No progress yet

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leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

No progress yet

Postby leggo_my_legs » Thu Nov 03, 2016 4:48 am

Not feeling well. Wake up and poor doggie is on the farthest corner of the bed, as far away from me as he can get.

Today again I woke up so tired I wanted to cry. I felt like I got about 45 min of sleep total, though I was asleep all night. The Horizant made me dry heave even with zofran so I'm not in a hurry to try that again.

I still have the neupro patch samples in my arsenal to try. I will either try it tonight or on the weekend bc I'm afraid it will make me too groggy during the day. I keep saying I'll try it but I keep not trying it bc there's never a good time. I don't want to try it tonight bc I'm about to go to bed and I'm afraid of having a reaction in my sleep. I want to try it earlier in the evening so I can get a sense if I have a reaction.

I'm a bit medically traumatized by a med that caused my liver enzymes to spike a few years ago, discovered by luck on routine labs, I could have gone into liver failure. So now I'm always creeped out by new meds.

I'm resorting to trying to medicate myself at bedtime with leftover tramadol and norco, which I am about to run out of. I just want some help, no more of this trial and error crap. Mentally I feel I can't take much more of it. I have no social life. I just go to work, do a crappy job, eat a lot of sugar and caffeine to try to prop myself up, and come home thankful to have made it through another day of work. My nutrition is poor. I don't talk to my friends as much. I just don't have energy for anything. I don't know why I'm not having better luck with any of the meds. My body tends to have weird reactions to things. I just never feel rested. I hate it. It's its own kind of torture.

legsbestill
Posts: 328
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Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Thu Nov 03, 2016 9:37 pm

You poor thing. It sounds like you need to sound your problems off a good medical expert. Have you tried Dr. Buchfuhrer?

It is yet another awful aspect of this condition that it is difficult to arrive at an acceptible drug routine and it does seem to be necessary to keep trying different combinations. I wish you all luck with finding a good time to try neupro and hope you find something that works. Do bear in mind that most of the acknowledged experts will say that there is a workable solution out there for the vast majority of us poor sufferers. My long-suffering husband persistently repeats this to me and I really do find it a comfort.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Fri Nov 04, 2016 4:08 am

legs, thanks. I haven't yet sought expert care because I'm wary of being seen as jumping the gun by my doctor...If the neupro doesn't work, and if she doesn't have anything else for me, then I will move on to that. My hope is that she would progress to pain meds but I don't know.

I was finally successful in drugging myself to sleep last night with the tramadol. I took 75 mg at bedtime and then 25 mg when I woke up in the middle of the night. I think I woke up twice in the night.

The first time I woke up, it was 3 hrs after falling asleep, and I felt more rested than I usually feel after a full night! So I must have slept very deeply. It was a great feeling! I also woke up with my cpap on and my doggie still by my side, both good signs of sound sleep.

The tramadol was very effective, except I usually don't wake up in the night. I actually think my body might have thought it was time to wake up bc of how rested I felt. Butanyway the tramadol causes me some other issues so I can't take it all the time.

Thanks again for your kind reply, I felt so done with it all last night.

ViewsAskew
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Re: No progress yet

Postby ViewsAskew » Fri Nov 04, 2016 7:51 am

Oh, I feel so badly for you. I've been there and it just sucks. Just reading your post made me flashback to some awful times. The good news is that they are mostly in my past, so it's very likely you'll look back one day, too. That doesn't help a bit at the moment, thought, does it?

There is a very fine line that we have to traverse - we need to push, but not too hard. If we don't push our doctors, we can go through this for eons - or it feels that way. But, if we push too hard, we can find ourselves out of a doctor and with no one to advocate for us. With some docs, you can be emotional and they finally get just how tired you are. With others, they think you need a psych eval (truly). How hard to push, what to say, etc. is different for each doc, leaving us, in our extremely sleep deprived state, to try and ferret it all out.

So glad you did sleep well last night. I wonder - since you are so sensitive and you've had such strong reactions, do you think your doc would think you are jumping the gun? You haven't slept, you are exhausted, you need some sleep and now!Is there any way you could frame it that she'd listen and help you get to a specialist? Or do you want/need her to move to opioids rather than seeing a specialist?
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.

debbluebird
Posts: 1590
Joined: Mon May 21, 2012 3:27 pm

Re: No progress yet

Postby debbluebird » Fri Nov 04, 2016 7:32 pm

You might also try to cut back on Caffeine. I can't have any, but that was several years in the making. First I stopped it at night, then only had some in the morning, then went to intermittent and now, none.
Good luck.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Sat Nov 05, 2016 3:19 am

ViewsAskew wrote: There is a very fine line that we have to traverse - we need to push, but not too hard. If we don't push our doctors, we can go through this for eons - or it feels that way. But, if we push too hard, we can find ourselves out of a doctor and with no one to advocate for us. With some docs, you can be emotional and they finally get just how tired you are. With others, they think you need a psych eval (truly). How hard to push, what to say, etc. is different for each doc, leaving us, in our extremely sleep deprived state, to try and ferret it all


OMG! You are so articulate!!! That is exactly what I am going through. As a personality type, I tend to be pretty emotional and expressive and when I'm sleep deprived even more so. I made some mistakes with a previous PCP in being my unedited self with her, and she just seemed to find me to be distasteful and thought I was crazy so since then I've tried to be more conservative with what I share and how I share it with the MDs.

Maybe I should just email my sleep doc and express my concerns. It is super frustrating for me to feel that pain meds would work with a more acceptable side effect profile to me, but to not be able to come right out and ask for it. Instead to play dumb and try all these things that don't seem to be working and that make me feel like crap and miserable just to prove a point. I'm probably not even trying them long enough either bc I don't think they'll work.

I've been considering calling to find out if I need a referral to see Dr. B. I kind of do just want her to give me opioids bc I know it will work. I'm not opposed to seeing a specialist either.

I think, overall, I just want to be done with the 'try different stuff and feel like crap' stage. :x I know I'm being impatient.
Last edited by leggo_my_legs on Sat Nov 05, 2016 3:24 am, edited 1 time in total.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Sat Nov 05, 2016 3:21 am

deb,

Thanks, yes I do need to stop the caffeine. Maybe I'll try it in stages like you, that's a good idea.

kcrowley
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Re: No progress yet

Postby kcrowley » Sat Nov 05, 2016 3:54 am

I hope things are getting better for you!

It is 11:30PM EST and I am reading and responding to the RLS forum boards and as I am typing I am feeling so terrible for everyone who is up because they are having RLS symptoms. The irony is that I am up because my RLS sufferer (my 8-year-old) is sleeping soundly (thanks in part to medication and Relaxis) and I am so used to be awake at this hour that I can't sleep...go figure...

I will add my two cents for what it is worth about doctors from my experience. I agree with ViewsAskew...it is a very fine line to traverse with doctors and can be very delicate at times. But lately, I am over being delicate. For me as a parent, after being told I was the crazy one when it came to my daughter, I got to the point where I push and if you do not like what I am saying then I will find another doctor and another and another (can you tell I went through a couple over the years!) Granted, I have the luxury of living outside of NYC. But this does not stop me from considering doctors much further away than my 30-minute car ride dab smack in the middle of Manhattan and a stone throw away from some of the most recognizable hospitals in the world. When I was looking for a doctor for my daughter and no one would believe me, I remember how desperate I felt all the time (I can not imagine having RLS, it has been hard enough watching my child suffer with it and feeling hopeless). My family thought I was crazy, my husband all but gave up on me and my daughter opting for sleep (in his mind there was little reason for us both to be up with her). Even my mother and mother-in-law told me that I was overthinking her symptoms (and are both retired nurses).

Even with no family support and the feeling that it was her and I against the world, I opted for advocating (sometimes loudly) until someone was ready to hear me say "I am absolutely exhausted...I wanted to have three children but the thought of having a 5-year-old and an infant up at night was out of the question!!!! So please fix my child!" I got lucky. A doctor finally listened to me crying, literally crying, as my then 5-year-old colored nicely at a little table making the notion that she was cranky and not sleeping virtually impossible to believe. I am now of the mindset that there are enough doctors out there that if you do not want to help me, I will find someone who will. With the amount of money, it costs to see a doctor, I am over giving doctors to many chances. In my line of work if I do not keep my clients happy they will find someone who will...I take the same approach with doctors these days.
Mother of a 8 year old with RLS/WED and Insomnia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Think Different!

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Sat Nov 05, 2016 8:09 am

I hear you. It might be time for me to push back, as they say. I should not have to suffer unnecessary side effects because others want to pass judgment on the meds that may be the most helpful for me?! Doctors need to deal with their own fears and not put them on the patient.

Who is to say that an opioid is worse than neupro, which can cause high blood pressure and risk falling asleep at any time without warning. Doctors need better raining on how to spot addicts instead of assuming everyone is one. Meanwhile the addicts still manage to get their fix anyway despite whatever laws and guidelines while the legitimate people suffer.

Ok I know I've said it before, sorry. I need to find a patient rights movement!

I need more action and less rant. I admit to being scared to act for fear of making my situation worse ie "med seeking." But I'm starting to convince myself.

Rustsmith
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Re: No progress yet

Postby Rustsmith » Sat Nov 05, 2016 11:46 am

I absolutely agree with kcrowley about continuing to look until you find a doctor who understands our problems. My first neurologist never did understand what I was going through. I complained about my severe RLS issues for over six years (she was treating my migraines) and not once did she do anything other than order an EEG and prescribe me a variety of different sleeping pills that didn't work. Once I gave up and fired her, I was fortunate enough to find out about the Foundation's Quality Care system and one of the doctors was in my town.

That doctor put me on Neupro (after augmenting on pramipexole). It worked well for me once I learned which parts of my body were so sensitive that I had the itching and rash problems. But I augmented on Neupro after 15 months.

leggo_my_legs, once I augmented on Neupro my doctor told me that opiates were my only hope (I was already taking 1200mg gabapentin for my migraines). That was about the time that I moved to Colorado. Due to a local epidemic of prescription drug abuse, no doctor in my town was willing (or sometimes allowed to) prescribe an opiate for RLS. I was fortunate to find out that the doctors at the state medical school not only know how to treat RLS, but also are researching RLS. As a result, they understood what I needed and had not problems writing prescriptions for an opiate. The only problem is that they are 100 miles (each way) away. I have also found that due to the local drug problem, no pharmacy in town is willing to fill my prescriptions. They use the flimsy excuse that opiates are not on the FDA's list of drugs used to treat RLS, even though I am standing there with a perfectly legal prescription. Fortunately, the mail order pharmacy that my insurance prefers that I use has been quite willing to fill my prescriptions.

Getting off of pramipexole and Neupro and onto an opiate has completely changed my RLS life. I still have occasional bad nights and I cannot sleep much more than 6 hrs each night, but things are SO much better than before. As others have said, the opiates have saved my life. Yes, there can be issues, but it is far better to get past the "drug seeker"/"addict" reactions from medical professionals and find someone who can return your life back as close to "normal" for everyone else as those of us with RLS can expect.
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.

ViewsAskew
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Posts: 14650
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Location: Chicago

Re: No progress yet

Postby ViewsAskew » Sat Nov 05, 2016 9:01 pm

Well said, kcrowley! The only reason I am more cautious at times is that some of our members who've broken down in tears have been forced into a psych eval. When I did it, my doctor believed me. I think I was still rational enough behind the tears that he just saw a very tired person. But there are times when I have depression or anxiety - if I'd had tears during one of those episodes, not sure I would have had the same response.

Definitely push until you find someone. No question. Just be careful HOW you push. I've seen over 20 doctors in the last 12 years. Amazing when I think of that. I've been "fired" by at least two and refused to be treated by another two. I just hope none of that is on a permanent record somewhere...

And, when you get tired of pushing and it seems you can't find anyone? Beg, borrow or whatever to get to one of the Foundation-approved centers. Scraping together the money to see Dr. Buchfuhrer - the flight, the payment since I had no insurance, a rental car, etc - wasn't easy. I was out of work because of RLS and money was very tight. But it was the best thing I ever did in terms of advocating for my health. Truly.
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.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Sun Nov 06, 2016 4:18 am

Steve,

Makes me mad that you weren't able to fill your rx locally, that's crazy! Glad you were able to get it through the mail and that you found a good doctor. So sorry for all that lost quality of life during those six years. Truly awful.

Ann, thanks again for your support. If my doctor declines an opioid I will be on my way to a quality care center.

This is such a wonderful site. I would be so lost without it. Thank you all so much. Feeling understood, validated, and most importantly not judged, is wonderful.

I'm doing semi ok for the past few nights only because I've just decided to take the tramadol. But next week I'm going to make an appt with my MD and talk to her. I will also call to find out if I need a referral to see dr. b.

badnights
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Location: Northwest Territories, Canada

Re: No progress yet - incredible thread

Postby badnights » Sun Nov 06, 2016 6:08 am

This Topic is incredible. What well-written summaries of the problems caused by doctors ignorant of WED/RLS and the ludicrousness of us being guinea pigs for medications we know aren't working, just to make the doctor feel better. These things have been said over and over again on this board, but your posts just sum it all up so well!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
Posts: 328
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Sun Nov 06, 2016 5:30 pm

Viewsaskew and Badnights have some incredibly articulate posts about the approach to adopt with pcps when looking for opiates. They are dotted through the boards. It would be worth having a look through before your next medical appointment.

I hope things are improving for you. Have you tried neupro yet? I tried it briefly a few weeks ago but didn't find it particularly effective. However I was very negatively disposed towards it as it was prescribed by my sleep consultant who has conformed to all the worst characteristics of dismissive and condescending disinterest exhibited by the medical profession when confronted by severe rls.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Sun Nov 06, 2016 11:45 pm

beth, thanks yes there are some very articulate people here that's for sure!

legs, thanks. Things have gotten better temporarily only because I'm self medicating with tramadol at night, but I'm not sure how long I can do it because it may have given me heart palpitations in the past (also I'm going to run out of it at some point!). That wasn't confirmed so I guess I have to see if it happens again.

The response I'm getting with the tramadol is pretty amazing. I'm only taking 50-75 mgs. I wake up about 3 hours into the night feeling so rested I'm almost ready to start my day. I wake up and my cpap mask is still on, whereas if I'm PLMD'ing, I always take it off in my sleep. In other words, I am getting a very deep sleep. I do have a little daytime sleepiness, but I think that's because my sleep on the tramadol is always interrupted, I don't quite understand why, but I always wake up at least once on it. In any case, I'm light years better than on no, or ineffective, meds.

For the neupro, I was too scared of the potential narcolepsy side effect to try it. I just couldn't bring myself to do it. So I finally just decided that I'm not going to be trying it, that's my right as a patient. :)

I decided to just throw caution to the wind and email my doctor to ask if she will consider opioids. I sent her a link to the rls video on opioids, which, I told her, eased my concerns about that kind of approach. I emailed instead of going in because I don't want to waste my hefty $45 copayment if she's not open to discussing it.

I am kind of imagining that she's going to say that I haven't given those other meds enough of a chance yet. And that's fine, because again, as a patient, I have rights too, and I'm feeling a bit more solid in that thanks to this site. If she says no, I will be taking my PMLD business elsewhere, though she can keep being my sleep apnea doc.

How many people have you known who said, "My addiction began when I started taking pain meds for RLS."? Not so many. Probably because people with rls and pmld respect their meds as one of their few options and don't want to screw it up. (Hopefully my opinionated self hasn't offended anyone here. I don't mean to belittle addiction issues--or if god forbid, anyone here has struggled with that starting from rls or pmld, please forgive me. I am just fed up with the war on opioids here in the US, which hasn't been designed very effectively in my not-so-humble opinion.)


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