rls

[ohtogetagoodsleep]

after suffering in silence with rls for many years, i recently went to doctors, and was prescribed with, amitriptyline. has anyone any experience with this as a "cure".

[Leelee49]

Hi, sadly there is no ‘cure’ only treatments, and if I recall, amitripyline is 1 treatment to avoid. If you type it in the search box, there should be info about it.

[Kaarina Administrator in reply to Leelee49]

As Leelee points out, amitriptyline is one of the medications to avoid. Very few people suffering with RLS can get away with taking this medication without making symptoms much worse.

rls-uk.org/treatment/

[ohtogetagoodsleep in reply to Kaarina]

Thank You, i have decided not to take this medication on the advice of the real experts, that is fellow sufferers.

[ohtogetagoodsleep in reply to Leelee49]

Thank You.

[Madlegs1]

Sadly, many doctors think that antihistamines will get you to sleep, and antidepressants will make you go away.

THEY ARE WRONG.

[ohtogetagoodsleep in reply to Madlegs1]

Thanks.

[involuntarydancer]

There are other possible treatments to amitryptiline so don't give up.

First, raising iron levels is helpful to many so you should ask your GP to do a serum ferritin test. Make sure you get the actual number not just that you are 'normal' which can be as low as 20 whereas rls sufferers should be looking to get the figure to well over 100. Depending on the result of the test you should introduce oral iron.

Secondly, many people find that introducing restrictions to diet can help. Reducing sugar, dairy and/or gluten has helped many as has veganism.

Thirdly, there are all sorts of other recommended non-pharmaceutical options. Magnesium (either supplement or epsom salts baths) helps many. Stretching exercises can also be helpful. There are many other suggestions dotted throughout this site.

Fourthly, there are prescription drugs: anti-convulsants such as pregabalin (lyrica) or gabapentin; dopamine agonists such as ropinerole, pramipexole/mirapexin or rotigotine/neupro (often used as a drug of first resort but actually not recommended now by experts as, although they are very effective at first, they ultimately cause problems by augmenting the condition); the 'azepams' work for some and finally the opioids such as tramadol or oxycontin which work well but are considered by many doctors as a last resort (if they are prepared to prescribe them at all).

Unfortunately, the almost universal experience of sufferers is that the medical profession tends to be very inadequately informed at best and it is necessary for us to develop our own expertise in this area. The lucky ones are those whose doctors are prepared to listen to us. Others have to put up with ignorant treatment which occasionally actually exacerbates the condition (which has happened in your case).

[involuntarydancer]

It might be worth trying the amitryptiline for one night. I have heard of one or two people who actually found it helpful but if, as is VERY likely, it makes the rls worse, you could go back to your GP with that information and ask for a serum ferritin test. Raising iron on its own works for many. But even if that is insufficient you could try the anti-convulsants - ideally pregabalin (lyrica). You would do well to resist the dopamine agonists, which are likely to be the next suggestion by your GP, or at least do a lot of research yourself before trying them.

[ohtogetagoodsleep in reply to involuntarydancer]

thank you, also dr. suggested that i drink tonic water (quinine) nightly.

[LotteM in reply to ohtogetagoodsleep]

Hm. You may want to think twice before following up on that suggestion. For one, it has been shown many years ago that quinine is not helpful for RLS. Two, there is very very little quinine in a glass of tonic water. Three, on the contrary, there is a lot of sugar or artificial sweetener in tonic water (or any soft drink), and quite a few people find both these things worsen their RLS.

It appears to me your doctor doesn’t know much about effective treatments for RLS. Unfortunately, that is true for most medical doctors, even specialist ones.

[involuntarydancer in reply to LotteM]

The wonder is he didn’t suggest putting a bar of soap in the bed.

[JakeRLS in reply to involuntarydancer]

As odd as it sounds, I tried the lavender soap in the foot of my bed on the suggestion of a bossy sister. The first night it seemed to work, much to my shock and maybe even dismay. The second and third, no such luck. So, my sister thought I must have used cheap soap.

[involuntarydancer in reply to JakeRLS]

In spite of the good first night I would suggest you would get better value if you threw your money into a wishing well and hoped for an improvement in your rls than if you invested in more costly soap.

[JakeRLS in reply to JakeRLS]

I know. I thought it was a quack cure to begin with, but like a sucker I tried it anyway

[Kimdin]

No I don’t feel there is an actual cure in my experience at this point anyway... that medicine will help you sleep probably and hopefully your dose is very small or it’s possible to be groggy in the morning

[Graham3196]

I have sent a list of things to try

[JakeRLS]

I'm only on week 4 of my experiment with Kratom, but so far I'm over the moon. I mix the powder form and get immediate relief in about a half hour. Seems to last about 4 hours, .. (fingers crossed).