Restless leg help

[Kentman58]

Hi iam Pete looking for ways to help with restless leg syndrome iam having s terrible time at the moment cant sleep at night it starts early evening and keeps me awake all night ..I have other health problems like diabetes, gallbladder stones waiting to be taken out and enlarged spleen..plus few other things. Please any tips on restless leg would help so much 😥

[Doversoul]

If you aren'tmedicating specifically for RLS, perhaps you should ask your GP for referral to a Neurologist to get confirmation that you have it.

Avoiding caffeine and limiting alcohol intake may help. I would suggest that at night if you keep moving /walking for (quite) a while you can take the edge of the RLS attack , possibly enough to get some sleep.

Also strongly recommend that you download the RLS UK Record sheet and use it to explain to GP/Neurologist the symptoms and adverse impact on your life. Good luck.

[Kentman58 in reply to Doversoul]

Thanks Doversoul already have been told by gp if enough and been prescribed diazepam 1 tablet I the evening have reduced any caffeine intake ..had it near on 20 years now but my diabetes is controlled but also been told restless leg is side effect of diabetes too ...but will go try see gp and see a neroglerist...thankyou

[Hidden]

Sorry to hear you're suffering this terrible syndrome.

Unfortunately, although you may be lucky, it's possibly a good idea to let you know that it's a very common experience for RLS sufferers to discover that their GPs (or even neurologist) are quite ignorant about how to treat RLS.

Hence it's really a good idea to find out as much about it as you can for yourself before seeing a GP. If you don't know much yourself you'll not be able to realise how ignorant a GP can be.

It may be of no great significance in your case, but it's possibly worthwhile you knowing that RLS can be primary (also known as idiopathic) or secondary.

Primary RLS is an inherited disposition and can run in families. It usually occurs at an earlier age, for some, in childhood. Secondary is where it's caused by some other underlying condition e.g. diabetes.

In some cases of secondary RLS, it can be treated by correcting the underlying condition. This isn't always possible. Diabetes can lead to peripheral neuropathy which is not easy to correct once its occurred.

When you do see a GP, the first thing that should be considered is blood tests for serum iron, transferrin, ferritin and haemoglobin. This is because iron deficiency is a major causative factor in RLS. Your GP may or may not know this. The key thing to look for is your ferritin level. If your ferritin is below 75ug/L then you may benefit from starting on an oral iron supplement.

Note that even if you don't have iron deficiency anaemia, this still applies. If you do have anaemia then iron is even more important. Also note that if your GP simply says that your ferritin is "OK" or "normal", it could be as little as 15ug/L, you need to know the number. 15ug/L is NOT OK for somebody with RLS.

Here's a link to some information about this

sciencedirect.com/science/a...

The second thing is that if you're taking any other medication at all, your GP should discuss if the medication is exacerbating your RLS. Many medications do make RLS worse, so if they can be, should be avoided. Unfortunately, your GP may not know this either.

Thirdly, if you're looking for some medication specifically for RLS, your GP has two options for "first line" treatment of RLS.

Please note that both ethically and legally before starting any treatment your GP should gain your "informed consent". This means that they have to explain the benefits and risk of any treatment as well as alternative options.

The two options available to GPs for first line treatment of RLS are either an "alpha 2 delta ligand" (α2δ) or a "dopamine agonist" (DA).

The α2δ are either pregabalin or gabapentin, the DAs are either pramipexole, ropinirole or rotigotine.

You should be given a choice, it would be unethical for a GP to only mention one of these.

NOTE : DAs although still recognised as a treatment for RLS in the UK, internationally, the DAs are no longer recommended as the first line treatment for RLS, the α2δs are. This is because these have significanlty less risk of major complications, augmentation or Impulse Control Disorder.

pubmed.ncbi.nlm.nih.gov/274...

The National Institute for Health and Care Excellence (NICE) publish evidence based information for guiding GPs on managing various conditions. One of these is RLS. The link below is to the NICE guidance on RLS. I suggest you familiarise yourself with it and if necessary you can refer your GP to it. They may have never read it!

cks.nice.org.uk/topics/rest...

Good luck and if you need any further information/support don't hesitiate to post again.

[Kentman58 in reply to Hidden]

Thankyou very much great information I am diabetic been 15 years ..and will definitely look into your info..thanks again very helpful 👍

[Joolsg in reply to Kentman58]

I agree with everything Manerva advises.

[Hidden in reply to Kentman58]

Just to say as I expect you know Diabetes can adversely affect kidney function which in itself can result in or worsen RLS and also mean you are given lower doses of tablets

[Smiler53]

Excellent advice from Manerva. Good luck with your next appointment.

[Renaul]

My GP prescribed Temgesic 200mcg at night when I asked her. She did not insist on me trying the other medications first or seeing a Neurologist. Not had a nights sleep in over 15 years.It has been miraculous. After 10 days I am symptom free and sleeping well.

If you read through other streams you will discover that all the other meds eventually stop helping and are difficult to stop.

[ijsgrandma]

I’m sorry you are experiencing worsened symptoms right now. I have tried just about every medication out there that they say helps RLS and have suffered the consequences of various side effects and augmentation (worsening of symptoms). I finally stopped them all which if you have read posts here at all you know can be awful. First, Manerva is right, you need to bring up your ferritin level to over or near 100. It didn’t get rid of my RLS but did lessen it so I try to take iron every other day. She is also right about doctors. I’ve been to 3 neurologists, 1 was even a motion specialist, and none helped. Just wanted to keep giving the standard meds that either made me worse or unbearably side effects. I gave up.

I don’t know where you live, but if in the US, try CBD. It takes my RLS completely away 90% of the time with no side effects. The only time it creeps in very mildly is when I can’t get to sleep right away which can be difficult at times.

I might have tried the Temgesic 200mcg, but find it difficult to get in the US for RLS. From what I hear, it would also help me get to sleep quickly which would be nice.

Good luck!

[Bruxelles in reply to ijsgrandma]

Hello, I have been up all night again, legs driving me mad. I was wondering what strength CBD oil you used and how many drops. I have tried it but it didn't seem to make any difference so just wondering if I should try again. I've tried everything (see my reply to Clarissa) and the only thing that seems to help a little is keeping my legs warm. How do you cope in the daytime? I am so tired!

[ijsgrandma in reply to Bruxelles]

I don’t know what happened. I responded once already and it’s not here. So sorry. I will try again. I didn’t like the oil because I could never get it right. Also bought locally and never seemed to work. I started using capsules from Lazarus Naturals online. I like them because they have all there products tested by a third party. I started with 25mg capsule 2 hrs before bed. That was a 1 1/2 yrs ago. Now I use 75mg. One thing nice about Lazarus is the give a 60% discount to military, vets and low income.

It’s the first thing that has worked without side effects.

As far as daytime RLS, I haven’t had any since I stopped Requip 2 yrs ago. You probably know that a lot of over the counter drugs can cause it too like Benadryl, sleep aids, many anti depressants and other decongestants.

Good luck. Hope this helps.

[Clarina123]

Hellohe

[Clarina123]

Hello, I too am at present walking the boards! I find a hot bath gives me relief for all of ten minutes! Hardly worth getting wet for, but that ten minutes means a lot. I have also started bread making, which helps to relieve symptoms whilst I concentrate on that. Any task seems to work in this direction. Even if you start jumping straight away afterwards, it does give some respite. Watching the tv in the evening is almost a no no. I am just starting on Gabapentin, which hopefully will begin to help soon. Good luck with your doctor. Don't be afraid to let him/her know how distressing this all is as lots of them haven't got a clue. I find it helps to read these letters, and the help and information is invaluable. Best wishes, you are not alone.

[Bruxelles in reply to Clarina123]

I too am up wondering What to do with myself and Longing for some sleep! I have been suffering with rls for about 3/4 yrs. Tried everything I could think of before finally going to a Neurologist who ended Up giving me a DA after trying an iron supplément which didn't work. Bad side effects with meds so stopped them as didn'y really relieve the rls either. After this 3rd visit to Neurologist who didn't seem that interested, I stopped meds and decided not to waste time as this man Didn't have a solution.

The only thing that helps me a bit is to keep my legs warm.

How do you cope with the exhaustion due to lack of sleep?

[Clarina123]

I am retired so it's not so much of an issue, particularly whilst in lockdown, as my social life is now zilch. I find I am usually more relaxed in the morning, and so try and catch up on sleep then. I neglect any chores until my legs start to jump. As no one comes in because of covid I am quite happy to sit in a mess whilst I can do so.