How to get dr to listen?

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amandajo
Posts: 8
Joined: Wed Apr 05, 2017 1:09 am

How to get dr to listen?

Postby amandajo » Wed Apr 05, 2017 1:35 am

Hello. I'm new here but not new to the torture of rls. I have had it for years now and I'm 31. I not only get it in my leg I get it in my arms. I have been on severely meds and none seem to work. I then discovered that tramadol works! I had some left over from a horse riding spill and noticed that when I took them my rls was gone. It helped me sleep without being super drowsy. I was taking one pill before bed and it works like a dream. I tried for a month and on the days I went out drinking I didn't take them and ended up with symptoms those nights and little sleep. It's been about a month now with solid sleep and no rls. However my Dr wouldn't even listen to me. Yes I know how it sounds. A person who started taking some old pain meds now wants more. He said to me "well rls doesn't cause pain so you don't need a pain med" I want to find a new Dr but again...how does that look? Finding a new Dr bc mine won't give me the pills I want? He put me on horizant and this last week has been hell with my arms bothering me all night and little sleep.....how do I find a Dr who will listen to me Abe believe me? I'm just so frustrated I find something that works and it just makes.me.sound like a pill head by asking for it!

stjohnh
Posts: 276
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How to get dr to listen?

Postby stjohnh » Wed Apr 05, 2017 2:54 am

Welcome amandajo. Lots of folks here with lots of experience and I'm sure you will get some good ideas.

Firstly, since you are relatively young, you probably need a doc with significant experience treating RLS. The foundation has a list of certified Centers of Excellence and if possible you should see one of those docs. You are looking at decades of treatment for a difficult to treat disease and should get the best advice possible.

Next is tramadol... it is problematic in many ways and rarely the best treatment for RLS. You will probably have trouble getting any US doc to prescribe it for RLS. It is available in Mexico without prescription however.

If your ferritin is below 75 you should try to get it above that, over 100 if possible. If you don't know the number it should be checked.

The standard RLS meds are Requip, Mirapex, and Neupro. Have you taken any of those?
Blessings,
Holland

amandajo
Posts: 8
Joined: Wed Apr 05, 2017 1:09 am

Re: How to get dr to listen?

Postby amandajo » Wed Apr 05, 2017 3:05 am

Yes requip didn't work and then me and my Dr went.through a variety of other pills and I ended up getting so frustrated with calling back having to schedule another apt and.paying more money for office visits that I just said screw it and suffered at night. I had the tramadol and originally was taking it for migraines at night but noticed how my rls was gone those nights as well. I only take one small pill before bed and it was just so nice to go to bed at night knowing I was gonna actually sleep! I just searched this page and found a Dr close to me. He's listed as a sleep specialist?

I just feel so frustrated with my Dr bc he asks me questions over and over like I have any explanation more then him like what does it feel like, what do I mean my rls goes to my arms, how does it keep me awake. Then he said things like well the only thing I know that causes rls is low iron let's check that again (more blood work yippee)

He makes me feel like I'm making it up or exaggerated it all.....

amandajo
Posts: 8
Joined: Wed Apr 05, 2017 1:09 am

Re: How to get dr to listen?

Postby amandajo » Wed Apr 05, 2017 3:08 am

And I get how going into my.Dr after months of not seeing him and asking for a pain pills script looks suspect. And I hate that this one medicine is recently at the center of abusers radar. If I could find something else that works I'm totally ok with that but at this point I feel hopeless.....

stjohnh
Posts: 276
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How to get dr to listen?

Postby stjohnh » Wed Apr 05, 2017 3:30 am

Most RLS specialists are either sleep docs or neurologists. However, many docs, even in those specialties, know very little about RLS. Even those that know about the disease have trouble "getting it." My experience is that very few people, includings docs, really have any idea how bad this disease can be. After all, "how bad can jumpy legs and a little insomnia be?"

I hear your frustration. Most of us here have had spells of feeling the same way. It will get better when you find a doc you can work with, unfortunately that could take some time.
Blessings,
Holland

amandajo
Posts: 8
Joined: Wed Apr 05, 2017 1:09 am

Re: How to get dr to listen?

Postby amandajo » Wed Apr 05, 2017 3:36 am

Then when I say it's not really my legs so much as my arms and the dr really looks at me.like I'm crazy.....I can usually prop my.legs up on the wall or elevate them causing them to keep slightly stretched and that helps...but my arms....nothing helps....hanging them off my bed. Ice packs. Ace bandages wrapped snuggly.....I just sit there and shake my arms bc nothing helps.....

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: How to get dr to listen?

Postby ViewsAskew » Wed Apr 05, 2017 3:39 am

yeah, this opioid war makes it so hard on us.

You may have to go through their hoops...for now. Once DAs do not help or are not tolerated, they try the alpha 2 delta ligands (gabapentin, etc). That helps about 60-70%. So, it will not be uncommon if it does not work for you. Once you have been through both of those, the only thing left, really, is opioids.

But, if you haven't had the serum ferritin tested, please do! It took me years to get an infusion (have now had three) and I have been able to reduce my meds by about 50 percent. It isn't perfect, but given how severe my symptoms are, this is almost miraculous. Iron helps about 70-80% of those who use it.

The second thing that helped me was to go to one of the RLS Foundation's Quality Care Centers. I see Dr. Buchfuhrer. He does not ever make me feel that I have exaggerated or made anything up.

You may not get what you need in the next week....but if you hang in there and can find a doc who really does get it, you will.

Oh - if you can afford it, please do buy the second edition of the Lee, Buchfuhrer, and Allen book called Clinical Management of Restless Legs Syndrome. In the US, it is at Amazon https://www.amazon.com/Clinical-Managem ... 193261088X

This talks about all the possible treatments. You can take it to the doctor and say, huh, I read this about how opioids work, what do you think? i've even given doctors a copy of the dratted book when I felt I had to work with them. Much better to go to someone who already gets it...when you cannot, you sometimes have to educate them.
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.

QyX
Posts: 314
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: How to get dr to listen?

Postby QyX » Wed Apr 05, 2017 4:19 am

Some weeks ago I developed RLS in my arms because I forgot to take my meds on time and was later distracted with playing a video game. Then suddenly my RLS kicked in and it was absolutely horrible having symptoms in my arms. It took over an hour until the meds finally worked.

About Tramadol: as already said it is really not the best drug to treat RLS. Most likely it will sooner or later stop working. Either you reach the maximum dose of 400 mg or you will start to augment and worsen your RLS symptoms. This can happen because Tramadol is not a pure opioid and also works as a serotonine reuptake inhibitor like SSRI antidepressants works and these class of drugs are known to worsen RLS over time. Also Tramadol can have potent stimulating effects in higher doses which can cause insomnia. So you may find relief from your RLS but still can't sleep because the Tramadol is keeping you awake.

HOWEVER: as long as you only need low doses of Tramadol and don't experience augmentation from it Tramadol can be a legitimate solution. At least temporary until you can get your hands on something better.

Opioids are by far the most effective treatment for RLS. They are safe for long term use abd don't cause augmentation (except Tramadol). Unfortunately tolerance is sometimes a problem over the years but there are ways to deal with that.

Extended release Oxycodone (OxyContin) and Methadone are probably the two opioids mostly used to treat RLS in the U.S.

I wouldn't recommend taking high potent opioids as long as one Tramadol pill is enough to deal with your symptoms. Also it may take some time to obtain a prescription anyway.

In your case normal Codeine or Dihydrocodeine should work too. Codeine is as potent as Tramadol and Dihydrocodeine double as potent as Tramadol which simply means you 1/2 the dose of Codeine to obtain the same analgesic effect. Low potent opioids are way more easier to get then Oxycodone, Hydromorphone, Morphine & Methadon.

I would follow the recommendation and see the sleep specialist in your area. Doctors who really (!) know about RLS will understand how helpful Tramadol is for you. When you have already used drugs like Pramipexol and Ropinirol it will most likely come to the point where the doctor opioid long-term therapy sees as an acceptable solution.

You are just 31 years old. Most people who suffer from RLS are older and some doctors do have problems prescribing opioids to young people. They fear psychological dependence and taking potent narcotics daily is just something many people in the society have a problem with. There is this social stigma of opioids. The hole issue is just nasty.

I am 32 years old and was put on opiods at 27. Before that I've tried more then 30 different drugs without luck. In the end there was simply no other choice. It can be a real battle to get the right treatment. At least you already now what is working for you. This is harder to figure out then obtaining a prescription for a specific drug.

Good Luck!

legsbestill
Posts: 296
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: How to get dr to listen?

Postby legsbestill » Wed Apr 05, 2017 9:24 am

If you do decide to see an expert it will likely take a while before you get an appointment. I would second the suggestion that in the meantime you order the book (Lee Buchfuhrer et al) and bring it to your doctor so that he can see that opioids are a recognized option for treating rls. If one tramadol works, that would seem to be a perfectly viable option for now. Definitely get your serum ferritin levels checked ASAP also (make sure your frustratingly ignorant GP gives you the actual figure - 'normal' for ordinary people is different from normal for rls).

I agree it is awful to get it in the arms - even more difficult to achieve even temporary relief. Baths in Epsom salts can help. Also you could try Kratom which works for some people.

connecticutgal
Posts: 2
Joined: Tue Apr 04, 2017 6:24 pm

Re: How to get dr to listen?

Postby connecticutgal » Wed Apr 05, 2017 4:27 pm

New member here..glad to hear from people who understand..I had to come off NUPRO because it gave me periods of confusion..now I'm back on horizant I happen to have tramadol at home will use it on a bad night...did any try the medical marijuana....I'm a little scared to try it...but I am often desperate for sleep...I can literally cry just thinking bout a bad night

yawny
Posts: 138
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: How to get dr to listen?

Postby yawny » Wed Apr 05, 2017 4:51 pm

connecticutgal, welcome! I was scared to try medical marijuana too. I had never tried it before and grew up thinking it was a naughty drug. Boy, was I wrong. It is medicine and helping people live better lives. I use it every night. And while I was once shy and covert about using marijuana, I've since changed my thinking and don't hide it anymore. It's simply medicine and I won't contribute to treating it like it's naughty. I even introduced marijuana to my 78 year old mother and she's now getting sleep again. Many of her friends use it too. Lots of people on here use it and we're happy to answer any questions.

legsbestill
Posts: 296
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: How to get dr to listen?

Postby legsbestill » Wed Apr 05, 2017 7:13 pm

Hi connecticutgal, welcome to the forum - a place of refuge for all with rls,

Re marajuana, ditto what yawny says. I view myself as respectable middle aged professional female - have no interest in recreational drugs. However I too have embraced the joys of marajuana and also kratom - both of which are actually illegal where I live.

Re Kratom: while other substances will control my rls urge-to-move symptoms, they are more addictive and for me bring more pronounced side effects than kratom.

Re marajuana: it is not so effective against the urge-to-move but NOTHING works so well as marajuana for overcoming rls related alerting and getting me to sleep at night. Without it I lie awake all night long. With it I usually sleep like a baby - it is positively miraculous and I seem to have virtually no side effects.

amandajo
Posts: 8
Joined: Wed Apr 05, 2017 1:09 am

Re: How to get dr to listen?

Postby amandajo » Wed Apr 05, 2017 7:21 pm

I talked to a sleep specialist who treats rls in my area and I need to get a referral from my dr....ugh fingers crossed he gives it to me!

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: How to get dr to listen?

Postby Rustsmith » Wed Apr 05, 2017 8:05 pm

Amandajo, if your doctor will not give you the referral when you ask, it might be time to start looking for a new doctor.

connecticutgal, medical marijuana (MMJ) is a lifesaver for many of us. But since it is not currently available as a standardized product, there is a lot that you have to learn about and experiment with. If you can get approved as a medical marijuana patient, the dispensaries all tend to be very helpful and can usually provide the sort of advice that you need as a new user. And if you don't find what you need in our various past discussions, please start a new topic and ask for help. We have enough users from around the country to answer most any question about MMJ that you have.
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.

QyX
Posts: 314
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: How to get dr to listen?

Postby QyX » Wed Apr 05, 2017 8:07 pm

amandajo wrote:I talked to a sleep specialist who treats rls in my area and I need to get a referral from my dr....ugh fingers crossed he gives it to me!


RLS is a primary sleeping disorder. So seeing a sleep specialist is obvious the right thing to do. Your dr should understand that,

You said you are 31 years old. I don't know for sure but the average age here seems to be much higher in this board. Of course that is not surprising because severe RLS is more common in the older population but can also start in puberty.

My symptoms started when I was around 12 years but was only diagnosed with 27. Before that I had all kind of other diagnoses. Primarily I was treated for bipolar disorder, taking lots of antipsychotics over years who - at least that's what I think - made my RLS that severe so that I was forced to start using opioids at 27.

RLS made my life hell.

I finished shool at 24. I was dropped out at the age of 19 because of depression and then finished later on a private school. But because of this RLS mess I was only able to start studying at 29, when I was almost 30.

So I am curious how you are able to manage your life with RLS at such a young age.

It makes me sad and angry when I think about how much I lost to this disorder.

Now I study Medicine at the "famous" Charité in Berlin but with RLS, opioids and my additional Autism Spectrum Disorder (Asperger) it is a real challenge.


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