Hello I have been stalking this site for a while only just joined.

[Tonkaman]

Hi ya all I am writing with anticipation I am at a loss really its the sleep deprevation that rls brings it gets into every part of life. I am sure you are all too aware. I haven't had much help with GP 's but lately I have been seeing a mental health nurse and hopefully things will get better soon not sure if I have the energy or the will. Sorry about the downer.

[Pippins2]

Hi and welcome.

Could you give us some information such as what you take foryour RLS and what you have tried in the past?

Do you take any medications for anything else as many can make RLS much worse? x

[4370mouse in reply to Pippins2]

Right now I am taking ropinirole but I'm looking for a way to wean myself off of it because ever since I've been taking it my head itches so so bad fact it does work for restless leg syndrome

[Tonkaman in reply to Pippins2]

Thanks. I have tried to reply but it takes a little to concentrate. X

[nightdancer]

Well, you say you have not had good luck with GP's. A mental health nurse can help you deal with sleep deprivation, BUT, RLS is neurological, so a sleep doctor or neurologist would be a better help for you. Are you taking any meds for RLS or anything else. You mentioned a mental health nurse. Are you on any antidepressants? The SSRI's and tricyclic ones are high up on the "no no" list, and can either cause RLS or make it a LOT worse for 99% of us. So, a little more info would help us to help you.

[Tonkaman in reply to nightdancer]

Thank you for your reply, I will add more but this is my 5th night in a row of no sleep I am fińding it hard to concentrate. I am currently walking around my house in the dark alone it doesn't hurt when I walk. It's 20past 2 I started my bedtime routine at 10 with a hot bath. I only have a mental health nurse because I think I am currently being mis diagnosed again it wasn't until I found this site the other night that I was sure. I have done different levels of codeine, tramadol and gabapentin at different times depending which Dr is on. It really is a mess and I am not certain I want to keep fighting. You are right about the anti depressants they are proper leg shakers. Thanks again

[involuntarydancer]

Sounds like you may be under-medicating. Have you checked your serum ferritin levels? Current thinking is they should be over 100. Raising iron levels is surprisingly effective for the vast majority of sufferers - though many still need to take medication also.

If you do get them tested be sure to ask for the actual figure - most GP surgeries will just tell you they are 'fine'. Fine for rls is totally different from the general public.

Depending on where you live you could also try Kratom (it's not legal everywhere). It is very effective against rls urge to move symptoms and not quite as alerting or dependency inducing as the more potent opioids.

[Tonkaman in reply to involuntarydancer]

Thank you so much for all the information I think I fell asleep about 6ish reading these went back yrs got 2 hrs. Which is 2 more than the night before. I recently had a blood test which put me on vitamin d. I don't think I have ever had a doc that is aware of rls. But it's not all there fault I have a chequered mental health problems but I am starting to believe that all the mental health issues have come through sleep deprevation brought on by rls. I would go complain to the Dr but I wouldn't say restless I say something like flicky hands and legs when trying to get to sleep. I have phoned up for a appointment but I looking at over a week distraction can only do so much.

[extremenightwalker in reply to Tonkaman]

Doctors are aware of RLS but getting them to take us seriously about the severity of our secondary problems is almost impossible. Restless Legs, hmmmmm sounds a minor issue, yes if all we had was jumpy legs, but not one of us sufferers with just jumpiness, countless sleepness pain, well as i keep saying the list is endless, how many doctors would be able to hold down their job if they suffered sleep deprivation would their judgments be impaired. keep at them to find the best course for you and your other ailments. dont give up fighting for your doctor to take it and you seriously. stay safe

[Tonkaman in reply to extremenightwalker]

Thanks scrambleing around roofs all day gets hard. I have to take time off That gets the income which cause stress and anxiety and the doc will say try a warm bath with lavender honestly it makes me want to head for Bempton cliffs. After30yrs of this I have tried a few warm baths. I had to go self employed 20yrs ago as my issue made me unemployable you can't expect a employer to put up with the disruption. Thanks again for your support.

[extremenightwalker]

hi tonkaman, totally agree, its deadlier than the RLS

[Neil46]

Hi Tonkaman, when I was badly sleep deprived I could not concentrate on anything so I became very erratic. I must ask did you persist on the tablets you were prescribed or did you want to change them after a few days if they didn't work? Some of the meds take a while to build up in the body before they do anything at all. I imagine you have tried everything in the years you have suffered. Perhaps LDN (Low Dose Naltrexone) might be an alternative for you - just a thought. I really hope you find the cure for you and the sleep you need

Regards

Neil

[Hidden]

Hey Tonkaman!

Sleep deprivation is pure hell!! I know because I go through it too. My deep sleep is practically non-existent, so even on nights when I can sleep I don't sleep well. I am sick of it! One cannot concentrate, everything is stressful, one gets irritated, EVERYTHING takes effort, and wanting to end it all begins to sound pretty good. I am barely surviving myself, so believe me when I say I hear you loud and clear!

How is your bedroom environment? Do you have blackout shades so you can get it completely dark? Unfortunately, I don't (just have blinds in my rental apartment), so I started sleeping with a mask over my eyes. I also bought an air purifier today for the bedroom. Unfortunately I won't have it until the end of next week, but I can keep you posted on how it helps my sleep if you'd like. Another thing I've been doing is downloading sleep mediations, binaural beats, and sleep hypnosis sessions to my mp3 player. Getting into a calming routine right before bed can do a lot.

Sending the sleep Gods yourway,