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Yet another newbie unlurked/ my story/ need help!

Posted: Tue Jun 16, 2009 6:59 am
by Cinnamon193
Hi everyone,
I've been lurking around a few rls sites for awhile, and am finally getting the nerve up to post. :) Sure hope I'm making sense - too many meds for me tonight. Sounds like you all can relate.

So, as you can imagine, I have a bunch of questions for you experienced RLSers out there.

Here's some background: In 2000, I was diagnosed with ankylosing spondylitis (autoimmune joint problem), and was treated most of the time with prednisone, NSAIDs, and enbrel, and painkillers. The meds started wearing off, and I had to turn to alternatives, and discovered the no starch diet (no gluten, corn, bread, pasta, rice, potato, etc), which I thought was a total crock at first - but turned out to be a lifesaver. I've been starch free for about a year, and I dropped all my meds in Jan 2009 (it was a gradual decrease in all meds). I also started getting bad fatigue and losing my hair about 2.5 years ago - just diffuse loss, not patches, and it just doesn't seem to want to come back. That's still undiagnosed. Rheumatologist is also considering fibromyalgia, as of my last appointment as well. Good times.

This is where it gets tricky: At the end of January, I got laid out with a case of Shingles over a few dermatomes in my left arm only, but luckily neurontin and antivirals got me through it. A couple of weeks AFTER that mess cleared up I start getting unbelievable leg pain/weird sensations on only the fronts of my thighs, and I have to get out of bed to make the pain stop. Hard to do when I have really bad feet pain too (for the past 5 years. It's undiagnosed, but MRI tells me there's nothing wrong with me - and I can just SEE that look in my doc's eyes and NO it IS NOT IN MY HEAD). Since I have neurontin left over from shingles, I start that, and it works, except I have to double the dose every week or so. And add morphine. Sound familiar?

The part I don't understand is that it came on out of the blue, and within 48 hours I thought I was going to have to cut my legs off. I finally make it to my GP, he sends me to a neurologist, both say they really have no clue, but are treating me with RLS type meds. The pain is always, always there - 24 hours a day, but worse at bedtime. All my bloodwork is normal, but I feel... just really, really bad. I'm 33 and feel 80. I used to run, hike, kayak, swim, etc, but just don't have the energy to do it, but if I make myself do it, I end up uber fatigued for days afterwards. It's not a weight issue - I'm 118 and 5'3", and there's no RLS in my family that I know of.

I've tried... oh lordy... you name it. Just about every supplement and diet restriction, alternatives, sex, meditation, soap under the sheets, whatever.

For drugs, I've tried mirapex, parlodel, ativan, amitryptyline, with no luck. Currently, I'm on 3 GRAMS of neurotin :shock: and about 15mg of morphine per day. I've started a trial of requip, but no luck so far - hopefully it'll start working miracles as I titrate up the dose. Ok, I don't expect miracles, I'll take what I can get at this point. I use zopiclone to knock me out at night - that's another odd thing - if I can GET to sleep, then I'm fine - the RLS doesn't wake me up. But (please don't hate me) I tend to sleep too much due to fatigue, and all the drugs I'm on - so not sure if it's a "restfull" sleep.

At this dose of meds, I'm not qualified to run the blender, let alone a car. So that is seriously hampering my ability to motor my way to school or anywhere - did I mention I'm in the final stages of a MSc in health research, and they are NOT letting me have a disability extension (taken too many already). You'd think people in Fac of Medicine would understand but uh-uh. So I may have to drop out of my degree with only months left, which would suck so bad.... don't even get me started.

So... does this sound like RLS? From your real-world knowledge, can it be associated with shingles? How long does it take for Requip to kick in? Is anyone else out there a non-responder to DA drugs, b/c from what my friend Mr. Pubmed tells me, RLSers should have a fantastic initial response to DAs. Unless this isn't RLS? (Oh right, it's all in my head, I remember now. ha. :roll: ) All I do is research this to death. I'm talking hours and hours in the med library, and I can not figure this out.

Mkay, I hope you're all still with me now that I'm done my schpiel. Can I add, this sucks? This ain't exactly my first ro-day-oh, cowboy, when it comes to chronic things, but seriously, enough already.

Thanks all who answer. Any and all advice is muchly appreciated. :D

re: Cinnamon ---- a newbie

Posted: Tue Jun 16, 2009 10:49 am
by Betty/WV
Hi Cinnamon: You really have your hands full. All I can say is that I hope you find some help soon. Sounds like you have been around the block a few times.

I don't know if your condition sounds like RLS or not. Could be RLS plus other things. Some times we are burdened with more than one condition, and its hard to seperate them. :roll:

I have had RLS for 30 or 40 years. Doctored with many doctors, tried many meds. I am now on mirapex and clonazapam. It is working better than anything else I've tried. Don't know for how long, but I'll take it, and if it quits working, I'll worry about it then.

You said you have done much research, and that is the first thing you should do. Try to find a doctor that will work with you. And that is not easy. This site is an excellent place to start. There are other RLSers on here that are more knowledgable than me. I'm sure you will hear from them.

A suggestion: There is a book, "Restless Legs Syndrome, Coping With Your Sleepless Nights." Written by Mark J. Buchfuhrer, Wayne Hening, and Clete Kushida. Doctor Buchfuhrer is an expert on RLS, and I imagine the others are also. Doctor B has a sleep clinic in Downy, Calif. and was on the board of RLS Foundation. Also you can email him with questions at I have emailed him a couple times, and usually receive an answer with a day. I'm amazed at that. :?

I wish you the best, Cinnamon. I'll be thinking about you and hope you keep us informed as to what is happening with you. :) BETTY/WV

Re: Cinnamon--a newbie

Posted: Tue Jun 16, 2009 10:56 am
by Betty/WV
One more thought, Cinnamon. Don't ever let anyone tell you that "it is all in your head". That makes me so mad. :x Also shows a lack of intelligence, especially from someone in the medical field. For along time they thought RLS was all in "our heads". I have been made fun of by doctors, when I told them I thought I had RLS. Now, they are beginning to realize there is such a thing. But they still know little about it. Take care. BETTY/WV

Posted: Tue Jun 16, 2009 4:56 pm
by Sojourner
Hi C and another welcome to the Board and our RLS family. I suspect from your background that you have done a lot of researching about rls, meds, etc.

I have not first-hand experience with "shingles." Seems I read, a while back, in Dr. Buchfurrer Q & A feature at that there was no cause/effect between rls/shinges. Seem that was dated though. I did not find a reference in his latest book, however. Have you tried posting to Dr. B. on the site. He responds very quickly.

Due to side effects, I was not on Requip or Mirapex more than several weeks. I think you should have some idea of whether the requip help in a relatively short period of time but getting to a therapeutic dose may take several weeks. We're all a bit different there. I think the key to Requip is to titrate up slowly and not necessarily follow the starter pack instructions. I'm sure we have had lots of threads on the topic. As you probably know, augmentation is problematic with Requip and can occur quickly.

I think the idea of the need to move your legs particularly when at rest and the movement improve the "need" is pretty much the benchmark or rls. Does that sound like you? Still, as you have probably read, many have rls 24/7 and have difficulty finding relief. I'm sure (know) that there have been many here who have rls who did not respond to meds such as requip and mirapex. I think that is what the Mayo Clinic Algorithm is all about. I think you are familiar with the Algorithm but if not it is a must read and can be found in the New to RLS Forum. So, I think (know) that the fact that you did not/are not responding to these meds is not a definitive indicator or whether you have rls or not---but I do think that that seems to be a prevailing opinion---IMO.

I do think at least one of your previous meds, amytriptyline (Elavil) is often mentioned as one med that sometime can worsen RLS (the "we are all different applies here). But still, it is often mentioned in that vein. Doesn't mean many here haven't tried it in the hopes it would help "us."

The Board has a Special Population Forum that deals with special conditions/multiple conditions and rls. There may be good info there as well. Certainly, whenever other conditions are present the whole diagnosis thing is more complicated whether it is with rls or not.

Finding someone or your doc(s) partnering with someone who "knows" rls is perhaps the best thing you will be able to do. If you are confident in that then... You mentioned blood work so I suspect your ferritin level were not a problem? Anytime, I hear of someone who is fond of the outdoors and becomes ill with strange symptoms, I think of Lyme disease. I know that's a stretch but I am in an area where that kind of things is quite common. I'm sorry I cannot offer more. I will be following your thread with interest. Best wishes, my friend. M.

Posted: Tue Jun 16, 2009 6:40 pm
by SquirmingSusan
It does sound like RLS to me, but maybe RLS plus something else? It's odd to have it come on so suddenly, but it happens to many people. Usually that happens after back surgery or a back injury, or an even that causes a lot of blood loss. But who knows, maybe the shingles triggered something in you that brought on the RLS.

One thing I would do is have your ferritin level checked. Ferritin is a measure of stored iron in your body, and is a different test than is used to measure iron in your blood. Low ferritin is linked to increased RLS in a large percentage of the population. There's a lot of iron in fortified cereals and breads, so maybe cutting out the starches has left you with less iron in your system. It can't hurt to check.

Otherwise, I can't think of anything that hasn't been mentioned. It really bites that your school won't cut you any slack for having medical issues. That just seems wrong to me.

Welcome to the forum.

Posted: Tue Jun 16, 2009 6:47 pm
by Neco
I assume you've been tested for Neuropathy, or at least the Neuro mentioned it ?

Re: re: Cinnamon ---- a newbie

Posted: Tue Jun 16, 2009 9:32 pm
by Cinnamon193
Hi Betty, thanks for the reply. I'm think you're right - I so many other things, rls is probably my bonus. How on earth do you or anyone else cope with this for 30 or 40 years? My heart goes out to you and people like you. Bless your heart.
I've heard of that book, and will track it down. Sitting still and reading is tough to do these days, but I'm considering getting a recumbant exercise bike so I can keep my legs moving and read at the same time.
Take care, and thanks again.

Posted: Tue Jun 16, 2009 9:40 pm
by Cinnamon193
Sojourner - I vividly remember reading one of the side effects of amitryptyline was rls, and that was the reason I dropped it. Sometimes I wonder about my doc. Being in the Canadian system, unfortunately, I can't shop around for a good doc, and I can't even get a referral to a new neurologist (last one retired with no replacement) who deals with rls. Hence the mad, obsessive researching on my own. And coming here to ask questions to all you fine folks! :)
I will check out the special populations forum - but just wanted to check in here with the newbie section first and say hello.
You all are a great group of people.

Posted: Tue Jun 16, 2009 9:45 pm
by Cinnamon193
Hi Susan, I've had monthly bloodwork done for years now, and looking back, it's always been fine. Always super healthy. Ferritin right where it should be. Always. Same for electrolytes too. Weird, isn't it. But that was the first thing I thought was wrong too. I'm wondering if perhaps there is an iron metabolism dysfunction going on - where my levels are fine, but my body doesn't know what the heck to do with it. I've read about rls hypotheses of that nature - at the brain level.
Hopefully someone will take pity on me at the school and give me an extra semester to finish up. I have a feeling I'd go into rls research at this point!
Thanks for your help.

Posted: Tue Jun 16, 2009 9:47 pm
by ViewsAskew
I wonder if the shingles didn't leave you with some residual neuropathy. As Zach said, I'd want my doc to rule that out.

Like Susan said, the likely scenario is that it's RLS PLUS....we just don't know what the plus part is.

Shingles is very painful; my heart goes out to you. My aunt has suffered with it on and off for literally years.

also, since you have one autoimmune, it's definitely a possibility that another autoimmune is at work here, too. My hubby, best friend, another friend, sister, and sister-in-law all have autoimmunes and many of them have more than one. The second (or third) one can really complicate things and make things look like things they are not. I'm sure you've looked into that, too.

Sounds like you have a LOT on your plate. Much much too much. I am speechless that they won't give you an extension for the degree....

Posted: Tue Jun 16, 2009 9:51 pm
by Cinnamon193
Zach wrote:I assume you've been tested for Neuropathy, or at least the Neuro mentioned it ?

Hi Zach.... ya.... about that.
I saw the neuro, just once, and then he retired. Awesome. He checked my ankle/foot reflexes with that little hammer thingy and pronounced me healthy, and free of neuropathy. Umm... call me crazy... but I'm pretty sure it takes more than that. No nerve conduction tests or anything. And my GP doesn't think I need further testing. I keep going back to the GP guy - I figure if I harass him enough, he'll just send me for the testing to get me off his back! Nice method, but hey, whatever works. Meanwhile the buzzing, pain, and on-fire sensations continue in my perfectly healthy feet. lol

Posted: Tue Jun 16, 2009 10:03 pm
by Neco
That sucks.. Some doctors are total imbecilles..

I don't know much on the diagnosis of Neuropathy but all I can say is keep trying. It sounds like it is either RLS, or Neuropathy, or god forbid, both..

But the good news is some of the medications used to treat these two seperately, are also the same.. So if you end up on Neurontin, Lyrica, or Opiates, you will probably get relief either way or at least hopefully some minor improvement.

Posted: Tue Jun 16, 2009 11:02 pm
by SquirmingSusan
Cinnamon, a lot of time doctors proclaim the ferritin to be high enough, when it really isn't. For someone with RLS it should be at least 50. My doctor said it was fine when it was only 8. :roll:

Posted: Wed Jun 17, 2009 12:15 am
by Cinnamon193
No really, it's always good. I believe it was 85 or 86 at last draw.

Posted: Wed Jun 17, 2009 5:28 am
by mackjergens
i know you can have pain after the shingles are gone, but pain from shingles is usually always just right in the same area as the shingles were. Pain from shingles can last for months! its a cold stabbing pain, that happens in the exact area the shingles were.

have you done any research on the meds you are taking, I have noticed several on the board that have discovered that some of the parkinson meds will cause painful legs. Cant remember about neurotin,but would be well worth the effort to research.

Also on, there is a list on the left side of page that lists alot of movement disorders, you might like to read thru those and see if you see one that fits your symptoms.