New to healthunlocked

Hi everyone, yippee, long last I've signed up. Looking forward to having a natter with you all about this horrible condition. Which I have suffered with every day for over over ten years now.

[Joolsg]

Welcome tinkiewink. Are you on any meds for your RLS?

[Hidden in reply to Joolsg]

Hello, at the moment I am on Tremadol 100mg once or twice a day, and several paraceatamol, I have in the past taken amatriptiline, repindarol, gabatentin and something else that I cannot remember, non of which had any effect on my Rls, two weeks ago following my frist appointment with a neurologist I was prescribed pregabilin,which I only managed 5 days on as I had terrible side effects, so I have a feeling they will try me on something that sounds like pram???? As I'm due to see them again soon. But the tremadol does not work like it used to, so I'm hopefully going to build up a list of the meds I see mentioned on here and take them to neuro as a suggestion, I'm pretty desperate so I will try anything.

[Joolsg in reply to Hidden]

Tramadol stopped working for me after about 5 weeks. What dose of pregabalin did you start on? Ideally you should start on 25mg and slowly increase every 3/4 days but I know most GPs just slap you straight on 100mg twice a day so more likely to experience side effects. You mention Rop...if you were on ropinirole, be careful about trying pramipexole as it is another dopamine agonist and may cause augmentation quicker.

Look up augmentation on here and also visit rls-uk.org and read through all available meds.

Good luck with appointment and maybe ask for blood test to check your ferritin levels which need to be above 75.

jools

[Hidden in reply to Joolsg]

Ahh no there's a point jools the pregabilin dosage was1 x 75mg once a day then to be increased on week 2 but I never made it past day 5 as I think falling down the stairs two days in a row, poking myself in my eye with a folk pouring drink down myself and falling of the toilet was enough to say maybe I better not take that drug! But like you say I should of been started on something less, I was given a ferritin test 5 weeks ago at the neurology dept apparantly that came back normal, however from reading rls facebook posts I see it should be anywhere between 75-100 and I'm sure I've read a gp will consider 25 normal, is that correct? So I shall question the actual figure when I return, not that I know what ferritin actually is. And yes I have seen the word argumentation mentioned a few times from scanning through here, so I shall have to look up what thats all about. The ropendirol was early last year I took it for 4 months then the gp stoped it as nothing was happening not sure of the dose though, I will have to learn to keep a diary, they were wery dark days for me and I just took what I was given, but now with the consultst a brain scan and a recent other health scare I'm trying to get completely on top of things so thankyou for your help

[Joolsg in reply to Hidden]

I know some people have very dramatic reactions to pregabalin so you are not alone. Most GPs consider serum ferritin of 12 normal. Maybe that's true for some ( I don't accept it's normal for anyone!!!) but for people with RLS 75 and above is the aim ( although not too high as that is bad as well).

Hope you get the help you need. It sounds like you have a lot going on health wise.

Take care,

Jools

[Bkc1777]

Welcome on board

Are you from U.K or USA? or anywhere else?

B.

[Hidden in reply to Bkc1777]

Hello I'm from the north of England

[NoMoRLS]

Welcome...you've found a great site for this dreaded affliction.

[magggzzz]

I used to work in a haematology lab and as far as I can remember a normal ferritin is anything between 15 and 200. However I have read on other sites that for someone with RLS it's better to keep it over 50. That depends on what you read though. I've also read 75 and 100. Let's just say a lot higher than your doctor would consider normal.

[Hidden in reply to magggzzz]

thankyou I will remember that when I next see somebody

[involuntarydancer]

Hi twinkiewink and welcome'

You manage to sound remarkably lively and upbeat for someone who has clearly been around the block with their RLS.

You will pick up a lot of information not just about the condition but about all the meds from the posts on here. As you seem to be between medications at the moment it is a very good time to educate yourself.

You sound like someone who might respond to a cocktail of different medications all taken at a low-ish dose. This worked well for me until my RLS gradually improved as I got my iron levels higher. Many GPs are remarkably reluctant to go down this route - I'm not sure why but it could be just that they don't know all that much about the condition. I worked a regime out for myself using the various drugs my GP and consultant were prepared to prescribe.

Keep us posted as to how you get on.

[Hidden in reply to involuntarydancer]

Hello involuntary dance, I try to be, but believe me during rls moments and for several hours later in horrid. I'm just pleased I've found this site, it all seems about sharing experiences so others can try new approaches, and as I've never met anyone with rls before, this is just what I need right now,

[minuts]

It's hard to keep track of your situation ,trying this ,that etc. I'm guilty of not keeping a journal relying on my wife (God bless her,very difficult for:caregivers ) for chronology of events I have trouble organizing in my weary brain. You must be your best advocate so arm yourself for battle with thougtful decisions and a Dr. that is versed in this specific area. It can be a search to reach the best results but after MANYrx I have found what works best for me simply by trial and error and trying to keep track of each step on the way hopfully to progress to a point of predictable relief. Hang in there,I still suffer this disease but things can get better!