New-Asked to post about treatments

[RestlessNan]

I'm in a state of having too many directions to turn to but not in the direction where I should be heading heading yet. I've met with my primary who I've seen the most over time but divided up for a few months while he was on leave and I was in a different hosp for Pulmonary emboli. Back now to my old clinic where he is and is getting caught up with PE and RLS and is open to learn more about RLS and why I want to get into Mayo and where I'm leaving off with the neurologist who I believe has done me wrong. Of course this provider has some reservations about taking over the opioid part of this now that I'll probably be left high and dry by the neurologist when I formally separate. BTW, did I mention that I'm off the ropinirole and neupro as of 12 days ago and am barely getting by with dopamine 5mg x4 per day. Life is pretty miserable on this course and Neuro isn't adding anything. How do I break off with him and fill the gap. I have no idea how long the review for an appt will take. I've been very transparent, can someone be transparent with me?? I need some help and hope.

[RestlessNan]

I lost my post.

[ViewsAskew]

I'm in a state of having too many directions to turn to but not in the direction where I should be heading heading yet. I've met with my primary who I've seen the most over time but divided up for a few months while he was on leave and I was in a different hosp for Pulmonary emboli. Back now to my old clinic where he is and is getting caught up with PE and RLS and is open to learn more about RLS and why I want to get into Mayo and where I'm leaving off with the neurologist who I believe has done me wrong. Of course this provider has some reservations about taking over the opioid part of this now that I'll probably be left high and dry by the neurologist when I formally separate. BTW, did I mention that I'm off the ropinirole and neupro as of 12 days ago and am barely getting by with dopamine 5mg x4 per day. Life is pretty miserable on this course and Neuro isn't adding anything. How do I break off with him and fill the gap. I have no idea how long the review for an appt will take. I've been very transparent, can someone be transparent with me?? I need some help and hope.

This is such a difficult place to be. I've tried being honest and had it backfire and have had it work. Some words seem best to avoid - don't ever say you feel depressed, for example.

What have you shared with your provider about RLS/WED?

[RestlessNan]

Wow, my state of mind was not good when I last posted about 10 days ago. I wrote I was on "dopamine 5mg", Methadone is what I meant. It's really not a good opioid for me. I'm using it as needed, 5mg at bedtime if I'm symptom free or have minimal symptoms. 10mg if the pain has gotten ahead of me. If the 5 or 10mg doesn't take away the pain, I repeat it with 5mg. I feel so ”drugged" if I repeat it, I end up sleeping most of the next day. I find myself getting more weak. I asked the neuro for a change of meds. The response through his asst was that he's not changing anything, we'll have a televisit in about 10 days. Hmmm... But, good news! The referral has been sent to Mayo, 5 days ago!!! Anyone know how long the review process takes? BTW, my pharmacy has made sure I have Narcan on hand, good idea. Sir, who was just to the VA, my heart goes out to you as you go through the tapering process. I really had to set up my own rate after being set up to go from 12 mg of Requip to a planned target of 1-2mg in 10 weeks, with the help of neurontin and Methadone. I couldn't tolerate the neurontin and the Methadone was prescribed in "skimpy" amounts. Now 7 months later I'm off the Requip and the Neupro and only using the Methadone as I mentioned. But, there's no plan in place unless I get into Mayo's RLS care. Best wishes to you!

[ViewsAskew]

Wow, my state of mind was not good when I last posted about 10 days ago. I wrote I was on "dopamine 5mg", Methadone is what I meant. It's really not a good opioid for me. I'm using it as needed, 5mg at bedtime if I'm symptom free or have minimal symptoms. 10mg if the pain has gotten ahead of me. If the 5 or 10mg doesn't take away the pain, I repeat it with 5mg. I feel so ”drugged" if I repeat it, I end up sleeping most of the next day. I find myself getting more weak. I asked the neuro for a change of meds. The response through his asst was that he's not changing anything, we'll have a televisit in about 10 days. Hmmm... But, good news! The referral has been sent to Mayo, 5 days ago!!! Anyone know how long the review process takes? BTW, my pharmacy has made sure I have Narcan on hand, good idea. Sir, who was just to the VA, my heart goes out to you as you go through the tapering process. I really had to set up my own rate after being set up to go from 12 mg of Requip to a planned target of 1-2mg in 10 weeks, with the help of neurontin and Methadone. I couldn't tolerate the neurontin and the Methadone was prescribed in "skimpy" amounts. Now 7 months later I'm off the Requip and the Neupro and only using the Methadone as I mentioned. But, there's no plan in place unless I get into Mayo's RLS care. Best wishes to you!

Methadone is not a good opioid to take as needed - it has a very long half life and takes at least 3-4 hours to fully get into your system - that is a long time to have symptoms. A shorter half-life opioid would be much better if they would give you one.

I hope you hear soon about Mayo.

[RestlessNan]

Thank you Ann. The long half life was beginning to dawn on me and I'm glad you brought that up. Percocet used to to work well for the RLS and other chronic pain that I have and the dose stayed fairly steady even with the augmentation occuring, adding and extra tablet was enough to get me over a hump without sending me to the land of nod through the next day. But the neuro in his great wisdom discontinued the oxycodone and changed it to Methadone without explaining why. Communication is very limited especially when his preferred method is messaging through my chart. I'm curious, what communication method is do you all use with your provider and how is the response? Thank you. Nan

[Rustsmith]

Nan, every neurologist that I have seen, including the one who was clueless about everything, has relied upon discussion during appointments. When I first saw my current neuro, we talked about various treatment option for about an hour because I was highly augmented at the time. I proposed methadone to her, which she said as a good choice, but then asked me about how I felt about several other options. When we finished, I realized that she had been testing my knowledge of RLS rather than seriously proposing these other treatment. Ever since Covid, my appointments have been by telemedicine. We are able to do that because we are both in the same state and the state made telemed appointments legal for us. That has been great because she is about 70 miles away. And, if I forget something, I can still review her notes on the computer.

[RestlessNan]

I hope you hear soon about Mayo.
Mayo called today, they were missing an important piece of information. She said it would go to the review board after the record gets there and then the physician coordinator. I think that's what she said, I'm so zoned out. But I got on the phone and called records at the clinic and she was going to send it right away to the number I was given.I hope this means it's very close so we can make further plans for how long we may possibly be there. My dogs need to be considered too as they are part of the troops getting me through this.

I can't help but think how much I feel like I did last summer the first weeks when I began tapering. So tired, no sleep and so much leg pain, besides being so empty headed. The best I've felt is after Christmas when I was holding on to those last couple of milligrams of meds, I actually had some pain free days when I performed like a spouse to my spouse and my house, and enjoyed some time being a grandma and a friend. But, I didn't know how much would change when I let go of that..last..little..bit..of..ropinirole and neupro. I've been wrestling with the methadone, I can't make it work for me. This overwhelming part of it's taking away my ability to stay awake except for some random periods, like right now, when I'm in control, and that's with the aid of 4 oz of CocaCola, I'm the Boss. Then the sun goes down. Last night I took the methadone 10mg at 8pm, and I was so overwhelmingly tired that I went to bed. And there was a shift! My legs started to ache fiercely and as soon as I should have been comfy in bed, I was wide awake. No where was the pain reliever and the drowsiness maker? It wasn't around. 9pm: Awake and in pain. 10pm: Awake and in pain 11pm: Awake and in pain. I repeated the 10g of methadone, took my other bedtime meds. 12mn: Awake and in pain. 1a, 2am, 3am on until 6am, you've guessed it, my legs are simmering down and I was dozing off, but I had to get up to the bathroom. I couldn't doze off, I wasn't having much pain, so I enjoyed the moment by having scrambled eggs made by my husband. And now it's 4pm. Since 6am, I've dozed or slept hard a total of about 5 hrs. I wandered/stumbled around the house the rest of the time not being much of a contributor to society. You may be thinking as my spouse does, "How do you expect to sleep at night when you sleep all day?" My response is: "I have to sleep sometime, the sleep isn't voluntary!" Folks there's something wrong here. I'm not in pain right now, that's wonderful!!! But the sun in hanging low. What should I do different??? Sorry to take up so much space, this is somewhat therapeutic for me. Anyone else having similar experiences? I looking to you for input.

[Rustsmith]

I have never had pain with my RLS, but I did have issues with methadone when I first started taking it. It would keep me awake for 6 to 8 hrs. Some of us refer to that side effect as "Alerting" because you feel dead tired by are wide awake. I resolved that problem by shifting the time that I would take the methadone. Instead of taking it at bedtime as directed by my doctor, I started taking it before lunch so that the alerting side effect had worn off by bedtime. I also take gabapentin and take that at bedtime since it does help me fall asleep. On the nights when my legs act up when I go to bed or when I cannot fall asleep due to insomnia, I get up and soak my legs in a tub of hot water until I feel like I will be able to sleep if I go to bed after drying off. Usually, that works. But every RLS case is different, so my workaround may not help you.

[RestlessNan]

Hi Steve, I started a reply to you and my tablet went wonky and I had some odd keyboard. I was saying that I missed the statement about methadone keeping you awake early on when you were taking it. That's exactly what's happened with me. I've gotten fairly good pain relief but I haven't slept a normal night for about 6 weeks or more, it's like I have a bunch of sleepy calories I need to burn. And I've said this before, I've had it said to me, if you sleep all day, how do you expect to sleep all night. My reply is,"I have to sleep sometime". I had a televisit with the neurologist this past Monday. I told him that the methadone has helped my legs settle down some but it's causing insomnia, he kind of looked at me cross eyed and I said I'd read that several places. We chatted a few more words and he proceeded to cut the methadone by 5mg!!!! I didn't say it totally took the pain away, I said it caused insomnia. Then, he wants me to have some IV iron, he wants my primary provider to arrange it. She'll have to send me to a hematologist to get that set up, another provider. He should have a way to set this up if he's dealing with RLS on a regular basis.?????? He's noted through the notes on my Chart that I'm trying to get into Mayo. Well, now it's out in the open.

So the same day as the visit with him, there's a note on My Chart, sent to the PA who sent my referral to Mayo, from a sleep center Dr., they turned down my referral to be seen. From what I understand is that they feel I'm receiving the right care and they can't do anymore. Many tears....
But, I've written a letter on my behalf, that's the least I can do, right?
I wrote a bit on the board regarding Vit. D. I know a bit about that therefore I thought I'd add to the confusion. Thanks for listening. N

[ViewsAskew]

Hi Steve, I started a reply to you and my tablet went wonky and I had some odd keyboard. I was saying that I missed the statement about methadone keeping you awake early on when you were taking it. That's exactly what's happened with me. I've gotten fairly good pain relief but I haven't slept a normal night for about 6 weeks or more, it's like I have a bunch of sleepy calories I need to burn. And I've said this before, I've had it said to me, if you sleep all day, how do you expect to sleep all night. My reply is,"I have to sleep sometime". I had a televisit with the neurologist this past Monday. I told him that the methadone has helped my legs settle down some but it's causing insomnia, he kind of looked at me cross eyed and I said I'd read that several places. We chatted a few more words and he proceeded to cut the methadone by 5mg!!!! I didn't say it totally took the pain away, I said it caused insomnia. Then, he wants me to have some IV iron, he wants my primary provider to arrange it. She'll have to send me to a hematologist to get that set up, another provider. He should have a way to set this up if he's dealing with RLS on a regular basis.?????? He's noted through the notes on my Chart that I'm trying to get into Mayo. Well, now it's out in the open.

So the same day as the visit with him, there's a note on My Chart, sent to the PA who sent my referral to Mayo, from a sleep center Dr., they turned down my referral to be seen. From what I understand is that they feel I'm receiving the right care and they can't do anymore. Many tears....
But, I've written a letter on my behalf, that's the least I can do, right?
I wrote a bit on the board regarding Vit. D. I know a bit about that therefore I thought I'd add to the confusion. Thanks for listening. N

I can hear how upset and frustrated you are. This can be a tough road, can't it?