Dear Dr. -------,
I am writing about the treatment I received at your clinic from November of 2006 through March of 2007. I had an initial visit with Dr. Mulrooney, who was actually very understanding and kind, and diagnosed me with RLS. He gave me a starter pack of Requip and had me schedule a sleep study in December, with a follow up appointment afterward.
Unfortunately, about a week before that follow-up appoinment, I started experiencing severe pain within a couple hours after taking the Requip. I was also having much worsened creepy-crawly sensations, along with an increased need to move to the point where I thought I was going to crawl out of my skin. I put in a call to the clinic, but there was no doctor on call who could help me out. I did get a call from a nurse who thought that it might help to cut back on the Requip, but admitted she didn't know anything about it.
Being that I was in horrible after taking the Requip, I stopped taking it. Then my body went crazy. My legs felt like they were on fire, and I was squirming out of my skin. If someone had seen me they would have thought I was having convulsions. I believe the medical term for this is “akasthisia”? Fortunately I was at that time a participant in the RLS.org on line support group, and had heard a lot about augmentation, and had learned that for severe augmentation it is usually necessary to switch medications to an opiate like codeine or opioids like hydrocodone or oxycodone.
(Since I couldn't get help from your clinic until Monday, I got an emergency appointment with my primary care physician. I was in horrible pain, but she just gave me a lecture for about an hour on the evils of taking St. John's wort. I repeatedly mentioned that I was in PAIN, and she told me she couldn't give me anything because I was taking St. John's Wort. I got the record from that visit and there was nothing about pain at all in the doctor report. I had heard that it was difficult to get treated for pain, and this was just my first taste of that.)
Between that Friday appoinment and the Monday appoinment at your clinic, I took some of my husband's hydrocodone that he had left over from his recent treatment for leukemia. It settled everything right back down. I was hopeful that at my Monday appoinment with Dr. Mulrooney, he would write me a prescription for a painkiller to get me through the worst of the augmentation. When I arrived at the appoinment, I found out that it was not with Dr. Mulrooney, but with a nurse practitioner who was only interested in going over the results of the sleep study and “treating my apnea.” She seemed completely unable to shift gears and give me appropriate treatment for the extreme misery I was experiencing with the augmentation. Furthermore, when I read the sleep study myself, it clearly showed that I do not have obstructive sleep apnea, and I didn't even snore during my sleep study. I kept asking her to treat my augmentation, and she finally asked me angrily if I wanted my own prescription for Vicodin. I said yes, that would be helpful. She also gave me a prescription for gabapentin, which at that point, did nothing for the much-increased RLS.
I got the prescription, and scheduled an appointment with Dr. Mulrooney for a few weeks later. A couple days before that appoinment, I got a phone call from the clinic saying that Dr. M was ill and needed to cancel the appointment. I rescheduled for a couple weeks later. Meanwhile, the NP who gave me a prescription for the Vicodin hadn't given me any refills. The Vicodin was working well to control my now much worsened RLS. When I called about it, the nurses said they would only give me enough to last until the rescheduled appointment. This would have been fine, except that the rescheduled appointment was once again cancelled by Dr. Mulrooney, and they wouldn't be able to reschedule for another couple weeks, during which time I was going out of town, flying on a plane and sitting in workshops for a week. The nurses said that they couldn't refill the Vicodin because “I” had cancelled 2 appointments!! I ended up not getting medication before the trip because of these cancellations and because the nurses were very bad about returning phone calls.
I just need to emphasize at this point that severe, augmented RLS is an agonizing condition and it requires aggressive, responsive, compassionate treatment. This is exactly what I wasn't getting at your clinic. Your nursing staff acted like I was an addict getting my fix, rather than a patient in distress trying to get relief.
When I finally saw Dr. Mulrooney again, I was still in agonizing pain 24 hours a day, 7 days a week. He said that hydrocodone was fine for RLS, but since I was having pain all day long, he wouldn't treat that and I would need to go to a pain clinic. I asked about tramadol as an option, and he went off to look it up, and was happy to give me a prescription for that. Unfortunately it didn't work for me. When I took it, the pain morphed into the creepy-crawlies. When it wore off, the creepy-crawlies morphed back into the aching, pulling pain.
To me that was just WRONG because the pain had come about as a direct result of taking Requip, a drug which he prescribed for me, and Dr. Mulrooney or others in your clinic should have been prepared to treat common complications of that drug.
From then on, I had to get my hydrocodone on the internet until I could get in to see someone at a pain clinic. I would, have killed myself if I hadn't been able to get relief! Fortunately I was able to get in to the pain clinic within about 6 weeks. I've had a good experience at the United Pain Center. They have treated me very well from the beginning, even though it took a bit of educating them that RLS can be painful, and that opioids are one of the more effective treatments of RLS. Since the second month of treatment there I have taken methadone for the painful RLS symptoms, along with physical therapy with Alpha Stim, which has decreased the level of pain quite a bit.
It is now over 1-1/2 years after the augmentation from Requip, the symptoms have subsided quite a bit. But it is still clear that I have permanently worsened RLS as a direct result of taking Requip. The pain and pulling sensations have settled into a circadian pattern instead of being an all day affair. Now it starts mid afternoon and lasts until after midnight. I still have myoclonic jerks all day long, during waking hours, which is something I never had before taking Requip.
So now I am being treated for my RLS by a pain clinic. I like the doctors and nurse practitioners there, and am always treated with kindness and respect. However, they are not sleep doctors and do not treat the insomnia and delayed sleep phase that goes along with RLS. Nor do they treat the excessive daytime sleepiness.
After Dr. Mulrooney told me that if I needed painkillers, I would need to go to the pain clinic, I stopped coming to your clinic. I scheduled an appointment with HCMC and saw Dr. Mark Mahowald. It was a long appointment and I got the impression that these doctors might actually help me out with the circadian rhythm disorder and the daytime sleepiness. I procrastinated making a return appointment because I was finding it difficult to keep the sleep journal he had asked for. However, after a couple months it became apparent that they hadn't billed my insurance. (I don't return to a clinic until I know that they can bill things correctly!) It's a year later and after two 3-way calls between my insurance company and the billing office, they still haven't billed it correctly. I probably need to write to their administrators as well, because I really think they have the knowledge to work with me.
So basically, here I am with my RLS being partially treated, and nowhere to go to get the respectful care that I think I deserve. Your website has such an accurate and succinct portrayal of what RLS is about, and describes my RLS perfectly. Yet doctor after doctor just doesn't understand that RLS can be painful, that RLS can last all day and all nights in extreme cases, that RLS can contribute to a sleep delay in which it is much easier to sleep in the early morning hours until noon or so, and that refractive RLS can quite appropriately be treated with strong painkillers.
I recently went to a neurologist locally who insisted that the RLS wasn't causing my sleep delay, and ran a multitude of blood tests for various pain conditions I assume, an MRI on my back (yes, I've had 2 back surgeries, but and back surgeries are known to worsen RLS, but what am I supposed to do about that?) This is about the third time in the last year that doctors have have analyzed my blood looking for something that isn't RLS to account for my very typical RLS symptoms. The only thing that's ever found by these tests is that my ferritin is always low (last time it was 12) and that my thyroid is low or high or all over the map.
Recently I heard of woman who was delighted with your clinic in Plymouth. She saw Dr. Fox and was absolutely thrilled with knowledge of RLS, her knowledge of the Mayo Clinic Algorithm and the medication treatments recommended therein, and that yes, if needed, she would prescribe painkillers to treat her RLS. Apparently she also understood the risk of augmentation, and hopefully knows how to treat it when it does arise, and that when it happens, it can be very, very severe and need immediate, aggressive treatment.
I am writing this in the hopes that you can reassure me that if I were to return to your clinic for treatment of my RLS, insomnia, circadian rhythm disorder, and excessive daytime sleepiness, that you would treat me respectfully, and my sleep disorders aggressively. I would also want assurance that if I have an urgent issue that I would get a timely response. I am quite disabled by this condition and need help. I'm hoping that someday I'll be able to get back to work in ministry, and get up in the morning and be able to stay awake during the day.
I apologize for the length of this letter, but I'm reluctant to cut anything out because I think you need to know what many of us RLS patients go through when seeking relief from our symptoms. I'm still active on that RLS forum that I mentioned earlier (I'm a moderator now) and my story of going from doctor to doctor seeking appropriate treatment is quite typical. That needs to change.
Sincerely,
Rev. Susan Burns
So whaddayathink?