RLS advice

[Amy96]

I have suffered with RLS for 2 years now Im only 20, i got diagnosed straight away when i first saw the norologist, theyve put me on Gabapentin 300mg ive been taking it for about 2 months now all though it does help my symptoms during the day and when relaxed i still get woken up about 5/6 times during the night with my legs and doctors are saying its unrelated from RLS but i know its not, Has anyone else still been sleep deprived even though on medication?

[Joolsg]

Hi Amy,

Yes, even though on meds, I am sleep deprived. Being woken up at night is exactly what RLS is so your doctors don't know what they are talking about. 300mg of gabapentin is a very low dose for RLS. 900mg, taken in 2 doses, say 300 at 6pm and 600 at 9 pm is more usual for RLS.

I saw a specialist recently at King's Hospital in London and she confirmed that most of her patients with RLS will manage around 5 hours sleep a night BUT it is disturbed sleep due to the RLS waking them up.

Have you had blood tests done? Your serum ferritin needs to be above 75, preferably around 120. Also look at any triggers in your diet. Avoid caffeine, chocolate and alcohol and look up the meds that can make RLS worse, like anti-histamines, cough medicines and certain anti depressants. Use the search engine above.

I would go back to your doctors and discuss a change to your meds. 2 meds often work better than one. maybe adding tramadol or codeine to the gaba would allow more sleep.

Take care,

Jools

[Amy96 in reply to Joolsg]

Yes ive had my bloods done it revealed i was vitamin b12 deficient but ive got that sorted now but my RLS is still the same, i get about 4/5 hours sleep a night and even at that it takes me hours before i can even get to sleep because of my legs driving me crazy, i have even complained to my mum i would rather have no legs than have to deal way this, i feel like no one understands how frustrating it is, ive been looking to get leg massages because i 24/7 with this but even worse at bedtime, i got brain scan & spinal scan aswell they think i may have inflammation of the joints aswell, i havent heard the results from them yet, May i ask what are the brain & spinal scans for? I drink tea a lot but i have to to be able to stay away during the day especially in the morning, i dont drink alcholic and i dont smoke, also illergic to anti imflamitries & histamines, i get cocodimol but ive been taking theses for years to help and i hate relyint on them to help me i dont want to be taking the painkillers i have completly cut them off the past few weeks even though my RLS is getting worse. & i will defonetly go back to my GP, the norologist wrote to my GP and said 100mg gaba to 300Mg and increase every week theyve put me on 300 & left me there!! Im really annoyed because i told the doctor Look im still being woke up during the night with my legs and he said "Em well thats unrelated from your RLS" clearly not got a clue what he was talking about, Im gonna make an appoitment today and get this sorted!

[Joolsg in reply to Amy96]

Most GPs know nothing about RLS so the more you can read up on here the better. Print off any threads or pages you think will be useful. Can you emailor write to the neurologist you saw and say the dose of gaba is not doing anything. In the meantime, Ask your GP to increase the Gabapentin to 900 mg and look up and print off the NICE guidelines on RLS. They show a table of all the meds used to treat RLS and the cost.Your GP will then see the dose suggested is 900mg so will not be so reluctant to try it.

Also, recommended ferritin level is 12-200 but if yours is above 12 GP would say it was fine but it needs to be much higher so double check that.

I really sympathise and hope you manage to find a GP who will listen and help.

Jools

[Amy96 in reply to Joolsg]

Yeah mines dont seem to have a clue and the juniour doctors seem to think they know everything but dont! Its driving me crazy, Also may i ask did you get a brain and spinal scan? And what was that for? Because ive had that too & numerous amounts of blood taking from me still dont seem to be getting helped any, and they tell me to slowely increase my dose of Gabapentin but today im gonna get up and take 2x 300mg because i really struggled last night, i only take 1 900mg a day, thankyou very much for your advice you have helped me loads and gave me that boost to go to my gp and get this sorted instead of feeling like no one understands or has a clue!

[restlessinlondon]

Hi Amy96, it's a good idea to check your diet too. You say you are drinking a lot of tea - unfortunately caffeine in tea, coffee (even chocolate unfortunately) can make matters a lot worse. Have a look at suggestions on rls-uk.org, they also have a section for professionals which would be useful for your GP!

[Amy96 in reply to restlessinlondon]

I like Tea i do drink a fair ammount through out the day but this is only because i need it to stay awake, i cant stand coffee, Not a big chocolate fan i dont eat much but i eat at the wrong times which has caused me to keep excess weight on, i do go to the Gym and excerise but this makes my RLS 10% worse, any form of excerise only walking and stretching releaves me on my symptoms, Im gonna go to my GP today i have an appoitment have u give me some advice on what to say to them? I want medication change my Gabapentin put up iam only on 300mg 3 times a day, which isnt helping any, also would like a back up medicine to help relax me at night time and my body is very up tight and my legs ache and tingle i sometimes feel like crying i roll about my leg that much because my legs drive me insane, i feel like i wont be able to get a job or anything in the future because iam in pain 24/7 and i get 4/5 hours a night if your lucky i do see every hour on the clock, Im also a young mum so i have no other option but to get on through out the day but i feel like Doctors dont have a clue, & Im only 20 years old.

[Graham3196]

I have been told that tea is worse than coffee because it has other chemicals in it that potentially affect RLS. (For example tannin ) Buy decaf coffee and try to make do with it whenever you need a cuppa. No sugar is probably a good idea as well.

Cheers

Graham

[Amy96 in reply to Graham3196]

Thank you for your advice its been very helpful! I was also taking T5 fat burners witch have serious ammounts of caffine and my legs have been so bad the last couple of weeks im not taking them anymore but i glad i now know the dos & donts

[Joolsg]

hi Amy,

Reading your last post it seems like you are on 900mg of gabapentin. I thought you were on just 300mg. If you are taking 300mg 3 times a day already, that should be helping. Try taking it at a different time. 300mg at 6/7pm and 600mg at 9pm. As you have a young child, just out of interest, did the RLS start during pregnancy? I suspect low serum ferritin is the culprit so start taking gentle iron- ( iron bisglycinate) you can get it at Holland & Barrett on offer at the moment- 2 for £10. Take one or two at night on an empty stomach to see if it helps.

Definitely stop the fat burning pills which are high in caffeine. I am not sure why you have had MRI scans- that's not usual for RLS but maybe your GP wants to rule out any trapped nerves or something like that. Do any heavy exercise in the morning as it can make RLS worse if you do it too close to sleep time. You are right that stretching helps, just do that and gentle yoga ( you can get free sessions on the internet these days).

Hope you get some sleep soon,

Jools

[Amy96 in reply to Joolsg]

The Gabbapentin is not working what so ever, & No it didnt happen during pregnancy my Daughter is 3 4 this year ive been suffering with my legs for 7 years then kinda calmed down then the past year and a half has been really had, I went to my GP today i left really hurt and upset as he told me that he doesnt know anything about RLS and that i should be fit and healthy i shouldnt have all theses symptoms, looked at me and told me "you dont look like your legs bother you" and said he isnt giving me any medication to help me sleep because there addictive, i feel at a dead end because no doctor in my practice has a clue on what RLS is and there not willing to help. My iron levels are fine i had bloods taking and i take iron tablets anyway and vitamin b12 as im b12 definicent. Im really stuck and hate this suffering!

[Graham3196 in reply to Amy96]

I hope you didn't pay the doctor's bill!

Is there something in the UK medical system that stops you changing doctors? I am guessing you are in the UK

Perhaps if you mention the name of the city you live in someone in this forum will know a good doctor but I am not sure if there are risks in doing that. I guess if its a bigish city it will be safe.

Otherwise ring a few local clinics and ask if they have a doctor who is well informed on RLS. Tell them that you can't afford to waste your time with doctors who are not familiar with the disease. You might say it a bit more gently than that but make sure your message is clear.

And, of course, consider the FODMAP diet as an alternative to medicine. For information search this forum for FODMAP.

[Amy96 in reply to Graham3196]

I live in Glasgow, Scotland UK so NHS free health care but its not the point its really humilating and embaressing i keep going to the doctors and they fob me off like that because they dont have a clue, and when your registered with one doctor at a practice you cant just phone around other practices (doctors) my own GP should be pointing me in the right direction of someone there not doing anything for me at all Im really upset about it.

[Smiler53]

Tuesday 10 pm channel 5 There is a programme about RLS.

[Amy96 in reply to Smiler53]

Have it on Record already!! Hopefully get the answers im looking for

[Smiler53 in reply to Amy96]

I can't get over the shock that it's actually going to be in TV. Most Drs are clueless about RLS. I always print stuff off this forum and take it to the Drs. I'm lucky that my doc reads it and acts upon it. She openly admits that Drs don't know much about it. It is very hit and miss on which drug or combination of drugs suit each individual. I recently printed off a posting that pippens2 put on. I took that to my dr who was astounded. She said "Is this how it is for you?" Yes! It is hard trying to explain it at times. I'm glad to say that she's put me on Oxycodone last week. I can go 3 night's on the trot without sleep. Walking around the house all night, falling into things and doing a number of strange things in my sleep/wake walking. All due to sleep depravation. You will get lots of support on here. I hope you can get through to your Dr eventually. Good Luck. X

[Amy96 in reply to Smiler53]

Can you go on my page and see my other post i posted a few hours ago! Im at my absolute witts end with my doctors there not helping me what so ever!!! And thankyou i really appreaciate that! X

[marsha2306]

I agree with Joolsg 100%. I am assuming that you don't have RLS during the day so the nighttime is when you want the medicine to work for you. I was actually as Joolsg said, taking 300 mg gabapentin at 7:00 pm and 600 at bedtime but, with the help of my brilliant neurologist, switched to 900 mg. at 9 pm and haven't had a twinge of RLS since. The dose you are taking in the daytime isn't lasting long enough to help at night.

[Amy96 in reply to marsha2306]

My feet and my back suffer more during the week, and then my legs are horrendous at night time, im on 300mg 2 3 times a day so im gonna take 2 at 7pm then another 2 at 10pm tonight see if it works, im in agony every night.

[marsha2306 in reply to Amy96]

If you take it at 10 pm you run the risk of it not fully getting into your system if you try go to go too soon after that. Try 6 and 9 instead or 900 mg at 9:00.

Also, it sort of sounds like your feet and back are not RLS.....

[marsha2306]

Also, see if you can find the article I earlier posted on Iron and take it to your doc. It's so unfortunate that most doctors don't know anything about RLS.

[Amy96 in reply to marsha2306]

I know im really at my wits end with my doctors they look at me as if Im stupid and i dont know what there talking about there also not willin to experiment they said they only go with what evidence there is so thats the only thing they will proscribe me its beyond a joke, i take plenty of vitamins and iron supplements my iron levels are fine, when i was 11 i had a serious leg injiry on my knee cap ive had metal pins holding my leg together i got them out last year due to pain in my legs i had a lot of nerve damage and lost most feeling in the left hand bottom of the leg i was really bed bound for 6 months with this & then once i recovered i snapped my ankle and i was back bed bound for another 3 months, my legs went really weak as i wasnt using them after i had my daughter i started going to the gym i lost alot of weight im back to a healthy weight dont have the toned 6 pack body id like right enough lol, but im happy with how iam now with my myself but this RLS has came on so bad the past 2 years even walking im in agony cant walk long distances, then when i sit down my legs tingle and ache i cant win im really unhappy about this with no doctor willin to help me i have complained about the 2 GPs who have gave me a hard time about my RLS, and i also found out the gp i seen yesterday told me my brain and spinal scans where fine and sent me on my way, i had a phone call today from the doctors saying no it wasnt ok they want me back for more testing so a fault from that GP who clearly fobbed me off because he didnt know what to do with me because of my RLS.

[Kaarina Administrator in reply to Amy96]

Amy,

Are you able to let the GP's at your surgery know about the RLS Desperate for Help programme being aired on Channel 5 on Tuesday 4 April at 10.00 p.m.?

I really think they should watch it. I take it you will be watching.

[Amy96 in reply to Kaarina]

Yes i have informed the gp i seen yesterday about the programme they looked at me stupidily maybe they should all watch the programme! I have an app on tueday with my own Gp and i will be telling him about it to tell his other doctors in his practice maybe learn a thing or 2!

[Kaarina Administrator in reply to Amy96]

I really think they should watch it, Amy and I am pretty certain they will learn heaps as they appear to know nothing about the condition.

Remember to let them know that it will also be available on catch-up if they cannot watch on the Tuesday evening.

[Amy96 in reply to Kaarina]

I will do 🙂 i thought doctors were meant to know theses things clearly not lol bad day when you need to teach a doctor a thing or 2 eh? Lol 😜

[Kaarina Administrator in reply to Amy96]

Trouble is, Amy, GPs know a little or not much at all, about a lot of different conditions. I tend to find out information on what I am going to the doctors about, that is if possible, just in case I am looked at blankly.

[marsha2306 in reply to Amy96]

Keep in mind that although your iron level may be fine for a "normal" person, it should be over 100 for someone with RLS. Mine was 70, which is considered normal but my specialist sent me for an iron infusion.

Look up Dr. Christopher Early at John Hopkins Hospital, Baltimore, Maryland USA. Also watch the videos related.