Restless Legs Syndrome (RLS) Discussion Board

I am on the downside of 70s and have had RLS since my 30s. I have a few comments about my treatment over the years. First there needs to be a change in how we describe what happens to us. Calling the effect on our extremities a sensation is confusing to medical providers and does not invoke the true nature of the problem. What happens to us is pain. Medical providers can relate to pain and more likely to respond with treatment.
The second issue is the apparent absence of quantitation of the symptoms. I have started a measurement of what happens to me and am open to thoughts on this quantitation. When I am having problems, my wife asks me what stage I am in, it works for me.

Level I-Feeling uncomfortable but can carry on my daily routine or sleep.
Level II-Pain sensations in one or more extremities in evening or night, need to get out of bed and walk but not overly tired.
Level III-Pain in legs or arms, cannot sit or lay down, very tired, insomnia.
Level IV-Pain almost intolerable, exhausted to point of stupor, cannot focus, such as watch TV program or read. anxiety, sense of hopelessness.
Level V-Onset of symptoms any time day or night. Mental capacity diminished, Level IV symptoms with insomnia greater than 24 hours.

Perhaps there is already a quantitative scale out there that I am not aware of, but if not, I think it this helps as I keep a diary of my disease that I could explain to a medical professional. Open for discussion. It is 2:30am and I am at level II.

I have occasionally said to people, the problem with RLS is that language is based upon a shared experience and only other RLS patients have shared the experience of what our legs feel like. There have been clinical studies where RLS patients were carefully interviewed. I don't remember the percentage, but not everyone experiences RLS that causes pain. Personally, I have very severe RLS that causes significant emotional distress but I would not use pain to describe the feeling. So, each of us is a bit different.

As for numerical quantification, the International RLS Study Group (IRLSSG), which is the international committee made up of the RLS organizations around the world (the RLS Foundation is the US member) developed a scoring system to rate the severity of an individual's RLS. Like the IRLSSG diagnostic criteria's five questions, the scoring system is based upon how an individual rates their RLS. You can find the IRLSSG scoring system at:https://biolincc.nhlbi.nih.gov/media/st ... m/IRLS.pdf

As an FYI, I participate in the RLS Foundation's Opioid Registry clinical study. I get an email with a link to a questionnaire to fill out every six months. Some of the questions on that questionnaire are the same as the IRLSSG scoring system. When I get my results back from the study about a month later, one of the items is my current score for my treated RLS. To give you an idea of what that means, I judge that without all of the meds that I take, my score would be 31 or 32. I think that my last treated RLS score was 19. To me, 19 is like not having RLS but for those who have not experienced severe RLS or worse, 19 can be maddening.

Thank you will look it up. I thought there had to be something out there.

Interesting form for a medical professional. My levels are for relating to the ones around me on a daily basis. When my wife asks how are you doing, I can give a level of discomfort. I record my discomfort daily also and this abbreviates the notations. Its 10pm, I am tired but cannot lie down and have to walk, so that is a level II. I guess this method works in the home and could work in the doctor's office when looking back at my day to day history.

My symptoms are nowadays reasonably well controlled.
Many years ago, over a period of about 3 years, I kept a daily diary which scaled out of 10 for symptoms/pain. I often used the word pain to my doctor.
What you describe as your Level 1, I would never feel. Mine would start at your Level 2.
However, now after 45 years of suffering and medication that wasn't working, the correct medication is my friend.

You are lucky, I live in a rural area and cannot get an appointment with a neurologist anywhere in Oregon. My medical provider is sympathetic and willing to work with me, but it is just not the same. The Oregon Health Plan is socialized medicine and is driving Phyicians out of the state. Hard to get specialized help. Have been rejected by the Mayo Clinic and Oregon Health Sciences in Portland. I don't have the correct medication since Mirapex augmented three months ago.
I still think the word pain best describes our symptoms. Phyicians do not understand any other term for our condition.

Have you weaned off the mirapex with the support of your doctor. What is your current medication to treat your rls symptoms. Have you had your Ferritin Serum checked and if so do you know what your Level is. Don't accept being told 'normal' as this can be anything from 20+. Us rls sufferers benefit from a level of up around 100. This blood test must be specifically requested.
Take a look at the document linked in my signature which has been prepared by several esteemed rls experts and is useful for discussion with your doctor.
I achieved my current state by working with my GP who was very cooperative and willing to follow the guidance of this document.
At one time I was badly augmented on 5mg ropinerole (a sister drug of mirapex). I weaned myself off very slowly. My current medication is cocodamol at the max daily dose and pregabalin. The pregabalin was prescribed for neuropathy but has the benefit of also helping rls.
I have never found any neurologist to be of any help.

Edit:: I've just noted in another thread that you have come off your mirapex. So please ignore anything irrelevant in this post.

ran a ferritin test last week and the result was 279. Currently taking carbodopa/ levodopa twice daily. Gabapentin 300mg 3 times daily. This is not working, I am at a level IV right now. I feel hopeless along with the pain in the right leg. Have taken three hydrocodone too in the last 4 hours.

Carbodopa/levadopa should not be taken on a regular basis. It will very quickly cause augmentation. See the document link in my signature for discussion with your doctor regarding treatment.

A ferritin level of 279 is somewhat high, but no wheres near dangerous. I assume that you have been using some form of iron therapy for it to be that high. If not, you can expect your doctor to look for other reasons. A minor infection can cause it to be elevated or you could have a genetic condition that can be detected with a simple blood test. Either way, your ferritin level is great, from an RLS perspective. Unfortunately, about 30% of us do not benefit from iron therapy (I am one of that group). For us, we just need to keep our iron levels up but our RLS needs to be treated in other ways.