Partner dealing with RLS all over! All the time!

[geekgirl]

My partner is dealing with TERRIBLE TORTUROUS all-over, all day RLS. She's had RLS on and off for years, but in the past couple years it's become SO MUCH worse. Quite frankly, it's frightening to see her unable to deal with this, and not being able to help.

Basically, it's the creepy-crawlies all over her body-- face, hands, arms, stomach, even inside her nose, mouth and ears (as she describes it). It's typically worse at night, but also happens all day. If she gets woken up during the night it's the worst trying to fall back to sleep.

Hot baths help, but make it worse when she gets out. Applied heat and cold usually make it worse. Stretching doesn't help. In desperation, she's even tried the stupid soap thing.

She's given up caffeine completely. She's also mostly off sugar and wheat.

She;s had her iron tested and is not anemic. She takes magnesium/calcium before bed, along with melatonin and valerian. Also takes vitamin D. She's trying to get a diagnosis for something auto-immune related (doctors think either Lupus or something similar).

Currently she takes Atavan for the RLS. She's built up a tolerance, though, and needed 4mg last night to get it to work. Her doctor wants to take her off of that, and suggested seeing a specialist-- but who knows how long it will take to get into see one.

Questions-- does anyone have any experience with this severe RLS? Any tips on how to deal with severe outbreaks at home? Anyone have good RLS doctors in the greater NYC area?

[majoraward]

I have it so bad that I would pace all day and night without meds 24 hours a day. I take Methadone, Mirapex, Lyrica everyday mostly but also Ambien, and a new drug that I start tonight (Clonidine that she most likely would never take). I see a sleep doctor at a major hospital that has a sleep clinic. She needs to get to a sleep doctor ASAP, you are right it is serious. She needs to have an overnight sleep study to see if she has it first of all, it could be something else but since it is worse at night it sounds like RLS/WED. The other important question is does it stop if she is moving around? Like pacing should pretty much stop it, and then it would start back up after sitting or laying down especially at night. Good luck, I hope she can get some help.

[geekgirl]

Thanks for your reply!

We found a sleep clinic that has an RLS specialist at it in the area, so when she sees her doctor on the 26th, hopefully she can get a referral to go SOON.

It sort of gets better when she moves around, but not completely. Is WED different from RLS? She also has diagnosed sleep apnea, and a CPAP machine, but doesn't use it when the RLS acts up.

Hopefully we'll be able to get her some relief soon!

[majoraward]

Thanks for your reply!

We found a sleep clinic that has an RLS specialist at it in the area, so when she sees her doctor on the 26th, hopefully she can get a referral to go SOON.

It sort of gets better when she moves around, but not completely. Is WED different from RLS? She also has diagnosed sleep apnea, and a CPAP machine, but doesn't use it when the RLS acts up.

Hopefully we'll be able to get her some relief soon!

RLS is WED, WED is just a more realistic name as Willis-Ekbom Disease rather than a Syndrome. I have obstructive sleep apnea also and wear a VPAP machine, just a fancy CPAP machine. I can't use it when I have RLS either because then I can't lay down to sleep.

Mine does pretty much go away completely when I am walking, it may be different for other folks though. Good that you found a sleep doctor, I hope the doctor refers her and that she gets in soon, let them know it is severe and 24 hours a day, many people only have it occasionally and really don't even need medicine so it is good to clarify that it is really serious.

I know nothing of Ativan but it is also possible that it may be causing some of her problems now, some medicines start making RLS worse over time.

[Polar Bear]

Aaaaarrrghhhh.... I have just typed up a really long reply and it has disappeared !!!!

Geekgirl - your partner is so lucky to have someone who cares and is seeking help on her behalf.
Please go to the link in my signature and print it out. Use this for discussion with the GP. This is the RLS Medical Bulletin and has been prepared by the RLS Foundation.

It does not seem as though your partner has actually been prescribed an actual RLS/WED medication. Ativan is a sedative, it may help sleep, but it is not likely to help the symptoms of WED (we are all different and it may help some people).

I have tried melatonin and valerian, they are sleep aids and not medications for WED. They did not help me.

Also please - your partner needs to have her ferritin serum level checked, this is the level of the iron stored in our brain. A blood test may well be normal but it is the ferritin level that matters. We want it over 100, tho a dr is likely to say that 20 is normal. Forget that if you have WED, Also if the ferritin is around 100 it helps prevent augmentation which is a side affect that can occur when on certain medications. Augmentations is when the drug actually ends up making the condition worse.

By the time most folks find this site they are already suffering from severe symptoms. I've don't recall anyone having symptoms in as many places as your partner.

Please ask a GP for treatment.... read the link.

[geekgirl]

thanks everyone!

I'm really at my wit's end, here, which is why I posted today. She just took 6 mg of ativan-- in succession-- b/c each one didn't work to stop her skin from creeping and crawling. She slept for a few hours and is up again. Cross your fingers that it doesn't come back. I'm so close to taking her to the ER, but we don't know what they'd do for anyone there, and the thought of sitting in a waiting room is not appealing to her. The WEB/RLS makes her so panicky and depressed all at once-- it's like torture. I've had RLS before, and can't imagine having it all the time.

I've been reading about RLS and undiagnosed chronic lyme's disease-- which is something her new doctor thinks she has.

I'm going to call the sleep clinic Monday and hopefully get an emergency referral to get in there ASAP.

[majoraward]

thanks everyone!

I'm really at my wit's end, here, which is why I posted today. She just took 6 mg of ativan-- in succession-- b/c each one didn't work to stop her skin from creeping and crawling. She slept for a few hours and is up again. Cross your fingers that it doesn't come back. I'm so close to taking her to the ER, but we don't know what they'd do for anyone there, and the thought of sitting in a waiting room is not appealing to her. The WEB/RLS makes her so panicky and depressed all at once-- it's like torture. I've had RLS before, and can't imagine having it all the time.

I've been reading about RLS and undiagnosed chronic lyme's disease-- which is something her new doctor thinks she has.

I'm going to call the sleep clinic Monday and hopefully get an emergency referral to get in there ASAP.

I wish you guys all the best. Be careful with that Ativan though, it is possible that it will make it worse than better if she takes too much especially more than is prescribed.

[ViewsAskew]

I second being careful with the Ativan.

If she has ever taken opioids before - codeine for a toothache or Vicodin for surgery - an opioid might help her. Of course, I'm not suggesting she do that - but many people have (and do), when they seem out of options and the opioids are around. And, if she's never taken them, don't encourage her to do it as opioid-naive people can overdose much more easily.

I also second the serum ferritin test.

And, then, do a search here for small-fiber neuropathy. We've had two or three people, in the past, who have both RLS (WED) and small-fiber neuropathy. One of them went through a heck of a hard time with it. It's really hard to diagnose the SFN with the WED at the same time and it can take a long time before the doctors figure it out.

Last idea - write to somno@verizon.net. This is Dr Buchfuhrer. He's an RLS/WED specialist and he often answers emails. He answered mine just last night! I was worried that he'd be gone for the holiday (and maybe by now he is), but he wrote to me less than 24 hours ago. He may have some more ideas.

Not sure where you are located - give us the general area (i.e. greater Minneapolis) and we can tell you if we know a doctor there. Many docs think they know about WED and really don't know as much as they should, I hate to say.

Hugs from me to you - your partner can't hug you much right now, I imagine, but I can . Thanks for helping her and being so understanding.

[geekgirl]

It's so good to find an understanding bunch of people! It sometimes seems like NO ONE else knows what this is like for her (and for me!)

Her new doctor definitely wants her OFF the ativan, as it isn't really treating the problem, just masking it (we agree). And that's great, as she's built up a tolerance to it anyways, but the thought of having *nothing* to take when the RLS gets bad is scary.

She's taken opiods (oxycodeine, fetanal patch) in the past (for joint pain and back pain), and responds well to them, but went off of them b/c the side effects were unbearable-- constipation, mostly.

I just looked at her labs, and her ferritin level was taken about 10 months ago and it was 30. So definitely, ferritin is something we want to talk to her doctor about this week.

We're in the NYC area (Northern NJ). I found a sleep clinic nearby (http://www.barnabashealth.org/hospitals ... index.html) with Dr. Nadkarni who does research on RLS. Unless her primary dr has a better suggestion, that looks like it would be a good place to go.

It's hard to convince doctors how SERIOUS this is. We've been to numerous doctors in the last state we lived in (just moved here) and just couldn't convey to them how debilitating and constant the RLS is. It's worse than the joint pain, worse than migraines. Very few people seem to get that.

Oh, Polar Bear-- the link in your signature isn't working for me?
thanks, all!

[Polar Bear]

I've just clicked the link in my signature and it worked ok....

This is the link to the page on the RLS Foundation site that lists all of their publications.
http://www.rls.org/page.aspx?pid=524
If you scroll down you will come to the RLS Medical Bulletin (for care providers) - you can print it out from there
There are also many other brochures that are full of information and are reader friendly.

I think it helps to go to doctor's appointment armed with reliable information, highlight what is relevant. However don't overburden with too much info at once or they can glaze over. First step is to get some relief.

[badnights]

geekgirl, I also wish the best for both of you. She needs real treatment, not a sleeping pill, which for some people can actually make the WED symptoms worse (the symptoms are triggered by relaxation, which is induced by the sleeping pill).

A note of caution, just because the clinic advertises the presence of an "RLS specialist" doesn't mean you'll get to see that person, and doesn't even mean that person really is a specialist. I had a bad experience in that regard. The point of the story is not to make you lose heart, it's to make sure you're prepared, with that document in PB's signature, and anything else you can get your hands on that's written about RLS by real medical professionals, because you might have to pass that information along to the supposed specialist, who will be much better able to help you if s/he has that information. This is also a great little book, well-respected by the doctors I've shown/given it to, even though it's become a little dated (eg. it only recommends 50 ng/ml for the ferritin, but more-recent papers recommend 100): Hening, Buchfuhrer and Lee, 2005. Clinical Management of Restless Legs Syndrome.

Also, if a sleep study is recommended:
- WED/RLS can't be diagnosed in a sleep study, but the doctor will probably recommend it to eliminate other things, perhaps also to observe her movements because they're a clue to an experienced doctor
- the techies don't know enough, in my opinion, and they might not "get" that she has to move, they might not understand the disease at all, so she might need to have a few stock phrases prepared that she can throw at them in the middle of an intense episode ("this is a characterisitic of my disorder, it's a movement disorder and I have to move" or some such thing).

[ViewsAskew]

Geek-girl, sometimes I'm surprised my partner still lives with me, let alone talks to me! It's really hard for both people (and any other close friends or relatives). Life changes so much when you have to go through this. You are absolutely right that most people don't have a CLUE what it's like. A study actually showed that quality of life for a chronic WED sufferer is as bad or worse than other chronic disorders, such as diabetes. Now, if we can just convince our caregivers of that.

Per the side effects on the opioids - constipation you can manage. It takes most of us awhile, but several things can make it tolerable.

1) stool softener - I buy the big pack at Costco and take the max dose a day.
2) lots more water in the diet.
3) lots more fiber in the diet - particularly lettuce, pears, apples, etc. They have pectin and it works really well.
4) fiber product - just make sure you add the extra water!
5) a decent walk every day.

When I do these, I do pretty darn well. When I stop even one of them, I notice. If I stop several, I think I want to die. The opioids also cause slower motility and when you combine hard stools with the pace of a turtle, once a week bowel movements are unbelievably painful. Doing the above I don't get to once a day, but maybe every other or every third. To me, that's miraculous compared to what it is without!

Ditto what Beth said about the doctor. He/she may be great....and may not. The most important thing is to be hopeful but not sure that it will be alright - the let down can be terrible if it doesn't work. If you are hopeful but know that it might now work, you're still sad, but not devastated.

I found a couple doctors that you might be able to get to, depending on where you live:

Mark Atkins Randolph NJ
Dr. S. Bhat. He is well versed with RLS/WED and asked all the right questions and I highly reccomend him. He is with JFK Hosp. neuroscience in Edison NJ.

Other people posted this info - I have no firsthand info about either of them.

[rthom]

Just a reminder to take a look at the things that may be agrivating the rls for your partner. There are a few things--like alcohol, some meds, cafeen, aspertaime....

About the constapation I was down to over 2 weeks between on the opiods (tore open a couple of times--very painful) and couldn't stand the softeners (probably the wrong ones) but I increased the water, added fiber rch foods and bulking foods, and most imporantly for me I started eating 2-3 yougarts a day the ones with the bacteria in them, I think it's astro I get--the separate ones not the pre-stirred.

[badnights]

I take 1/4 cup bran in the morning (to make it palatable, l I mix it with an equal amount of 1-minute oatmeal and some cinnamon and ground flax seed - wet thoroughly and nuke for 2 min), and cut-up apple, and yogurt (and raisins and walnuts, again to make it palatable). I've had people ask what it is because it looks and smells so good but I just do it as a way to get the stuff into me!

Bran, apple, yogurt are all essential to happy bowels, I think, for me at least.