Having had very mild RLS for a number of years it worsened dramatically in Feb 2020. In Jun this year I increased by HRT and am experiencing an escalation in my RLS symptoms and so now I’m wondering if my starting it in May 2019 could’ve been the original trigger for them worsening - is it possible it could’ve taken 8 months to have an impact?
Any info welcome - I recognise I might just need to try stepping my HRT down to really know.
HRT contains estrogen and estrogen is known to make RLS worse. If you didn't increase it in Feb 2020 then something else made it worse then and of course at this point it is hard to remember what might have changed. 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
You might be interested in what can help. 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, 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.
I notice you said in a previous post that you didn't want to take any medicines for RLS as they can make it worse in the long run. Although that is true of the dopamine agonists, it is not true of gabapentin and pregabalin which are now the first line drugs in the treatment of RLS. 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...
Have you had your ferritin checked? If so, what was it? 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 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
Thanks. Am in the UK and have been reading this forum for a long time, and have tried all the usual things. I haven’t been able to pinpoint a specific trigger in 2020 other than decreased mobility prior to a hip replacement (done in Sep 2020). CBD oil and magnesium do help a little, as does walking in the early evening. I don’t wish to take gabapentin or pregabalin if I can avoid it because of their side effects (particularly the emotional ones - I am a psychotherapist and being exposed to ‘chemical’ / neuroemotions would be problematic for my work) and they are hard to withdraw from. I am fortunate to be able to determine my own work schedule so can sleep in to make up for the awake hours at night.
I did take iron supplements for a while - my ferritin was at 70 and I got it to 145 but it made no difference, so stopped taking them. It is currently at 90 (and 2.94 trans).
They are not hard to withdraw from unlike DAs. Obviously that is your choice on the gabapentin/pregabalin but emotional side effects are not common. You could try them when you are on vacation. If you ever decide to, post back here and we can give you some advice on how to take them.
I read a lot of research for a prescribed drug dependence lobbying organisation and the evidence is that people withdrawing from gabas have a similar experience to those withdrawing from benzodiazepines, so it needs to be done on an incredibly slow taper. But interesting that the emotional s/es are not common - might try if I get desperate.
If one reduces by 200 mg every couple of weeks one will have no withdrawal symptoms. Usually side effects one can't live with are found before one has taken very much.
Anyone taking Gralise(gabapentin extended release) for RLS? How long did it take for it to start working?
How long does it take for iron infusion to work?
How is RLS diagnosed?
How long would you expect pramipexole to work?
Is it Primary RLS or Idiopathic Tramadol-induced RLS?
