Newbie here, many thanks for viewing my post and your time, it's appreciated.
I have suffered with RLS for few years and has got worse in the past few months where it is now effecting my daily life. I was diagnose with mild sleep apnea too couple of years ago.
I want to now get this properly investigated/diagnosed and require your help with this first stage. I would be grateful if you could share your experiences and recommendations for NHS and private consultants and sleep study centres in the UK.
Many thanks once again for you help and your time.
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Hitsy
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When you see your doctor ask for a full iron panel. Stop taking any iron supplements 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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. 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. (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 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...
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, eating late at night, 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, 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.
Many thanks for your reply. I have read many of your posts on this forum, thanks.
Test done last year - Ferritin 145 Ug/L, Transferrin Saturation 33.9%. Has been similar to these levels previous years too whilst I've had RLS.
Currently not on any medication but I do take vitamins and minerals as per below. As per your suggestion I will not take prior to test and did not do so either for test done last year.
Multi vitamin, Omega 3, vit D, zinc, vit c, potassium, probiotics, ginseng
I have watched Prof Dr Richard Allen's video as suggested on this forum and I like his suggestion of trying an iron infusion before going down the medication route.
Yes I have come across his name on this forum and seen his name on other sites. How have you found him, was he helpful? Why does he want to see you via NHS and not private? Does he offer iron infusion?
He is very helpful and really an expert on the subject of RLS. He wants to see me on the NHS in case I need an iron infusion. Am waiting results of ferritin blood test. I’ve had RLS for about 15 years. My GP put me in Pramipexole which worked very well until I was up to 6 x .088 every day. It became worse because if augmentation. Professor Walker put me on Pregabalin 150mg and 3 x .088 Pramipexole. It didn’t help so he then changed my prescription to Rotigotine patches 2mg and 2 x .088 Pramipexole. My ankles swelled every night! Am now on 600. Mg gabapentin and 2 x .088 Pramipexole. This is not working but I believe it may take up to three weeks for the gabaoentin to take effect. He also said that I can take another 300 mg gGabapentin at midnight if the RLS is bad. Needless to say it’s not helping. I really sympathise with fellow RLS sufferers it is so debilitating I don’t know what to do with myself at night I’m up at least three times every night trying to walk it off I’m so tired as my sleep is so disturbed I’m on Omeprazole and Prozac which I have to take I understand these are not good to take if you have RLS It’s just a vicious circle
You are right about that Omeprazole is a proton pump inhibitor and RLS-UK says most PPI's make RLS worse. Gaviscon Extra Strength Tablets and Liquids are safe for RLS A safe antidepressant is trazodone. You might want to discuss these with Professor Matthew Walker.
In case he hasn't discussed with you the best way to take gabapentin: It does take 3 weeks before it is fully effective. After that the normal recommendation is to increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects of gabapentin 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
However gabapentin may not be fully effective until you are off pramipexole. I hope Professor Matthew Walker has plans to do that.
If you haven't read the Mayo Clinic article which is the bible these days check it out at Https://mayoclinicproceedings.org/a...
I have seen Dr Robin Fackrell of Bath Hospital privately. I found he was very helpful and suggested I had an iron infusion which is what I wanted to try rather than other drugs. Still trying to get one on the NHS which is not proving easy… He does do them privately but he didn’t think it would be necessary to go private. Dr Kirstie Anderson at Newcastle Freeman Hospital is RLS aware and has organised infusions in the past.
Many thanks for replying and your time and thank you for the recommendations.
Like you, I also want to try the iron infusion route first rather than the drugs. Why did Dr Fackrell not do infusion under private as I would imagine that infusion under NHS would be mere impossible for RLS unless your iron levels are seriously low which mine are not.
Did you see Dr Anderson in Newcastle? Were your iron levels in normal range or below Sue's suggestion above?
Dr Fackrell’s view was that it was a fairly standard procedure which my GP could organise and it shouldn’t be necessary to go private. It’s not turned out like that so far, but I haven’t given up yet.
Did you find any answers to your original post question, because I'm from the UK too and I'm struggling to get anything done about my PLMT - GP totally clueless
Sorry for the late reply. I have seen consultant for RLS and have received meds which I am trying but no positive result yet as it's still early days. So not much has changed here, in fact it is now effecting my mental health and daily life as quality of my sleep has been poor for 2-3 years. Really hoping it will improve soon. Wish you best of luck too.
My legs started to feel tense and sort of nervous and would drastically spoil my sleep and also spoil times when I had to sit still ie Theatre or eating a meal out. I would also ‘kick out’ at night when asleep…. When I eventually got to sleep !!!
My top front of my legs would also seem to get cold. I could almost draw a line around the area affected.
I eventually found out the I had RLS and also the kicking in bed was Involuntary Leg Movements (ILM). My wife would be black and blue !!!!!!
Good news is that I knew what I had but how could I stop this….
I started a contract in Kuwait and the food I ate was mainly all processed and without knowing I was consuming more salt than I should..
My RLS was very, very bad and my sleep was affecting my work and my mental health.. well… I just felt tired and not ‘sharp’ in work. I was getting desperate….
I googled RLS and came across someone in the States saying they had the solution and for $19.99 I received an e book with ‘The fix’.
It only really needed to be an e mail back because across the second page in massive letters was the word SALT and the message was Reduce or Cut out totally.
The book advised to go ‘cold turkey’ with no salt for five days so I ate eggs and chicken breast cooked without salt… WOW I felt alive and active and slept better than I had for ages. I never thought that salt would make so much difference to me.
I would advise this cold turkey method as it will show you how drastic it is and you should feel better. The taste buds in your mouth will also start to ‘come alive’ as salt is actually harming them.. I think.
Apparently, although we have a daily intact amount of salt we never should add salt only get the salt from natural means. Some food has salt naturally. Salt was introduced into our diet due to the fact it preserved meats etc…..so it’s a man made introduction.
So I now to try to prevent RLS
1.Stay away (or try) salt in foods or eat foods with reduced salt
2.Reduce my caffeine intake … never after 16.00 (this includes tea also)
3.Reduce Chocolate and never (if I can help it) in the afternoon
If I have not been so careful or could not help it and start to get RLS I
1.Heat a bean bag in the microwave to quite hot and place it on my legs or in between my legs. It’s got to be hot enough that you certainly know that you’ve had heat there.
2.I use my fists (knuckles) to bang on my legs in the area that I have found to be cold and its strange, but I can feel when I hit the spot, so I am quite hard on the area and that seems to move the circulation of …. I don’t know.. Blood or nerves but it seems to free up the anxiety in my legs.
3.Sometimes if away from home and the hot bean bag, I run a hot shower and concentrate the hot jets on my legs.
Now. The above is what I think, experienced and what I am doing. It works for me and now I know I feel I am in control but not fully as sometimes I’ll eat something with salt in which I can not help but then I will probably end up using the ‘hitting’ method of relief.
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