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Restless Legs Syndrome
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Disco legs has had enough

Hi I'm new here after finding this site on the NHS website. So I've had RLS for about 7 years now and never been to the doctor about it because I was led to think there was nothing they could do . Anyhow I've been doing all the sensible things like changing posture ,heat packs,cold packs, exercise and trying the magnesium spray from H&B (that stuff stings!) Etc . I can only describe two feelings I get . 1, sharp shooting pains up my shins during the daytime - i can live with this...so far. 2, unbearable feelings of what I can only describe as worms crawling through my legs . This happens at night and it has come to a head today , I won't go into the fine details of how it effects me and what I do or what my legs do because as fellow sufferers I'm pretty sure you've read it all before . I cannot cope with this anymore and went to see my doctor . I explained and politely he said 'What do you think I can do ' . It wasn't in a passive way but I understood he was limited as to what he can actually do . Anyhow after a chat he's prescribed me Amitriptyline 10mg , I've tried everything in the way of natural self help so I gladly took these to try . The doctor has issued blood tests too. He also said that it coukd be a case of completing the course of tablets and it could be enough to stop it . Heres hoping !. Has anyone been prescribed these ? What's your experience of them ? Any positives or negatives ?

Thanks

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Hi Discolegs

Unfortunately Amitriptyline is not generally tolerated by RLS sufferers. For a very few, it helps but for the majority it unfortunately can make things worse.

It is listed as one of the medications to avoid as you will see from this link. Scroll down a little to find the list. rls-uk.org/treatment/

You may like to visit the RLS-UK website if you have not already done so. rls-uk.org/

There is also a link on the website for medical professionals. rls-uk.org/professional-res... Perhaps your doctor may like to look at this. ;)

You mention your doctor is sending you for blood tests. Do you know if he included testing your ferritin levels?

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Oh no 😟 was hoping it would be my saving grace . I can't bare the thought of it making it worse .

Doctor said he was going to do a panel of bloods . I also told him that when I wash my hair it falls out and i mean really falls out . I know he's testing my iron but other than that he didn't say. I was anemic when pregnant 12 years ago and often have dizzy spells but I don't know if the two could be connected . I'm sure I might have a better picture when I have the bloods done . I will give the links a read though as there might be something I could try .

Thankyou

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Hi Discolegs,

You may be one of the very few that Amitriptyline helps.

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Kaarina has given you excellent references - unlike your doctor.

The shin pains are unlikely to be rls - but the night crawling is classic rls.

If you are experiencing suddenly worsening symptoms - then likely something has triggered it. What has changed in your life at this time.?

Food or medicines can trugger rls.

You have a lot of research ahead of you- Good luck with it.

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I am sorry but if your doctor has said that completing a course of Amitriptyline (or any other med ) is likely to put an end to RLS I would find a new doctor pronto. If you are fortunate to find a med that treats your RLS then it does not cure it, only treats it and once you stop that med it doesn't magically go away for good. X

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As others have said, bad idea. Really bad idea. 99.9% of people with RLS will have dramatically worse RLS when taking a tricyclic antidepressant. It helps a lot of people without RLS, but WE cannot take it, it is on the 'Drugs to Avoid List". I have been managing RLS groups for 27 years on and off line, and that is the FIRST time i have ever heard that reasoning to use Amitriptyline. One thing, of you try them, you will know right away, as in tonight if it is going to ramp your RLS. 10 mgs is a low dose. I will say there are always exceptions, but rarely in this case with this med in the context of RLS. Are you in the US or the UK?

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after reading a lot of comments here and everywhere I started to avoid sugar completely three days ago. No soft drinks, so sugar in muesli, no sweets, marmelade, cakes, no etc. Only (dried) fruit for sweet things. The second day I did not have any problems in the day time as well as I did not wake up round 04:00 to massage my legs, like I used to the last couple of weeks. I still use Pramipexol, but will try to minimize that if this sugar thing lasts. So far I a more hopefull than ever.

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Thank you for your posts . I have suffered for 7 years and tried to treat it naturally by taking hot baths before bed , being aware of my posture, being mobile and exercising, stretching before bed and not drinking tea or coffee before bed ....and alllllll the other stuff most of us have tried . I will give the doctor the list of used meds next time if these are unsuccessful. I really don't like the thought of been on any medication long term as I'm a big believer in resistance and treating naturally . However, the comment about the sweetener really strung a cord with me as I daily use sweeteners - in my tea or coffee and on cereal; I never use sugar but ,saying that I've always used sweeteners . The last time i had sugar was when I was about 14 and im 34 now so it's nothing new . Also nothing has changed in my life style . I actually don't think there is any medication that can cure this and i was never under the impression of that but I will still take these tablets short term and will gladly report back the affects because it can only help in research. The doctor did mention another medication but said to try these first and see how I get on with them . On my next visit i will be sure to tell him about the tablets too .

Thank you for your comments

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You may find the website at rls-uk.org helpful if you want to try a more natural route. It gives you food to avoid (though we are all different!) and specific exercises to try. Hope you find something that works for you.

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A history of anemia is a possible reason to trigger RLS. From Johns Hopkins Neurology website " The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." It really is iron in the brain, so a higher than "normal" serum Ferritin level is usually required - for RLS over 100. Again from JHN "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy...on average improved RLS symptom after 3 months." Supplement of choice is Ferrous Bis Glycinate. hopkinsmedicine.org/neurolo...

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Well the shooting pains sound like shin splints I used this a lot and it was because I had my foot flopping in bed so I devised to put a board covered with a pillow so my foot and leg is straight and foot upright so it means sleeping on back but it stops it . , I don’t get shin splints anymore and they used to hurt bad .

The RLS is another problem that I have not conquered yet , The meds he has given will help you sleep they didn’t help my RLS but what works for one etc Happy coming up 🎄 Christmas xx😇

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I would second everything that has been said about amitryptiline. though as you have it it might be worth trying it. I think there is a tiny minority who get relief with it. It certainly won't cure your rls however - that was a cruel indication to give you - there is no cure for it. If you can afford it you should order a copy of Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening for the next time you attend your GP. Alternatively, I believe at rls.org there is a page you can print off to bring to your gp which outlines the recommended treatments.

If you wish to treat the legs naturally, the single most important thing is to make sure your iron levels are up over 100. You should phone your surgery and ensure that amongst the tests your GP suggested he has done a serum ferritin test (it's really the only one of much use for rls specifically). Make sure that when you get the results he gives you the actual figure. Do not accept 'normal' as a feedback. Normal can be anything from 12 to 150 for women and 12 to 300 for men. With RLS you should be aiming to be above 100. I believe a Vitamin D supplement is also indicated in rls sufferers.

Then there are a number of recommendations for restrictive diets that are enthusiastically endorsed by posters on this forum. You could use the search bar for fodmap diet for example. I find that not eating after about 5.30 pm and going to bed quite hungry can be helpful. Ensuring that your bladder and bowels have been vacated is also helpful. More recently a poster has found excellent relief using a migraine relief formula involving magnesium and some 5htp (which for some people unfortunately aggravates the legs) and a couple of other supplements.

If you go back through the posts you will find a large number of recommendations and you may find some work very well for you.

Unfortunately there are some for whom none of the non-pharmaceutical options work effectively and when the legs are relentless through the night every night a normal life is just not possible without pharmaceutical intervention. At that point one starts to realise that it is not so much a question of coming to terms with being on medication indefinitely - and coping with the unpleasant side effects of fairly high octane meds - it is a question of coming to terms with the fact that even with pharmaceutical options it can be a struggle to treat rls.

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Thanks for the information regarding the iron levels ...I'd of never had known to ask about that. I'm eager to get these tests done as I am starting to think it could be an underlying issue . My hair is thin and falls out

I'm always cold

I often go dizzy

I often have a 'thick head' not headache but foggyness

And tired more than I should be

Thanks for all the responses it's really helpful .

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Those can also be symptoms of an under active thyroid, get that checked out too x

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Twitcher is the name of the poster who gets relief with migraine relief tablets - you could search for his/her post.

Btw I agree with others who have said the nocturnal crawling worm sensation is exactly rls but the pain in shins during the day sounds as if it is something different.

Also, if your doctor said 'what do you want me to do about it', it sounds like he might be prepared to work with you. In spite of the fact that he started out with the wrong medication it might be worth sticking with him, educating yourself widely about the available medications and trying to come up with a good regime in tandem with him. A gp who is prepared to work with you is actually invaluable provided you are fairly knowledgeable yourself. Many people suffer with gps who adamantly (pigheadedly refuse to entertain the best options.

I would try eliminating the sweetener. Sugar isn't great but sweetener is MUCH worse. Have a look at the RLSuk website and also rls.org for any substances that should be avoided to make sure you are not inadvertently exacerbating your symptoms. You are very young to be embarking on medication but you do need to get enough sleep to be able to live your life optimally.

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The doctor in question is the son of my usual doctor and also very young , but still a doctor all the same . His comment was said in a " there's not much I can do " type of way . He wasnt dismissive but understood that he's limited in that capacity. The list of substances will be an interesting read too .

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I would agree with everything above others have posted above.

It sounds to me that you have low serum ferritin and getting the figure above 100 will very likely resolve your RLS. Hair loss and dizziness are classic signs of anaemia. Get hold of gentle iron (iron bisglycinate) and take it on alternate days. If your serum ferritin is low, ask about an iron infusion. A lot of hospitals will do this with excellent results.Epsom and Westminster hospitals in the UK have given infusions to RLS patients so if you are near them ask for a referral.

Annejende on this forum had low serum ferritin and a course of 3 infusions stopped her RLS.

Your GP needs to read up on RLS so point him in direction of the RLS UK main site. There is a help section for professionals.

Amitriptyline sent my RLS through the roof!

Good luck.

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Hi I have been taking amitripyline for about year now. I started off on 10 mg which is quite a low dosage and now I take on advise from my doctor 25 mg one or two at bedtime and I find that they do help to sleep but it takes time for the tablets to be effective . I was told by my GP that amitripyline as been in use for many years and that it was used as a mild antidepressant . I also take a 36mg pramiipexole in the evening. I want to gradually be weaned off these drugs but apparently it has to be done very gradually.

Hope this helps

Hoochy

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Wow ! Thank you all for the great advice 😊 I'm currently writing it all down so I can take all this information to my appointment . 👍

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My sympathies. I haven't tried many drugs for it at all but in the past I had temporary relief with Sinnemet but after the first month it didn't work any more. Dopermine was in it and some other depression drugs have given temporary and limited relief so I don't know if the cause of my rls is physical or emotional or both. The heat of this summer is even making my recently recorded remedy a bit hit or miss. Good luck with your attempts.

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They are highly sedative and if taken for a lengthy period can be

addictive. Most doctors say they are not,but then they haven't

taken them. Other thing,is,they are anti-depressants,don't see how

they will help RLS.

Regards,

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Well last night was the first night of taking the tablet , rls had started to rear it's ugly head so I took myself off to bed. I wouldn't say the tablet made it worse or calmed it but it did knock me out within the hour . I slept through for the first time in ages but woke up still tired and feeling a bit 'floaty' which is why I'm not a fan of taking medication . I don't like the feeling of 'not being with it '. I like a clear head . I was asleep by 10pm so they definitely work in the way of knocking you out so much and so quickly that you don't have time to agonize over rls 😄

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Well,Amitriptyline usually makes RLS worse. Y0u could try the range of recommended drugs, until one works for yo for a time, then try another. and so on. The relief for a few months is worth the bother. Try larger doses, if there are side effects, you have to decide for yourself the balance for you. Some of the recommended RLS drugs have side effects like obsessive behaviours, so monitor what you do, and have another do the same for you. If you like gambling on-line CANCEL your accounts before you even start!

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Well doctor tested my iron ,b12,diabetes and thyroid and he's got the results in and wants to see me . Never been called back before . I haven't taken the tablets either ...because I'm scared that it's gonna make it worse .

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Please report back after seeing your doctor. I was reading through your initial post and the replies again. And what struck me was your account of hair falling out big time, which makes me think of insufficient b-vitamins. And of course your dizziness etc with low iron. And both work together (b-vits and iron).

Don’t forget your notes and the downloads from the website when you go and see your doctor! Hope he sorts you out soon.

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Yes of course I will

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Well I got the results and I'm Anemic and low in B12 . I've been put on iron tablets and I have to have B12 injections . After I mentioned this conversation to the Doctor he said there were other medications I coukd try but, declined them until my b12 and iron is where it should be . I've also started exercising in the morni g and it's quite intense and I've not suffered severely with RLS at night . Maybe it could be a fluke but either way ive had some bloody good nights sleep this past week 😊

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Discolegs, that is hopeful news, as you will have onderstood. As -low- iron is the single most related factor to rls. See the Johns Hopkins RLS site. Thus hopeful in that resolving your anemia and low body stores of iron may resolve your rls. And various b vitamins are important co-factors in maintaining a healthy iron balance.

Having said thay, we can not warn you enough that getting your iron blood indicators to ‘normal’ levels is not enough to resolve the iron-insufficient-rls type. Especially ferritin, the indicator of the body store of iron, has to be well above normal, i.e. higher than 75 ng/l.

Good thing about the exercises, keep it up! I hope rls is really on its way out for you.

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My ferratin levels were fine but I think the low iron and b12 might be because of my diet , doctor knew I was a veggie before I confirmed it . I've had a b12 injection and I'm a week into taking the iron and I must say , it's lessened by half. It might be a temporary solution for a permanent problem but for now I'm so grateful .

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