RLS general chat

[kickoff2015]

I've had RLS since i was pregnant with my daughter and she is 37 now :(. I have breaks for a couple of weeks sometimes and then it starts again. Seems to be getting worse and is driving me mad. I get out of bed and stretch my legs - sometimes it works other times nothing and I lay there figgeting and in tears

[Kaarina Administrator]

Hi kickoff, I am sorry to read your posting. Fellow sufferers really do understand.

Have you visited the RLS-UK (rls-uk.org) website? There is useful information and help there.

Have you chatted to your GP about your RLS? Are you on any medication to help with the symptoms? We do find, that unfortunately many doctors do not know too much about this which is not too helpful. I am sure others will reply to your posting soon.

Kaarina

[annakalia in reply to Kaarina]

the rls-uk.org dosent seem to be working for me at the moment but this sight does there are lots of us who are suffering with it. do you know of anyone in your family that have it?

[beady3]

Sorry kickoff but this is the forum to help you,have you had any meds at all and have you been to the docs write back and we will all try to help. I have had rls for45yrs don't ever give up x

[Hidden]

There is lots you can try. If your RLS is still not every night yet. You can try co-codamol which you can get OTC. that might be enough to give you relief. Or if your RLS has become worse enough to keep you awake every night, then it usually means seeing your doctor to get a RLS med. Look at the RLS-UK website which has been given on here, if you are in the UK, which will give you alot of info. Or another website which is very good is rlshelp.org the treatment page gives a list of meds which can be used for RLS, it also gives lists of what meds to avoid + any food or drink, which for some of us can make things worse. Have you had a ferritin level test done by your doctor..? That is how our iron is stored, for RLSers the level needs to be 50-100. If below that, you may benefit from taking iron pills from your doctor. So, there is lots for you to try. Trying that first med may not suit you, may not work for you, so it can be trial and error. Most of us here have had to try alot of meds to get relief so we can get back to sleeping at night. Good luck..

[Hidden]

There are lots of people struggling with this with many nuggets of advice,may I suggest:

Opiods such as co-codamol. The OTC ones may be strong enough to help,MAY! I have found I need stronger opiods in order for them to be effective.

Cannabis illegal most places but can be effective depending on strain.

Kratom again there are legal issues but it appears to be quite a benign substance.

Dopamine Agonists - these can have great initial efficacy but watch for augmentation and rebound - I ended up with RLS in my back in arms after Miripexin.

Magnesium supplements have been touted as useful

Have you checked Iron and B12 & Foliate levels? Sometimes the haemoglobin looks good but an Iron profile shows up deficiencies.

Some exercise earlier in the day can be of use, (see NICE guidelines in UK), too late though and it can make it worse.

Hot baths/showers offer temporary relief which as we all know is better than nothing.

I find sometimes if I can keep my feet in cold water it helps, (maybe only being distracted by the cold water on my warm feet).

There is also the likes of Night Time Leg Calm from Natures Inventory - aroma therapy oils that are meant to help.

Also avoid caffeine, smoking and alcohol completely as these can all exacerbate the problem.

Good luck in finding a solution.

[Lindy14]

Hi Kickoff,

Have you had any help from your GP. I initially went to my GP to ask for some help only to be told that she could "only put me on Anti-Parkinson Drugs and" to go and find a solution myself.

I did try some things and the most effective was a Climsom mat for use in bed to keep the mattress cool so my legs didn't overheat. I wouldn't be without it now.

Later when this failed to work on its own I went back to the GP (luckily the first GP had retired) and the person I saw put me on roprinerole which worked for a few months. When I found this didn't work even at maximum dose the GP referred me to a neurologist who was very helpful.

I would think that the range of treatments available would be able to bring you something to help you so I'd recommend going to the GP and not taking any old nonsense.

The neurologist I saw said that nothing works indefinitely but with regular reviews they should be able to help you.

Let us know how you get on.

With regards,

Nurse (only because I seem to telling the doctors what to do!!)