here we go again!

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cdoesc
Posts: 28
Joined: Wed Jan 09, 2013 9:13 pm

here we go again!

Post by cdoesc »

I haven't posted in a while. Life is too busy these days. I am taking mirapex 0.5mg at night only when I can handle it anymore and I have tramadol 100mg twice daily as needed, which is everyday.
This morning when I woke up. My arms were so "restless" felt like "oh no! Not again. " I have everyday symptoms in my arms and legs. My neuro is understanding to a point. I can have tramadol all day long, but mention codeine and its over. I must be drug seeking.... no im seeking relief. Just a little venting to people that understand! Thanks for being here!

Polar Bear
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Re: here we go again!

Post by Polar Bear »

I have symptoms 24/7 including the arms and use ropinerole/tramadol/codeine.

I find codeine 30/500 works better than tramadol.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

cdoesc
Posts: 28
Joined: Wed Jan 09, 2013 9:13 pm

Re: here we go again!

Post by cdoesc »

Thanks! I agree codeine is probably more effective than tramadol. Probably has less drug interactions as well. My neuro is not willing to cross the opiod line . However I think codeine would be better for me.

ViewsAskew
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Re: here we go again!

Post by ViewsAskew »

I am one who really likes tramadol. That said - it isn't nearly enough for strong symptoms!

cdoesc - any idea why it's so bad like this? There may not be a reason you can tease out, of course.

Per the opioids, it's a tough call about that to do - do you "doctor shop" making it look as if you're only out for the high? Many of us do - but it is fraught with danger. To me, I'm just trying to find someone who will follow recommended treatment protocol. To the government, doctors, or pharmacists who might become aware, it's a red flag that I'm an addict. Or, do you get poor, inferior treatment that doesn't solve your problem or allow you to resolve your symptoms?

Gee - what a choice!
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.

cdoesc
Posts: 28
Joined: Wed Jan 09, 2013 9:13 pm

Re: here we go again!

Post by cdoesc »

Im really not sure why its gotten bad again. It just seems to cycle. As far as doctor shopping, no thats not me. I have stuck with the same people for a long time. Maybe too long!

ViewsAskew
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Re: here we go again!

Post by ViewsAskew »

I didn't initially, but over time, I've become pretty intolerant of doctors who will not help. I'm too tired - been doing this for far too long to deal with someone who cannot or will not help me. Some might call it doctor shopping - I call it taking care of myself!
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.

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: here we go again!

Post by EeFall »

I would suggest going to a sleep doctor if at all possible in your area. I have always been with sleep doctors since I was diagnosed with RLS, going on my third one now after almost 14 years. They are the ones who told me I would be taking methadone or other opioids, and I have taken many different ones over the years including codeine.

When my first sleep doctor told me I would be taking methadone I was the one who was appalled :lol: and I blurted out something stupid like, "You mean the drug they give heroin addicts!?!" Any sleep doctor worth his salt will know all about opioids and how well they treat RLS/WED.

ViewsAskew
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Re: here we go again!

Post by ViewsAskew »

EeFall wrote:I would suggest going to a sleep doctor if at all possible in your area. I have always been with sleep doctors since I was diagnosed with RLS, going on my third one now after almost 14 years. They are the ones who told me I would be taking methadone or other opioids, and I have taken many different ones over the years including codeine.

When my first sleep doctor told me I would be taking methadone I was the one who was appalled :lol: and I blurted out something stupid like, "You mean the drug they give heroin addicts!?!" Any sleep doctor worth his salt will know all about opioids and how well they treat RLS/WED.


I wish this were always true. My last sleep doctor caused me no end of grief over opioids and eventually she "fired" me as a patient. I can honestly say there is no one best specialty - it really depends on the doctor.

I've seen:
Family doc1 referred me to Neuro 1

Neuro 1 caused me to augment and made things much, much worse

Family doc 1 tried, wasn't successful, so sent me to family doc 2

Family doc 2 gave me clonazepam and sent me to Neuro 2

Neuro 2 couldn't diagnose WED, let alone treat it. She admitted it and sent me to Neuro 3 (also in her practice). I had to wait months to see Neuro 3 - she was considered the foremost specialist in Parkinson's and WED.

Neuro 3 was smart, likeable, and treated me well in some ways. She refused to use opioids or acknowledge the devastation of augmentation - she wanted me to stay on pramipexole for 2 more years until the patch was available (my life was in shambles); she thought it would solve augmentation. She sent me to sleep doc 1 for a sleep study and a consult.

Sleep doc 1 didn't know much at all about WED; she consulted she sleep doc 2. He didn't know much, either. After 2 sleep studies (the techs botched the first), they sent me back to Neuro 3. Given Neuro 3 wouldn't help me stop pramipexole and it was destroying what was left of my life, I looked for another doc.

I found Family doc 3 - my old family doc from before I moved. He and Family doc 4 (part of the same practice), listened, talked to Dr B, and did very well, but neither wanted to be experts in WED, so I was always leading them- very uncomfortable. He sent me to Neuro 4.

Neuro 4 told me he hadn't written for opioids in 20 years, was a premier WED expert, and opioids had no place in therapy. Gee. Back to family doc 3 and 4.

Had to travel 60 miles to see family doc 3 and 4, so looked for new doc closer to home.

Found family doc 5. Wasn't happy about opioids, but agreed initially. Worked with Dr B, but didn't like it. We were trying alternatives to methadone and nothign was working - so I was in every few weeks for another opioids. This was so difficult that doc 5 "fired" me - on a weekend, without any prescription to tide me over. She said that she couldn't continue to write these scripts. I really don't think she every understood at all.

Flew to California immediately and saw Dr B. This worked well except it's a long way away, my insurance didn't cover, and I was unemployed, so the cost was a burden. So, kept looking for a local doc.

Found Sleep doc 3. After speaking with Dr B, she agreed to use methadone and pramipexole alternating. Worked for a year or so. She left practice temporarily and I was assigned Sleep doc 4. Sleep doc 4 hated the opioids and made it so difficult for me that she essentially forced me out. See my thread about that for details.

Back to Dr B - who is pulmonologist.

So, how many docs is that????? 5 family docs, 1 pulmonologist, 4 neuros, and 4 sleep docs. Of those 14 doctors (in about 9 years), only the pulmonologist was really good.

I've also called or written approximately 30 to 40 other local doctors to explain and ask if they could treat me. Only one said he could - he was Neuro 4 who refused to use opioids because he said they had no place in WED treatment.

But, doety has a GREAT neuro, now. And you, EeFall, have a great sleep doc. badnights really likes her doc (neuro or sleep doc, can't remember). It's what they all have in common - they study WED and stay on top of treatment, they listen to the patient, and they use the best treatment based on the situation, not their personal beliefs about drugs that should or shouldn't be taken.
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.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: here we go again!

Post by EeFall »

ViewsAskew wrote:But, doety has a GREAT neuro, now. And you, EeFall, have a great sleep doc. badnights really likes her doc (neuro or sleep doc, can't remember). It's what they all have in common - they study WED and stay on top of treatment, they listen to the patient, and they use the best treatment based on the situation, not their personal beliefs about drugs that should or shouldn't be taken.


I know there is a list on here somewhere that lists doctors who are good for WED but maybe it would be beneficial for someone (I could help) to come up with an exhaustive list of doctors who are in the know across the USA, Canada, and Europe (all English speaking nations where RLS sufferers may find this board). It would not be a list of, "Hey, I like this doctor", but a list of doctors (not necessarily sleep doctors) that are aware of RLS/WED and will prescribe medications that we know work from experience. The list would actually be much better to include family doctors who will know enough to send a patient to a sleep doctor who is in-the-know.

:lol: Nothing is impossible.

The major thing about this board that bothers me is that I looked for a board like this for years online and only found it awhile back by accident. It should be setup better to be easily found on search engines like Google - and a list like this would help sufferers all over the world. It wouldn't cost any money just some hard work and thinking out of the box to determine how to determine doctors who know the score.

Polar Bear
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Re: here we go again!

Post by Polar Bear »

EeFall

''''''The major thing about this board that bothers me is that I looked for a board like this for years online and only found it awhile back by accident. It should be setup better to be easily found on search engines like Google'''''''''

I googled 'RLS' and the Foundation web site came up 6th on the list. I thought that was pretty good :)
Restless Legs Syndrome Foundation
http://www.rls.org/
Provides helpful information for sufferers and their friends and families.


It would be awesome to have a comprehensive list of doctors.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Location: Los Angeles

Re: here we go again!

Post by ViewsAskew »

We've worked on trying to get that list for a LONG time. The Foundation can't do it for a variety of reasons. They have no way to verify that they doctors really do know their stuff. They know that it's what many of us really want. We do have a list on this board that we ask people to add doctor's names to when they would recommend the doctor. It's a sticky post - the first one on the page - in the General WED section: viewtopic.php?f=5&t=8115 . People rarely add to it. I think some people feel that they shouldn't post without getting their doctor's permission.

If someone could continually encourage people to add to this, it could be an exceptional list.

Per the searching, for several years the board was not seen or indexed. You had to find it through the Foundation itself. The reasons were numerous, but they do not apply any longer, thankfully. It was visible up until about 2009, I'd guess - I found it easily through a search in 2004. Then, after many issues with spammers, it was dark to the search engines until about a year ago. When we moved to this new version of the bulletin board software, there were enough safety measures in place that we could be public again.
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.

badnights
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Re: here we go again!

Post by badnights »

eefall wrote:I know there is a list on here somewhere that lists doctors who are good for WED but maybe it would be beneficial for someone (I could help) to come up with an exhaustive list of doctors who are in the know across the USA, Canada, and Europe (all English speaking nations where RLS sufferers may find this board). It would not be a list of, "Hey, I like this doctor", but a list of doctors (not necessarily sleep doctors) that are aware of RLS/WED and will prescribe medications that we know work from experience. The list would actually be much better to include family doctors who will know enough to send a patient to a sleep doctor who is in-the-know
.
A few things:

A list was started on this board more than once; the latest is a sticky in the General forum that Ann refers to above. It has been helpful for some people already, who happen to be in the areas listed, but it would be way more helpful if everyone who was receiving good treatment added to it.

The WED Foundation has a "find a doc in your area" page, but there are three problems with that list: it only lists USA docs, it lists doctors who call themselves specialists without vetting them in any way, and the list includes many doctors who have moved or otherwise should no longer be on it. I offered to find people besides myself to basically call everyone on the list every year to keep it up to date. But the Foundation has finally implemented a better solution, that they've been working on a long time:

The WED Foundation has a Quality Care program. Doctors and clinics can apply to become certified as WED/RLS treatment specialists. They have to provide case studies and indicate in other ways that they have enough experience with refractory and simple cases to be called specialists. The program is not much use to us yet, because not many doctors and clinics have signed up for it. But I looked through their criteria and I'm impressed; the certification will be meaningful.

Meantime, use the sticky Ann linked to, and post on this board, and do anything else you can think of, including calling all the clinics within reach of you.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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