I need advice from those who have gone before.....

[HotLegs]

Hi all of you RLS sufferers out there!

I posted the following message to "Ask the Doctor" page of this site. Then I just thought I should try it on the discussion board too. Maybe there are some of you out there who have already travelled my road and are further along it and can advise me. I am so frustrated with the treatment I have been receiving from my local doctors that I cry at bedtime. Should I cry or yell at the doctors to get more effective treatment? Or is there really nothing they can offer me and it is all up to me to find a way of coping on my own? Please recommend any books that might help too. Here is my message to Ask the Doctor":


First a bit of background: I am a 56 y.o. female and I have had RLS for about 3 years. My symptoms are nightly uncomfortable nerve sensations in my legs that quickly build up and culminate in involuntary leg spasms. This repeats continuously in a cycle of about every 8 seconds. This all occurs around bed time just as I am starting to feel tired and in need of sleep. I also have continuous neuropathy in my feet in the form of burning and tingling sensations which are worse during daytime activity. Nothing I have tried has worked to relieve the neuropathy.

I have had periods of success in treating the nighttime leg sensations, however. I took ropinerole for RLS for a couple of years. It would work for a few months and then I would have to keep increasing the dose. I worked up to 4 mg/day and my RLS symptoms became worse than ever. I decided I must be in augmentation. My doctor decided to substitute the Neupro patch but I was allergic to the adhesive of the patch. I went back to ropinerole but still had nightly symptoms that made sleep very difficult. I decided to cold turkey off ropinerole. I had no support from my doctor so it was a very difficult and frightening thing to do, but after several days of insomnia and insanity I finally made it off the stuff. I also decided at the same time to eliminate all RLS triggers so I stopped taking antidepressants, decongestants, and antihistamines and removed caffeine from my diet. As I would eliminate each trigger I would notice immediate improvement in symptoms but only for a few weeks and then the symptoms would return.

I went to a new doctor who put me on gabapentin. I have now been taking 600 mg/day for about a month. At first it eliminated my nightly RLS symptoms entirely, but after about a month the symptoms have returned. I can see this is going in the same direction as the ropinerole, rapidly increasing the dose to the maximum and the symptoms reemerging. Soon I will have run through the two major classes of drugs to treat RLS. The only thing left in the treatment protocol is opiates. The prospect of being addicted to opiates doesn't thrill me but after coming off of ropinerole, I feel like I have already had experience with the drug detox process. I can't see any practical difference between addiction and so called "augmentation." Of course, I mustn't forget that the RLS disease process itself progresses rapidly with my form of RLS and will probably soon include similar symptoms in my hands as well as my feet.

So, I would like to know if there is any treatment protocol left that I don't know about. Even if opiates are the only thing left to give me relief, where are the doctors that would be willing to prescribe and manage them? Can you give me the names on any doctors in the Phoenix Arizona area who are familiar with treating difficult cases of RLS? The prospect of living the rest of my life with my nightly torture and exhaustion makes me feel very depressed and desperate. Thank you for any advice you can give me.

[Polar Bear]

Hotlegs - You've been through augmentation on the ropinerole and well done for getting yourself off it. I admire you.
Neuropathy isn't generally considered a part of RLS/WED although many of us do have neuropathic symptoms, myself included - mine have pretty much disappeared and I don't know why.
I've not used the Gabapentin but I think that 600mg is not a high dose for this drug, perhaps you just haven't reached the level required for relief.

I use ropinerole supplemented with SR Tramadol and also codeine 30/500. These are at the lower end of the opiate scale but I do have success with them. Think of being dependent on a medication rather than addicted. I will take whatever I need for relief of my symptoms which are in my arms and shoulders also.

You mention involuntary leg spasms. The movement of RLS/WED is voluntary although cannot be ignored.
Does walking ease your symptoms.
Have you checked the RLS/WED Criteria. Here are some questions to ask yourself regarding the disease.
1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When you are symptoms least?
12. Do you find your symptoms are less in the morning?

This book is excellent - great for preparing yourself with good reliable information, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

With regard to a suitable doctor in the Phoenix area perhaps another member will be able to provide information.

[HotLegs]

Thank you so much for your reply Polar Bear. I have the Buchfuhrer book you mentioned and it is an excellent book. That's how I knew about the treatment protocol. I have a few questions:

- How long have you had RLS?
- Did it take a lot of tweaking to find a drug regimen that works well for you?
- How long has your drug regimen been working? Are you constantly having to change it or is it relatively stable?
- Are you treated by an RLS specialist and if so how did you find them?

As for the urge to move, yes I experience temporary relief if I walk around but that causes me to be more wakeful. I have decided that I WILL NOT walk around when I am dog tired and want to sleep. I lie there and try to get into the Zen of the distressing RLS symptoms, try to transcend them and fall asleep anyway, someway. The ultimate result is what I described: eight second cycles in which my legs will spasm if I do not move them voluntarily by walking around and such. The creepy feeling dissipates for a couple of seconds and then builds up again into the involuntary contraction of my leg muscles. Sometimes the cycles repeat at a rate of every 10 or even 12 seconds but never longer than that.

I used to simply have those "urge to move" symptoms but now I have this. I don't know if it is just worsening of the disease or if it is a testament to my willful determination to resist moving. If it is not RLS and actually another disease altogether I don't have a clue what it could be. RLS is the best fit for my symptoms. I guess we all have variations in our symptoms. RLS is just a syndrome after all, not an actual disease, which means that it is just a checklist of symptoms. There is no blood test or something that says definitely yes you have it or no you don't. This leaves room for there to exist more that one actual cause for RLS which means more than one actual disease. In Buchfuhrer's book, he identifies at least two forms, one early onset with stable symptoms and one with onset in middle age and older that is progressive. I think some genes for RLS have been identified so maybe tests for these genes will be used to help in diagnosis some day. That is my view of things anyway.

I really appreciate your reply. Thanks again.
-

[ViewsAskew]

Hotlegs - treatment for this disease is just plain difficult for most of us!
Substitute dependence for addiction, and it and augmentation are both very different, and very similar. As you noted, it's hard to stop them and you are miserable - so, who cares? Augmentation, though, actually worsens symptoms - in the long run, it could be worse. Some of us ended up with those symptoms permanently. It's not supposed to happen according to the literature, but tell that to the people who it happened to!

Dependnce really isn't that awful - sure, it is miserable to stop the drug, but when I was dependent on benzos (for RLS), it took me 7 months to stop the drug! I was so physically dependent that I had to literally shave teeny pieces off of a pill to reduce the amount - if I reduced great than that, I was SOOOO sick I couldn't do anything but vomit, have chills, and hug the toilet.

Gabapentin - for some of us - seems to work for short periods. Then you have to up the dose. Fortunately, it doesn't happen to a lot of us. It could be that your dose is just too low. It could be that it's not a good match for you.

I augmented terribly on pramipexole - within a week I had worsened symptoms. My doc had no clue (this was years ago) and he just kept increasing it. By the time I got off of the drug, my symptoms went from occasional (I took it for PLMS, not for RLS/WED) to 24/7. Stopping the drug didn't not help me revert back to occasionally. I had tried about ten things when I finally tried methadone. It worked well for me.

But, I am one who does have problems with tolerance. I needed 10, then 12.5, then 15, then 20. When I started to need 25 (this took about 4 to 5 years), I told Dr Buchfuhrer that I needed a better solution. None of the other opioids worked for me - we tried 5 of them, I think. Finally, we hit on something that was great for a long time. I took methadone for 2-3 days, then pramipexole 2-3 days, alternating. Eventually I stopped because I was having issues with depression and the pramipexole. I didn''t augment and I didn't have tolerance. I'm back on a modified option - I take half my dose of methadone and half dose of pramipexole 5 days a week and a full methadone dose 2 days a week. I've been alternating them since about 2008, I think.

For what it's worth, some of us literally use the same drugs for years. Others of us? We need to change frequently.

I find that I have the same experience if I do not give in to the urge to move. I'd much rather be wide awake than experience those involuntary contractions! But, I can't tell you how rarely I have that with proper medication! So, there is hope.

[HotLegs]

Thank you so much ViewsAskew! Your detailed reply addresses many of my issues. You have no idea how much less alone I feel in all this to hear from another person who experienced what I am experiencing. I don't know a single other person who has RLS here in Phoenix. There is no support group or anything here. I am also very encouraged that you finally got an effective treatment regimen and from Dr Buchfuhrer himself no less! Do you live in Southern California or do you travel to his clinic from afar? I wish he could be cloned and the clones sent out to medical wastelands across the country. If only I could find a neurologist who has a clue. I have been through two so far who were worthless. I am back with my primary care doc now until I can get in to see another neurologist. It takes so long to get an appointment with the neurologist and then it turns out to be a waste of time- they don't listen to what I have to say and I find I am actually better educated on RLS than they are. It is so frustrating I want to scream and cry. I WOULD scream and cry if that's what it would take to finally get the right treatment. I am just at a loss.

I have not tried pramipexole yet. I am afraid of it after my episode with ropinerole. But who knows how desperate I might become if I keep having to up my gabapentin. At some point I can see myself crawling back to ropinerole. Another option I am considering is Medical Marijuana now that if is available in Arizona. It's worth a shot.

Again thank you for your gracious reply!

[ViewsAskew]

Given that you've "failed" ropinerole twice, it may not be a good idea to try pramipexole - at least regularly. I've failed pramipexole, ropinerole, Sinemet, and Neupro. Yet, I can take this, as long as I don't take it for too long.

My best guess is that most people take at least several months, and upwards of a couple years, before they typically augment. So, I'd think most people could take it at least for a couple weeks or a month, then take an opioid break for a week, let's say, then back to the DA. I know docs don't like such things, but they really are the best of both - it prevents dependence or tolerance (opioid) and augmentation (DA).

I travel to see Dr B - I'm in Illinois. It's worth it to me. I work with him online using email if things get problematic. For awhile, we were emailing daily. He truly is a national treasure, lol! I imagine just about everyone with RLS/WED would want to clone him if it were possible .

Glad to help - we've all been where you are in terms of feeling alone, isolated, and with no ideas of what to do next. We're all here because it's such a great thing to feel otherwise.

[Polar Bear]

Hotlegs - Views has been able to answer your questions.
You have asked about my RLS/WED experience.
I've had the disease for about 35 years and was unmedicated until 10 years ago. Symptoms were 24/7 and also in my arms before taking medication.
I found out about ropinerole when on a trip to the USA and spoke to my GP about it here in N. Ireland.
Ropinerole never really worked on its own and supplementing it with SR Tramadol and codeine has been the answer. It took a bit of tweaking and it is possible that there is an element of augmentation but at present my system and the results are acceptable.
No way could I ever try to fight the urge to move, if I need to move I do so, this means that wakefullness is an issue that I must tolerate.
I do take 7.5mg zopiclone (sleep aid).
There is no known RLS/WED expert here in N. Ireland and the one neurologist that I consulted with was a waste of time and money (I paid privately to see him).
My GP works with me using the above mentioned book. I haven't attended my GP with regard to symptoms/treatment for some time, perhaps 3 years. He trusts me to take my meds to suit myself within reason and continues to provide repeat prescriptions. I have to sign for the Maxitram (ER Tramadol) and the Codeine 30/500.

Just to confirm you mention that RLS is a syndrome - it is now categorized as a disease.

[HotLegs]

Thanks for sharing your RLS experience. I can't imagine 35 years worth with only 10 treated. So glad you finally found a medication combination that has been effective for the past several years. I too have found my GP to be more receptive to my suggestions than the neurologists I saw. Neither neurologist listened to what I had to say. The first subjected me to 2 days worth of tortuous arm and leg nerve tests with an electrified cattle prod. Then he declared I should double down once again on my ropinerole to 8 mg/day when I was desperate to get OFF of it. The next neurologist just sat there with a preoccupied look on her face while I spoke, twirling her hair with one hand and glancing at her watch. She just wanted to add the rotigotine patch on top of the ropinerole. UGH!

I really like ambien (zolpidem) for sleep but I can't find any doctor who will prescribe it for me these days. There must have been some kind of crack down on doctors for overprescribing it because they act like I am asking them for crack cocaine. One doctor even told me that ambien "eats your brain." The only thing I can get is a very low dose Xanax (alprazolam) which is totally inferior.

I would love to know who is the best RLS doc here in Phoenix. The docs listed on this site for Phoenix are no longer practicing or have bad reviews on line. I guess I could drive to LA and try to get an appointment at Buchfuhrer's clinic if I am desperate enough.

[ViewsAskew]

One of our past members lived in Lake Havasu - she started a support group there. BUt, this was long, long ago. It may no longer exist, though. Only thinking she might know docs in more than just that area of Arizona. http://www.rls.org/document.doc?id=2231 shows her info, but I have no idea how current this is!

[sleepdancer2]

Hi. I will add my thoughts and experience to the others. Maybe there will be a nugget in here that you can take and use. First I'd like to encourage you to be sure some of your symptoms aren't coming from another medical condition and not all from RLS. Vascular problems come to mind, and a common cause of neuropathy, diabetes. It sounds like you've been very thorough trying to eliminate triggers. Have you been tested to confirm your ferritin level is up near 100 and that things like Vitamin D, Magnesium, and the B vitamins are at normal levels?

I understand your concerns about the different medications. I've taken Neurontin, Tramadol, Requip, Mirapex and Sinemet. I've found occasional temporary relief from some of them, but ended up with more trouble than help.

Your description of the movements being patterned in timing sounds like periodic limb movements. Are you dozing when these happen? It's more rare for them to happen when fully awake, but it does happen. I almost feel guilty saying this after seeing the struggles of others here, but I am a lucky one who has for the last four years been able to control my jumpy legs by using a TENS Unit before bedtime. Took some time to figure out on my own how to get the best results as doctors don't yet recognize its usefulness for this purpose, but my worst night now is still better than my best night on any med. Has it been 100% effective? No. But my rough nights come many months apart. I can deal with that.

Good luck finding what works for you.

[HotLegs]

Hi Sleep Dancer2 and thanks for your input to my appeal for advice. My ferritin levels are normal and I take a daily multivitamin which is the Costco equivalent to Centrum Silver. And I don't think I have PLM because I am acutely conscious when I have the leg contractions, often sitting there timing them with my watch, marvelling at their frequency and wondering if that information might be a clue to what is going on in my body neurologically. Maybe there is a medical researcher out there who might be interested in the data.

I am interested in your use of the TENS Unit. Actually, I would have liked to post my appeal under a general treatment category but there wasn't one, so I chose Prescription Meds. I googled it and it looks like an EKG meter and appears to be pretty inexpensive. Do you need a prescription for it? Do a lot of other RLS sufferers find it useful?

Thanks for contributing to this discussion!

[HotLegs]

Yes Viewsaskew, I noticed a support group in Lake Havasu City of all places and wondered why there was one there and not here. I applied to rls.org start a support group in Phoenix and submitted all the forms about 4 months ago but never got a reply from whoever is in charge. I don't really want to lead a group though, I just want to know what doctors and other resources are available to me locally and couldn't figure out how to find that information on my own. I am beginning to suspect that there are no specialist docs here worth going to, just a bunch of clueless time-wasting expensive neurologists I have to wait months to see. I don't know how willing my PCP will be to keep winging it with me, prescribing drug combinations for me to experiment with using information I can glean from the internet and this forum. I am trying to come up with an intelligent plan of attack. It seems the basic trouble with the drug treatments in my case is their effectiveness is so short-lived. It's like my RLS is very clever and adaptive to anything I throw at it.

[ViewsAskew]

Have you emailed or called the Foundation just to check in? It's unlike them to ignore someone's offer of help! I wonder if the paperwork slipped through the cracks somehow....

One of the things that many of us have done is to combine the info from the Clinical Management book along with an email from Dr B. Since he answers just about any question put to him, many of us have taken his emails to our PCPs. I even went so far, long before he was my doctor, to ask if he'd talk to my PCP. He said he would. I honestly don't know how we got so lucky to get a doctor so willing to help us, but we did!

For about 2 years, I managed things with this model and my PCP. Eventually, I needed a different solution, but it was a lifesaver at the time.

[sleepdancer2]

About that normal ferritin, what exactly is your level? The normal range is quite wide, and people with RLS/PLMD are generally advised to keep their level at the higher end of the normal range. A result may be technically normal, yet inadequate for a subset of people.

As to PLMW, here's a bit of reading for you if you're so inclined. I don't think a whole lot is known about it, but it is being discussed. Just curious, any chance this happening while awake was while on the Ropinerole and that you aren't doing it now? When I was augmenting on Mirapex my movements intruded into my wake time (documented on multiple sleep studies). Once I went off the med, the wake movements stopped,though the sleep movements continued.
http://www.ncbi.nlm.nih.gov/pubmed/17040005