For some reason most doctors seem reluctant to work with RLS patients. I called 4 doctors given to me from RLS org. and all four had no interest in treating a RLS patient..
IS it just ignorance of the problem or do they not want treat a problem that has no real cure at this time? Don't know why I have to drive to CA from AZ just to see a doctor who is willing to work with my RLS. Any Thoughts?
My Dr says no Drs are interested as there is no money in it. Cancer, Heart Disease and Diabetes are all 'big' at the moment and there is an outrageous amount of money thrown at them, (in a lot of wrong areas imho).
Again, imho, I think there is little known and understood about RLS and its too much work for overworked Drs to be bothering about a condition that just brings 'discomfort' (I know, I know its a sh1t load more than just that but to unknowing that's all it is), when there are conditions that kill.
We and our well being come far down the line unfortunately.
I am in the UK where we have the NHS rather than insurance funded healthcare. But the issues are the same - all the funding goes into cancer and heart disease and emergency care. The NHS is great at SAVING your life but does not give a damn about quality of life, so chronic misery-making conditions such as RLS, fibromyalgia, even epilsepy, etc get no funding which means no research and no quality of care. IMHO it's a ticking time bomb because the millions who have such conditions are, through lack of care and treatment, going to end up with heart disease and cancer. Not to mention the fact we cannot contribute to society as we would like to because we are just too damn tired and cannot work to pay taxes. I would rather have quality of life than live for a long time because the NHS 'saves' me when I get life-threatening illnesses but doesn't help me with my PLMS and the effect that has on my life. I saw it happen to my father - chronic health issues which the NHS did not help with, he then got sepsis from having a catheter and the NHS spent thousands 'saving' his life but there was no follow up. So all that happened was he continued to be in horrible pain and drank to relieve it until he died of a urinary tract infection (from his catheter) and liver failure. The NHS and the welfare system in the UK are an exercise in eugenics by successive governments.
Apologies for the rant, feeling quite low and anxious about my upcoming consultant appointment when I know she will just ask me what meds I want to try next - and I don't know. But it is good to sound off knowing that you all understand what a devastating effect this condition has.
So sad to hear you are dealing with the same conditions we have here in the U.S.A. I have been suffering for a long time with Restless Leg Syndrome (RLS) for over 30 years now after the doctors put me on statins to lower my cholesterol and it destroyed my muscles and nerves in my legs. After that I got RLS and have had it bad ever since. I feel there is more that could be done if we could get someone in a high position to help push this problem to the fore, but so far, nothing. This is a problem that does lead to depression, and other life altering experiences. (even death) We need to somehow unite and get the changes needed to help people have a good quality of life instead of just existing day to day. We can shoot million dollar bombs off all day, but can't take care of our people and give them some quality of life, To bad some of these people making the decision where to put our taxes couldn't experience our life for a week.......things just might change. I guess until then we live as best we can, do what we are able and continue looking for answers in this crummy ole world. And yes I know, pray for a better future.............
Since I started getting access to this web site I have complained about doctors knowing almost nothing about RLS. It is not a subject being taught in Medical School. No seminars being held sponsored by Big Pharma , but big Pharma will quietly ask neurologists to prescribe off label drugs that my Neurologist said he was keeping me sane with long enough to get a cure accidentally or my death whichever comes first and he is betting I will die first, judging by the pace thing are developing.
Big Pharma has never even lookd into the age old question. Just where does the signal to move come from. RLS come first and the meds we get to keep us sane gives us all the other stuff we'd not get unless we took a host of poisons.
Hell, I forgot to ask the question I opened up to ask. I get on the soap box against medical science and medics and forget .
Here is the question. Is RLS a condition or a disease?
Many people have trouble finding a good doctor. One recognised expert in the RLS business is Doctor Marc Buchfuhrer in California. Do you mind telling the Doctor's name?
I also live in Arizona. I had surgery last year, and I told the anesthesiologist that I have RLS and sometimes I have had symptoms when awakening from anesthesia. She told me "everyone has some restless legs, it's nothing to be concerned about". She clearly did not think RLS was a "real" condition. It is very frustrating. My primary care told me to see a neurologist for RLS but did not recommend a specific doctor. Really, I don't know who to see. I am on Requip for the past 10 years. It works about half the time. I don't know why it works some nights and other nights my symptoms are terrible.
I have a very kind, very competent primary care physician. She has been a physician for about 20 years, I believe. However, she was woefully uninformed about RLS. Her first thought was to suggest one of the dopamine drugs. I respectfully told her about augmentation. She looked it up as I sat in her office and was gracious enough to say, "Oh, I didn't know that." She was also kind enough to prescribe, and to continue to prescribe, an opiate (Norco) to be used only at bedtime for the RLS. She also didn't know that SSRI's can make RLS worse, until I mentioned it. So now (at my suggestion), I'm doing a VERY slow taper off of sertraline, which I've been on since 1994 (gasp!!!!) She is not pushing me to do it faster. I've also sent her some medical journal articles recently about low dose naltrexone and opiates other than Norco, and she is kind enough to read them in her "spare" time (ha ha---she has small children at home). So my experience with RLS is an ongoing work in progress for now. Sleep is so important! How many doctors would dare argue with that? Wishing us all comfort and rest.
This seems to be a big part of my problem also. My Dr has the 'deer in the headlights' look when I try talking to her about my RLS. I had to really raise my voice and get a little nasty with her when she shrugged her shoulders after I told her about the roprinole not working anymore. Now I am to see a neurologist the first of January. From what research I have done on him, he has treated considerable RLS patients. Here's hoping!!
I feel for you. Over the past 20 yearsI have gone to at least 6 neurologists and really have not been helped by any of them. They use the same ole playbook Gab. and then not sure where to go. You need to go to a doctor trained in RLS. The RLS org has care centers they can help you with. Also thee are groups that meet around the country and discuss RLS. Some of them could possibly help you. I travel from AZ to CA once a month just to get a good doctor who is knowledgeable in RLS. I could find none here in AZ. Sure some say they know the disease but few if any have really studied it. There is a doctor in Mayo clinic Scottsdale AZ but they said they were not taking on any new patients. (I am sure if you hav enough money that could change.) Anyway wishing you the best.
Rls and Hrt
RLS
RLS and pramipexole
Antibiotics triggering your RLS???
Rls and exercise.
