Worsening RLS

[AHG123]

Will get my Ferrutin checked .

Aged 62 female.

I have started knitting and sit still for several hours in the evening and wonder if that isn’t helping-had a night off knitting and a night off RLS on Saturday! Clutching at straws?

Also associate it with being hot in bed.

Not taking any meds at all at present. I have HRT patches for Osteoporosis, Lansoprazole for Gastric Acid and Propranolol for anxiety.

Also wake with a pounding frontal headache. I am anxious about my son who is unwell.

Just wondered if any of this chimed with others. Thank you.

[ChrisColumbus]

Sorry to hear this!

Propranolol should be OK, but there have been reports that lansoprazole and other PPIs can be bad for RLS whereas Gaviscon as a reflux suppressant is considered safe.

Oestrogen in HRT can trigger RLS. I also find being hot in bed is bad for me, but conversely others find being cold bad. Too little exercise (and too much exercise!) can be bad for RLS....

Will be interesting to hear your Ferritin and transferrin saturation numbers: try to make sure that the test is done in the morning after not eating overnight (and after not taking iron supplements - if already taking - for 48 hours). Report back on the actual numbers: don't let your doc just say 'normal', they very rarely know anything about RLS.

[SueJohnson]

ChrisColumbus is correct in his advice. However the main problem with PPIs is they inhibit the absorption of iron if you end up taking it to increase your ferritin. It is questionable whether it makes RLS worse. Any distracting activity like knitting is known to help with restless leg symptoms, but I doubt if that would extend much past the time you are knitting. If you do end up taking medicine for your RLS, don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. 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 or pregabalin as it will interfere with the absorption of them. 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 at Https://mayoclinicproceedings.org/a...

[SueJohnson]

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.

[Jelbea]

Hi AHG123 - I agree with the others regarding Lansoprazole. I note you say you wake up with a pounding headache. I was put on Lansoprazole a few weeks ago and one of the side effects is headache. It actually triggered more frequent migraines for me and I stopped it again. I was given Propranolol for anxiety issues a couple of years ago and after four days I had not only restless legs but restless everything - so bad I had to go to A&E. The doctor told me to stop Propranolol - my heart rate was very slow as well. The following day I started to lose hair and in fact lost about one third of total hair.

A more simple medicine for your gastric acid would be Gaviscon which is OK with RLS.

I was interested in your comment about knitting. I have found in the past that knitting or crochet work (especially with a pattern) delayed the onset of my restless legs in the evening. I think that is to do with the concentration but eventually RL catches up with you. This also goes for other things which take concentration and many people on this site have found this. I see you also find your symptoms worse when hot in bed and again this would make me worse. For some it is cold that is the culprit. We are all so different. I hope your son's health improves very soon. I am 80 but still worry about my two "children" and always will - it is a "mother" thing!!!!! I wish you well.

[Typicallygaslit]

I would also be vary of the HRT. I am myself finding that the HRT (oestrogen only) has been making my life much worse without me realising it was the culprit. I will write a post about it when I’m finished coming off it. Oestrogen appears to be a stimulant!