Does opioid monotherapy lead to tolerance?

[Valthinking]

I need advice and help. I'm living in a constant state of anxiety and don't even know which med is causing it or if it's just my nature. My new, post-pramipexole nature. I was able to get an online appointment with Mayo (I live in Illinois) and get a recommendation for oxycodone monotherapy. My neurologist kept it at arm's length for a year and finally gave me 10 mg Oxycontin and by default, a prescription for 60-5mg pills monthly which I didn't take, but bought 'just in case'. I also have a psychiatrist who is an addiction specialist (at my PCP's direction), a pain management doctor and a sleep therapist. I have almost a panel of doctors 'helping' me. None of them except the sleep therapist know what they are doing.

I was at the point of planning my suicide; had a letter I was working on. The only thing that gave me pause was that I couldn't figure out a way out that wouldn't traumatize others, so I called a suicide hotline and long story short, ended up with a whole slew of doctors. The thing that brought me to that point was my horrible thought life. All I could think about were my many failures, broken relationships, my parental failures and how dire the future looked for my kids and grandkids. My PCP blamed the opioids. My new psychiatrist was upset about the opioids, but nevertheless kept trying to find something that would ease my depression. Most of the meds she tried were awful; I think I must be highly sensitive. Not surprising, given the number of meds that have been tried for the RLS! I'm now on a tiny dose of Mirtazepine (1/4 of a 15 mg pill) and 25 mg. Lamectal. It helps a little, but I have to watch my thoughts. I can't handle upsets anymore. I used to be such a hardy soul! Always glad to help out, full of plans and ideas. Now, I am working hard everyday to keep negative thoughts at bay and be sure I accomplish something. And that's about it. I mean, I exercise and do the normal living chores, but feel pretty lousy most of the time between feeling tired and queasy most of the day.

Today, I got a letter from my neurologist, excusing me from jury duty. I read the letter with dismay. It wasn't just about the difficulty sitting. It also stated that I am being treated with opioids, which would impair my judgement. I've been in a tailspin ever since. I knew my brain was impaired; I have trouble concentrating and remembering basic things. But it cut right into me, to read his letter. Everything I read online points to the way opioids impair judgement and cause permanent brain changes on several levels.

(I had also been taking clonazepam for RLS, which didn't do anything but my neurologist said to keep taking. I started titrating down months ago anyway, and am free of it as of two weeks ago, although still struggling with occasional burning under my skin, and bouts of high anxiety. Ugh. Hate it.)

The pain doctor wants to conduct an epidural. He thinks it will calm my legs. I said okay; what else can I do? I looked on this discussion board and it seems as if an epidural will help for a few weeks, but in the end, may exacerbate the RLS.

The neurologist said that opioid tolerance would be an issue long run. Honestly, I didn't realize that. I thought RLS/WED peeps avoided that, because the pain is a bit different. Then my neurologist said at my last visit, "You may get better, and we can lower the dose of the opioid." I don't know what world he's living in, but that's highly doubtful. It seems as if so many on this discussion board have tried combination therapy or other ways of keeping opioid tolerance at bay. Could you tell me what's worked for you?

I've been trying to claw my way back to having a life again. My husband says things have improved from his perspective, and I think he's right. Maybe in some ways I'll never be the same, I don't know. I would like to have something in my back pocket regarding tolerance, so thanks in advance for any input!

[Rustsmith]

So many things to cover to answer all of your questions.

1. You have already figured out that most of your doctors are not knowledgeable when it comes to treating RLS. At least they haven't fired you yet and have been willing to provide prescriptions. Many of us have not been so lucky. My suggestion is to try educating them by providing copies of these two documents from Mayo. Highlight a few paragraphs that are relevant to your situation and ask for the doctors' opinions. Never say "I found this on the Internet" as they will toss it in the trash as soon as you leave.

https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://www.mayoclinicproceedings.org/a ... X/fulltext

2. Although a few people experience increased tolerance to opioids over time, it is not something that occurs very often. There are people here who have been on the same dose of the opioid that they take for 20 years without needing to increase. What doctors often fail to realize is that we take a fraction of the dose (often only 1/10th) of what they prescribe for chronic pain or to treat those recovering from addiction.

3. Remember that the primary goal of most pain management doctors is to get any patient who is taking an opioid off of that med and on to a form of treatment that does not involve an opioid. That would be fine if RLS was a pain condition that responded to their "alternative" modes of treatment, but it isn't. Even the experts don't know exactly how opioids manage RLS, they just know that opioids work very, very effectively.

4. Psychiatrists often have no idea about RLS. They are used to treating depression, anxiety, suicidal ideation and sleep problems. I was told to go to one at one point and when I informed her that I am allergic to all anti-depressants, her next statement was "Well ... what do you want me to do for you them?" It was all that I could do to keep myself from saying something like "your the doctor, I am paying you to tell me what you can do to help". Needless to say, I never saw her (or any other shrink) again.

5. For those of us who have been through augmentation, opioids are often our only remaining hope. The work well, provided you can 1) find one whose side effects are acceptable to you and 2) you have a doctor who doesn't continually threaten to cut you off. My PCP is in the process of retiring and it took me three weeks to find a providers who was willing to write my prescriptions under the direction of my neurologist (who is a professor at the state university system's medical school. I have also had pharmacies refuse to full prescriptions because RLS isn't on the list of conditions treated by opioids in their reference book.

So, hang in there. At times it seems that the medical establishment hates RLS patients and will do anything to make us simply disappear. Suicide is a problem that isn't frequent, but is far more common than it should be and is often driven by the physicians that are supposed to provide our care. My approach has been to be stubborn and refuse to let them drive me off.

[Valthinking]

I'm really encouraged by your note. I was so glad to read that you know people who have been on the same opioid dose for years. If I get to twenty years on them, that will take me to ninety. That should do it! I appreciate the advice on pain doctors—I'll print out the papers, highlight them and offer them. My healthcare system claims to 'partner' with the Mayo Clinic, so the papers should be relevant to them. (I did offer the new algorithm to my Primary Care Physician, who threw them down and said, "Anyone can write a paper." Which I'm sure that doesn't shock you at all!) I do think she took another look at them, because the next time I saw her, she asked if I was feeling better with the OxyContin and actually seemed sympathetic, but I feel as if I'm in your shoes. At any moment I could get cut off, without backup.

I can't tell what is a side effect from the OxyContin. I'm dizzy and nauseated all day, and have no motivation. I still make myself do things BUT . . . I wish I knew if it's the OxyContin causing it or something else. It's not as if I can get the doctors to try anything else and work with me. Well, maybe once I've printed off the papers and offered them, I'll be able to make some headway. I just feel so fragile! I hate realizing all the things I used to love to do are chores now. Ugh.

That's whack about the psychiatrist! Mine tried so many on me I began to feel like an experimental rat. Sounds as if you've been able to try different opioids and gain a good fit for yourself. How are you feeling these days? What got you here? Love to know if you have time!

Thanks for your clear writing. I don't know how you do it, but it sure looks like brain fog is not a problem for you!

Val

[Rustsmith]

Brain fog is an issue for me, but due to long Covid and not the opioids. I frequently laugh these days when I think back to my high school English teachers who said that I couldn't write. After 40 technical publications, a number of magazine articles and even an interview on the local TV news, I wish I could go back to them now and ask "who can't write?".

As for being a psychiatric lab rat, what the shrinks will NEVER admit is that anti-depressants are only slightly more effective than placebos when it comes to treating depression. So, it isn't surprising that their drugs do not work and this forces them to move from one to another. Those with a shred of ethics will then declare a patient anti-depressant resistant after failing three meds. But that means that the patient has to suffer with untreated depression for months before the doctor admits failure and moves on to other therapies. Most don't want to do that because they don't have the credentials to perform treatments such as TMS, ketamine or EMDR. So, like a lot of neurologists that don't want to prescribe opioids, they simply tell the patient that there are no further options rather than admit that some other provider might be able to provide better help.

[Dr.Placebo]

Hi Valthinking. I read your OP with great interest and sympathy because it sounds so much like my own story. I really empathize with your anxiety and suicidal thoughts. Very few people, I think, realize how truly horrible it is to feel so bad that you want to take your own life. People think that because a person wants to suicide they are wimpy and depressed and sorry for themselves, but what about the cancer patient with incurable disease and a life of suffering? Wanting to die to escape from suffering is not depression, it is desperation and desire for relief of suffering. In fact i think it is anxiety and fear of what is to come with a disease rather than depression that is more likely to drive someone to suicide. I am 62. I, too, am filled with anxiety most days and hours ( I seem to just live one hour to next these days, trying to survive). I, too, think of suicide daily but haven't done it because I love my wife and kids (in their 30's, with stressful lives of their own) and, like you, don't want to traumatized them. I was once very high-functioning and productive (yale undergrad, music, harvard medical school), "full of plans." Now my plans all revolve around what drug I should or shouldn't take, how to get insurance coverage, a doctor, a referral. The only way I can be alert enough to get anything done is to take a small dose of modafinil, but that is like flogging a dead horse. I also used to be very bold, and led an adventurous life, but now just driving to the store is a scary "adventure" due to brain impairment,which , like you, I don't know whether it is due to chronic sleep deprivation, drug side-effects, or drug withdrawal effects. As Steve, rustsmith, said you are fortunate you have a doctor who was willing to prescribe opioids, especially long-acting opioids. I augmented on relatively low doses of DAs and now have symptoms 24/7 even though I have been off DAs for months. I, too, am very sensitive to drugs and seem to have side effects even on low doses. I have a cabinet full of drugs but am fearful of them because i don't know if they help or harm me. I have considering calling a crisis hotline just to get some sort of help but I fear the "help" will just be worse than what i have now. After months of dealing with a bloated, fragmented dysfunctional capitalistic uncaring healthcare system, I was able to get an appointment with the RLS specialist, Dr. Winkelman, but it is not until Nov. 21 and I am not sure I can last that long. I wish you the best. i have done a LOT of reading (and as a doctor I, fortunately or unfortunately, understand what I read) and it sounds like, as rustsmith says, long-acting opioids appear to be the best option for severe RLS with low risk of dose escalation and excessive dependence. i wish you the best and hope you get back your life!
Paul

[Valthinking]

Paul,
I was thinking of printing and posting the sign, 'One day at a time', although one hour at a time would be more like it. And I don't have the zest and energy to actually do it right now. Agreed, people don't understand how wearing all this is on a person. I used to not understand either. I had grit. I had gumption. I didn't give up. It took years but the grit has pretty much disappeared. A good doctor is worth his weight in gold! You've got the appointment. You can do it—you have a light at the end of the tunnel. You KNOW this guy is good.

I waited six months for a neurologist who was supposed to be okay with opioids, according to his affiliated sleep clinic's website. I thought he 'got it'. When I arrived and showed him the Mayo algorithm, he point blank just said, "I don't prescribe opioids. Period. Ever. I can refer you to a pain management specialist. Maybe they will." I was devastated. I tumbled into a deep depression that I'm still fighting.

Your doctor won't say that. You'll get real help.

I have a pharmacy of drugs too. Gabapentin, Pramipexole, Tramadol, Horizant, Pregabalin, Clonazepam, Alprazolam, Tylenol #3 ad nauseam, not to mention a host of antidepressants that don't work. My children gave me things to inject, and syringes to inject them with. One gave me a muscle relaxant. Another wants me to try CBD with THC. Friends have sent me information from their nutritionists, siblings send me articles. All too dear for words, and none of it any help at all.

I'm only on the Oxycontin/Oxycodone, and some Tylenol #3. I am trying to wean off Mirtazepine, which never did a thing but I was told not to stop. I am also on a low dose of Lamotrigine which has at least given me the ability to fight the blackest thoughts. The kicker is that I'm still going through some kind of withdrawal from Clonazepam, although I took the time to titrate down very slowly before stopping completely. It's set me back; I didn't know that withdrawal symptoms from benzodiazepines takes, usually, months to go away. So I have RLS and off-the-charts anxiety (which I NEVER had before) beginning around 3:30 pm every day, until I can take something. I don't have RLS 24/7, though. I wish you didn't either. After hearing Rustsmith's story, I too would never go to emergency. I did call a suicide hotline in the spring. They encouraged me to tell my husband what was going on. (He didn't have a clue and I didn't want him to.) But I ended up telling him. He's been a treasure throughout the past six months; my sister came down from Minnesota because I didn't want my husband to be alone in it. She's another treasure. It's simply not fair that I'm not back to my old self; I owe them that and more, but I just can't make it happen and it is killing me. I don't know if I can be me, or even who that person is anymore, it's been so long since I've felt like myself. I'm trying to adjust my expectations. I have to find a way to live with this. I can't hurt my family. I just can't. I'm just clawing my way somewhere—don't even know where!

I've taken up driving again, just to the store, during the day. I take your point regarding all the meds; what will help, and what will hurt? Like you I'm sensitive even at low doses. I think some of the best emotional advice I've heard, I have a hard time doing. It's when people tell you to be good to yourself. Be gentle with yourself. This is harder than anyone—well, almost anyone—knows. My sister called a psychologist she works with to ask him for input. One of the things he said to her was that keeping enemy prisoners from sleep is a kind of 'soft torture'. Its primary purpose is to make the prisoner compliant, and it works. It helped me to hear that. Confirmed: This is a kind of torture; to be constantly pulled out of sleep and made to pace the floor, exercise, run. And we all do it without a backward glance; it's awful but it's normal. Just shows you the incredible hardiness we have and it's just wrong. So anything you can do to make it easier on yourself, you should. You have to shore yourself up as best you can. God willing, Dr. Winkelman will do the rest. He'll get you to a better place.

I'll be watching your posts, post-Winkelman!
Gratefully,
Val

[Rustsmith]

After hearing Rustsmith's story, I too would never go to emergency. I did call a suicide hotline in the spring.

Val, I am glad that the story of my ER experience helped someone. The experience was even worse that I described, I simply didn't want to scare too many people from getting help for non-RLS situations. I would never want to discourage someone from going to the ER for help for things other than RLS. They helped my wife last year (she was so severely anemic that she was no long lucid) and they treated me acceptably when I went in earlier this year with all the signs of a heart attack (I was fine, but they never determined the cause of the pain, They found that I had no signs of heart disease and then simply sent me home. I had to figure out that it was due to severe anxiety combined with sleep deprivation).

As for the suicide prevention line, I called them once but probably won't bother doing so again. I spoke with a guy for about 20 minutes before he admitted that there was nothing that they could do for me. I then spent the next hour expecting a knock on the door from the proverbial men in short white coats.

[tvssnt468]

I had augmentation from ropinirole and successfully got off of it with the help of a sleep specialist/neurologist I sought. She introduced 5 mg methadone with the option of going up to 10 mg. Fortunately, I've been able to use only 2.5 mg for almost a year. I can sit at night to watch TV, I can sit during the day at meetings and while at work. I have some restlessness at night, but only a fraction of my former movements. I have, however, developed pruritus (unexplained generalized itching) after almost a year on methadone. My doctors are not sure why I have only recently developed itching, and are looking for other causes.

[Valthinking]

tvssnt468, I'm glad to hear that such a small amount of methadone worked! The pruritus is crazy. I've heard that it can be a side effect. I hope they find an alternate reason for it, or some way to alleviate it.

Dr. Silber at the Mayo Clinic told me he holds methadone as a last-ditch med to use when no other opioid does. I have it in my back pocket in case the oxycodone/oxycontin stops working. So far so good, but my son keeps telling me I should get down to 5 mg and water fast for 3-5 days. Love that he wants to help but no way!!

I really hope that pruritus gets under control. Everything else is looking so good for you!

[Rustsmith]

At the last Foundation Patient conference, Dr Earley made the statement that all of the opioids have different side effects and that this was the reason why there were so many different products available to try. If one doesn't work satisfactorily, then try another. The advantage of methadone is that it is a once/day pill, but there is an extended release form of oxy that almost lasts as long.