Wow! The pain is close to being excruciating! I don’t understand why this is happening to me. I could be sleeping, but no! I think I need to come off of this Mirapex and get something else. I know of absolutely no one in my family that had this anywhere. I don’t know how much longer I can take it!
So Painful...: Wow! The pain is close... - Restless Legs Syn...
So Painful...
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49 Replies
•
that sounds unusual, gratitude, although Beady posted recently about her painful rls. I don’t have the painful variety so possibly not the best to comment but I haven’t seen too many describe it as excruciating. I suppose it could be d/a augmentation making everything more intense (which is what it does - though more usually by making the urge to move much more pronounced and/or widespread). It is possible however that you have something else going on at the same time.
• in reply toinvoluntarydancer
Thank you for responding...I appreciate your kindness!
Unfortunately, I know what you’re talking about. Excruciating pain was part of my Augmentation on Pramipexole (Mirapex). I found myself in the ER during one especially painful episode. I was prescribed strong painkillers. Getting off Pramipexole is the only thing that stopped the pain. I’m so sorry!
• in reply to
That’s kind of what I thought! Thank you so much!
• in reply to
You’re welcome! 🙂 I kept a “sleep” diary during part of my Augmentation. I used that not only to record my “sleep” (or lack thereof), but both my uncomfortable sensations and pain on a scale of 1 to 10. I’d be happy to tell you how I laid it out if you want.
beady3• in reply to
Jess don’t you recommend Premopixal
• in reply tobeady3
No, what gives you that impression? I admit I did recommend it to Yakester one time when she was desperate for sleep. She sounded so desperate, so I put myself in her shoes and said what I would've done at that moment in time, but no, I don't recommend.
I know how you feel, my RLS brings an ungodly amount of pain with it. Thankfully opioids are able to deal with it. Many here have used everything from paracetamol up to Morphine and got relief. In the UK and north of Ireland Targinact, (containing Oxycodone/naloxone) is licensed to treat RLS.
If you are unable to get the likes of Targinact there are other alternatives that work well with pain. Both Cannabis and Kratom can work great; I have tried and received tremendous relief from both.
I have spent nights rolling on my floor in agony, at the absolute limit of my ability to cope yet today I have little pain, well from my RLS anyway. Stay strong, there are answers and there are plenty here that know exactly what you are going through and are only a keyboard away.
Take care.
• in reply to
Thank you...
I’m so sorry you’re going through this. It’s Augmentation on the mirapex. I think you realise this and know you have to get off it.
Do start the reduction in mirapex- very slowly as you mentioned last time that you had started a new job and you were having a stressful time with family troubles.
Find a doctor over there who will prescribe opioids to help with the withdrawal. The US foundation might give you a list of good doctors.
There are other meds that will help like Lyrica and OxyContin in low doses.
Jools
• in reply toJoolsg
Thanks so much! Doctors here don’t seem to be as educated on RLS as they seem to be there. Both of my docs have a strict policy against prescribing narcotics and benzos and tell you this up front. I find this discouraging! I feel lost in the confusion and drama. I’m considering a Neurologist even though I don’t have much respect or faith in them through my experience working with them. It’s unfortunate and I’m so sleep deprived! I’m actually getting used to an hour of sleep and then working a 12 hour shift! That’s pathetic...it’s no wonder I have to write everything down lol! I’m going to purchase some Kratom tomorrow as there are a few places here that sell it. I have ordered some Mag spray that should be here tomorrow. I’ve started wearing compression stockings too which seem to help a little as does ice packs! It’s absolutely crazy!! I can’t seem to find any cannabis at this time which totally helps...too bad it’s illegal in the state in which I live. Whew!! It’s great to vent! Thanks for your help and support...it really means a lot! 🌺🙂🌺
Joolsg• in reply to
What state of the US are you in? We might be able to give you the name of a helpful doctor.
Here in England the doctors and neurologists are also quite ignorant about RLS. I had to take my husband with me to the appointment to confirm how horrendous Augmentation and withdrawal was. I also took print outs from the website about opioids for RLS and that they were safe in low doses and non addictive provided there was no history of drug abuse. Eventually my doctor agreed to me opioids after my MS neurologist confirmed it was acceptable. This link might help- it’s from one of the top US hospitals.
mayoclinicproceedings.org/a...
Let’s try to get you the name of a doctor who knows that opioids are useful for RLS.
Sending you positive thoughts
Jools
• in reply toJoolsg
You’re a wonderful person! I’m in the Greenville/Spartanburg area of South Carolina. I have no history of drug abuse and have taken narcotics only after surgery or tooth issues and that’s been a long time ago. I truly appreciate your thoughtfulness! Guess who ended up sleeping all night...Ha!! I’m feeling extremely blessed this morning and can actually see that I’m less swollen in my face and hands! Sleep is a precious thing! I hope you have a great weekend and thanks again for your support and kindness! 😴🌷😴
Mona23• in reply to
One more thing - lots of people on here recommend opioids, and get good results from them. But consider carefully whether or not you want to start down that road.
Mona23• in reply to
Why are you suspicious of neurologists? Maybe whomever you worked with was goofy, but that’s noy usually the case. The one who diagnosed me was fabulous, and the only doc who took me seriously. Please reconsider - neurology is a very well-respected branch of the mdical field, so you should be able to find a good one. The neurologist will most likely test your legs with mild electrical conduction on various points, and can confirm your RLS, or point you in a different direction if necessary.
• in reply toMona23
I’m suspicious because when I worked in the Pediatric ICU, we would need a Neurologist when pronouncing a child brain dead and when they saw mild reflex movement of their extremities, they would start claiming that they were not brain dead. Reflex movement is sometimes present due to life-support measures and has little to do with being alive. When the nuclear blood flow tests show no flow, you basically have your answer. They also perform an apnea test for confirmation. 3 separate and different findings are needed to legally declare brain death to enable intensivists to take the patient off life support. Keeping a brain dead child alive produces horrible outcomes for their sweet little bodies and haunts me to this day. We always had difficulties with the Neurologists who didn’t seem to “get it.” That’s my experience.
marsha2306• in reply to
See if you can locate a Sleep Center near where you live. They would most likely have a knowledgeable neurologist familiar with RLS.
• in reply tomarsha2306
Yes! There’s one at Emory in Atlanta that someone else mentioned. I’m planning on calling them once my insurance kicks in next month. It’s around 3 hours away. Not bad...my legs are flaring up as we speak and it’s only 8:30. I didn’t bring my meds with me here, so it looks like I’ll be standing for dinner!
marsha2306• in reply to
I know the feeling well. I carry a 7 day pill box wherever I go.
It’s the same with me. The pain’s outtasight. The muscle spasms are kind of epileptic. Yoiks. I’m not sure if it’s augmentation as I’m on .18 of Pramipexole, which isn’t huge. The best topups for me are cannabis. Kratom, codeine, Tramadol and whisky. What you’re going through is horrible. So sorry! Would it help taking someone with you to your next medical appointment. The medicos at my practice took a lot more notice when I arrived with my partner. They were jolted into thinking, hey this must be serious. Also, here’s a witness, better be careful. I wish you the very best attention. Let us know what happens.
• in reply torkatt
I’m so sorry that you are suffering also. I know how torturous it is! It just feels like some kind of curse or Karma gone wrong! I find myself thinking while in the midst of the agony, “What have I done to deserve this?” Oh well, I’m still kicking, so...please tell me what you mean by, “better be careful.” I’m curious...
I completely understand your misery and send you lots of love. I am trying pregabalin combined with 30mg of codeine (an opioid) if the pregabalin isn't enough. Beware the codeine though because it is addictive, only use if necessary to help you sleep. Eat plenty of fibre because constipation is a side effect of codeine. Pregabalin works on the nerves so I'm hoping it might help with your pain too. I'm from the UK. Good luck xx
• in reply toDemelz
Thank you so much! I will definitely mention Gabapentin to my doctor at my visit on Tuesday. Codeine is probably a no go, but I will ask!
rls_optimist• in reply to
I join the others in sympathizing with you. You're going through a lot. However, I do want to emphasize what some others here have said about the important role of opioids in getting free of pramipexole. Please do read the link that Jools posted. I'll repost it here:
mayoclinicproceedings.org/a...
The title is "The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome". Many of the coauthors of this important paper are the top RLS experts in the field.
One important finding they bring out is that the danger of addiction is far less than the danger when taking opioids for chronic pain. That's because we take far lower doses for RLS than are used for pain.
They also point to methadone as one of the best options among the opioids. It is as effective as the others, but with lower side effects and less of a "high" than the others. That's why it is used for addiction treatment. I do not want to recommend any treatment in particular. But I do recommend reading this important paper, and perhaps to bring it in with you when you meet with your doctor. Good luck!
• in reply torls_optimist
Thank you so much! Your help and support is greatly appreciated! The people here have given me hope and comfort. It has given me some peace to know that there are others out there that share in my agony...sounds twisted, but true! I was beginning to think that I was just crazy! Thank you again...
Demelz• in reply to
I took 30mg of codeine the first night combined with 75mg of pregabalin. I slept beautifully but had pain in my stomach the next day due to being constipated! I ate lots of fibre and drank pear juice to compensate and felt better in the afternoon! Now I know that 15mg of codeine is probably my limit. I may also take more of the pregabalin, as another suffered does, at about 8.30pm. At the moment I'm on two doses of 75mg, but there seems no point in taking it during the day as I have no RLS then, so 150mg in the evening seems more sensible. I might not need the codeine then!
I hope this post helps someone!
I take mirapex for rls but I also take gabapentin to. I have to really pay attention and listen to my body. My rls isn't just at night. It can happen all day to.it used to go away after a few hours,not anymore.anyways I found a great neurologist and he listens. I can go for car trips now without having to be in torment. I have other health factors that may contribute to the pain like peripheral neuropathy. (IDK if I spelled that right lol) before I started the gabapentin I couldn't even stand to sit and sew. I hated having to add another medicine but now I'm so happy we did. Not that my doses are the magic number but I take .75 mirapex 4 times a day and 300 gabapentin 4 times a day. We tweaked the doses till the pain and rls stopped. I wish you luck.people who don't have rls really don't understand what we go through. I hope you either have or find a great neurologist that will listen to you.
• in reply tonopeno1home
I’m so glad you’re getting relief! My RLS is also a 24-hour a day issue involving my whole body. I have been pushing through/forward and it’s completely exhausting! I’m so happy for you!
nopeno1home• in reply to
Ty .I hope you find it too. Maybe someday they will find a cure. I also cut caffine and sugar down drastically.
• in reply tonopeno1home
Believe it or not, caffeine seems to have the opposite effect on me and 1 cup of coffee helps me at 3:00am while I’m suffering. I could be kidding myself, but who really knows? Cutting out sugar isn’t hard for me since I’m diabetic. I succeed there most of the time! Thanks so much for your input...much appreciated!
That’s a lot of Mirapex - please watch for side effects and augmentation (paradoxical response).
• in reply toMona23
Augmentation has occurred! I’m miserable!
Dear nopeno1home, I'm glad that you're finding some relief. However, I strongly second Mona23's cautionary reply to you. Are you sure about the amount of Mirapex you are taking? You wrote 0.75 mg 4 times a day. If so, that is 3 mg a day, which is SIX TIMES the recommended maximum amount of 0.5 mg per day. How long have you been taking that amount, and how quickly did you get up to that level? You are certain to experience serious augmentation (i.e., the paradoxical worsening of symptoms due to dopamine agonists (DAs) like Mirapex) on that amount, and you may have already done so.
Please talk with your neurologist: ask him/her to look up the recommended maximum for Mirapex while you are there, and discuss strategies for reducing that to no more than 0.5 mg a day. Furthermore, you may need to take a 14-day washout (drug holiday) from Mirapex, to clean it out of your system and reset your dopamine receptors. That will help reduce or eliminate the augmentation. Do NOT try to eliminate the Mirapex all at once. You'll need to taper off over several days or weeks, and if you've been taking Mirapex for some time, you may need the help of an opioid to do the heavy lifting during the washout period. You will require less opioid if you continue taking the gabapentin during this period. Once you're done, you may go back on Mirapex, but no more than 0.5 mg a day. But recognize that once you've augmented on a DA, your chances of augmenting again are higher. Changing to a long-acting DA like rotigotine (Neupro patch) may work for you, as it has less chance of augmentation, but don't go higher than the 3 mg patch per day, which is the recommended maximum.
You will encounter many, many stories of people on this forum who have developed augmentation on DAs like Mirapex, and have gone through the process of getting themselves off. It is no joke, and it will open your eyes to the risks of augmentation that can come from DAs. Best of luck.
wow I had no idea that I was on too much even my pharmacist didn't say anything I'll check the bottle and make sure I typed that right then . I got up to it gradually I didn't just start on it at that level.gonna check bottle right now.
Yep it's .75
I was on .5x4/day for years. At that time I didn’t care that it was too much - it was the only relief I could get, even though it was only partial relief. I finally found a way to get off it that I could tolerate - using CBD/THC. I won’t use opioids, but got off Mirapex by using the CBD/THC - too much at first, then I gradually backed off as I backed off the Mirapex. I went from the 4/day to 2/day because I simply forgot to take it after I had some venous insufficiency corrected. Now I’m on 1/2 tab Mirapex in the afternoon many days but not all days. I sleep 9 out of 10 nights due to the CBD/THC. Hope something is helpful for you.
It gives me even more hope. They found 4 large fibroids in my uterus. I'm wondering if the extra pressure on my spine,like when I was pregnant,is making mine so bad. I will be having hysterectomy and I'm hoping it will change the severity.
Hope the surgery goes well! I’m a firm believer that many little things are more helpful in concert, than a single intervention being expected to carry the entire solution. Not saying a hysterectomy is a little thing; it’s one more thing on the path to wellness, though.
I believe so. Thank you
Drinking tons of water also gives me relief.
• in reply toFluteE
Yes, I do that...no sodas or even juice for me. I’m diabetic and water works best for whatever ails me!! 🙂💧🙂
Sorry to hear about your pain and suffering with restless legs. I too have suffered quite a bit until just recently. I've had restless leg syndrome for 45 years and took mirapex after the first 20 years. It helped somewhat& I took Tramadol along with it. I still had symptoms and they got worse and worse until I finally augmented horribly a few months ago. To cut a long story short I went to a quality Care Center. There are a few of them in the United States and their specialty is restless leg syndrome and other Sleep disorders. The closest one to you is the Emory Clinic Sleep Center in Atlanta Georgia. I found that most neurologists and doctors really don't know what's going on with RLS. And if they do they're too afraid to prescribe opiates in this day and age. But we know opiates may be the last Refuge for many of us. So I went to California and saw a doctor associated with a quality Care Center. He has a 98% success rate with patients with RLS. So for six weeks I've been completely symptom-free. It's like a new life. So I recommend going to The Sleep Center. that may be the only place where you can find Doctors with the knowledge to prescribe what you need.
• in reply toniabxxx
Thank you so much for the great information! I’m so glad your life has improved so dramatically! I want that too...1-3 hours of sleep/night just doesn’t cut it. I’m going to check it out. My health insurance kicks in next month. I’m truly happy for you 🌞
Where in California, please?
Dr Mark Buchfuhrer. Downey, CA. 562-904-1105.
Call for appt. They are very friendly & understanding. He will take good care of you.
Methadone
Dispensed with mirapex & tramadol.
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