Opiods

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Re: Opiods

Postby ViewsAskew » Sat Feb 28, 2015 9:50 pm

It mostly likely will not. BUT - a small number of us do have difficulty, even at a low dose. I've stopped it twice without issue. But, I was extremely ill when I stopped a much lower strength semi-opioid (tramadol) after just 3-4 weeks, when I stopped cold turkey, I landed in the ER. SO....

Hopefully you will not. You can taper or start slowly lengthening the doses - so if you take them every 12 hours, go to every 14. Or if every 24, go to 28. You'll know quickly if you respond negatively.

In terms of what to take, you can try either of the suggested drugs. They don't often work, but they do work for some. If you don't have the book Clinical Management of Restless legs Syndrome, second edition, I highly recommend it because all the possibilities are listed in it. You can start checking them off. At this point you just have to know that it's trial and error. You've been through the things that are most likely to work and you start working down the list.

I'm glad you don't have an autoimmune!

And, I can't remember what other opioids you've tried - tramadol works very well on many people AND often lifts the mood. It wasn't enough alone for me, but I needed 2 to 3 times the amount of methadone you did, so it's possible it would be perfect for you. And, if you tried it, forgive me for not remembering.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

pjmccoy1
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Re: Opiates

Postby pjmccoy1 » Thu Mar 05, 2015 10:33 pm

How long after stopping an opioid do the withdrawal RLS symptoms return to previous RLS symptoms? I know you're not supposed to augment on opiates but I think there is such a thing as opiate RLS withdrawal symptoms too? Anyone familiar with this? Only thing I"m taking is clonazepam which was increased from .5mg to 1mg and it's not covering the symptoms. Before clonazepam was sedating enough to cover/mask bedtime RLS. Now I'm experiencing some pretty mean/ugly bedtime RLS symptoms. In tears from pain last night.
PJ, Heaven Bound

pjmccoy1
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Re: Opioids

Postby pjmccoy1 » Fri Mar 13, 2015 4:08 am

10 days off low dose methadone and last night was horrific. Not just due to the RLS, seems more like pain in my knees and thighs than the creepy crawlies in calves. Anyhow, cried most of the night. And I do not understand why even when I can get the RLS settled with Ibuprofen and OTC Hyland's Restful Legs, I cannot go to sleep. I do not understand this insomnia. Psych and sleep doc increased Clonazepam from .5mg to 1mg which 1.5 years ago in combo with Horizant knocked me out most of the night. Now I don't think anything will get me to sleep. Maybe the Horizant was aiding in sleep more than I realized. And the Bupropion 100sr I am sure is somewhat alerting. I cannot believe that no one can get me to sleep for more than 3 cumulative hours per night. And it's like catnaps, never a deep sleep. I'm beginning to have more and more understanding of how Michael Jackson got into such bad shape. It's horrible. I do not know how I am functioning at work. It's as if my body has adjusted to functioning on 3 hours of sleep. You would think I would collapse at some point but not anymore... Dreading going to bed to toss for 8 hours. And my back and osteoporosis pain is giving me fits too. I guess the low dose methadone was treating some pain I didn't realize had progressed so much.
PJ, Heaven Bound

Rustsmith
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Re: Opiods

Postby Rustsmith » Fri Mar 13, 2015 9:04 am

There is a good chance that the Horizant was helping with your insomnia. There is a research study at Johns Hopkins that is about finished and should be published later this year. The study was designed to investigate the reason why so many of us suffer from insomnia even after the urge-to-move part of WED has been effectively treated using a DA or an opioid. The preliminary information from that study indicates that there is a second neurotransmitter issue in our brains that is different from our dopamine problem. This second neurotransmitter problem is associated with insomnia and a possible treatment would use either Horizant or gabapentin.

Now, whether either of these drugs would work while you are trying to get off of a medication that addresses the dopamine problem is probably an entirely different issue.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Opiods

Postby Polar Bear » Fri Mar 13, 2015 10:43 am

pj, I'm with you in the 'cat-nap-club' and worked for many years having had cat naps that accumulated only 2 or 3 or 4 hours in total, sometimes zero.
I too felt my body was coping on automatic. Then I began to feel more and more overwhelmed, probably as I was getting older also, Retirement was my saviour.......
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

pjmccoy1
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Re: Opiods

Postby pjmccoy1 » Fri Mar 13, 2015 2:27 pm

Steve & Polar,
If you don't mind what WED treatment med's do you use? I may have seen it before but I cannot remember.
PJ, Heaven Bound

Rustsmith
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Re: Opiods

Postby Rustsmith » Fri Mar 13, 2015 8:57 pm

I am currently on a combination treatment using 2mg Neupro patches and 1200mg of gabapentin about a half hour before bedtime. I recently tried Horizant and did not find that it worked any better than generic gabapentin, so I am not about to pay several hundred times as much for no benefit.

With that said, I still have some sleep issues. Dr Ondo has indicated that the next step to address my sleep issues would be to replace the gabapentin with something like clonazepam. As it currently stands, I go to sleep around 10P and get up at 3 to 4A.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Opiods

Postby Polar Bear » Fri Mar 13, 2015 9:53 pm

I have symptoms 24/7 and it was like this long before I started medication.
My medication is Ropinerole taken at doses over the 24 hours. Unfortunately my dose is at what was originally considered the acceptable daily dose and is now deemed to be much too high. I also take Tramadol slow release morning and evening, and supplement with codeine 30/500 at 5pm and 10pm.
It is not ideal because I don't like taking so much medication - however, it does more or less take care of symptoms. Yes, I do sometimes have to be walking around the house or find a chore to do to wait until medication takes effect, but I cope.

Regarding sleep, I take 7.5mg zopiclone at bedtime. There is still a lot of wake time but being retired takes the presssure off. I go to bed around midnight/ 1am. Often when I'm up and down, I find that sleep is better towards morning .... and I may get up at 9, or 10, or even 11. I take what sleep I can, when I can. It might be a total of 3 hours, or on occasion I've got a total of 6 hours which is bliss.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

pjmccoy1
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Re: Opiods

Postby pjmccoy1 » Sat Mar 21, 2015 11:57 pm

Losing my mind with RLS and now increased front thigh pain. 17 days off methadone. I didn't have this kind of pain before I started methadone. Broke down and took Horizant 2 nights ago helped some with RLS and maybe a little sleep. Taking up to 6 Ibuprofen a day and it doesn't help unless take at least 2 at a time. Worse time is around 4:30p.m. but anytime sitting. This thigh pain is even present sometimes when I'm walking around. Is thigh pain part of RLS. I had what I would call aching feeling but this is more intense. Last night broke down and took half 7.5mg Hydrocodone, 3.25mg, (leftover from husband's dental work) and it helped with the pain but only lasted about 5 hours. Took Horizant again tonight at 5p.m. and almost 2 hours later thighs still aching. Guess will take 2 Ibuprofen again. Seriously tempted to take some more methadone again. I don't know what to do. I was on a very, low dose for 3.5 months and it was a tough 2 weeks when I had to come off to see if drying symptoms was medication related. RLS doc out last week. And View, it looks like may be developing the symptoms of early stages of the auto-immune. What are the blasted odds to have 2 rare conditions, RLS and now maybe Sjogrens. And no family history for either. I am dealing with RLS (basically untreated), insomnia, anxiety, refractory depression - using Bupropion SR very low dose. Clonazepam will not get me to sleep or cover RLS. Bupropion no longer covers RLS since stopped low dose pain med. Feeling overwhelmed. Anyhow is the thigh pain a RLS symptom?
PJ, Heaven Bound

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Re: Opiods

Postby Sojourner » Sun Mar 22, 2015 12:44 am

Can't speak for others but I often have what I think/know are wed related symptoms in my calves, thighs, knees, ankles, etc. Now sometime I think I can differentiate these symptoms (particularly in the joints) from overuse/old age type pain by applying some Rx arthritis/anti-inflammatory cream (Voltaren, I think) to the effected area. Often the cream markedly improves the pain in just a very short time. At other times it has no effect. Sometime the same with things like naproxen or ibuprofen. So, for me, I think that the pain can be related to both wed and/or something else like osteoartritis type pain. That may not be at all helpful. But, I would definitely watch taking too much of the anti-inflammatories as they can be pretty rough on the stomach--in addition to all the other junk we are injesting. When, I do have the calf, thigh pain etc. I often sit on the edge of the tub and let warm (but closer to hot) water run down my legs for 10 minutes or so. I typically will read while I do this. I find that this often results in some improvement and makes things bearable or even somewhat comfortable. A while back, my last seen neurologist diagnosed me with "severe, atypical rls." My primary then said she had never seen the diagnosis phrased that way before. But, I think the neuro was just taking into consideration all the different places/locations/feelings the wed related "pain" seemed to manifest. I kinda appreciated that. I'm sorry you are having such a rough go at it right now and sincerely hope you find some peace this night.
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ViewsAskew
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Re: Opiods

Postby ViewsAskew » Sun Mar 22, 2015 5:34 am

Pain is such a tough term. Technically, most experts say that there isn't pain, really - they liken it to being tickled and that over time, if the sensations do not stop, they feel painful.

That said, many people say it darn well hurts. My guess is that we just don't know enough about potential variants OR that we are confusing WED with something still unidentified OR confusing it with things such as neuropathy. But, that is a total guess on my part.

Even if pain was a symptom, it MUST go away when you move to be WED. So, that it's present when you're walking, to me, would indicate that it's possibly something else.

In terms of the AI - I think a lot of us have pretty weird physical stuff going on. If WED is often secondary to inflammation, it would make sense that any type of inflammation could cause it and that is would go hand in hand with WED. 70 percent of dialysis patients have WED. About 35% of celiac patients do. A higher than normal percentage of diabetics, MS patients, and many others have it.

I have had PLMs since I was a toddler. I had some sort of irritable bowel stuff going on as a teen, along with WED. Then as a young adult I got PCOS. I also have an irritable bladder (no alcohol, no caffeine, no acids, and the list goes on). I can't eat some foods without instant issues. I had chronic appendicitis in my late 30's - it took ten months to figure it out and I almost died. They had to remove my appendix (which had perforated and was massively deformed), secum, and a much of my ascending colon, hence the food issues today. I have two trigger fingers, chondromalacia in one knee (yet another chronic, but not horrible condition), and myofascial trigger points in multiple parts of my body. The ones in my neck have mimicked or caused migraines for over 20 years off and on. I seem to get depression (that I GREATLY minimize and do not want to admit) easily as a secondary symptom of other things - for example I have to take at least 5000 IUs of vitamin D a day to prevent secondary chronic depression, I am affected tremendously by the lack of light in the winter, and almost all the medications we take can make me depressed.

None of these things are deadly and many of them are just a nuisance, but I sure am tired of having so many weird things. And, I hear you - what are the odds? And why some of us?

And, and almost NEVER write all of this down at one time because it makes me feel like a total freak.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Opiods

Postby Polar Bear » Sun Mar 22, 2015 10:45 am

I also have the aches but not just in the thighs. It seems that sometimes I could not find a spot on my body to press a finger where it did not ache.
As I am diagnosed with osteoarthritis and fibromyalgia, I generally put the aching symptoms down as one of those.

Two nights ago our little granddaughter needed picked up from dance class, her mum had to deliver her dad to a meeting in the city- taking younger toddler with her in the car, grandad also had a meeting. I was available but oh dear.... was so full of aches I didn't know how I was going to make the 5 minute drive to the location, stand for possibly 15 minutes until class decided it was finish time, and then drive home. So, smile was pasted on...I could have wept....
An hour later granddaughter was picked up from my home by her mum, It was an hour that felt like eternity.

I also take an anti depressant.... to anyone else I am not obviously depressed, but it is so hard sometimes to find enthusiasm when sleep deprived, exhausted, sore all over, WED symptoms ready to bounce at any given moment. Sometimes I dream where my legs won't work and I can't get the energy to make them go up the stairs.

Of course then there is the tummy/nausea which isn't helped by all the necessary medications.
Doctor says to use ibuprofen for the aches, rheumy says don't touch ibuprofen.

Sorry to appear to ramble here,
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

pjmccoy1
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Re: Opiods

Postby pjmccoy1 » Sun Mar 22, 2015 8:49 pm

I do not understand. There are no more words. You all are dealing and surviving much better than I am. I guess, maybe over time, you learn. I recently read that sometimes fighting it makes it worse, meaning fighting the fact you have a chronic disease/syndrome, rather than accepting the truth/reality of your condition. I am still in the "fighting/denial" stage. But in my twisted mind, just submitting is likened to something more horrific. Like being violated and not fighting back. Anyhow, I will talk with GYN next week for hormone levels and RLS doc and then my blasted psychiatrist. If I may ask, Polar Bear, what anti depressant do you take and does it make your RLS worse? My next adventure in "hell" (excuse my language), I now have to go through 8-10 psychotherapy sessions in order for insurance to cover a new depression treatment (TMS). I don't have much energy to do anything but go to work which is not an option because need income and need insurance to keep all the specialist paid up... But alas, I will go. So I am going to psychotherapy to "fail" so I can see if I can get TMS Depression treatment approved as recommended by both Psychiatrist and RLS Sleep physician. View & Polar you two are so strong. I wish I was stronger. I have what I thought was a strong faith foundation, but the last 18 months, it has been put through the test. Refiner's fire one would say, but I am feeling singed all over. There are only a few embers left of the ashes of my faith. But I am NOT letting go of that or I won't be able to function. Heaven looks better every day. And at least I know when I get up each morning, I am one day closer to Heaven. Blessings to you all. And just so you know, every night when I'm tossing in the bed from either insomnia or RLS, I am praying for View, Polar Bear, Nightdancer, Sleepless Nights, Joanie, Jake's Mom, Steve in TX and all the other RLS survivors.
PJ, Heaven Bound

Polar Bear
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Re: Opiods

Postby Polar Bear » Sun Mar 22, 2015 11:23 pm

pj - I use the antidepressant Citalopram and take 20mg nightly. I'm not aware of it affecting my WED symptoms. But I do take quite a bit of medication to deal with the WED symptoms and to try and deal with the insomnia.... there's not a lot of success with the insomnia.

You say that I (along with Views) am strong. I don't know that I am strong but I do indeed manage to keep going because there is much that I have to be grateful for. That doesn't mean that I don't also get frustrated and down in the dumps.

Here in the UK with our healthcare system our doctor will decide/discuss/prescribe a particular medication which will be from an approved list. We do not have to go through any assessments to convince an insurance company to cover our medication. (I am speaking generally because of course there are many in UK who choose to also have private health care). This must be a dreadful burden and cannot help your frame of mind.

Thank you for your good wishes and thoughts.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Mon Mar 23, 2015 3:23 pm

pjmccoy1 wrote:I do not understand. There are no more words. You all are dealing and surviving much better than I am. I guess, maybe over time, you learn. I recently read that sometimes fighting it makes it worse, meaning fighting the fact you have a chronic disease/syndrome, rather than accepting the truth/reality of your condition. I am still in the "fighting/denial" stage. But in my twisted mind, just submitting is likened to something more horrific. Like being violated and not fighting back. Anyhow, I will talk with GYN next week for hormone levels and RLS doc and then my blasted psychiatrist. If I may ask, Polar Bear, what anti depressant do you take and does it make your RLS worse? My next adventure in "hell" (excuse my language), I now have to go through 8-10 psychotherapy sessions in order for insurance to cover a new depression treatment (TMS). I don't have much energy to do anything but go to work which is not an option because need income and need insurance to keep all the specialist paid up... But alas, I will go. So I am going to psychotherapy to "fail" so I can see if I can get TMS Depression treatment approved as recommended by both Psychiatrist and RLS Sleep physician. View & Polar you two are so strong. I wish I was stronger. I have what I thought was a strong faith foundation, but the last 18 months, it has been put through the test. Refiner's fire one would say, but I am feeling singed all over. There are only a few embers left of the ashes of my faith. But I am NOT letting go of that or I won't be able to function. Heaven looks better every day. And at least I know when I get up each morning, I am one day closer to Heaven. Blessings to you all. And just so you know, every night when I'm tossing in the bed from either insomnia or RLS, I am praying for View, Polar Bear, Nightdancer, Sleepless Nights, Joanie, Jake's Mom, Steve in TX and all the other RLS survivors.


Without going into lots of detail, I spent quite a bit of time in therapy, 12 step groups, and doing much person work when I was in my twenties, dealing with things that happened to me as a child. I quickly learned that none of us handles things the same way, that there are vast differences in how our psyches are injured, and how that causes pain in our everyday lives. I've heard people tell stories that you have to wonder how anyone could get through that, yet the person telling the stories was doing fine. I've seen other people have things happen that was a small percentage of that, yet they were incapacitated. Some of us seem to have a much easier time finding the positive (there is preliminary research that this is genetic); others of us seem to need to wallow in our anger and grief.

Mostly, I learned that you can't ever compare yourself to anyone else. Some of us may feel we can get through anything; others of us feel that even a gentle breeze might blow us over the edge. The only thing we can do is work our own problems, do our best to deal with them, and find ways that are helpful to live our lives in a way that has meaning.

Beth and I have often talked of acceptance. It's very much as if we go through the stages of grief (as in death and dying) when faced with such diseases. We bargain, we fight, we get depressed....ultimately most of us either accept it or we keep repeating the fight against it as if the needle was stuck on the record. I've thought I've accepted it many, many times, only to find out I hadn't. For whatever reason, some of us handle acceptance better than others or get there without trashing about so much.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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