Saw my primary care doctor for RLS. She did order tests for Vitamin D, B9, and B12 deficiencies. Had been deficient in ferritin and she prescribed iron infusions. Tested iron stores level and it was 159 three weeks after infusions. Not deficient in the B vitamins but deficient in D.
Anyway, I told her about so many things that trigger my RLS and she said those are unheard of (hot shower or bath in evening, sex at bedtime, as well as other triggers, but the ones i mentioned she said are not triggers. However, they are for me when I’m not on enough Pregabalin.
Another thing she said was that I should be able to stop the clonazepam within a month or so, that no other patients have a hard time coming off of it. I’ve already come down from 2mg to a little less than 1/4mg.
Additionally, she said that all of her patients with RLS do extremely well with iron and ropinerole for treatment. Never any augmentation or unpleasant side effects for them, according to her.
I felt like I needed ti apologize to her for being the way I am.
However, I don’t think she knows as much as she thinks she does.
Any opinions?
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Abby2525
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The rates of augmentation are very probably FAR higher than current estimates because 1. Most patients & doctors aren't aware that the worsening of their disease is because of Ropinirole/Pramipexole; and 2. Most people don't report Augmentation to the FDA or the UK Yellow Card Scheme.
She needs to read RLS forums to see how horrible it is to get off Ropinirole. The top experts admit it is hellish.
If sex and hot baths trigger your RLS, she should NOT dismiss this. I agree that's gaslighting.
Interesting because especially sex helps RLS temporarily for almost all. In fact I haven't heard of anyone where it made it worse. But she is certainly wrong about ropinirole. You definitely don't need to apologize as you probably know more than she does.
Interesting you bring up this topic. My experience has been that sexual foreplay takes away my RLS, BUT the orgasm itself actually makes my symptoms worse. I always thought it was because it makes me tired, and anything that makes me sleepy affects my RLS negatively. Perhaps the release of brain chemicals. I don't know. Wishing you the best.
Sex without orgasm is a wonderful tool for getting thru the hell of RLS for me. Of course, there are many variables as to timing, a willing partner at age 65, or the stigma of masturbation. At least it is sex with someone I love.
The other interesting topic is "when did augmentation from a dopamine adrenergic become mainstream knowledge for general practitioners". In my case, my GP gave me no warning of it when I read about it 5 years ago. The inserts on Pramipexole did warn about compulsive behavior like gambling but not augmentation then. I now suffer tremendously because of the lag time between drug research and education of GPs and/or pharmacists. Ultimately, I blame myself because I am a health care provider. I should have done more research myself on what went into my body. I understood tolerance but not augmentation until a few years ago. Withdrawal and abstinence from the DA is a nightmare lasting 3 years now.
The short story is: Pramipexole worked great for almost 20 years. Lyrica (and the like) never worked with bad side effects. Iron infusion didn't work. Painkillers are palliative partial help only. Wholistic remedies/ diet offer limited help. Neupro patch helped for only 4 months before a new augmentation started. I have more withdrawal symptoms at this stage.
I believe I get great advice from Dr. Buchfuerer now. Our next trial will be dipyridomole after my knee surgery next month. He asked me to wait because it takes time for the DA to clear out and the effects of blood thinning could complicate my surgery.
This forum is lucky to have good consultants. I hope this helps someone else with this miserable condition. There is a good case for need of better education of GPs.
She does not know as much as she thinks she does. BUT, at least she was testing for some of the typical deficiencies-more than what many docs would do. Just knowing about ferritin and iron infusions is huge, in my experience.
Anybody who is on ROP would not complain to her, in general, because it works so well at first. Then, as the ROP actually worsens the RLS in the long run, most think they need more and the doctors simply agree and throw more at them.
I am hoping that unlike most doctors, she will be open to reading the latest research and then help you accordingly.
I wrote to her before the appointment that Hopkins and Mayo say that iron and gabapentin or pregabalin are the first line treatment now, but she told me that iron and ropinerole are the first line treatment. So I don’t know if she will credit anything I say.
Oh! Well, then-ICK! She is not only misinformed but stubborn and egomaniacal to boot. Definitely find someone else, and it will most likely take you some time to get an appt. I am in a huge US city and it has been really tough-even with all of the information and new research that is out there.
On the RLS.org, they have a map with recommended specialists. I have an appointment coming up in TN in 10 days. Praying he will be able to help me get off Requip, my Ferritin level is 11 but regular GP doesn't believe that is low according to statics.
11 is crazy low, even for normal people! Sheesh. Best of luck at your appt. I have used that list on the site and I am hoping that you are going to one of the "rls centers" and not just counting on one doctor listed at one practice. Or, if you are, think about calling and talking with his or her nurse ahead of time, to be sure they can help you. Some of the individual docs listed still may not be up on the latest research, but they just might have been nominated by a patient who also has no idea and thought they were "cured" by taking a DA.
Also, going to a full rls center means you have several docs that can be there for you. For example, I went to one of the solo doctors listed and he helped me at first but then he cut me off when the DEA started breathing down his neck. I had nowhere to turn for help.
Just a few things I had to learn the hard way! I really hope it is a great appt. for you!
I hope he is able to help as well. It is a group thru Vanderbilt and the one I am seeing is a sleep specialist and works with rls or so the lady who took my info for appointment told me. . The only problem maybe because of the opioid epidemic in US, you have to have a physician in your state that will be ok with keeping check on my medications. I don't live in TN but within 2 hours of center. I hope not to have to take an opioid but from what many have said on site, it helps a lot. I actually take only .5mg of Requip but one night I tried to stop cold turkey and it was a miserable night. Thanks for the info
yes, it is hard to find a doctor who will be respectful and knowledgeable without a personal recommendation. I was referred to this one by my former doctor who decided during the pandemic that she wanted to work on ways to help other physicians who were suffering from the pandemic. She said that she goes to this doctor.
However, this doctor said that in her training as a D.O., she was taught to never prescribe Pregabalin. Now I’m afraid that if I try to change doctors too soon, I’ll be seen as a drug-seeker.
She was taught to never prescribe it? Just that one? I don't even get that....did she elaborate? What about gabapentin and Horizant? She does not sound good at all. Aaargh.
She was willing to prescribe gabapentin but I don’t know about the form Horizant. She probably would. She did not elaborate on her training except to say that it was just the old doctors with their old-fashioned training, the ones who pushed drugs on people, who would prescribe pregabalin. I really don’t like her. She’s not horrible in every way; I think she thinks she’s doing a good job, but I believe she’s limited.
I had fabulous pain relief with Ropinerol for 6 months but came off as I put on two and a half stone in that time. Took over two years to get weight back down. Now take small dose gabapentin. Helps some and gp says I can increase dose but would rather not get addicted to higher doses as I know somebody who did and it was dreadful to come off.
Don't be afraid to increase the gabapentin. You may become dependent on it especially since it works so well, but if you come off it very slowly you won't have any withdrawal effects which is what apparently the person you know didn't do. How much are you on? And if more than 600 mg are you dividing the doses so you take 600 mg 1 to 2 hours before bed and the rest 4 hours before that as taking more than 600 mg at one time reduces its effectiveness?
Hi. Just wanted to say that once I was off the DA's, I lost weight, too...the weight just fell off of me. I never knew they were the cause of my higher weight. Good for you for realizing it was the ROP. If I had known, I would have stopped the DA's immediately and would never be in the mess I am in now. Vanity would have saved me! Lol.
Hello Abby, I feel so much for what you’re going through and different triggers effect different people, but for me a shower or an activity that distracts me helps short term but there are so many different triggers that won’t be taken seriously. Mine get worse when I’m building up to an illness and also when recovering, eating to much and too late, to many to mention so I don’t think that until it’s been properly researched that your triggers should be dismissed.
I have been taking Ropinirole for several years and in the last 12 months increased to 6mg / day and it’s no longer working and have been provided with so much support and advice from RLS - UK and members of the forum who said my dosage was extremely high and I needed to slowly reduce my dose. Although Ropinirole works well at the outset in time it causes an increase in symptoms. I would urge you to resist any pressure by your doctor to take Ropinirole. I have reduced my daily dose from 6mg to 5mg / day myself and am again wandering the house at night listening to audiobooks. I am aware that it’s probably to much to soon but will be reducing a further 1mg / day in the next week or so until my sleep depreciation reaches an unmanageable level.
Sorry Abby if this sounds rather more about me than you but I have an appointment to see a Doctor on the 24th October. The appointment is classed as type, Amber Accu RX apparently Amber is initiated by Specialist in Secondary care, prescribing can be continued in primary care in conjunction with a Shared Care Agreement. Never heard of this Traffic Light System before but the Doctor I’m seeing is a Specialist Doctor in Palliative care and a Master of Science- Clinical Biochemistry plus so much more so I’m hoping for an open mind approach to treatment and will forward results of initial consultation in due course.
I sincerely hope that reading this has not triggered any one’s symptoms through sheer boredom but if it has then I apologise profusely and will do penance, but please no suggestions on what form that should take.
It’s always helpful to read about other peoples’ experiences and makes me feel less alone. I do hope these specialists can help you and I hope you can get off of Ropinerole soon. It’s horrible!!! Please write on this forum about what they say at your next appointment. I took 1/4 mg Ropinerole last night and was up late but did get some sleep. I am afraid that my specialist will want me to stay on Ropinerole but I’m coming off it regardless.
I think that if I can get a high enough dose of pregabalin that I will be okay some point.
I have made so many changes. No more coffee, tea, chocolate, and no caffeine. Sunlight lamp for vitamin d and circadian rhythm help in morning, heme iron supplement with orange juice first thing in morning, massage gum, etc.
DAs and especially ropinerole are fraught with side effects and augmentation. How paradoxical is augmentation - the very savior drug now becomes the demon. Many people just can't believe it.
I’m pretty amazed that the medical people are still giving DAs to patients. It seems so obvious that they don’t work long term for most people. I guess they do work long term for some and I’m glad for those people. But how long is it going to take for so many doctors to catch up with the research?!
They waved them at me and declared it is the ONLY treatment that will help. Thanks to this forum I resisted. Eventually iron supplements cut into my severe RLS almost immediately.
Tell her arrogant butt that sometimes a patient will present as an anomaly, and you're that patient. Remind her that the old tired line she heard in med school...the one about how if you hear hooves, think horses, not zebras...doesn't apply here because you're that zebra, and you would like her to take a moment to think outside the box and help you. The doctor works FOR YOU. She's not your boss. Or your mother. You're well within your rights to question her conclusions. Nicely of course. Do push back!
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