I’m struggling to cope with this...

[loops12]

Hi, I’ve just joined this forum, I don’t know anyone else who has this condition so I have nobody to talk with. I have suffered on and off with rls, usually when withdrawing from pain meds after surgery. It’s different this time, I haven’t had surgery. And it’s not just in my legs it’s everywhere, my arms, my back, my neck. The flare up I had the other day was the worst I have ever experienced. I am on several different medications for chronic pain and I take Sifrol when I get rls at night. I’ve had it in my arms before but never throughout my whole body and never for as long, it lasted for hours, from morning into evening. My doc seems at a loss as to what to do and I really am struggling with this. 😢

[Madlegs1]

Would you research "rls augmentation" either on Google or this site- to see if that's what's going on. Depending on your Sifrol dose and how long you've been on it , I would say that's where you're coming from.

rlshelp.org

is a good site to peruse.

[loops12 in reply to Madlegs1]

Thank you for replying. This makes sense. I am on a low dose of sifrol and only take it when I need to. I was told 18 months ago that I can’t have any more surgery on my lower back, I had 3 surgeries over 8 years. I had been on OxyContin 120mg pd and Pregabalin 300mg pd with Endone as needed. After being told that pain management was my only option now I was taken off OxyContin and put into Palexia 500mg pd, Norflex 200mg pd, Pregabalin 300mg pd and Cymbalta 60mg pd. Up until a couple of months ago my rls had settled down, now it’s like nothing I’ve ever had....The flare up I had would not stop...I took double doses of all my meds, I know it was stupid and dangerous but at the time I didn’t care, I just wanted to make it stop. 😔 so maybe the pregabalin is the problem? I’ve been on the same dose for maybe 6 months? Thank you so much, I had not heard of augmentation before.

[Madlegs1 in reply to loops12]

I don't know your exact timeflow for all that medication- but coming off that dosage of oxycontin would result in serious withdrawal symptoms- the chief of qhich would be restless legs - all over - plus a lot of other unpleasant feelings.

You need to get on a pain management situation that will professionally manage your pain. This does not seem to be happening at present.

I see no reason why you shouldn't continue on a low dose oxycontin to manage back pain and rls.

This is exactly my situation. Rods and screws in spine- oxycontin 10 ×2 a day + oxynorm 5 for break through.

Luckily I have been classed as "opiate responsible " meaning I can be trusted not to abuse them!😄

Hopefully you can get this sorted- where you suffer chronic pain - you should have a good case for the course I have outlined above.

I will try to get you a link to a paper by Buchfuerer et al on long term use of opiates for rls treatment.

Cheers.

[Madlegs1 in reply to Madlegs1]

The Appropriate Use of Opioids in the

Treatment of Refractory Restless Legs Syndrome

Michael H. Silber, MBChB; Philip M. Becker, MD; Mark J. Buchfuhrer, MD;

Christopher J. Earley, MBBCh, PhD; William G. Ondo, MD; Arthur S. Walters, MD;

and John W. Winkelman, MD, PhD; for the Scientific and Medical Advisory Board,

Restless Legs Syndrome Foundation

Abstract

Restless legs syndrome (RLS) is a distinct disorder, differing from chronic pain in many ways. Refractory

RLS is characterized by unresponsiveness to dopamine agonists or alpha-2-delta ligands due to inadequate

efficacy, augmentation, or adverse effects. This may result in severely impaired quality of life, profound

insomnia, and suicidal depression. Opioid therapy is a mainstay in the management of these patients. This

article summarizes the basic science and clinical evidence in support of their use, including the positive

result of a large controlled multicenter study of 306 subjects, and outlines an approach to their use in

clinical practice. Treatable explanations for RLS refractoriness, such as low iron stores, and other thera-

peutic options, such as combination therapy, should be considered before prescribing opioids. The agents

most commonly used are oxycodone and methadone, but tramadol, codeine, morphine, and hydrocodone

can also be considered. Controlled-release medication should be used for evening dosage and short-acting

drugs, if needed, during the day. Effective doses are considerably lower than used for chronic pain

(oxycodone 10-30 mg daily; methadone 5-20 mg daily) and the risk of opioid use disorder is relatively

low. However, sensible precautions should be undertaken, including assessing opioid risk with standard

questionnaires, using an opioid contract, using urine drug screens, consulting state prescription drug

monitoring programs, and frequent reevaluation of effectiveness and side effects. Opioid use in selected

patients with refractory RLS may be life-transforming with favorable risk-benefit ratio.

ª 2017 Mayo Foundation for Medical Education and Research n Mayo Clin Proc. 2018;93(1):59-67

[Madlegs1 in reply to Madlegs1]

You could print this out and take with you to appropriate Health Professionals.

Cheers.

[loops12 in reply to Madlegs1]

I will, thanks so much! 👍🏻

[Jumpey in reply to Madlegs1]

You are so supportive Madlegs. i applaud you.xx

[loops12 in reply to Madlegs1]

I did a fairly slow withdrawal from OxyContin, I was told that the dose I was taking was high risk for accidental overdose and I was having some pretty severe mental health issues due to having to stop working and fighting with Centrelink for a disability assessment. I am usually well behaved with my meds but I can see why they were a little worried. The Palexia is supposed to be a replacement for OxyContin. This combination of meds is probably the best I’ve been on for pain relief, unfortunately it’s taking its toll mentally. I have been on 2 pain management plans with 2 different pain clinics but neither offered anything more than medication and ridiculously expensive psychologists.

I am starting a plan with an exercise physiologist soon for pain and rls, hopefully this will improve my situation. Thanks so much for time and input, it’s nice to talk with people who “get it”.

Cheers😊

[Hidden in reply to Madlegs1]

Hi Madlegs - How does one get designated as "Opiate responsible" and is that just a UK thing? I had never heard of it before... Thanks

[Madlegs1 in reply to Hidden]

Oh boy!!!!

I don't think there is an official designation as such.

When I asked my GP ( local doctor) for a change in opiate medication , she wouldn't touch it. I had to pay big money to go to a pain consultant who then wrote a letter to my doctor approving such changes. Included in the letter was the phrase " patient may be considered opioid/ opiate responsible:. I was very chuffed!!

My history included coming off post operative Fentanyl over 18 months , without any help from hospitals or the medical profession. So -- I was on strong moral ground.

Hopefully people in similar situations can make the same case.

Cheers.

[Hidden in reply to Madlegs1]

Ah - Good - I know my has designated me the same way, but I didn't know if that was a real thing - ha ha. Thanks and good work - you should be chuffed!

[Kaarina Administrator]

You may find this link helpful:

sleepreviewmag.com/2015/02/...

healthunlocked.com/rlsuk/po... This was posted by Pippins2, a forum member, a year or so ago:

[loops12 in reply to Kaarina]

Thank you so much Kaarina. It’s a great help knowing that I’m not going crazy! I guess I need to talk to my doctor again because until now every time this happens I have had my meds increased.... Thanks again 👍🏻😊

[Kaarina Administrator in reply to loops12]

You are most welcome. You are not going crazy. I definitely think you should have a chat with your doctor about augmentation. You now know more than him about this particular subject.

[martino in reply to Kaarina]

el.elsevierhealth.com/wf/cl...

Hi Kaarina

I have been saving this info for my own meeting next month with my Neurologist. Not sure if it is the same info you have referred to but thought I would send it to you Justin case. The neurologist wants to take me off Tramulief which I find very effective

[Nannarls]

Up until I joined this forum, I didnt know it was possible to get RLS symptoms in other parts of the body and you certainly have my sympathy as Leg manifestation is bad enough for me. I dont have prescribed meds for mine as my Drs just look at me baffled when I mention it- so Ive self medicated over the years to be able to sleep but then need the dose upped to get the sleep I need. Id suggest reading other posts to see if there is any info that you can use. We are all different in the things that cause this dreadful maddening condition. Also start an RLS diary with everything in it... sleep quality, exercise, sitting times, food, meds, anxiety levels, the time foods are ingested before bedtime (as sugar before bed will get me kicking for hrs). Good luck

[loops12 in reply to Nannarls]

I’ve spent all night trawling around the internet, I’m so glad I came across this site. There seems to be very little help here, I’m in Australia, I have a good dr who is willing to research but it’s rather slow moving which has led me to self medicate as well. A diary is a good idea, and changing my habits also. I us d to drink a fair bit of alcohol, not a problem amount, just a weekend party animal that needed to grow up! Luckily the meds I’m on have changed my tastes somehow and I very rarely dink at all anymore. My diet is atrocious as meds have also turned me off of eating! And I am still smoking!😬 This is something I know doesn’t help, it’s been hard to quit, I am on permanent disability now because of my back so I have a lot of time on my hands. Coffee and nicotine have been my constant companions for the last 18 months. First, a diary, then seeing it in writing might shame me into making some changes! Thank you for taking the time to reply to me. 😊

[Graham3196 in reply to loops12]

Hi Loops12

You are having a rough time with multiple problems

I am lucky because my RLS, which has been a problem for about 60 years is almost completely dependent on what I eat. So all I have to do is stick to a fairly restrictive diet and I can sleep most nights. Keeping a diary is the only way I can stay on the straight and narrow. Its not just so I can see where I went wrong after a bout with the enemy but knowing that I have to write down that I have been weak willed and stupid. Not that I have to admit it to anyone else but me - no one else cares - but just the act of writing it down and having to read that I ate too much butter or "just one plate of ice cream." Its a great intimidator.

Incidentally I am on a basic FODMAP diet with additional exclusions of gluten and lactose.

I can send you details if you are interested.

Good Luck

Cheers

Graham

[loops12 in reply to Graham3196]

Hi Graham,

How did you find out what causes your bouts? I had been going not too bad until last Sat, then had the most horrendous bout I’ve ever had. Now, I’ve been up all night again(I’m in Australia so it’s 5.30am). I’m trying to figure out a common thing but I don’t know?! I only started a diary yesterday...I would be interested to see if your diet is something I could stick to, I’m a terrible eater just now, all the pain meds leave me with no appetite.

Thank you

loops

[Nannarls in reply to loops12]

I hope it goes well. Dont be too hard on yourself as Ive found anxiety can trigger my rls. I had a sweet drink last night, later than my usual self imposed cut off time as i had a visitor and took a gamble. It didnt work and I had 2 serious bouts of rls during the night BUT a few hrs in the middle when I slept... Humans are gamblers and we hope we can get away with stuff. Learn your body and learn your mind. Sometimes I have to disassociate from myself and become a caring BUT stern mother to myself as the "ME CHILD" wants what it wants and right now... God Bless and I hope you find your 'cause a effect' triggers soon.

[loops12 in reply to Nannarls]

Being the “stern mother” sounds like something I will need to do too!

Anxiety has become a recent issue for me, when I started taking Cymbalta I could barely string a sentence and simple tasks became so much harder, the frustration would send me into panic attacks(also a new thing).

I feel much calmer now after finding this group, everyone has been so lovely, I think most people here have it so much worse than I do yet you all take time out of your day to help others, it’s really very much appreciated!

[Madlegs1]

Sounds like you've had a lot to cope with. And that you are meeting it head on and with spirit.

I'm sure you'll turn it around - you've made a good start- just take it a day at a time.

All the best.

[Jumpey]

Madlegs has said it all.Just wanted to send you some love and good wishes for some healing.xx

[loops12 in reply to Jumpey]

Thank you so much! ❤️

[Kells22]

Have you been referred to a neurologist?

[loops12 in reply to Kells22]

Hi Kells,

I haven’t yet, I am going to ask my doc for a referral though.

[Kells22 in reply to loops12]

Definitely. I have a referral and have an app on the 10th April. There is a few different meds you can ask the gp for.

[loops12 in reply to Kells22]

My doc only offered Sifrol at increasing doses but I’m learning lots on here! Now I’m a bit more confident to ask my doc to look at what options I might have. Good luck with your app!

[Kells22 in reply to loops12]

I think with this awful condition,we have to know what we’re dealing with when we see the gp,because some gp’s don’t have a lot of knowledge on it. I hope you get things sorted and thank you.

[Fredanderson]

Try Tramadol, its very effective

[loops12 in reply to Fredanderson]

I am on Palexia(Tapentadol) I think this is the same?

[Fredanderson]

Try Tramadol, its very effective

[Casinogoer]

What type of doctor are you seeing about the rls? I have had it for over 24 years and a while back, it started in my arms. I see a neurologist and a hematologist. They claim that the ferritin levels in the brain have something to do with rls. I disagree. My ferritin levels are high and I still get rls. Dr. Early, who is an authority on rls says methadone is the best treatment. I have tried that and the side affects were too difficult for me to handle. RLS is one of those health problems that seems to be hard for any doctor to treat. Nothing works for everyone and it is hit and miss in trying different drugs. I feel your pain, believe me. My children and husband have watched me suffer with it and they had a hard time watching me go through it. Sometimes a very warm bath would help me. You might want to try that. My husband took me to a casino where the bright lights and all the noise took my mind off of the rls. Good luck, I wish there were other ways to help you. Doris

[loops12 in reply to Casinogoer]

Thanks so much for the tips Doris! I’ll try anything..it’s been such a long night again 😔 I was sent for a sleep study when I first complained to my doc. I was prescribed low dose sifrol. I had had back surgery and was withdrawing from OxyContin and Lyrica. This happened after each of 3 surgeries. But now it just happens. I am starting a diary and will ask my doc for a referral to a neurologist. I’ve had some great advice on here, the relief to find people who “get it” is great. My partner tries hard to be patient and understanding but it’s not quite the same.

loops

[involuntarydancer]

I note that Doris disagrees but for many raising serum ferritin levels does have a positive impact on their rls. It is worth getting a serum ferritin test (simple test at your GP) and if the levels are low (make sure they give you the actual figure, they very often tell you merely that you are ‘normal’ - RLS sufferers have a different normal - US experts recommend getting levels to over 100) you could start taking oral iron.

I know it is not what you want to hear but there are those who say that smoking worsens rls. Also worth knowing that for many alcohol can bring on an attack. In fact generally it is worth checking the list of counter-indicated substances to make sure you are not taking something (eg benedryl) that is inadvertently exacerbating your symptoms.

I hope you get your symptoms under control soon.

[loops12]

I do need to hear the stuff I’m doing that’s not helping! If it shames me into quitting that’s totally a good thing. Lol

I have an app with the doc and I’ve started a list of the things I want her to check thanks to all the advice I’m getting on here. I’m also going to ask for a referral to a neurologist. I’ve started a diary of what I’m eating and drinking, sleep or lack of and times when my symptoms are worse and the other weird things that seem to be happening.. not sure if they are connected or not but I’m recording it anyway.

[Kells22]

Have you seen a neurological? I’m seeing on neurologist soon and have been given Dihydrocodeine by my gp. I was on co codamol for years until it stopped working. Also,get your vit d checked. Won’t make rls better but I believe it makes the symptoms of rls worse. I have had it in my arms also. It’s awful!!

[loops12 in reply to Kells22]

I’m waiting for a referral from my doc. I’ll be getting blood tests done too. I thought it was bad in my legs but both is pretty awful! It’s hard to get my GP to take it seriously but I’m going in armed with a lot of info this time so fingers crossed..

[involuntarydancer in reply to loops12]

Loops, did Your worsened symptoms coincide with the change around in your pain management meds? Most of the ones you list should help rls also but I have a feeling cymbalta can exacerbate Rls in some. It might be worth researching that.

[loops12 in reply to involuntarydancer]

I haven’t had any change in my meds, I’ve been on Cymbalta for around 6 months, I don’t feel like it’s working as it was.. I keep getting symptoms like I’m withdrawing from something? Mad zaps in my head, insomnia, irritation.. All my other meds I’ve been on for about 18 months in increasing doses. I’ve been at maximum dose for about 9 months..

[involuntarydancer in reply to loops12]

It sounds like it might be related to one or more of your medications. I would suggest that you need to insist that your doctor takes this more seriously. It sounds miserable.

[Chickapea]

Hello loops12! Be sure you’re taking the tapentadol when you are supposed to. It is not a take as needed drug. Tramadol and tapentadol are not the same. Don’t drink ever on tapentadol. Ask if you can take the extended release version of tapentadol. You appear to be doing the right things in preparation for you doctor’s appointment . You might want to get of nicotine. Use ice on your legs when restless. Remember to put a towel between you and the ice. Oh sorry my kitty is calling me from the kitchen. Go to go.

[loops12 in reply to Chickapea]

Hi Chickapea! Sorry for the slow reply, it’s been a rough few days! I mostly stick to using my meds as I’m supposed to, although I have taken extra if I’m having a really bad day with pain. I am on the SR 250mg’s. I know I need to quit smoking.. I’m down to 5 or 6 a day so I’m getting there. Thanks for the tip to use ice, I haven’t tried that yet. 😊