What would you want in a book about RLS?

[ViewsAskew]

If a doctor was going to write a book about RLS intended for patients and family of people with RLS, what would you want in it? Just think, you could use this to take to YOUR doctor, to work, to your friends.

One thing I just thought of is that it happens to kids, teens, adults, anyone.

Another thing I'd want to see included is a chart of meds - side effects, withdrawal issues, dosing information, which meds are better for PLMD alone vs RLS alone VS RLS and PLMS together, which ones cause augmentation or rebound, meds that make it worse, meds that work well together, etc. I'd also want to see something about studies for each of the drugs, chances of addiction, and accurate info about the fact that most RLS patients do not get addicted to opioids.

BTW, happy Mother's Day too all tired moms .

Ann

[jan3213]

It's Jan

I guess this is stating the obvious, Ann, but I think right off the bat, I would like for there to be a general statement saying that RLS is a REAL PROBLEM and that it is SERIOUS! I always had an issue with a co-worker, who was downright hateful when I would have to call in sick after days and days of no sleep. BTW, I was HER supervisor! I would l like the doctor/author to emphasize how RLS effects driving, sleeping, health, QUALITY OF LIFE--I guess I just wrote the whole darn book! HAHA I'm pretty sure you know what I mean.

Jan

[ViewsAskew]

Yeah, that's a good one. Some people don't take it seriously - and being sleep impaired is so serious. Maybe part of that is a section on how to explain RLS without sounding like you're crazy or whining!

I'd also like to see something for people newly diagnosed - how do you pick a doctor? What questions should you ask a new doc? What should a new doctor do - tests to run up front (like ferritin levels).

And how to tell when it's not RLS - gosh, I sure hear a lot of people concerned about if the pain they have is RLS or something else. When does a good doctor make the decision that this is more than RLS.

Ann

[jan3213]

It's Jan again!

As you know, Ann--I'm dealing with some of those very issues right now, myself. I've had RLS most of my life, had been going to the same neuro forever and he NEVER has checked my ferritin levels (I've fired him and am seeing a new neuro who IS checking my ferritin levels). AND, the pain issue. My former neuro nonchallently told me, without really checking anything, that I had fibromyalgia. My new neuro is going to check to see what my pain REALLY is. So, good doctor vs. bad doctor. These things are important for people with RLS to know. I think you raise some excellent points!

Jan

[Lovechild]

I agree with all of you. You hit it right on the money. I would also want to include something about your family needing to go to doctor appointments with you, so they can know that it is very serious and be supportive because they are our support group and like it or not we need them when it comes to RLS, or at least I do. I don't know what I would do without them, and about the doctor thing I can't wait until more doctors are familiar with RLS, so they can help us better because let's face, they have no idea what we are going through and that angers me. Everyone with RLS needs to become a doctor! HA HA HA

Jamie

[ViewsAskew]

OK, I need your help. One of our esteemed doctors is actually writing a book on RLS. He mentioned it to me in an email, so I originally posted this to see what you guys would say but didn't tell him I posted it. I copied the info that was here and sent it to him today, but I didn't know if he would like it or not. He was thrilled to get it. He asked if I would get any and everyone's ideas and act as a clearinghouse and send them to him.

So, come on guys!!!! This is our chance. Many of us came here with questions, so many questions. His book won't take away our need to share with each other, but it would sure help us educate ourselves, our families and our doctors. He's offering to listen to what we want to have in his book. What an opportunity .

Ann

[jan3213]

It's Jan

Ann, here are some things I thought of for the doctor's book:

1. RlS is progressive.
2. RLS is either hereditary (mine is) or is brought about by an accident or trauma to the body.
3. People with RLS sometimes cannot sit still in public places like movie theaters or plays, so if they get up and leave their seat, they are not being rude.
4. RLS causes sleep disturbances which cannot be helped. Often, people with RLS will have to leave their bed and walk around or go to another place in their home to sleep.

I hope this helps.

Jan

[cornelia]

I think it is great that a docter is writing a book on RLS. I hope it will be something like: a handbook for RLS patients.
I think that he must have Virginia Wilson's: Sleep Thief at his side, becau se almost any item regarding RLS is established there.

Corrie

[bradyferguson]

I think that I would like to see something along the lines of treatments that are known to work and what will not work. For instance I was seeing a Psycologist for 2 years for drug dependance and she was convinced that if i meditated and continued to see her that my RLS would be cured. Well had she done a little reading she would have easily found out that this was not possible. We even used to get into heated arguments about this.

Brady Ferguson

[Sara]

Ann--

Back on Jan's comments. I think that all-day RLS also has to be mentioned. Mine SEEMS to be pretty much 24/7 a lot of the time now, but I only notice it a lot when I sit down. But almost ANY time I sit down now, I feel it.

I'm on-call for federal court jury duty this month, and I won't have the OPTION to get up, and I'll have to keep any wiggles and foot-thumping to a minimum so as not to be disruptive. During the bulk of the day, that's not going to be TOOOOO hard probably (although if called, I'll be sleeping in a motel in a strange city, so I may not sleep well, which WILL increase my symptoms all day.) But the later it gets in the afternoon and the more tired I get, the worse it's going to be.

I'm not going to mention it, because I'm not under a doctor's care at present. But also because I think most people who have just a passing knowledge of RLS think it's ONLY at night. I'd love to have a book address the issue that for some of us it's a much more life-pervading issue than that. Thank HEAVENS I don't usually spend much time sitting during the day.

(Good luck on the book, Doc!)

Sara

[jan3213]

It's Jan

This kind of expounds on the 24/7 RLS thing slightly. But, with that in mind, having RLS 24/7, EVEN THOUGH I'M MEDICATED, if I've have a bad night, tired as I might be, I cannot take a nap during the day because my RLS prevents me from being able to relax enough to be able to sleep or even stay still for any period of time.

This leads to several other things. Even though I am medicated, once I'm up for the day, I'm up. I no longer read books like I used to (I used to be an avid reader) because I can't sit still long enough to read. I'm up, I'm down--I'm up, I'm down. If I'm occupied DOING something, like sewing, working on my art, or on the computer, that's a different story. But, I have to be doing something physical. I think there are many of us who are this way.

Jan

[Lovechild]

I think that the doctor should know that RLS can be brought on by labor or pregnancy because I swear mine was. I remember feeling contrcations in my legs when I gave birth to my son 18 months ago, just like cramps, like now. He should know that more doctors need to get experienced with RLS to the best of their knowledge because from my experience they all suck, and we have to go through enough. We shouldn't have to deal with crappy doctors who don't understand us or even try. I hope this helps.

Jamie W.

[jan3213]

Jan again

Sara's potential problem with jury duty made me think of another issue which I think should definitely be pointed out the the patient and family: STRESS! We all know how stress affects RLS. I think a doctor should make the patient aware of what stress can do and he should tell the patient's family how they possibly help alleviate stress in the patient's life.

Jan

[Sara]

Jannie--

Was going to say "amen" to your post above earlier, but was having trouble getting the reply page.

And, I agree with you on the stress point, too. I think that both stress AND fatigue are important things to manage/avoid in general in dealing with RLS. I don't notice the stress link as much as some people here, but I do tend to get "worn out" during stressful times, and when I'm worn out-- either from emotional or from physical causes... or from illness-- my RLS is ALWAYS worse.

Good points, honey!

Sara

[ViewsAskew]

Wow, I was just reading something about making sure your creatinine levels were checked if taking neuronin. Guess I'd like to know what tests should be taken and how often for the different drugs. Also would want to know titration schedules. Geez, I've read conflicting info on that!

Ann