Hi after an excruciating withdrawal from opioids and methadone I thought my life was just beginning, however I then started suffering with rls I thought it was just part of the withdrawals and would pass in time. After 18 months of bad symptoms keeping me up every night I simply wanted to end it all so I went to the doctor and was prescribed a very confusing instruction to take certain doses of pramipexole and to increase every night if tolerated it was not and symptoms were at least twice as bad.So feeling like I had nowhere to turn being denied any other medications I have been on opiate replacement therapy for 10 years as its the easiest thing for doctor to prescribe me even though it severely restricts life choices.
I am older now and dont want to be reliant on this dangerous medicine for the rest of my life Please help by providing me any information I feel I have been left in depression by my doctor.
Thanks for listening. From Andrew.
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Are now back on methadone? If so, what dose have they put you on? For RLS, the recommended dose is between 5-20mg a day.
RLS is a common side effect of opioid withdrawal and often subsides, especially if brain iron levels are high enough.
I'm sorry the RLS never went away.
Have you had full panel fasting blood tests? Many with RLS find their RLS resolves once serum ferritin is raised above 100, preferably 200. You can try to raise levels and also ensure you're not taking meds that trigger RLS like anti depressants or sedating anti histamines.
Many of us are on low dose opioids for life as they're essential to allow us to live RLS free. You're taking it for RLS, a neurological disease so if it helps the RLS, it shouldn't affect your life choices.
Hi thanks for replying its amazing to find a community about this I felt so alone for years as ppl who haven't suffered from rls don't understand as its hard to explain how it feels the worst part is lack of sleep and being constantly tired and with that comes very bad forgetfulness I was at the point of really giving up I wanted my legs removed however I had to struggle through for my daughter's sake.
Thats why I got clean off the opiate substances which was so hard I thought my life was just beginning then after all the hard work the rls started and was genuinely worse than being a heroin addict and the way treatment works in Scotland is daily dose at the chemist no trust from doctors I once asked if I could try some gabbapentin to get off the methadone but doctor said due to my history of using drugs it was not a good idea so its better to stay on methadone so due to that i cant fully stay away from the association with opiates and all the temptations a former addict has to face I just wanted to be completely free of having to rely on a dangerous substance that is not good for long term use but because its easier for the doctor to prescribe me opioids rather than a small dose of gabbapentin I feel like ive been left alone and suicidal over someone's decision to deny trying some different treatments please help.
Your doctor is ignorant. You don't become addicted to gabapentin. You may become dependent and eventually have to increase the dose a little. But once you have been on it for about 6 months and the proper dose is established you won't have to increase it for years. And one can always come off it without any withdrawal symptoms as long as one does so slowly. Unfortunately, some people, not with RLS use gabapentin illegally to get high and that is what your doctor is thinking of. People with RLS do not get high on gabapentin. 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 Https://mayoclinicproceedings.org/a... You might want to print out the sections on gabapentin and on opioids to show your doctor.
Thank you so much for listening I wouldn't mind being on any other medication even if it was forever taking a couple of tablets at night and being able to collect a normal prescription without the stigma and rules that comes with methadone would make so much difference to my mental health I want to be done with opiates and am prepared to do what I must as I feel my life is in limbo just waiting and worrying that nothing will change I don't want to give up but its like obstacles are overwhelming especially when I know other people who are on a combination of all sorts of dangerous medication and are still using illegal drugs on top when I just want to feel comfortable in my own body I also think gabbapentin is less harmful than methadone and the doctor would be glad to help but as im on methadone im just contented and dont bother anyone meanwhile my mental health is spiralling out of control.
I totally understand the things you are writing here...and I am in the US and was only on methadone for a handful of months so that I could get off of the RLS DA drugs. I have been trying not to go back to it, or any other opioid, because it really is life-changing, even with the rls relief. I, too, don't want to be on that for the rest of my life, sleeping far more than I should. Stressing out all the time about the prescription.
During the time I was on methadone for RLS, I was treated like crap from multiple sources, even though I had never taken hard drugs in my life and I look very healthy. I had near-constant stress because I never knew if I would get the methadone or not each month. I was cut off twice and had super bad withdrawals one night. And YES, part of the withdrawal is even MORE horrible, full-body RLS!! UGH! Without someone on here telling me about kratom powder, I don't know WHAT I would have done the second time I was cut off.
Having a prescription that is easy to get and not a constant stressor is huge. Plus you have to jump through so many hoops to get the prescription and then to keep it. God forbid if you should run out because the pharmacy has an issue or the DEA has an issue with your case or your doctor. At least that is my experience. And now Dr. B is no longer saying that you have to come only once a year-you need to go in person and more often.
SO, there is a STACK of other worries and issues on top of the main rls problem-I hear you.
The good news for you is, you did not go down the road of DA drugs for RLS. This means that there may be several solutions that could work for you since your receptors may not be damaged like many of ours are. Check around this forum for a doctor who understands rls-even if you have to pay for a visit yourself. Things will get much better for you when you find the right doctor. The gabapentin will probably work for you (it doesn't for me, nor does Horizant). Even better, a natural solution such as getting your ferritin up and taking iron/getting an infusion might be all you need. Or magnesium, etc.
First, to get off the methadone, you would probably be prescribed Buprenorphine. Which also alleviates RLS-bonus! Kratom actually got me off of the methadone, and then just a little BUP got me off kratom at one time. Although I still take it for the rls and am hunting for my own solution.
You've come to the exact right place-keep researching and hang in.
Hi thanks for your reply I can't believe anyone would put you on a very potent highly addictive opioid to withdraw you from DA may I ask was it the type they use for Parkinson disease ie pramipexole,
I didn't realize those were addictive I have tried them however my rls symptoms went berserk so bad that I was terrified to take them but was told to keep trying as it takes time to get in your system I couldn't bear those.Also I have been on buprenorfene before and it does work up to a point due to my substance abuse my tolerance to opiates is sky high also im not sure but my rls starts the minute I lay down and close my eyes and goes on all night every night im not sure how other people are but I think mine is severe by the way what is this kratom powder and how does it help.
I wish you all the best and hope you find a solution before you end up another opioid statistic please be very careful and don't be tempted with street drugs its a very slippery slope.
Thank you! Yes, as you read this forum and also the latest research-that is how long term DA takers get off of them-with a low-dose opioid. DA means dopamine agonist drugs such as Pramipexole and Ropinirol. They usually cause augmentation and make RLS much worse in the long run. Also, if they were going to work for you, they would work right away. They aren't something that needs to build up, like gabapentin is. But, you don't want to start on any of the DA drugs-definitely not. That is why I am in the mess I am in. But you should have many more options than I do, as iron or gabapentin may work. Try taking 2 capsules of iron right before bed on an empty stomach and see if that helps-it does for many.
Also, many people then have to continue to take the opioid because their receptors were so damaged by the rls DA drugs.
Kratom powder is used by many but may not be a good long term solution. If you are in the UK-you have to order it as "tea" from Scotland, I think they said, since it is illegal. It is legal in much of the US and other countries. It stops rls within minutes, as it has opioid like qualities. You can read about it on this forum. It is from the root of a tree in Asia, I think.
Wow I was led to believe the reason DA drugs are the first thing they try is due to there safety profile however almost everything ive seen about them is that they almost always lead to making the problem worse I can't remember what they call it this sounds like a bad idea another thing ive noticed about rls is a feeling of fear or extreme anxiety thinking "omg nothing is going to work im going to feel like this forever other people think im exaggerating am I alone if this is my life Id be better off dead" I know that sounds bad but thats some of the thoughts and feelings its actually quite scary and sometimes its not the leg feeling its the lack of sleep that comes with it messes with your thoughts.
Sorry for going on it just feels good to find ppl who knows what im going through I really appreciate being able to vent.
Yes, it is called augmentation and things get much worse than they were originally. Plus the usual solutions then won't work.
DA drugs are no longer the first line of treatment.
It is ok to vent here! We all know what you mean. The lack of sleep is horrific and so bad for our mental health. Almost all of us have had terrible thoughts and some have actually gone ahead and killed themselves. But, there are solutions-you just won't get them from most doctors unless you do the research here and push for the right help.
It must be middle of the night there. If you are still awake, take a couple capsules of iron and see if that helps at all. Check around the forum and start taking magnesium, too. See if the gaba supplement before bed could help you, too. As I said-you have a lot of natural options to try that will not work for me (so far).
Oh, and the drug dipyridamole just might work for you, since you don't have the DA damage. It has really helped some people and definitely has fewer side effects...also easy to get the prescription.
I am so sorry. Have you tried gabapentin or pregabalin? To elaborate on what Joolsg said. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.
Hi when I first felt this way my doctor did full blood tests and at the time I was at the healthiest time really looking after myself and so tests came back all completely normal so couldn't understand what was wrong and because of the results dr thinks there is nothing wrong with me and its psycosematic therefore I was left untreated and miserable also 15 years ago I think my doctor didn't understand rls and because of my history of substance abuse I was treated differently there is a stigma here and even honest people who are trying so hard are stereotyped because some drug users are always trying to get medicine prescribed so ive lost faith in the health system and haven't even had an appointment in 4 years as I feel I will just get pawned off due to ignorance being on methadone in Scotland has rules daily chemist visits consume on the premises fortnightly appointments with a community psychiatric nurse treated like a second class citizen because of other peoples actions I want to run away and live a self sustainable life on a farm or traveling but I will never be able to do these things as im shackled to a prescription drug that is very difficult to get off of .
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, 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, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Are you taking any medicines or OTC supplements. Many can make RLS worse. If you list them here I can tell you if that is the case and can sometimes provide a safe substitute.
my husband was in a very similar position as you. He’s now using cbd successfully which is a lot better than opiates. I wish you luck. ❤️I’ve watched him suffer so much! I’ve also been hearing good things about lions mane. And, an anti inflammatory diet is an absolute must.
Also foods that support the nerves like omega3 fatty acids from oily fish, leafy greens (esp dark ones), iodine (seaweed or sea kelp tablets) and selenium (brazil nuts) also vitamins B 12, and E (also vitamin c but you'll get that from the dark leafy greens)
Hi, RCHD! Could you tell me/us exactly what he is taking? As you know, I am on the hunt to find something other than an opioid. I had tried cbd and also thc. I take delta 8 gummies but they don't hit the rls. I'm so happy for you two as I know you have been struggling and suffering for ages, too.
he’s using cbd gummies. They work for him. Maybe for some they don’t.. I think it just depends on the person? Cbd oil seems to also be successful and so does THC .
Wow-so after all that he has been through with the DA drugs, the opioids, the kratom, etc, a simple cbd gummy cuts his rls? he takes nothing else now? that is incredible! a huge success story, truly!
I would still appreciate the exact name and/or what the ratio of cbd is-thanks! there are so many out there.
Yes, I am too! You've been through so much. If you see the package, please let me know what it says, as his history is closer to mine in terms of the DA usage and all that. So if it works for him, I am almost sure it would work for me.
I don’t think it will work for everyone. I think you need to keep exploring. There’s a lot of people who say Cbd and cbd oil works. Try different things. Nothing works for everyone that’s why it’s hard to recommend. Since you live in a place where it’s easy to get you should explore. He wasn’t on opioids for that long , only 7 months so maybe it was easier to switch. If you are on opiates for years you would need to detox it first , as he did too.
thank you! I wasn't on opioids very long at all-maybe 4-5 months total. it was the DA's for years that did the damage.
kratom got me off of the methadone and now i'm taking kratom and hirsuta while searching for something other than an opioid. I'm also taking a supplement called berberine every day-to see if it helps to repair receptors.
I have tried so many different oils and gummies with cbd and thc. I feel like i've done it all. it's so fab you finally found your answer!
Yes… I’m happy for him too. I think the DA create a lot of problems. He wasn’t on those , only short time on pramipexole. The opiods were the worst and kratom too, for him as they act on the same receptors. Maybe for you kratom works. Everyone is different. For sure.
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