I've had RLS for about 13 years, and as time went on it became worse. I'd tried every med they suggested, and was eventually referred to a neurologist as it had become so bad. Not only was i getting the chronic shaking of the legs, but also getting violent arm, shoulder and neck spasms. I was prescribed the Rotigotine patch, and for a couple of years it was simply a miracle. The shakes became a thing of the past.
I had also been on anti-depressants, and a change to these meds was made about 3 weeks ago. Like a switch, the patches completely stopped working. Instantly i was thrown back to the horrific nights.
I was told to increase the Rotigotine from 2mg to 3mg. This did nothing.
My neurologist suggested 4mg might help. This made the pain worse.
My GP changed my anti-depressant to Mirtazapine as this also makes you sleepy. It did make me sleepy but had no effect on the RLS at all.
I asked for Oxycodone, which they did not want to prescribe. I took 15mg and went to sleep within 30mins.
Not wanting to keep me on Oxy i was told to double the Metazapine dose from 25mg to 50mg. Yep super dozy, but no effect on the legs. Took 15mg of Oxy and got my sleep.
I have about 3 days of Oxy left, and GP says there is no more. What the heck can i do? As each day passes the dread and despair i feel is increasing.
Being told not to think about it, or try to be positive can only come from people who have no idea what RLS can do to you.
I told me wife it's like the legs are trying to turn to stone, and shaking them stops this. Its fighting a losing battle.
I've been through the times of no sleep for 36hours, and it was horrible.
Any suggestions would be great.
My biggest fear is my job, which i love. I'm an engineer and drive a lot. Not sure what effect Oxy has 12 hours after taking it. (Only take at night)
Written by
Hitechwreck
To view profiles and participate in discussions please or .
If you think your med advisors might take direction , you could look up Dr Mark Buchfurer of rlshelp.org ( its the southern California group) you could search oxy in that or email him and detail your history exactly ( rates and timing). He will reply and you could print that out for your med team.??
It might be also useful to emphasise how desperate you are feeling to your dr even to the extent of life ending scenarios. That might put some pressure on them.
I'm on Oxycontin 10mg morning and evening. That controls rls completely and has no effect on motor skills- I drive and work chainsaws effectively.
Hope this helps somewhat
Good luck.
Otherwise you could pm Raffs re using kratom or other drugs that might help.
Are you in the UK? If so, print off the NICE guidelines on RLS and Targinact. This is oxycodone and naloxone and it's licensed and specifically indicated by NICE as a treatment for RLS so a UK GP can't refuse it. Bear in mind most GP's have no idea that opiates are extremely helpful for RLS and you won't become addicted/tolerant etc.
Really hope they listen to you and prescribe the drugs recommended by NICE,
Good luck
Jools
Hi, anti-depressants and RLS dont go well together and makes RLS worse for the majority of people. What was your anti-depressant before it got changed and why was it changed. Increasing any RLS med when you are taking a anti-d will not help as you have found out. Are you still on the changed anti-d right now, and are you still using the patch and what dose is that now.
I was on Mertazipan and this actually helped with the sleeping. Unfortunately it had affected my libido big time, so a GP changed my Anti depressent to Sertraline. This is where the problem seemed to start.
Well some good news. My wife phoned my GP, and explained that she wasn't prepared to watch me suffer. He has prescribed a further 3 weeks, in which time i hope i am able to see my neurologist again. Have the information from NICE will come in very handy.
Benadryl. This may sound odd, but I had a lot of RLS problems when I was pregnant and my doctor had me take a Benadryl at night. And to this day, that's what I do. When I start to feel the symptoms come on, I just take one Benadryl and if that doesn't get rid of them in a few minutes I take a second Benadryl.
Yes it does sound odd to take Benadryl, as its considered a no no for RLSers. But i guess there are exceptions to the rule.
I find an almost excruciatingly hot bath helps. Good luck!
Lot of great advice here.
As mentioned Kratom - it is a god send. I have whole body RLS like yourself and it just quietens the whole thing. It's still getting through in the UK at the moment so anyone who uses it stock up while the going is good!
It is much safer and effective than the oxy in my opinion and the only reason I am not using it full time is because I am being held reasonably well on Targinact 20/10, (thats 20mg of Oxy morning and night) and the Neupro patch 2mg/24hr. Even with those high doses I still ahve bad nights and like a ghost feeling of restlessness in my spine if you can understand that!
If you are able to source cannabis it too can be very effective and is safe bar the legal aspect. It can be quite strain specific - some work some won't but at least the trial and error isn't as unpleasant as it is with the anti-depressants.
My GP tried me on about 5 or 6 different anti-depressants and each one made the RLS unbearable. I was on Mirtazapine too and as with the others sent me right up the left after a few days.
What I haven't seen mentioned is exercise and yoga both excellent at lifting and maintaining the mood and distracting from the RLS. I find this woman less annoying that most and her exercises seem very good and suit me:
Meditation is also very important in my opinion mind you it can be very hard to do when your body wont even stay still. If that's the case try mindfulness pick an activity you really enjoy and takes concentration and do that putting all your focus on the activity. It can be a very good break from the low mood and negative thinking.
I've had low mood at various periods in my life due to life events and the RLS but never experienced depression until this year and the importance of doing everything you can to avoid/change it. I've developed ME too and it leaves me unable to engage in a lot of activities that I used to use to ease or distract from the RLS, however I can assure you that the stiff I've mentioned will all work at lifting and keeping the mood lifted.
Also diet is important - low vitamin D which many in the likes of Ireland and the UK and along that latitude and above have can cause low mood. Eating high fatty convenience and take out foods, (which is easier to go for for RLS suffers who are chronically exhausted) can depress a person to so. And finally talk. Get a good complain about how shitty things are and then talk about how you are going to improve things and how they will get better, (reinforce positive health every time you can and that goes for the RLS too). Feel free to PM me any time.
I am luckier than most as I can tolerate many different antidepressants but have been an insomniac for years, long before I started to suffer with rls. However, thanks to the marvellous advice to be found on this site I changed to trazodone as it is an anti- depressant well tolerated by rls sufferers and I now sleep better than I have since my teens and that was when dinosaurs domed the earth.
Hitechwrek good luck and hope you get some useful advice on here. It is good to know that there is help and advice out there, although sad to know that so many others are suffering too. Take care.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Melatonin 
Coming off pramipexole
Please Help !!!!!
How to escape Augmentation?
Suggestions to alleviate symptoms of RLS
