How to get dr to listen?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
QyX
Posts: 316
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Location: Berlin / Germany

Re: How to get dr to listen?

Postby QyX » Wed Apr 05, 2017 9:19 pm

legsbestill wrote: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.


As long as you don't have access to Tramadol or any othere opioid, Kratom just might be the perfect solution for you.

Kratom is like many other opioids a mu-receptor agonist, meaning it has similar effects then Morphine, Codeine, Tramadol, Oxycodone etc.

But Kratom is not as potent as pharmaceutical opioids but as long as you only need one Tramadol pill it should be strong enough.

I am no expert with Kratom and never have used it but I know a lot of stories were people used it to manage withdraw from Heroine. So for a legal herb it is quite potent.

A common way to consume Kratom is by making a tea with it. The hole procedure might be a bit time consuming but still better then suffer from insomnia.

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

Re: How to get dr to listen?

Postby amandajo » Thu Apr 06, 2017 2:47 am

QyX wrote:
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.



I've just always dealt with it. It used to hit once or twice a month when I was younger. I had a day bed so I would propose my.legs up on the back and that relieved the symptoms. It didn't start to get real bad and consistant until I was pregnant with my son and then after. He's four now so the last four years have been pretty rough. I've spent a lot of nights on the couch sor my husband can sleep. Being tired isn't really anything new to me I used to work in nursing homes on midnight shift so I would be working through the night and so tired and exhausted by the time I got home nothing short of bombs going off under my bed would've kept me up..maybe that's why it didn't bother me as much when I was younger.

ViewsAskew
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Re: How to get dr to listen?

Postby ViewsAskew » Thu Apr 06, 2017 7:14 am

Mine started about the same age as yours - as with you, it was only a few times a month initially. My mom and grandma - the same. Pregnancy for both of them made it more frequent. No children here - so it just worsened over time. Also, like you, initially I just was tired, so what. I never slept well, not even as a toddler, so it seemed normal. I also worked nights for awhile, going to bed when the sun came up, making it manageable. Some of these things, in retrospect, were likely decisions made because of it and I never realized it. After graduate school, I started working "normal" hours - then is when the real problems started.

Sounds trite, I know...but hang in there. The vast majority of us find ways to make it work...at least mostly.

And, kratom could be very helpful. I am off to take mine right now...
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: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: How to get dr to listen?

Postby QyX » Thu Apr 06, 2017 11:18 am

I've just always dealt with it. It used to hit once or twice a month when I was younger. I had a day bed so I would propose my.legs up on the back and that relieved the symptoms. It didn't start to get real bad and consistant until I was pregnant with my son and then after.


As I read a few times that it is not uncommon in women that RLS starts when they are pregnant or right after they gave birth.

To me you sound like a typical case. Having RLS in the arms too is just additional bad luck. I do have RLS in my arms once every 2-3 months and when it happens it is just awful.

I hope you get a legal prescription for opioids soon. Without them living in any way would not be possible. Even my psychotherapist who was extremely sceptical taking opioids at such young age now understands that their is simply no other solution.

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

Re: How to get dr to listen?

Postby amandajo » Fri Apr 07, 2017 3:46 am

Thanks. I knew I was in trouble when I explained to my Dr that I was getting rls in my arms and he just.looked at me puzzled. It was so disheartening....I actually use a product called back on track calf wraps. They are a ceramic material that originally made horse products and now make them for ppl also. It reflects your body heat back into your body to increase blood flow and help with my legs alot. They are kinda like compression socks only just for my calfs. So I can control it in my legs without much hassle. But my arms...nothing helps. Sometimes I get so frustrated I end up hitting my arms or laying on them until they are numb. But that only helps for a brief time. I sent the referral paper for the sleep study clinic to my Dr so fingers crossed he fills it out for me. I have been trying the horizant he prescribed me but it's doing nothing at all for me.....I usually end up taking a 50mg tramadol around 1 or 2am so I can sleep. But unfortunately I am almost out of those. My step father is on them for a chronic condition so he can help me a bit but that's hardly legal and I hate asking him bc he needs them. Another option is they are prescribed for dogs for pain and I could get a few that route but that's hardly honorable. And as I type this I know how terrible it sounds to lie to get pills. Even though I'm legit about why I need them I don't feel right doing it. Please don't judge me but I can't explain this to anyone else bc it just sounds like a typical pill abuser looking for a fix. So incredibly frustrating!

leggo_my_legs
Posts: 151
Joined: Sun Oct 16, 2016 12:29 am

Re: How to get dr to listen?

Postby leggo_my_legs » Fri Apr 07, 2017 7:21 am

I haven't heard of augmenting on tramadol before. I am surprised! I use it 2-3 times a week for PMLS. The rest of the time I take norco.

Totally sympathetic to your dr troubles. Don't worry how it looks, you have no control over that. Just get a new one.

leggo_my_legs
Posts: 151
Joined: Sun Oct 16, 2016 12:29 am

Re: How to get dr to listen?

Postby leggo_my_legs » Fri Apr 07, 2017 7:25 am

What is really ridiculous about this war on opiods is that they're creating "addictive" behaviors, such as lying, in people who are not addicted! Totally not judging you. When systems are broken, people have to get their needs met however they can. I understand the feeling of desperation for rest and the enjoyment when you can get it! Hang in there!

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: How to get dr to listen?

Postby QyX » Sat Apr 08, 2017 1:29 am

leggo_my_legs wrote:I haven't heard of augmenting on tramadol before. I am surprised! I use it 2-3 times a week for PMLS. The rest of the time I take norco.


Augmenting under Tramadol is not as common as with DAs and it usually takes longer. But when you have problems with any antidepressent who works as serotonine reuptake inhibitor (all SSSRi, SSNRI, tri- and tetracyclic antidepressents) you will most likely augment under Tramadol.

@amandajo: You really shouldn't feel ashamed or in any way bad for your need of opioids. It is not your fault. You have a severe chronic neurological disorder which needs to be treated for decades!

I got my first Oxycodone prescription when I was 27. I haven't thought much about it back then because my RLS was so extreme. I was suffering from almost complete insomnia for months, fighting benzodiazepine withdraw symptoms and was in such a need for ease from my symptoms that I would have taken everything.

It took a while until I released the magnitude of what really was going on with me. Once I had a appointment with my doctor to pick up a new prescription for Oxycodone but I completely forgot about it when we started talking. I was about to leave when my doctor asked me if I need a new prescription. Then it hit my like a bullet. Suddenly all these bad emotions regarding my RLS, the need for long term opioid therapy and the social stigma around it kicked in and I just started crying because I couldn't "compute" that I have such a nice doctor who realises my situation, who understands that I really need this drugs and I don't even have to ask for them.

It was one of my most extreme emotional outbursts I ever had. It was sitting on the floor crying and it was impossible to talk to me. My doctor tried but he gave up after a while and had to wait until I felt better.

You have every right in the world to ask for opioids and you really shouldn't feel bad about it!

badnights
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Re: How to get dr to listen?

Postby badnights » Sat Apr 08, 2017 11:30 pm

amandajo, I think it's a good sign that your doctor was asking you for details about what it feels like. Sounds like he really does want to understand. I have never had a doctor ask me what it feels like, although I have had two who listened when I tried to tell them. I am sure that your doctor taking the initiative to try to find out what you're gong through shows that he is honestly trying to understand it.

Plan how you will describe it to him next time you see him. Remember, he doesn't know already. You have to tell him how it feels, and the consequences like no sleep, not only no sleep but being tortured while not sleeping, being passed over for promotion at work becuase you've gotten stupid from no sleep, etc. - whatever is true for you. There are some things most doctors don't know about RLS/WED: what the symptoms are like for us, and the impact the disease has on our sleep, and on oor lives as a whole. Even the sleep specialist you see may not know these things. Don't assume he/she does.

I don't recommend asking for any particular medication from any doctor, but especially not an opioid because of all the BS susrrounding them. Do your own research - the book that Ann recommended is a great start, or get a membership in the Foundation so you can download their Medical Bulletin for Healthcare PRoviders, cheaper and almost as good - and carry some printouts or books with you to your appt. Take the time to highlight the parts that are relevant to you beforehand, so the doctor can flip to those parts quickly during your short appointment. Tell him you have been researching your disease, and could he please tell you what he thinks of this material that you've found. Or if it's the book, would he like to look at it.

Let him come to his own conclusions. It's probably necessary to be his guinea pig if he wants to try you on something like Horizant first, but do not wait a month or two before telling him that it doesn't work. If he prescribes something, you get a plan in place at the time he prescribes it for how you should contact him if it does not work. Eventually, if you're desrcibing your symptoms and your life accurately and if he's reading the literature (helped along by your offerings, to get him pointed in the right direction), then he will realize he has to resort to opioids.

Meantime, intead of trying to get hold of tramadol illegally, why not try kratom?

amandajo wrote: used to work in nursing homes on midnight shift so I would be working through the night and so tired and exhausted by the time I got home nothing short of bombs going off under my bed would've kept me up..maybe that's why it didn't bother me as much when I was younger.


Maybe the fact that you were working shifts masked the symptoms, especially if you rotated night and day shifts on some schedule.

But my arms...nothing helps. Sometimes I get so frustrated I end up hitting my arms or laying on them until they are numb. But that only helps for a brief time.


I have displaced (minor dislocation) a small bone in my wrist and strained soft tissue in my other wrist, from falling asleep on my hands with my wrists bent to kill the sensations.

I have been trying the horizant he prescribed me but it's doing nothing at all for me.

Not surprising. See the thread "Does anyone successfully use ONLY an anti-convulsant?"
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

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

Re: How to get dr to listen?

Postby amandajo » Sat Apr 22, 2017 3:18 am

I finally got my.dr to fax a referral to the sleep specialist. I have only talk to an assistant but I'm already so happy. I briefly explained the issues I've had with my dr and he said that it sounds like I was more educated on the subject then him and they are glad I found them bc my dr clearly doesn't know much about rls. I almost cried when I was talking to him. I'm so close now to getting this under control!

badnights
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Location: Northwest Territories, Canada

Re: How to get dr to listen?

Postby badnights » Tue Apr 25, 2017 7:30 am

I'm glad they're listening. :)
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


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