Yet another newbie unlurked/ my story/ need help!
Posted: Tue Jun 16, 2009 6:59 am
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 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. ) 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.
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 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. ) 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.