It’s me again… the new mom who is trying like hell to get her RLS under control.
I have a weird question for those of you know might know about these things in an “unofficial” way. I spoke today with my neurologist about switching to oxy from hydrocodone. She is uncomfortable with it, and so, unless I try a pain management specialist, I am stuck with what i can get, which is more than a lot of people, I know. It’s just still not giving me relief. So, I am wondering if there is any way to boost the therapeutic effects for RLS from the opiate I AM taking? I was thinking along the lines of how when you take the iron supplements, the absorption is better with vitamin C.
I’m starting to feel desperate because I am on my third day of only 1-2, chasing after an almost toddler and I’m about to break down. Just thought I’d throw the question out there. Thanks, fellow suffers. I know you *get* it.
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Newmomma567
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Try potentiating the hydro with paracetamol? When you take your normal dose of hydro, take, say, 250gr of Para. See if that helps. If it does ,grand. If it doesn't do enough, then go up to 500 gr.Are you taking the hydrocodone 4 times a day? If so, then max Para would be a 1000gr per dose-- but that would be a very high dose.
Check that you are not ( and don't) taking paracetamol in any other form or as a part of another medication. And that it's ok for your liver. Check with your doctor.
I often use this trick to potentiate the effect of Oxycontin if it doesn to seem to be giving "full value".
God bless… hydrocodone four times a day would be awesome. Alas, no, I only have enough to take it before bed, or if I break up up a bit and take less at night, some for my late morning symptoms when I’m trying to rock my baby to sleep for his nap.
But you’re getting to exactly what I’m asking… sometimes (more often than not lately, it seems) I’m not getting the “full value” of even a full 10/325 hydrocodone. Or even feel it at all. Then, the next day I can take half and *really* feel it. It’s strange. I thought maybe it had to do with how full my stomach was, but I have done it on an empty stomach before and had the same non-feeling as when on a full stomach.
At any rate, I’m not chasing the “buzz,” it just indicates to me that the drug has taken effect and that it’s time to try and sleep.
I’ll try adding some Tylenol with it and see if that helps, but I am also open to any other suggestions.
If you’re take 10/325 then I’m guessing ur in the US and that means ur already on 325 mg of “Tylenol” in that one tablet. It’s real important not to take too much Tylenol (acetaminophen) or as it’s called in the UK paracetamol as you will damage ur liver. My best advise is to change to the Percocet if ur doc allows. There is plenty of on line research to show not everyone becomes an opioid addict. xx
Agree with this. Abuse of opiods is low in RLS users. I know there is a study out there. Maybe someone else knows. Make sure you are getting across to your doc the seriousness of the situation. If necessary bring someone in with you who can attest to how RLS is effecting your quality of life. Especially if it starts to effect your mental health. Before I started ocy I had to have a heart to heart with my doc. We both knew I would become dependent on it. We both agreed that if I showed any signs of abusing the opiod, such as asking for early refills or wanting higher and higher doses, then I would be weaned off.
You're just not getting enough coverage with your current dose. You shouldn't have to suffer. Withholding a valid treatment because they may not be comfortable is always suspect in my mind.
Print out those mayo clinic guidelines and bring them with you.
If you have had your blood ferritin levels measured and found to be low then the best thing to do is get an iron infusion. If your problem is lack of ferritin then you don't want to be feeding your body on any drugs that all have side effects. You need to get your ferritin level up to about 300 or so to see if this can help you. The only way to know if it will help is to try it and the only way to try it in a reasonable time is to get an iron infusion. Tablets or other supplements will take years and might never get you there. There seems to be no point in suffering for a year or so to find out that you will never get there or that its not going to help you. Depending on where you live an iron infusion is as easy as asking your doctor or as hard as battling a string of GPs to beg them to relieve your agony. It can cost nothing or about $500 depending on your country and health insurance.
If you decide to try with supplements then get a doctor to supervise your health because too much iron can be really bad for you. It can destroy some important organs that you need.
An iron infusion might fix you overnight or take three months. It might fix you for ever or you might need a top up every few months. Some doctors say that if you need regular top ups then there is some other problem causing your iron to leak away. This might be an internal bleed or something a hematologist can fix.
I think this is the best starting point for every RLS victim.
I will send a private message that might have something useful in it.
I have to say, I have tried about 80% of the suggestions on your list as many of them are drug-free, and I was recently pregnant and looking for solutions that wouldn’t affect my baby. I got 5 IV iron infusions, and I am currently working with my neurologist to see if that is a route I might explore further. My ferritin was 7 at the beginning of the treatment (after a miscarriage, a pregnancy, and a labor where I hemorraged) so I was REALLY hoping that I would get some RLS relief from those. Although I felt a TON better, treatments were discontinued once I was no longer anemic. I think my ferritin was around 60, so I was deemed “cured.”
While I was pregnant, obviously, no caffeine, no alcohol, a very clean diet, and had to wear compression socks for because I had crazy water retention in my legs. (I actually wonder if there is a circulatory aspect to my RLS, as it seems when I get a bad attack, my ankles also tend to swell.) I have issues with IBS, so I have already gone through an elimination diet and have found that diet does not seem to affect my RLS one way or another (though sometimes, if I am having an particularly bad night, eating something starchy seems to help me sleep. I assume it has to do with a dopamine release.)
I recently tried Kratom, and found that it made me feel a bit weird but did nothing for my RLS. Lol. Cannabis isn’t legal in my state, so I haven’t tried that. But I do see someone supplements in your list that I will look into.
I feel like all the research into RLS relief has turned into a full time job. URG.
Hi newmomma, your question makes a lot of sense. Madlegs has given you the reply I might have, whick os the 'trick' I learned on this forum - from Madlegs 😃.
Too bad you doctor is mot willing to finetune your opioid. Oxycodon is the only one with a somewhat solid research history for its use for refractory RLS (one smaller and one large and fairly longterm double blind placebo controlled trial - from the top of my head). Bit different opioids work slightly differently, and on top we are all different and this react differently. One would think that when one type of medicine has been proven effective, a doctor would help find the best suited medicine within this group for the patient. OK. Rant over.
As you are in the US, have you visited rls.org to see if there is a quality care centre for RLS near you? If not, and if your neurologist is open enough to i formation from you, have you shared with her the seminal paper on opioids for RLS by Silber et al 2018. See this link: mayoclinicproceedings.org/a.... Very recently, an update of this paper has been published, giving a very nice and concise overview of RLS and its treatment, also by Silber et al 2021: mayoclinicproceedings.org/a...
I have been talking to the neurologist about my dose of hydrocodone (I want to go to 20mg/day) and according to this chart, what I am asking is totally consistent with the LOWEST dose recommendation. I’m so glad I’m not crazy, or even asking for something that is outlandish !!!
I might send this along to her, and see what she says.
I feel vindicated and a bit relieved that I’m not just building tolerance or something.
Show your neurologist the opioid study by Dr. Winkelman at Massachussets Hospital. Low dose opioids are safe and effective long term and do not cause addiction (unless there is a history of abuse).massgeneral.org/rls-registry
Also, as your ferritin level is still way too low for RLS, make further enquiries about a further infusion of Injectafer (or Ferrinject) in other countries. Most experts report that serum ferritin levels really need to be above 250 to get relief, and 60% will see dramatic improvement.
As Lotte suggests, the US foundation is really useful for recommendations for specialists.
Yes, WE all know we’re not addicted, but my neurologist has told me she is “uncomfortable” prescribing any oxy. But that if I really want to pursue that route, she will refer me to a pain specialist.
In the US, there is a massive stigma with that. Plus, it makes me exceedingly nervous because there are so many contracts to sign with them stating you won’t get drugs anywhere else. I don’t know what would happen if I were, say, in a car accident, and had to get pain meds in a hospital setting? It’s scary.
At any rate, I am finding relief on the higher dose of hydrocodone, and she has agreed to increase the dose for me. Fingers crossed it keeps working.
I should add: I sent along the link you gave me with the doses recommended by the experts. That same day she agreed to increase my dose. If I could kiss you, I would!
I just wanted to add that I also started with hydrocodone and then moved to oxycodone and have been on a very low dose for several years. The hydrocodone was not quite effective enough. I am part of the study that Jooslg referenced and suggest you provide a copy of the entire study to your neurologist. Perhaps your neurologist could reach out to Dr. Winkelman for input. The iron issue definitely needs to be addressed. So very sorry you are having to deal with this while also having such challenges with your pregnancy. Please take good care and don't give up!! It does take quite a lot of time and effort to get a treatment that will work.
Luckily, I’m not pregnant anymore, but I do have to chase after a very spirited almost one-year-old! I’m also about to undergo PhD field exams, and I just don’t need the added stress of crazy legs on top of it all!
They’re looking into my iron levels again, thank god. I would happily do more infusions. If iron fixes this issue, I would be over the moon! Hell, if they told me spearing peanut butter on my eyebrows and standing on my head would fix this problem I’d do it without missing a beat.
Update: my doc is out of town and a new doc won’t write me the new Rx. She agreed to. So now I’ve had to go back to Requip to get some relief. I refuse to try and go a week or two without any sleep when I have to chase after an almost one year old.
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xx
opiate induced insomnia
Happy legs but busy mind. Opiate-induced insomnia 
Augmentation, opiates, benzodiazepines
buprenorphine for RLS 
