Dear all, I am a caregiver to my mother (65 yo) who suffers from RLS, and I am so excited to have found this community! It actually makes me both happy and sad, happy because this is the place where everyone understands what a nightmare RLS is, and of course very sad that many are suffering like my mother does. She has had RLS for many years, and 2 years ago she was diagnosed with avascular necrosis in her hip, a very painful condition, for 2 years she was limping and in pain, during that time her RLS increased also. So she was hoping hip replacement brings her some relief, but it actually seems to have made it worse. She is talking about suicide even, this breaks my heart. A year ago she was first prescribed pramipexole (0.25 and she takes 1.5 pills) and neurontin to take occasionally, and it first was working great, but in 6 months it got worse, she tried Requip, but it doesn't really help much. So now she is on pramipexole same dose + 3 x300 mg neurontin (taken 1 at 6 pm and 2 - 2 hours before bed time), plus she was clonazepam to take when it is really bad. It's been about 2 months since her hip replacement, she is not that much in pain, but RLS drives her crazy. She also was on Cymbalta, she stopped taking it, because it may trigger RLS, but RLS did not improve, so she is back on it, otherwise she is crying a lot. So it's my second day on this forum, tons of good information here, thank you everyone who shares their experience!
I am also always worried about her, because she had bowel cancer 9 years ago and breast cancer 6 years ago. So whenever she has a really bad bout of RLS, I am always thinking what if it is caused by something maling in her bones, even though she does not really complain about pain anywhere in her back or leg, just that totally unpleasant urge in her shin, ankle and bunion, mostly in her left leg, the one with the new hip, and sometimes in her right leg too.
Sorry for such a long post, hope someone may give me hope that hip replacement effect will go away some time soon, probably she needs to start working with a good PT, because now she is only doing some light exercise at home.
Interesting, I read about brain distraction here, and today spent an hour with her showing her funny videos on Instagram, etc when she was already in bed. It seems she is sleeping now, even though RLS already started when she was in a car.
And I want to wish everyone here to find relief from this syndrome, I can imagine how you feel.
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It's not caused by anything in her bones. Since she is obviously depressed, she might want to ask her doctor for trazodone which is safe for RLS (most antidepressants aren't) I would suggest she increase neurontin as the 600 mg she takes before bed is a low dose. She could ask her doctor for 100 mg capsules and increase it by 100 mg every couple of days until she finds the dose that works for her. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Has she had her ferritin checked? Improving it to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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
Dear Sue, thank you so much for the link, I am going to prepare a list of questions for a new neurologist we plan to visit soon. Her last ferritin was 68, and it was probably affected by the recent surgery, because of possible blood loss.
Hi Daisy and welcome.I'm so sorry your mum is suffering so badly with RLS and that the hip replacement made it worse. She's been through a lot recently.
Many of us can understand her suicidal thoughts and you need to reassure her there is hope. It's annoying that the doctors put her on Pramipexole, as it's not first line treatment due to high risk of augmentation( worsening of RLS).
The first thing your mum needs is a full panel blood test.
This should be done first thing in the morning and after fasting. It's also useful to stop all vitamins and iron supplements for several days before the test.
Ask for actual numbers. Serum ferritin should be above 100, preferably 200. Serum Iron above 60.
Raising ferritin can resolve most cases of RLS. An iron infusion of Injectafer raises levels more quickly.
HOWEVER, your mum is on high dose Pramipexole and the dose has stopped working and been increased. That is a bad sign and usually means augmentation - a worsening of RLS symptoms caused by Pramipexole.
Also, the Cymbalta WILL make the RLS worse but as she's suffering augmentation, stopping Cymbalta while still on Pramipexole won't make a difference. Safe anti depressants are trazodone and wellbutrin.
So, first get blood tests and raise ferritin. Second, replace Cymbalta with wellbutrin or trazodone and thirdly, slowly get off Pramipexole by half a 0.088 ( 0.125) pill every 2 to 3 weeks.
Stay on the neurontin and when your mum drops the last dose of Pramipexole, she can increase neurontin up to 1800mg-2400mg.
Spend a few hours reading all the recent posts and replies. Doctors aren't taught about RLS so we have to educate ourselves.
In the meantime, as your mum is suffering so badly, you could ask the GP if there is any possibility of prescribing low dose opioids for the pain, the intense RLS and to lessen the withdrawal symptoms from the Pramipexole.
If you're in the USA, there are many RLS experts and they will help your mum through withdrawal and would arrange iron infusions and consider whether a low dose opioid like methadone or Buprenorphine might be a better option for your mum. Dr Mark Buchfuhrer in California is fantastic.
Dear Joolsg, thanks for tons of useful advice, in fact, her previous neurologist said she couldn't have augmentation on Pramipexole, he said it took years to develop. We have an appointment with a new one soon, I am getting ready with a list of questions to ask. Clonazepam is not an opioid, but it kind of helps, if she takes it soon after it starts, but if she waits hoping that neurontin kicks in, even 1 mg doesn't help.
Sadly augmentation can happen within weeks. But most neurologists don't know that. The top experts see hundreds of RLS patients a week so know first hand how dangerous these drugs are. It's why they won't prescribe them.Most people on here joined because their RLS was getting worse and worse and doctors weren't helping them.
Getting off Ropinirole and Pramipexole is tough but is much more difficult the longer you've been taking them and the higher the dose so it's easier to get off sooner rather than later.
Wishing your mum strength. There's always someone here who can support you both through withdrawal
One woord Made me smile Brain Distraction. That is so true. I have RLS for over 40 years now in my 80 est it is bad to much time to think about it. I take Targin and Pregabalin it works well for 80% but the 20% when it happens is bad real bad . My neighbour came over as I was in tears about it but after looking at several YouTube’s together and talking together I noticed the RLS went to sleep. It does not always help but mind over manner does work so keep her occupied and interested in interesting things it helps. I wish you and mum all the best
Average Targinact dose for RLS is 30mg. Targinact has to be taken twice a day to prevent mini opioid withdrawals ( RLS is a symptomof opioid withdrawal).However, Dr. Buchfuhrer points out that Oxycontin only lasts 4 or 5 hours and causes mini withdrawals if taken every 12 hours so taking 5mg every 4 hours throughout the day might be better. It's what Dr. Buchfuhrer advises and he sees hundreds of RLS patients a week, whereas a UK GP will probably see 1 or 2 patients a year.
I suggest you see your doctor and explain that Targinact 10mg isn't covering your RLS.
Fill out an RLS diary and an International RLS score sheet and show it to your GP.
Also print out the Massachussetts Opioid study by Dr Winkelman to show the average effective dose for RLS.
75 lyrica is a low dose. You could increase it by 25 mg every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of lyrica daily."
Hi, I tried to increase lyrica few months ago by 25 and I felt like I’d drunk a bottle of whiskey!!! Really affected me, but I still had to keep walking for hrs afterwards and felt like a danger to myself 🙁
Just started Norspan patch and hoping that helps.
Do you know if it didn’t work would I add codeine as I do now or take a stronger patch and how long should I give it to start working?
You might want to try switching to gabapentin. Although they are basically the same drug , and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. You could directly switch to 300 mg of gabapentin which is slightly less than the lyrica you are taking now and increase by 100 mg every couple of days. If you still have that side effect and it is not helping at all, then you need to come off it. Reduce the gabapentin by 100 mg or the lyrica by 25 mg after at least a couple of weeks and perhaps even more. If you do it slowly you will have no withdrawal effects. The Norspan patch should definitely help, but I am not an expert on opioids so I can't answer your question.
Thank you, Aetje, I hope you RLS is not always bad, 40 years wow😔brain distraction is a thing, yesterday we tried funny videos, today we were hanging curtains. I also told her about the community and that there was hope, otherwise she gets so anxious when a really bad bout of RLS happens, she asks for an injection of NSAID, which kind of helps, too, maybe because it somehow helps psychologically, she is a big believer in injections, like they get straight into blood flow, which I don't think is really true.
Since your RLS is not completely controlled, you might try increasing your pregabalin by 25 mg every couple of days. The usual effective dose is 200 to 300 mg daily. Also, unless you have symptoms during the day, there is no point taking it then.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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%. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
It could be caused by Lead exposure which is stored in her bones, which -- especially as lead begins leaching after menopause -- could cause RLS. This might explain why the surgery, in sawing through bone, made it worse. You should have a toxic metals test done. In my own case, I am nearly off the chart on Lead in my body. I have been removing it through IV chelation, and my RLS is nearly gone.
Hello! My husband suffers from RLS. I just wanted to mention that sometimes surgery can cause RLS to flare, badly, for a few months to a year. My husband has had knee replacement surgery in both knees. After his first replacement, although we continued his daily mirapex, we were both amazed that he didn't have any RLS flares AT ALL. Not riding in the a vehicle, no flares in his hands, it was wonderful. Two years later he had total replacement in his other knee, and his RLS episodes and flares went through the roof and he suffered terribly, even while taking his mirapex. I got on this forum and found people who had the same widely varied reactions, caused by the surgery. Any surgery. I don't know if it's the nerves, the anesthesia, or just the insidious nature of RLS that causes it, but it can happen. The good news is that's when we found how much relief opioids could bring. My husband has used a CPap for sleep for years, and we were connected with the Sleep Disorders doctor (in addition to the Nurse Practitioner) who has been working with him every since then to manage RLS! We have slowly lowered his Mirapex dosage, added some Tramadol, he began taking daily iron tablets (with Vitamin C tablets), and wow, what a wonderful difference. And what a difference to get away from some of the crazy side effects of the Mirapex. He still has an occasional flare, which we manage with tramadol. And sometimes he drinks pickle juice and that helps him! We are in the process now of lowering daily tramadol intake, and we are going to set an appointment with a hematology doc to see about an iron infusion.
And note, like so many others have stated, our regular doc thought my husband's iron levels were fine, but the Sleep Disorder doc did not, and when we added the iron/vitamin C to his daily intake, what a positive difference.
It takes a lot of work and research and finding the right doc to understand and help, and being a pushy advocate! But relief and maintenance can hopefully be found.
or, dear MrsWaldo, knee replacements are tough, hope at least your husband is no longer suffering from knee pain, which may be so debilitating. I guess a surgery kind of aggravates the leg, maybe the brain keeps thinking about the surgery, all the cutting and sawing etc. (sounds pretty awful indeed), and it all messes up the whole body, because surely there is some connection between brain, mental health and RLS. Hope we can get a prescription for an opioid, and iron is another option we should consider, she used to take it for a month or so, I don't even remember if it made any difference. It is time to reassess her levels and to take every possible proactive step. I hope physiotherapy will be helping, I want her to try these pressure pants or what they call them, plus a new massage shower head for more pressure with hot water before sleep, definitely a change in her meds, we already have a new mattress for her, but she is reluctant to sleep on it all the time, it's medium hardness, she only sleeps on it sometimes, it's on the other bed in her room. Really one has to handle so many things with RLS 😱
P.S, I agree with Joolsg that she needs to get off pramipexole, but considering the state she is in now and the fact that getting off it will make her symptoms worse, I would wait until things settle down and try increasing the neurontin to help with her symptoms. And yes - a low dose opioid would help. On the ferritin: when she sees her doctor she should ask for a full iron panel. She should stop taking any iron supplements 48 hours before the test, fast after midnight and have her test in the morning when her ferritin is lowest. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her transferrin saturation to be over 20% but less than 45%. If her transferrin saturation is OK, then if her ferritin is less than 75 she should take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. She should take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If she has problems with constipation switch to iron bisglycinate. If her ferritin is between 75 and 100 or if her transferrin saturation is below 20, she may need an iron infusion since iron isn't absorbed as well above 75. If she takes magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. And yes, an iron infusion will raise her ferritin more quickly. On the neurontin: She should take it 1 to 2 hours before bedtime. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime as it is not absorbed well above 600 mg. It is not going to fully help though until she is off the pramipexole.
I have had RLS for almost 60 years. At first it wasn't bad but as years go by it gets worse. Before bed I take one sleep gummy, 2-1/2 mg diazepam (Valium generic) and rub about 1/4 tsp of progesterone cream into the back of my knees or forearms. In less a half an hour I am asleep. It only works for about 5 hours so that's when I take 1-1/2 mg more of diazepam, another sleep gummy and a use little more progesterone. Again in a short time I am asleep again. I also eat foods with plenty of potassium such as spinach, kale, V-8 juice, banana, potatoes, etc. You need to look up to see what other foods have potassium in them. I also eat red meat for supper every day. Just doing this, as long as I do it faithfully, I sleep pretty good and I don't have that creepy feeling in my legs. Do not drink any caffeine or consume dairy as that will make it worse. I drink decaf and Almond milk. 🙂 Good luck and I hope this works for some.
I have had everything checked and it's all in the normal range. I have also tried every RLS med there is to be had and ended up with bad side effects from everyone of them. This is the only thing that has worked for me. My diet is a big part of the help I get besides the meds, etc. If I don't get enough potassium I still have problems. It's like a big puzzle with missing pieces. But lately on most nights now I sleep about 8 hours. I wake up part way through and then have to do the bed-time process again at a lesser scale but I do go back to sleep and wake up slightly groggy but after eating breakfast I'm pretty normal as far as energy and being able to do daily work. Thanks for asking.
That's great that your routine works and you are able to sleep. When you say it is in the normal range, that is what most doctors will tell you, but what is normal for other people is not normal for people with RLS. Do you know your actual ferritin number?
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