I found this forum through a link in the RLS-UK website. I am a 66yr old retired Male living in the NE of the UK. I have read quite a few posts since joining this forum and have found them interesting and informative.
My story
I have had RLS for many years. In fact I think probably since I was a small child. My Mother told me that as a samll child I used to figit a lot on long car journeys. I became aware of my RLS as a teenager but at the time it did not disrupt my sleep too much as I slept very well in those days. By the time i got to my into twenties the situation had changed however. During my career I used to do a lot of long haul flights. The first long haul flight which caused me problems was a flight from Tokyo to London and my restless legs caused me servere discomfort preventing me from getting any sleep. In those days there was no medication that I know of and very few people,including GP's knew about this condition.
Both my Mother and my Aunt suffered for years with servere RLS symptoms which my Mother called "Jumpy Legs" Finally my Aunt discovered Ropinerole and both my aunt and my Mother started to take it. I too then started to take it but only when required which was usually 30 mins before a long haul flight. I found that it worked very well and probably could not have continued to travel without it. I took Ropinerole in this way for many years and it continued to work well untill late last year when my RLS symptoms became much worse. I started to reasearch it and discovered the problem regarding Augmentation. I immediately stopped taking the Ropinerole and contacted my GP by sending an electronic request to stop the Ropinerole and try something else. He prescibed 100mg Gabapentin to be taken in the evening. This worked for about a month and then seemed to make no difference so I stopped that also.
Since then I have been into Hospital for an unrelated Operation and in the 6 weeks since my RLS has become significantly worse to the stage now where the symptoms can start mid to late afternoon and tend to get slightly better by about 4 am. For the first few weeks I got about 2 or 3 hrs sleep at best and now somtimes get 4 - 6hrs if I'm lucky. I paid another visit to my GP and re started the 100mg Gabapentin increasing to 200mg after two weeks and due to increase again to 300mg in another two weeks time. I think that it may be working to a limited extent. However I don't understand why the starting does for over 65yr olds should be 100mg instead of 300mg.
Reading some of the posts,
Personally I don't think that Alchohol makes the symptoms worse. I think that the Alchohol makes you drowsy and that is what makes the symptoms worse. I go for long periods without Alchohol and my RLS is just as servere with or without it.
I have been an exercise fantaic for many years and have tried all sorts of things to try and stop or reduce RLS. Nothing has worked for me.
I take Omprazole for another condition and do not think that it makes any difference at all.
Written by
SaltyUK
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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.
I have a full blood test every three months as I have a rare blood mutation called JAK2
As it happens I am having a blood test tomorrow so I called them to specifically ask for a ferritin & TSAT check also so hopefully they will do that and I’ll get a result on Thursday when I talk to the consultant.
Many thanks for all the other very usefull information also. I don’t think my GP is aware of the high dose of Gabapentin that is required to settle RLS so I’ll be following that up too.
Hi SaltyUK - Welcome to the site. I am also Jak2 positive and suffer from essential thrombocythaemia. I am treated with blood thinners and the chemo drug - hydroxycarbamide. I have had RLS all my life and now at 81 I am on buprenorphine which is giving me about 5 hours sleep which is a good improvement. I looked for you on the MPN site which always gives lots of good information for us MPNers. It is always a worry when trying out a new drug therapy to make sure that it will not interfere with our MPN and blood levels. Wishing you all the best in your quest for relief from RLS.
Hi Jelbea, Thanks for your reply. I am also on blood thinners. I inject 14000units Tinzaparin daily. I don't think my situation is as bad as yours regarding MPN. I just have a blood test every three months to check my endocrit level. Which appears to be stable at the moment. I'll ask the consultant about the likelyhood of any of my medications intefering with MPN.
I suspect the reason is because gabapentin can make one slightly dizzy and they are afraid that a senior citizen will fall which is ridiculous because 65 isn't that old. I was 80 when I started it at 300 mg. It takes 3 weeks for gabapentin to be fully effective. After that the usual 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. 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 or 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. 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 daily." 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...
By the way, welcome to the forum you will find a lot of helpful advice here as well as sympathy for what you are going through. 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, 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, 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.
Welcome Salty to the club no one wants to be part of.Read all you can as RLS isn't taught at ANY stage in medical training. Even neurologists know very little.
The best, most up to date information is in the Mayo Clinic Algorithm and the top experts are in the USA. Several have helpful websites.
Dopamine Agonists like Ropinirole are no longer prescribed by experts because of the high rates of drug induced worsening( augmentation) and impulse control disorder. They are only used as a last resort, where everything else has failed.
The UK medical Profession is at least a decade behind.
Many younger GPs & neurologists admit they know nothing and are willing to read the research and information we send.
Use this as an opportunity to educate your GP. Then they will spread the word.
Gabapentin helps many and is first line meds AFTER raising serum ferritin and removing/replacing meds that trigger or worsen RLS.
Average dose is around 1500-1800mg taken at night only in split 600mg doses 2 hour's apart. Pregabalin is in the same class of drugs and is better absorbed so you only have to take one dose at night.
Omperazole is a PPI calcium blocker and generally worsens RLS. Alternatives are taking a really good probiotic and switching to gaviscon.
You will probably have been given an anti emetic with anaesthetic that triggered RLS. Also, opioid pain killers after ops can cause RLS when discontinued.
Raising your serum ferritin above 100, preferably 200 can resolve the majority of RLS without the need for meds. Pills can take months/years so iron infusions are now given to raise levels faster.
There are a handful of knowledgeable doctors in the UK and some will prescribe iron infusions.
Exercise in late afternoon or evening can trigger RLS. So switch to mornings or early afternoons.
Thank you for all the information which is very interesting indeed.
I will certainly follow up your recommendations. The Omeprazole was prescribed by my liver Consultant so I’ll ask about that.
Very interesting re the anaesthetic and Opioids.
I usually exercise in the mornings for about 90mins at 85% max HR although haven’t for the past 6 weeks and my RLS is worse than ever but I guess that the cause is some of the other factors that have been mentioned.
When my RLS was severe I had to cut back on exercise - it was bicycle season - I cut back to real low, just spinning bike rides for 45 min. BTW Myeloproliferative Neoplasms is a very pro-inflammatory condition which is probably contributing to your RLS. "MPN is generally a disease of the elderly with the average age of onset being 65 years old, further highlighting the association between inflammation and development of MPN." ...
Omeprazole is a proton pump inhibitor and RLS-UK says most PPIs make RLS worse. It also can interfere with the absorption of iron and magnesium. A safe antacid is Gaviscon extra strength tablets and liquids. Don't stop taking omeprazole although you can switch directly to gaviscon. Discuss this with your doctor.
Hi, So sorry to hear that your RLS has increased. It's very frustrating, but you will find lots of help and support on this forum. I have had several surgeries in the last two years, always followed by an increase in RLS. Some of it was caused by anti nausea medication post surgery. Inflammation following surgery can be a trigger for RLS, and should eventually subside to the pre op level. I'm a member of RLS-uk, which has been a great support to me.
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Hi, I'm new, my story and a few questions.
Hi I'm new to this forum
Rls and exercise.
