pain, getting worse, rls or something else?

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vickyb
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pain, getting worse, rls or something else?

Postby vickyb » Tue Nov 29, 2011 3:28 am

Greetings everyone! I'm running into a new problem and not sure what steps to take next. I just joined the sight and was recently rediagnoised with rls (more details here: http://bb.rls.org/viewtopic.php?t=7685).

The thing that is concerning me is the ache pain that my sleep doc said was from RLS. It seems to be getting worse. More frequent, for sure, and some days more painful. Its a deep "bone" ache, feeling more like its in my bones rather than my muscles, though I know that can't be the case because now I'm starting to experience it in my lower back where there are no bones.

I'm on gabapentin, currently up to 500mg taken 1/daily at night (still increasing dosage, up to 600mg per doctor). It does seem to have some positive effect on the pain but only at night after I've taken it. I don't think the increase of pain has anything to do with the medication because it started before the medication.

The short history is that I started noticing some pain within the past year/year and a half in my legs when I was really tired but especially after being tired and a small amount of physical activity. But it was rather infrequent, happening maybe once every month or two months. I'd like to say I've actually had it longer than than but less frequent. Early summer, it started happening more often, and affecting more than my legs. My whole body would just ache, but sleep seemed restorative. And it kept at that rate until maybe 6 weeks ago, when it started happening a few times a week, leading up to my appointment with my sleep doctor. His presumption was that it was due to rls, and they did the sleep study shortly after. Now a couple weeks later its every day, starting earlier and earlier (used to be evening, early night, now its sometimes as early as 3pm.) Sometimes the aching is really bad, it was Saturday night. On its own it would be bearable, but its happening so often that its starting to get very worrying. I also seem to get shadow aches before the pain actually starts where I kind of know its coming. Maybe its a low level of pain i can't quite identify as pain.

On top of that, I asked the sleep study to forward me a copy of their results from the sleep study to me, and one thing jumped out at me not mentioned by my doctor but in his notes that might be related to this: "There were alpha intrusions, etiology die to chronic aches and pains from degenerative joint disease." Well that's quite interesting, I didn't know I had joint disease and the pain isn't in my joints, it feels like its in the long bones of my legs, and arms. And he made no mention of that to me specifically post study appointment.

I'm not sure what to do next. Call my sleep doctor? Wait until the gabapentin is at 600mg? Call my primary doctor who's been with me through this whole thing?

I'd also love to hear if anyone else is experiencing pain like this and how it relates to RLS or not.

ViewsAskew
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Postby ViewsAskew » Tue Nov 29, 2011 4:07 am

Doctors don't always share everything....though I can't figure out why!

Do you trust your primary care doctor? If it was me, I'd go to the one doctor I thought would be straight with me, tell me everything, and help me figure it out. If I didn't have someone I felt that way about, I'd look to find one.

Having that one doctor has always been make or break for me. When I don't have that, it's very difficult.

I had deep bone pain last winter - it was vitamin D deficiency. But you mentioned that you had been low and it's now over 30. I am taking 10,000 IUs a day to keep the pain away. I haven't been retested, but was at 8, IIRC.

I think you mentioned that the bone pain doesn't go away with movement, so it's most likely not RLS/WED. It might be helpful to call the sleep doc and clarify that for him so he understands something else appears to be going on, too.
Ann - Take what you need, leave the rest

Managing Your RLS

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vickyb
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Postby vickyb » Tue Nov 29, 2011 4:32 am

Thanks Ann. Yes, that's what I've been thinking too, that the pain isn't due to RLS even thought my sleep doc seems to think it is. Although sometimes I swear it morphs into it (probably though they just exist at the same time).

As for which doctor I trust, I can't say I trust either. :) Probably not a good place to be. I used to love my primary care physician, but as of late I feel a bit like she's "oh geez, more symptoms" as I've been dealing with exhaustion, sleepiness and fatigue. And the sleep doctor, I don't know, I feel more like he's more interested in sleep apnea, and the fact that he didn't differentiate RLS and PLMD makes me concerned. Also his lassiez fair "take these pills and we'll see you in 6 weeks!" even though I'm struggling so desperately the last few months.

vitamin d was over 30 last time it was tested, and that was half way through the megadose treatment. But now I'm just taking 2000 ui daily, so maybe another test is in order...

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Neco
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Postby Neco » Tue Nov 29, 2011 4:28 pm

Have you been tested for anemia? And have you been given any diagnostic testing for Fibromyalgia ?

What you are describing with the pain and fatigue sounds a lot like it could be one or both of those..

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Postby Polar Bear » Tue Nov 29, 2011 6:22 pm

vickyb: your description of deep bone ache and fatigue pretty much is an echo of my own aches and pains which I did not consider to be part of my long term RLS/WED. Although at times it did cross my mind that it might be.

However a few months ago I was diagnosed with fibromyalgia which explained most of my non RLS/WED symptoms.
Last edited by Polar Bear on Thu Dec 01, 2011 9:32 am, edited 1 time in total.
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

vickyb
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Joined: Wed Nov 23, 2011 2:27 pm

Postby vickyb » Wed Nov 30, 2011 11:28 pm

Yes, I have been tested for anemia and am good there, no, no diagnostic testing for fibromyalgia. I'm kind of dreading the big F word because I've seen stories of so many lives wrecked or at least turned upside down because of it. I also did some research on alpha intrusions that said it was a strong indicator of fibromyalgia but as many that said it wasn't . . .. I haven't called either doc, yesterday was mostly pain free as today is turning out to be. Go figure?

sleepdancer
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Pain

Postby sleepdancer » Thu Dec 01, 2011 6:56 am

When my pain kept worsening it turned out to be my PLMD. My muscles and joints never had a chance to really rest and be restored. As the movements increased, I developed chronic low back pain. The better my movements have been controlled, the better my joints, muscles & back feel. What did your studies say about limb movements?

vickyb
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Postby vickyb » Thu Dec 01, 2011 5:09 pm

Yes, I have plmd. The doctor said it was pretty bad, about once every 45 seconds. That's what he's hoping to control with the gabapentin. I'm up to the doctors recommended 600mg, slept 8 hours last night, and woke up feeling like I hadn't slept a wink.

One thing I'm struggling with is that I have no idea what I'm doing and when. I'm thinking of asking my doctor if they have an actigraph I can borrow on loan because I don't like not being able to quantify the issue. Waking up and "feeling better" isn't really solid enough data for my liking.

ViewsAskew
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Postby ViewsAskew » Thu Dec 01, 2011 6:10 pm

Vicky, the actigraph is a GREAT idea.

Dr Rye, one of the stalwarts of RLS research, always sends his patients home with one - for a week. He suggests that one night doesn't tell us anything valuable - it's only one night.

From what I've read, but this is going back a few years, the only drugs for PLMs are the dopamine agonists. I'd also ask your doctor why gabapentin and what research supports its use compared to the dopamine agonists.

If your ferritin is over 50 (I know you increased it, but can't remember what it is now), they should be safe to use. I also seem to recall you tried Mirapex, but for a short period. You may have needed a larger dose. The average dose is .75 mg. Most people start out at .125 or .25 mg.

But, the same issue applies no matter what drug you take - how do you really know if the leg movements are decreased unless you have an actigraph?

Oh - if you have money, you can buy your own actigraph. They sell used ones. Or, you could try the Zeo. Several people here have one.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

vickyb
Posts: 11
Joined: Wed Nov 23, 2011 2:27 pm

Postby vickyb » Sat Dec 03, 2011 8:09 am

I called my sleep doc today, but it was at the end of the day, so a nurse called back to clarify some info and said he'd call back Monday. I forgot to ask about the actigraph though, but I was thinking if picking up a fitbit and attempting to us it as my own actigraph by strapping it to my leg.

I've found some people have been using the fitbit for just that, but of course it can't differentiate really being awake and just movements. However interestingly enough, it has a regular and sensitive setting, so I'm curious how it will work.

I tried the zeo when it first came out and I couldn't get used to the headband so I took advantage of their 30 day trial and returned it. Which is a shame, it seems like such a great home monitoring tool.

My serrum ferritin is 69 as of september, so I think I'm good there.

I plan on asking about the gabapentin, but I did a google scholar search and there were a bunch of papers that discussed its use and success in PLMD. RLS/WED seems to be more studied, but there were a few papers that showed its efficacy in PLMD especially when RLS accompanies PLMD. I do wonder if the dose is just too low though. I seem to be finding much higher doses recommended that the 600 mg that the doctor said I was safe going up to. I guess I'll see what he says on monday.

Also following up about the pain increase, but the nurse seemed concerned because it is starting so early in the day for me, sometimes as early as 3pm, and today it just seemed to be there when I woke up, where normally I'm clear in the morning and the pain comes on anywhere from early afternoon to late evening. I don't know what to think, its getting progressively more frequent quickly. And just when I think it must have nothing to do with RLS, I start feeling like I need to "shake" it out, so I'm again at a loss.

Thanks everyone for your thoughts, and just listening. I'm just frustrated that I have dealt with being sleep deprived so long and now it feels like its getting worse, not better, even though the cause is supposed to be found.

cornelia

Postby cornelia » Sat Dec 03, 2011 2:22 pm

Having to want to shake it out sounds to me as PLMD!

Corrie

ViewsAskew
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Postby ViewsAskew » Sat Dec 03, 2011 8:22 pm

Thanks for the update that they are studying gabapentin in PLMD and that it has been shown to be effective.

What dose were they using in the studies? You said it was higher; knowing that might help when you talk to him.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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