New to list; not to wed

[alcharla]

I'm a seventy year old woman who's had rls since I was about thirteen. It's gotten steadily worse over the years and in the last year I've developed a very uncomfortable new symptom. Instead of just needing to move one leg I find that the leg pulls toward my body; the muscles at the top of my leg draw up and have become very sore. I also have severe scoliosis. I believe that my back is the root of most of my leg issues. However, I've had two surgeries and what's left below those fixes is arthritis so I'm not sure how to handle this mess. I can't sit for more than a couple of minutes at a time, so I walk a lot and take scalding hot baths. I have an appointment with an acupuncturist next week. I'd welcome any suggestions anyone can give me. I was going to a neurologist who had me so over-medicated I was essentially a zombie. I was in the hospital in January with pneumonia and slept must of five days. I took no meds other than the iv antibiotics and felt almost human for a few days. Any suggestions will be welcome!

[Polar Bear]

Welcome to our discussion board.
When you say that when in hospital you took no other medications other than the iv meds, does that mean that you did not have pain relief medication. Usually this is pretty good at relieving the RLS/WED symptoms when prescribed for pain relief.

What meds/dosages were you taking while with the neurologist that made you feel like a zombie.... did the neurologist state he was WED/RLS aware.

I also have arthritis and scoliosis and fibromyalgia which can be the last things we need on top of the WED.
Acupuncture for my WED did not provide any benefit, however, as always, what helps one does not necessarily help another.

Please tell us a little about your actual WED treatment and any benefits that worked even for a short time.

Also, what is your ferritin serum level, have you had this test done. It measures the iron stored in the brain and this is not usually done with normal routine blood work.
Get a test done and ask for the actual reading, don't let the dr just tell you that it is normal. We sufferers want the level to be up around 100 and drs often feel that a level of 20 is 'normal'.

[ViewsAskew]

As Polar Bear suggested, more information would really help us help you. What have you tried - did it work or not? What were the side effects?

When you were in the hospital, you likely had pain medication - opioids. These almost always help WED. As Polar Bear said, many of us take them. But they aren't the necessary starting place.

Do get the serum ferritin test, as Polar Bear recommended.

[alcharla]

In the hospital I had antibiotics and prednisone only. No opioids. Over the last year I had taken clonazepam, baclofen, gabapentin, bupropion, dantrolene, Cymbalta, tramadol, and Mirapex as well as ibuprofen and Tylenol for my back, Previcid for a hiatal hernia and Detrol LA for urinary incontinence. The dantrolene was to control the leg spasms; at one point I was taking four 25mg caps a day plus 3 or 4mg. Mirapex and 60mg. of Cymbalta. I now take Detrol, Previcid, Symbicort and 2mg. Mirapex. Sometimes I take Aleve and at night a Tylenol pm.

I think sitting causes pressure on my low back, which in turn gets my legs involved. It's 7:30am and already my legs are flailing all over the place when I try to sit. Actually, leg...only one at a time is usually going.

The neurologist supposedly knew about rls. He did ferritin levels and said they were ok but I can check on that. He also did some muscle tests which were negative for muscle disease. He even contacted Mayo to see if what he was doing looked right.

My life is great except for the fact that I can't sit. I'm trying to get more exercise and cut back on sugar and coffee. I wish I could say that those things are helping but they don't seem to have much effect.

Charla
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[ViewsAskew]

Hi Charla,

That's a very large dose of pramipexole (Mirapex) by current standards. While the FDA allows such dosages, doctors have discovered that the risk of augmentation is increased tremendously as such doses. The max dose according to one expert? .25 mg. Since you have symptoms and are on that much, it's very possible you have already augmented. How much did you start taking initially and has the doctor increased the dose at all over time?

For a long time, people who've had back injuries or back surgery had said that this exacerbated their WED/RLS. There are a few hypotheses, but no one knows if this is true - and if true, why.

Detrol LA, I've heard, can worsen WED. But, my info is VERY old. Might want to check into that.

Tylenol PM contains dipenhydramine - this worsens WED/RLS is most people. Some people are lucky with it. Do pay attention - this might be making things worse.

Is there another neurologist you can see?

[alcharla]

I started Mirapex at least ten years ago at very low doses and have increased over time. I wonder if being off for a few days in the hospital helped...symptoms were much better on no meds for rls. I just switched back to Detrol LA from Sanctura and my symptoms have dramatically increased. I'll see if there is another med I can take. I also used to take tramadol for back pain but originally took it with Mirapex for rls. Doctors don't like to prescribe it for long periods but it seems to be very effective and doesn't make me sleepy. Right now I can't drive on the highway and probably shouldn't in in town because the Mirapex makes me zone out for a second or two. I've been to two neurologists, one who would send me home with WalMart bags full of samples and the second who just kept adding layers of medication. I wonder if it would be useful to go to Mayo to get a good treatment plan...the severe leg spasms or whatever they are is not rls according to the last neurologist. He used Dantrolene for that, but as with the Mirapex it took more and more.

There must be a way to live more comfortably with this. I guess the good thing is that I just keep plugging along, trying to figure it out. I know this group will help!

[ViewsAskew]

In our experience - you've had to increase the medication over time and that is called augmentation. The ONLY way to resolve it is to stop taking Mirapex - completely. If you search on that term, you will find a lot about it.

For what it's worth, many of us who have augmented find that we had PLMW - that is periodic limb movements during wakefullness. It was awful. It completely resolved when I stopped the Mirapex.

To learn more about it, search here. Also, go to the rls.org and look for a publication about augmentation. There is an excellent book that you can take to your neurologist - it's called Clinical Management of Restless Legs Syndrome, 2nd edition, written by Lee, Buchfuhrer, Allen, and Hening. I highly suggest getting it, learning about augmentation (and other things), then taking it to the doctor and showing it to him. It's how I got help, finally, when no one knew how to help me.

[alcharla]

Thanks so much for the info. I've ordered the book and will certainly take the pamphlet as well as the book to my doctor. I know it will be hard to quit taking Mirapex but I also know it has to be done.

[ViewsAskew]

It may help you, also, to write to Dr Buchfuher and get this in writing from a doctor. His email is somno@verizon.net. The website with the patient letters is at rlshelp.org. You can read pages and pages of past posts - or write him yourself. I used his response to take to my doctor and say, hey, this is what one of the WED/RLS experts recommends - will you help me do this? And, he did help me. Not all docs will, but some do.

[Polar Bear]

I also sent an email to Dr B and gave his reply to my GP. My GP was more than happy to take heed of Dr B's response and guidance.
My GP said that he knew very little about WED and was happy for me to research for guidance.

[alcharla]

Today has been interesting. Instead of any Mirapex, late this morning I took a Vicodin left over from my husband's recent bypass surgery. I took another after dinner when my legs had started to get really crazy again and all is calm. I've taken tramadol in the past for my back, and it seems not to be as addictive and it doesn't make me groggy. I'm hoping the sustained release version may be a help. I can't thank you enough for the suggestions...I feel some hope for the first time in a long while.

[ViewsAskew]

I wish I didn't need an opioid. I've tried every drug and non drug treatment* available including diet changes, exercise, amino acids, iron infusions, and the list goes on. And I will continue to try. So far, none have worked for me or have had such problematic side effects that I couldn't tolerate them.

But opioids work. And I have much of my life back. Do I wish that I could solve the issue of being much too awake at night? Absolutely. Would I like more in my life? You bet. And, I hope one day to have it. Until then? I'm mostly symptom free, I can manage most of the side effects, and what I can't, I live with. Mostly? I'm happy I am I am in a much better place than I was.

* Forgot to add this! I have not tried marijuana, kratom, or poppyseed tea - all of which work for some of our members here. It's because of random drug testing for work, because I started using DAs before I learned of these, and because I have concerns regarding regulation. All are worthy of consideration and I don't want anyone to think that these didn't work for me so I had to use prescription drugs.

[alcharla]

Close to the worst night ever. My legs are in full throttle...kicking all over the place whether sitting, in bed or standing. I know that this is withdrawal from Mirapex and that it will eventually subside. I slept about an hour but kept waking myself up with the leg movements. Obviously not enough Vicodin. I hope I can get some Tramadol this afternoon. Does the timed release work well?

[ViewsAskew]

Most of us have found that we're not able to stop any dopamine agonist, whether ropinerole or pramipexole, once augmented without help. It's just too hard. Those symptoms will actually get worse than where they are now - and you're likely thinking how can it get worse? It can.

I couldn't use Vicodin because of the vomiting when I take it, but not sure it would have been enough. I used methadone - not something many docs will prescribe. Some people have used oxycodone successfully. Tramadol likely isn't strong enough, either.

I'm not saying not to try it. Just be prepared in case you find it's too much to handle.

It usually takes between 5 days and a month for the extra symptoms to decrease and things to get to whatever your normal is. Then you can decide, with your doc, whether to continue on an opioid or try one of the other drugs. Once you aren't augmented, the other drugs may work.

[Polar Bear]

I tried a couple of times to come off ropinerole (requip) similar to mirapex, without help, and only lasted a few days.
Don't feel you've failed if it becomes too much. It is understood - by those who understand the condition - that it takes a strong opioid to get through the withdrawal period.
I wish you well