by some.
I hope you can continue with HRT. I had to stop because of the extreme RLS it caused.
Hi, I used to go to fibromyalgia meetings and they talked about trigger points which I now know can be found and treated with a tsubo to treat rls. see my posts🤔
RESTLESS LEGS SYN
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Restless legs and Warfarin
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