Bad News

For everything and anything else not covered in the other RLS/WED sections.
debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Bad News

Postby debbluebird » Tue Aug 29, 2017 10:01 pm

I just left my primary care doctor. It seems that the doctor who over sees our clinic (who lives in another town), is contemplating stopping all pain meds. So I will be screwed if that happens. I told her up front that I will die if that happens. There is nothing else for me to take. I already take 3 drugs now, alternating one.
Plus, that would end my husbands drug too. He would be able to stay in bed and be a vegetable. At least he could stay in bed, while I pace, then pass out.
I know I'm being dramatic, but it's pretty much the truth.

badnights
Moderator
Posts: 4554
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Bad News

Postby badnights » Wed Aug 30, 2017 4:58 am

I understand. Now you need a replacement doctor. What are your options? Is there another clinic within driving distance? Can you visit Dr B once a year like Ann does?
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

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Wed Aug 30, 2017 5:20 am

We live 65 miles to the next town. Not sure if I could find a doctor there. It is small. Next choice is 120 miles, then after that, Denver, 4 hours by the time we drive through the city. All of that is one way.
Right now, wait and see. No money to fly to California. It would be hard because of money, just to drive to Denver once a month.

Polar Bear
Moderator
Posts: 6856
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Bad News

Postby Polar Bear » Wed Aug 30, 2017 7:41 am

Do you mean stop prescribing pain meds for an RLS Clinic - or stop prescribing pain meds in general. My first thought was that you meant in general.

It is beyond my understanding how a doctor can decide to stop prescribing pain medications. A doctor must know what trauma and loss of quality of life this would cause to a (large?) % of patients. As pain relief is such a major requirement of many people with varying disabilities and diseases I cannot understand how a relevant professional medical managing body could permit its members i.e. doctors, to withdraw from prescribing such a vital medication.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 2631
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Bad News

Postby Rustsmith » Wed Aug 30, 2017 1:11 pm

Deb, if your doctor follows through with the idea of stopping all pain prescriptions, then insist that she provide both of you with a referral to UC-Denver in Aurora. Yes, it is a four hr drive each way, but the only reason that they are not one of the Foundation Quality Care Clinics is because they haven't submitted their application yet (I am going to bug them again about that when I go back in 3 weeks, a 2 hr drive for me). Once you are set up there, you would only need to go back once a year. They will mail the prescriptions to you when you need them. My doctor (Jean Tsai) has dual specialties of RLS and sleep medicine, which would be perfect for you with your problem with centrals.
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.

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Wed Aug 30, 2017 6:56 pm

Polar Bear wrote:Do you mean stop prescribing pain meds for an RLS Clinic - or stop prescribing pain meds in general. My first thought was that you meant in general.

It is beyond my understanding how a doctor can decide to stop prescribing pain medications. A doctor must know what trauma and loss of quality of life this would cause to a (large?) % of patients. As pain relief is such a major requirement of many people with varying disabilities and diseases I cannot understand how a relevant professional medical managing body could permit its members i.e. doctors, to withdraw from prescribing such a vital medication.


The clinic would be stopping all pain meds in general. It hasn't happened yet, and maybe I would be an exception. It is a primary care clinic in a town of 600 people.

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Wed Aug 30, 2017 7:07 pm

Rustsmith wrote:Deb, if your doctor follows through with the idea of stopping all pain prescriptions, then insist that she provide both of you with a referral to UC-Denver in Aurora. Yes, it is a four hr drive each way, but the only reason that they are not one of the Foundation Quality Care Clinics is because they haven't submitted their application yet (I am going to bug them again about that when I go back in 3 weeks, a 2 hr drive for me). Once you are set up there, you would only need to go back once a year. They will mail the prescriptions to you when you need them. My doctor (Jean Tsai) has dual specialties of RLS and sleep medicine, which would be perfect for you with your problem with centrals.


That would be wonderful. We could manage going to Denver once a year. Might even make the change any way, just because I'm such a mess with my sleep apnea as well as the RLS. The pulmonologist that I see now, who is in Ft. Collins, doesn't really know what to do with me. He tries. We will definitely consider it. Thanks. I know you have given the information before. I didn't remember the once a year visit.

Polar Bear
Moderator
Posts: 6856
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Bad News

Postby Polar Bear » Wed Aug 30, 2017 7:10 pm

Rustsmith's post = sounds perfect.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 2631
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Bad News

Postby Rustsmith » Wed Aug 30, 2017 9:28 pm

Deb, I am supposed to go twice a year, but that is because I don't have a neurologist here in Pueblo that they can have me do a semi-annual check up appointment with. I also like the more frequent visits because it allows me to give them a regular reminder to submit their QCC paperwork to the Foundation and to bug them about writing a proposal for an RLS research program that I want to volunteer for.
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.

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Thu Aug 31, 2017 1:02 am

I just hope that the new laws don't change the availability to get scripts mailed.

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Sun Sep 03, 2017 9:12 am

Well, I'm pretty sure that I've augmented with the carbo/levo. I was afraid that it would happen. I hope I caught it early enough, so I won't have too bad a time. To top it off, I'm having back spasm along with the ones in my leg. Don't think I will be sleeping much in the next week or more. Oh well. Too bad, because I slept so well when I took it.

ViewsAskew
Moderator
Posts: 14861
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Bad News

Postby ViewsAskew » Sun Sep 03, 2017 10:12 am

I fell your pain - am in the same boat.
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: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Sun Sep 03, 2017 2:46 pm

With which drug for you, Ann?

ViewsAskew
Moderator
Posts: 14861
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Bad News

Postby ViewsAskew » Tue Sep 05, 2017 6:57 pm

After the third infusion, I decided to get brave with pramipexole. I made it 6 months! Given that I augmented in about a week initially, 6 months is a LONG time! And, to be fair, I cannot be 100% sure I did augment. I had 4 days in a row where my symptoms were earlier than normal and they felt stronger than normal. I stopped at that time. I did not want to let it get worse if it was augmentation...but of course, I have no way of knowing if it was! Took me about 2 weeks to get back to a close to what was a normal dose of methadone, but at least a week of that was building up the supply in my body because of the long half life, and maybe all two weeks of it was - I have no idea, really.
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: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Fri Sep 08, 2017 5:58 am

Well, I stopped the carbo/levo and only had three difficult nights, but not too bad really. So now I'm not sure either about augmentation. I just had had such severe symptoms before I even went to bed and during the night. I don't usually get those anymore. It was like my body was really craving that drug. So now it's just methadone and one 1/4 oxy (5mg) tab, during the night for breakthrough, so I can go back to sleep. Also not doing that every night. I just didn't want to take any chances.
Now, I may wait awhile before I take the carbo/levo again, and then only take 1 a week, or even 1/2.
Glad yours turned out well too.


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 1 guest