hi, I have been suffering from rls and also in my arms, I have been sleeping on the sofa for almost 2 years because of interrupting my husbands sleep, I can’t seem to get the doctor to take me seriously, I am on gabapentin and various medications for severe back pain after an operation to remove a slipped disc damaged my root nerve, I was wondering if gabapentin can make rls worse, how do I get a doctor to help me and take it seriously as my whole life seems to be going downhill with lack of sleep and pain, my relationship is at an all time low and don’t know how much more I can deal with, I am also on duloxatine, atorvastatin, paracetamol bisopralol and have been on these meds for years, not sure if any of these are detrimental to my rls, pain clinic has also refused my referral so it just feels like all the medical professionals have abandoned me, any advice greatly appreciated, thanks
exhaustion and feeling no hope - Restless Legs Syn...
exhaustion and feeling no hope
Welcome to the forum. You will find lots of help, support and understanding here.
Gabapentin won't make RLS worse but some of the side effects can mimic RLS but they usually show up soon after you start it.
How much gabapentin are you taking and at what times?
How long ago was your operation?
Atorvastatin is a statin as the name implies and make RLS worse for many. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor.
A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Since you take gabapentin you should be closely monitored as it can raise the bad LDL and lower the good HDL.
Duloxetine can definitely make RLS worse for most. My RLS was controlled by gbapentin when my doctor put me on it and I got off it immediately.
If you are taking it for depression Wellbutrin or trazodone are safe. If you are taking it for anxiety buspar is safe.
Where do you live?
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. p 166
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Hi, thanks for your reply, I live in the uk, I had my operation 10 years ago so the doctor has been trying painkillers for the duration, the last time I tried to talk about my rls I was advised to either take gabapentin to help the pain and make my rls worse or stop the gabapenton and maybe relieve my rls but put up with the pain, I left my consultation feeling like I was just annoying him and making a fuss over nothing, this is the first time I have really looked at the posts on here because I am at my wits end, I am now keeping a sleep diary to take to the doctor and to try and get some proper help, reading what other people are going through has helped as I know I’m not imagining it and if I keep going hopefully I can get the help I need , I have also been on duloxatine since my daughter was born in 1996, too scared to stop it now as it’s been so long,
I have decided to go back to the doctor and demand they take it seriously and try to get what I need, thanks for your reply
thanks for replying, I have been taking 2700 mg gabapenton at 3x300mg a day for 2 years and before that was on 2x300mg 3 times a day for 7 years, I asked to be referred back to the hospital but was told there was nothing they could do to help me, I gave been on duloxatine since 1996 and I’m from the uk and 49 years old
You are taking the gabapentin wrong for RLS as it is only needed at night,. However it is taken 3 times a day for pain. But it is not as well absorbed above 600 mg. However it is not controlling your pain so you need a low dose opioid which will control both.
I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. However it can be hard to get in the UK. Is there a pain clinic near where you live as I would ask for it for pain rather than RLS as doctors don't like to prescribe it for RLS.
Where in the UK do you live?
If you do come off the gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg (100 - 200 mg) every 2 weeks. If you do so you will have very few or no withdrawal effects. But as I said it is not causing your RLS.
Welcome to your first post (although I see that you joined 3 months ago, so perhaps you've been reading posts).
Gabapentin and pregabalin are first line treatments for RLS amongst experts: how much gabapentin are you taking and when?
I was put on atorvastatin and it both made my RLS terrible but also left me extremely tired and achy. I also tried rosuvastatin: didn't make me as tired, but still made RLS worse. I was then put on ezetimibe which didn't trouble RLS. There are other alternatives for high cholesterol.
Duloxetine also makes RLS worse for many: are you taking this for pain, depression or anxiety?
And which country are you in, as advice - and availability of alternatives - can vary by country
Hello Lizzy2301,
In 2007 I had a car accident. In 2014 I went under the knife for Lumbar Surgery L4,L5,S1. They thought the surgery would tale about an hour. Turns out it was an eleven hour surgery. I was on pain medications for over ten years.
Especially Suboxone for a five year run.
I went place Parallax in Manhattan. They saved my life. The medications I was under before and after detoxing crippled me. I felt a lack of blood flow and oxygen daily. I was in constant pain (every second of the day)
Eventually I had no choice but, to research the holistic approach.
I found a acupuncturist with compassion. Western medicine and Eastern medicine have totally different approaches. Especially when you undergo constantly testing and they say; you’re fine.
My acupuncturist provides me with acupuncture sessions, Qi-Gong, and herbal medicine.
I have massage therapy sessions. Which also includes dry needling or trigger point therapy to release the tension of the knots throughout the body.
Carbs and sugars greatly affect your rls. Which for me is in both arms and legs.
Magnesium Citrate - helps the brain and body rebuild its connection.
I’m sharing my journey with you as this has worked for me. I’m not a doctor just a patient that has suffered for decades.
This is the best advice I can give. It takes time to find the right team of people as well.
However, if your intuition tells you otherwise then keep looking until you find the right people. Compassion is a must.
Wishing you the best,
Danielle
Lizzy, As your RLS was triggered by spinal cord damage, I suspect you would do better on a long half life opioid, like Buprenorphine or methadone.
Why have the pain clinic refused your referral? Can you ask for a referral to a Sleep Clinic or a neurologist? You may have a long wait as NHS times are getting worse.
If you can afford to see a specialist, we can give you a few names.
Professor Walker in London, Dr Jose Thomas in Wales, Dr Robin Fackrell in Bath and Dr Chris Murphy in Manchester.
However, whichever specialist you see, be firm and make it clear you will not agree to dopamine agonists ( Ropinirole, Pramipexole, Rotigitone patch) as they will all worsen RLS eventually.
hi Lizzy i know exactly how you feel with the medical profession in the UK with regards to treating RLS I have also been where you are now and the help I received on here by these great people totally outweighed what I received by my doctor etc and have nothing but praise for all of them that helped me so please read carefully and take on board there advice I can't help with medications etc but can offer my time to talk but there will be plenty to help stay strong you will get there with help from these knowledgeable people as I did im not cured by any means but knowing people have your back alone is a massive help and your not alone keep talking as this helps hang in there regards nick
Hey Lizzy i am in a similar situation where im on 1mg ropinirole and 450 pregabalin and at an all time worst, im sleeping 3-5 hours a night and it’s effecting every aspect of my life. My Drs have been an absolute disgrace and i hear this is the norm with rls. I have an active complaint with my surgery and taking it to my local counsellor to try to get a referral to a specialist. In the meantime i have an appointment booked with Dr Jose in Cardiff who is meant to be one of the leading experts in the Uk, in an ideal world id get the help i need on the nhs but unfortunately its fuc*ed and we are alone (apart from here) i pray i can figure this out as im petrified how much longer i can cope.
Neither the iron or codeine or stopping the creatine helped?
Not so far, i had an all time low of 3.5 hours last night, i feel like im drunk at work doing a 16 hour day today, with out any of the fun part. I have read creatine can take upto 8 weeks to fully leave the body. Only took 1 codeine last night as not sure on dosage and had cannabis oil too so didnt want to mess myself up with to many things.
And what about the iron 🙄
Not made a difference so far…
Try taking 60mg of the ferrous bisglycinate. Maybe skip the cannabis and take more codeine. I’m not sure how much codeine. If those two don’t work then ask doc to trial trazodone.
I took 60mg codeine last night and slept a ton better with pretty much uninterrupted sleep. Im hoping it’s not a fluke so we shall see, ive managed to ‘acquire’ two weeks worth, im just worried about dependency issues but if im conscious of it i think i can manage it and will never go higher.
Andy, how many mg of iron are you taking and what kind? After you’re good and rested and the Creatine is out of your system you can begin to draw down on the DA again. This time I bet you’ll be successful. The goal is to eventually just need the iron.
healthunlocked.com/rlsuk/po...
And here is Bkc a few months after that. No drugs. Just like Boofoo71. I’m always surprised (and I shouldn’t be) when the iron works so well for people coming off the DA.
Bkc1777
7 years ago
Hello!
Well done for coming this far. It is very brave of you. I must say it isn't easy to come off from DA med but all worth it in the end in my opinion. You just have to remember that you will feel worse before you get better. 
When I was gone cold turkey with pramipexole in April I thought I gone through hell! Had rls all over my body. Had no sleep for the first 2 nights! I was like zombie! I started taking supplements specially iron bisglycinate was a magic pill for me!
I hope you don't get much withdrawal symptoms as you are coming off slowly. Good luck and stay strong.
Eventually Bkc treated the iron like a painkiller or rather “an RLS killer.” At last count her ferritin was 37.
You need to ask your doc for a prescription if you find it continues to work well. It’s the weakest opiate I’m aware of. I would worry about your sanity over and above becoming dependent on codeine. Though I would hold off on the cannabis for now. Like I said before, you’re really young and I believe once you’re done with DA (as well as Creatine) you will be like Bkc1777 and only need iron…then nothing.
Another solid sleep last night, i feel brand new lol. No cannabis as ive trialed it but it dosent work for me, we shall see and i have a little hope now. Plan is drop ropinirole .25 every 3 weeks use codeine for that then potentially try to live happily ever after …
just reporting back. The Codeine is a miracle ive now had five nights amazing sleep and last night dropped to .75 ropinirole. I pray augmentation is masked by the codeine and this is a step forward. Bloods taken yesterday so we shall see how I progress…
We will learn a lot from your case. I suspect stopping the creatine was a wise move as well. And now that you have stopped that supplement, it’s wise to draw down on the DA. I “believe” that even though it worsened your symptoms of RLS and possibly caused you to increase the amount of the DA, it also protected your dopamine receptors (somewhat) from the down-regulating effects of the DA. Now that protection is gone! So yes, draw down whenever the mood hits you. I know I sound like a nag, but the ferrous bisglycinate is also a little “miracle.” It should be taken before the codeine so you can see how much symptoms you’re left with and take codeine accordingly. What are you going to do about the no help Pregabalin?
Once i get this under wraps ill post a full timeline of whats happened and hope it helps others, i just dont like recommending things like cannabis or codeine in the worry it may be bad for some people so as i have you have to be strong and fully understand the consequences of self medicating.
I hate bot being on creatine but my training is still up so its not effected me yet.
Plan is now i take magnesium in the morning with electrolytes then i take 375mg pregabalin and .75 ropinirole at 8.30/9 with 60mg codeine and it makes me very sleepy (fell asleep watching a movie last night) i then go to bed (obviously lol) and then take another 150mg pregabalin when i wake anytime around 2am if i go to the toilet. This for five days has worked. The plan now is to reduce .25 every two weeks stay in codeine and then hopefully when im clear of DAs the pregabalin will work and if i need anything that shows up from bloods do that. I take the iron six hours after training as i read it’s absorbed better.
I have a formal meeting with my Drs and an ongoing complaint to the NHS with them, i want to fight for others and get things changed so Dra understand how bad this disease is.
Yessss, bring awareness about the DAs!!! I don’t know if you’ll ever be able to bring aware about Creatine’s effect on RLS. Somewhere, someone, is maintaining a list of all these substances that worsen the symptoms of RLS, but of course do NOT down-regulate our receptors the way the DAs do. Glad you’re feeling great. That’s been the goal of Healthunlocked since the beginning of time.
I am, but i am petrified i will become addicted to the Codeine as i have people around me worried about it all.
I get it. Addiction is not a big problem on here. Suffering from RLS is. We consider that the greatest darkness. Codeine is a light weight. Low down on list of addictive substances. You seem to have come off the cannabis with no problem.
What im keen to understand is exactly what it is that causes restless legs, is it our brains producing to much or not enough dopamine and what do the DAs do? Following from that what do opioids like codeine do to us that they dont to regular folk. When i take the codeine within half an hour i sound like im high lol and have to run to bed (not literally) as want to make the most of tbis rare thing called sleep.
Ive read lots and found mixed info on all of the above, my Dr is about as good as a chocolate tea pot lol
We have lousy d2/d3 dopamine receptors in a certain part of our brains. Picture a faucet at the base of your brain. Most people have a stream of dopamine being hurled from their brains, down their spine (called the central nervous system) to their arms and legs (called the peripheral nervous system). That stream of dopamine (a neurotransmitter at this point) is what quiets our arms and legs. We with RLS have something closer to a trickle. For most of our lives that trickle is enough and we don’t even know we have RLS. Maybe just a blip here and there. Then one of several things can happen. Injury, disease, SSRIs, menopause, aging in general, creatine - all of which antagonize that trickle. Then we realize we have RLS.
And yet, even after any of the above, we’re still only bothered by RLS at night, generally. We may actually have a larger pool of dopamine and a larger pool of brain iron (but not stored brain ferritin) than the average bear. It’s like a TV, when the reception is bad you turn up the volume. That’s what our bodies do, turn up the production of dopamine and brain iron, in an effort to compensate for our lousy receptors. We really, really need that extra unprocessed dopamine and serum brain iron (iron is the grease and glue that keeps our receptors chugging along), but these two brain substances plummet at night - in all humans. Non-RLSers have great dopamine receptors and plenty of brain “ferritin” (which does not plummet at night), such that they’re not bothered by that drop in dopamine and serum iron, but we are. So at night, you either take a DA, or Sifrol, or an opiate (to dull your senses) or ferrous bisglycinate or Lyrica (a pain reliever) to get you through the night.
The dopamine agonists really do a number on our receptors-they make them yet smaller and even more lousy because they whip them into producing more dopamine. On the other hand, dopamine antagonists like your creatine (or melatonin), SSRIs, HRT, calcium channel blockers “may” actually make our receptors bigger and stronger. Either way, when you stop the agonist or antagonist, your receptors will begin their slow crawl back to baseline.
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