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.
Bronwen wrote:Betty, I now tell people that I have Willis Ekbom disease and that it is a progressive neurodegenerative condition of the brain. That shuts them all up pretty damn quick, as they now fear you are about to go barmy on them.
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.
I do like the WED name sooo much better. I have trouble - can't - spread some of the Foundation's materials because I have such a strong negative reaction to the old name. I actually cannot bring myself to use it. I've tried. I want to raise awareness in the worst way, but when I try to post something from the Foundation on my facebook page, for example, I actually can't do it. Sometimes I get as far as hitting Submit, but then I delete it right away. Just because of the name they use.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
I guess I'm one weird case. NONE of the dopamine antagonoists helped my RLS and Requip even made it worse. The others I got very ill on. Neupro wasn't effective after 3 nights.
There are some people who augment on the dopamine agonists after just a couple of days, so it looks like you might be one of them.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
Hello again, this is sleepless Eileen. I joined this discussion board a couple of days ago (December 7, 2018) and a nice man by the name of "Steve" suggested I let everyone know where I am located in case someone knows of a doctor who can/will help me with Severe Refractory RLS. I live in southern Indiana, Sellersburg to be more precise. I am just about 4 miles from Louisville, KY. My insurance only covers Drs. in Indiana, however, I am so desperate at this point I am willing to travel anywhere, even if I have to walk! I have been dealing with RLS for almost 10 years now. My Dr. at the time put me on requip, it worked great for a couple of years. No symptoms at night, I could even take a nap on Sundays if I wanted, wow! Then, I first started noticing I could no longer take a Sunday nap...I also had to start taking my medication earlier so I didn't flip and flop for an hour or more before I fell asleep and of course I started waking up earlier with the creepy sensations. So, next my Dr. put me on .5 pramixepole, again it worked great for a couple of years. I then started having unexplained whole body pain, no fibromyalgia, no arthritis nothing to indicate why this was happening other than I worked in construction, yes don't laugh, old woman hands on construction. I had to go to a pain clinic to receive Hydrocodone. I took 10/325 4 times a day for a little over a year. No problems, no RLS symptoms. I did however hate going to that pain clinic because it just felt...sleezy? I know that's not nice but it did. I changed Drs. and I absolutely loved this Dr., he treated me with the respect and care that is very hard to find today. I started to notice the return of my RLS symptoms at the .5 and my Dr. increased the dose to 1mg all the while continuing my hydrocodone at the same dosage. Around June of this year I started noticing my my RLS symptoms returning even though it hadn't been very long (a few months) since my Dr. had increased the pramixepole. I was to have a 3 month check up at the end of August (urine screen, how are you, etc.) I was going to talk to my Dr. about the RLS symptoms returning. Sadly, my Dr. had passed away on August 10, 2018. My life has been turned upside down since then. No doctors will write prescriptions for hydrocodone, especially since it is not a "FDA" approved treatemt for RLS. I also have ADHD and could not get that medication either. First new doctor told me she would not write any of my prescriptions and that I needed to see a psychiatrist, a pain management clinic and a sleep study doctor. Ok, sleep study doctor asked what medications I was taking and why, before I could even get the word "hydrocodone" out he yells at me "I am not writting you a prescription for that and if that's why you are here you can forget it"! I was stunned, I hadn't asked him for anything! I was just answering his question. Next, a Neurologist 100 miles a way no less. Same thing from him. Oh, he did want to put me on a great big dose of pramixepole!!! No thanks Dr., have a great day. Just wow! I am so depressed...how I would love to just crawl in bed (or a hole) and pull the sheets (or dirt) over my head and sleep until this all goes away but wait, that's right...I have RLS. I can't sleep, I can't crawl in bed or a hole until this passes because I can't even sit still at all.
Eileen, I wish that you hadn't needed to find us but I am glad that you did. I also wish that you tale of woe wasn't unusual, but it is one that many of us have been through ourselves.
Obviously you need to find a doctor who is capable and willing to treat your RLS. One option is to travel to one of the RLS Foundation's Quality Care Centers. The closest ones to you are probably in Nashville, TN and Atlanta. You can find the full list at https://www.rls.org/treatment/quality-care-centers
Another option is to start calling every neurologist that your insurance covers, concentrating on any who list movement disorders as a specialty. The neurology department at a state medical school or teaching hospital would be a good place to start. Ask to speak with a nurse and then ask two questions 1) does the doctor have experience treating augmented RLS and 2) is the doctor willing to prescribe an opioid for the treatment of chronic conditions such as refractory RLS. Obviously an answer other than an assured Yes to both is far warning that the doctor is not a good candidate. If you find a doctor who has experience treating severe RLS, be prepared for a wait. Demand is such that it is not unusual to have to wait several months for an appointment, especially a new patient appointment.
A final option would be to find a GP who would be willing to learn and to work with you. There is a great book, "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. It costs about $35 on Amazon. It was written for doctors, but is at a level that you will be able to understand. Many of us have used it to educate ourselves and our doctors. Simply highlight a couple of sections relevant to your situation and show it to the doctor. Finally (and this might help with the pain management folks), there is a paper that was published at the Mayo Clinic earlier this year titled "Appropriate use of Opioids for the Treatment of Refractory Restless Legs Syndrome", https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
Thank you so much for the good advice, but more so for just being someone who doesn't treat me like I'm crazy or just making it up! I am going to purchase the book you suggested today. I have a Dr. appointment with my GP tomorrow at 11 am. He is a very young Dr. just recently out of school. He has been very compasionate to my delima but I just don't think he has ever dealt with anyone in my situation yet. However, at my last visit with him which was 2 weeks ago I did leave him a copy of the above article you mentioned from the Mayo Clinic. I asked him to please read it. I am also going to ask him if he would be interested in monitoring me for the National Opiod RLS Registry. Who knows, maybe he will become a great advocate for people like me who have no where else to turn in our community. Thank you again so much!
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.
Thank you so much for the resources and in information. My husband has been taking generic Mirapex for years. He was having a terrible time with what we assumed was augmentation ( with all the symptoms). We switched him back to non generic Mirapex and, when we did,he got relief, and has been sleeping 4-5 hrs., sometimes more, a night!!! We are waiting for a date to see a neurologist who “appears to know about RLS. Any input on this?
There have been issues with generic medications sometimes not being as strong as they are supposed to be. It could be that this is the situation he has experienced. The name brand product has tighter quality control than some generic manufacturers use, so you can be more confident of getting exactly what is advertised.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
Hi. I started taking Ropinirole in January of 2015 after it was prescribed to me after I took a sleep study. A Dr. Goza out of Little Rock, Ar. prescribed it. I was taking 2 mg and after my RLS became worse and more frequent, I went to a neurologist and he tried to wean me off of it, but I still take 1 mg. I drive alot for work and I also ride with someone while at work, so I have to keep the med with me for when my RLS strikes while I'm stuck riding with someone. Driving isn't as bad for me I guess because I'm moving some, but riding is awful. But it's gotten to the point that it's affecting so many areas of my life now that I'm just happy to find other people that understand.
Brian wrote:Hi. I started taking Ropinirole in January of 2015 after it was prescribed to me after I took a sleep study. A Dr. Goza out of Little Rock, Ar. prescribed it. I was taking 2 mg and after my RLS became worse and more frequent, I went to a neurologist and he tried to wean me off of it, but I still take 1 mg. I drive alot for work and I also ride with someone while at work, so I have to keep the med with me for when my RLS strikes while I'm stuck riding with someone. Driving isn't as bad for me I guess because I'm moving some, but riding is awful. But it's gotten to the point that it's affecting so many areas of my life now that I'm just happy to find other people that understand.
Hi Brian, welcome to the RLS communitee. You are in the right place. People who don't have RLS just cannot really understand how bad this disease can be. You will find lots of help here, lots of smart knowledgeable people, and lots of understanding, compassion and empathy.
I'm glad you haven't increased your ropininrole dose. If you have looked around you will have found that this drug, along with it's relatives, pramipexole and Neupro, are associated with augmentation. This a problem in which increasing doses of the med causes increasing symptoms, rather than decreasing them. It is a good sign your neurologist tried to get you on as low a dose as possible. You still may be augmenting.
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the guidelines: https://www.sciencedirect.com/science/a ... via%3Dihub
Brian, your doctors have probably run blood tests to check on your iron levels. Do you know what the results were? Do you know what your ferritin level is? Sometimes doctors will simply tell you that the results were normal, but normal ferritin levels for the general population are not adequate for those of us with RLS. Normal for others is anything over 20. For RLS it needs to be at least 75 and better yet over 100. That is why Holland mentioned treatment with IV iron.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
Polar Bear wrote:Bring gin instead I hate gin, but I'd drink it by the bucketful if it would help. Or perhaps... just wouldn't care !!
We are a group of 6 friends of very long standing, at least 40 years, who have helped each other and given a shoulder to each other through the hard times of illness, bereavement and divorce. Raising our little ones who are now spread around the world.
Some of us meet more regularly than others but we always always meet up, all 6 of us, at least twice a year. for a lunch that often runs from late to very late......
I guess we've all got the friend who is opinionated and is a pain in the a**......... but the thing is, as we ofen tell her ...... she's our pain in the a**.
I've used the knuckles and the fist. I've even used the fly swat which doesn't go deep enough, and indeed that's a sight you wouldn't want to see.
And yes, trying to describe RLS is boring boring, I bore myself at times.
I remember reading somewhere, possibly on this site, that some folks feel it is easier to just refer to the sensations as pain because pain is understood.
However, I think describing it as pain doesn't give an inkling, not even an iota, as to how the crawlies will torment and destroy us.
Though I dare say that a person suffering with agonising pain would be saying they'd sooner cope with RLS.
Interesting topic. I am new to this disease (coming up on 2 years since diagnosed) but have often thought about the Restless Leg label. Considering the awful anxiety I sometimes experience at 3 in the morning it's wildly misleading. My wife and I once experienced a very bad reaction to Tylenol PM which made us both want to crawl out of our skins so when I tell her that my terrible anxiety creepy crawly nerve explosions are similar - she gets it. But no one else does. I have used the wash cloth twisted as hard and as much as one can as a metaphor but that leaves out the creepy feeling. I like the "progressive neurodegenerative condition of the brain" description. A lot better than Restless Leg Syndrome. Btw I have found a couple shots of Bourbon while waiting for the drug to kick in does help.
Hello. I am a new member I struggle with restless leg syndrome very very bad. I don’t have health insurance right now and I’m not really sure what to do. I feel like I am doing everything I can. Before I move my doctor prescribed me three 300 mg gabapentin at night. That is what I have been taking but it doesn’t help much. I have taken Requip in the past and it did not help. I am at most of the night with restless leg syndrome. I try to take hot baths, I take magnesium tried stretching in the massaging my legs and hands. I’ve tried eating bananas. It is just horrible. Does anybody on here know if there is some type of doctor that can do over the phone appointments? Something like Teledoc but only with restless leg specialist??