Newly diagnosed...already medicated

[steel0906]

Hi,
My name is Stephanie and I'm in upstate NY near Lake Ontario. I've been seeing a neurologist for my chronic "intractable" migraines for the last 8 months. This past week. I had excruciating pain in my legs, like a deep bone ache, that either kept me awake or woke me from sleep. It was just like the pains I'd gotten as a child that were always called "growing pains" even though I continued to get them off and on through my 20's and I stopped growing at 13! After getting no sleep for 4 nights and moving every way possible looking for relief, I had an appointment with my neurologist and described what I'd experienced, thinking it might be a side effect of one of the 9 or 10 preventive medicines he's got me on. He stopped me dead and said "you have restless legs syndrome". He then explained that I never had growing pains, but that it was always restless legs. Then he gave me bags of Mirapex ER samples in different strengths, explained the titration and I was on my way. I'm a little blown away. I've never taken a medicine I haven't researched before, but I was in such agony that I took it. I have no health insurance, what happens if I run out of medicine? And I knew nothing about RLS/WED until a couple of days ago.

[Polar Bear]

Hi Stephanie, welcome to the discussion board.

You mention the pains in your legs, I wonder do you also have unpleasant sensations.

There are 4 essential criteria that are all necessary for diagnosis of RLS/WED:

1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" to "burning" to "antsy". Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.
2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting
3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.
4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

Can you relate to these critera?

Mirapex which your neurologist has given you, and also Requip which is similar, are the first line for treatment for RLS/WED. What dose have you started at, you should titrate slowly and only take enough to relieve your symptoms. Have you found the Mirapex to be of any benefit.

Iron levels can be a part of the condition. An ordinary blood test may show your iron levels as ok but it is your serum ferritin levels that need to be checked. Doctors often reckon that a ferritin level of 20 is normal but for us rls/wed sufferers it should be at least 50 and preferably up towards 100. This test is not done as a matter of course when having bloods done and you should specifically ask that your ferritin is checked. Ferritin levels tell us what iron is stored in our brain, rather than the iron that is flowing in our blood.

The link in my signature will take you to an excellent discussion paper which would be useful for you and your doctor.

This book is excellent (for patients that physicians could also learn from) -
Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights and it is available from Amazon. Dr Buchfuhrer who is one of the authors has a site http://www.rlshelp.org/ which also gives lots of information and has hundreds of question and answer letters that are very useful. Dr B is a wonderful support and will answer email requests for guidance and advice.

Also as you are on other medications, make sure that none of these is aggravating your rls, such as anti-depressants, benedryl, antihistamines, anti nauseants, also alcohol and nicotine.

Please ask anything you like and we will try to help.
None of us are medical doctors but we do have a lot of experience of dealing with RLS.

[ViewsAskew]

Welcome to the board.

RLS/WED is a strange disorder. Some of us experience it primarily as an awful, creepy, nasty sensation. Some experience it as pain. For a long time, the medical community said it couldn't be painful. Now many doctors think it can be.

The key is what Polar Bear posted above - that movement makes the pain go away. WED (the new name for RLS, but so new that we're not all used to using it yet), is a movement disorder - and movement is a key component. If you move and the pain doesn't dissipate - even for a few moments - then it's not very likely to be WED. It's a bit harder with painful WED to assess this, but most people with pain say that walking/moving helps.

Another hallmark is that it's easily distractable, at least most times. So, if something happened and you had to use your brain power all the sudden, the feelings would go away. Crossword puzzles and games work well for many people. One of our new members says knitting works for her. I can't watch TV or read a novel, but I can often do work where I have to use my brain to figure things out. Sitting in a meeting is awful, but when I'm repotting plants and thinking about what they need or doing surgery on them, it goes away.

Does your pain go away with movement?

Also, as Polar Bear mentioned, iron can be involved. Have you had your serum ferritin levels taken? If not, please ask your doctor to do so.

Last question - I promise! How did he tell you to titrate and how much to start with?

[rthom]

Hey good to hear from U. When I was first on Mirapex it was not used for rls just parkensons so drug plans wouldnot cove it and as in your case couldn't afford the $700+ a month it was going to cost. So my gp gave me trial sizes and had me apply for a section 8 (i think) that would request the pharmasutical company to absolve the cost. In my case gratefully they did for a specified, time I think a year. Hope this helps, and good luck.

[steel0906]

Yes, I totally relate to what Polar Bear listed above. I get crawling sensations up and down my legs along with this unrelenting deep bone ache. The sensations run from my hips to my ankles and usually only come during the evening/night. However, because I've been periodically bedridden over the last 8 months with these migraines, I occasionally have symptoms starting in the late afternoon or carrying over into early morning. Movement, like walking totally helps. But I can't do that all night; I have children who I homeschool (at least I was, now they're kind of self-schooling). The Dr started me on 0.375mg for 1 week (that's what I'm taking now & it seems to be helping, but exacerbating my migraines), then 0.75mg for a week, then finally 1.5mg from that point on. Other than the fact that I've always needed to move my legs because I become uncomfortable sitting in one position for any period of time -- I'm known for standing up in the middle of meetings to walk or shift -- apparently, according to my husband, which the Dr asked me about, I also suffer from PLMD since he's always accused me of hitting and kicking him in the middle of the night. I never knew it had a name...lol. . Well, sorry so long; I hope I answered everything for now. And my next appt is in March, so I'll ask about ferritin. Thank you all.

[ViewsAskew]

OK - so sounds like it's definitely RLS. So sorry

Call your doc and ask him/her to write a script for a blood test that includes ferritin levels ASAP. Please do not wait for March. The reason is that there is strong evidence that no one should talk Mirapex or Requip when they have low serum ferritin. It can cause the RLS to get worse.

[steel0906]

I'll call his office Monday. Thanks for the heads up. I knew it was important, I didn't know it was THAT important. Thanks again.

[ViewsAskew]

I'll call his office Monday. Thanks for the heads up. I knew it was important, I didn't know it was THAT important. Thanks again.

Good deal!

For what it's worth, they didn't know this until a year or so ago. Many of us took the dopamine agonists only to find we had 24/7 RLS. I took it only for PLMs - my RLS was very mild. The doctors didn't know what to do, increased my doses, etc. It took 18 months of you-know-what to get off of it and stop the craziness. Helping people not go through what I went through - priceless.

[Chipmunk]

If the Mirapex is causing problems, there are many other meds you can take. I think even some migraine meds are sometimes used for WED/RLS. I'm assuming Botox didn't work for your migraines?