RLS following Narcotic withdrawals

[Shelley39]

Hello everyone,

I am a newbie to this board and found it through an RLS site. I've been reading numerous posts on here regarding suggestions, what works and what doesn't work, but haven't come across my problem.

I am a sufferer of Fibro & have been on Narcotic meds for a long time, such as the Oxycodone, Hydrocodone, etc., but more than ever this last year. When my Dr. was out of the office, I could not get them refilled and she never bothered to tell me she would be out of the office when my refill came due. Grrrr. None of the other Drs. in the office would refill either. So, there I was! But, it was a blessing in disguise, as it showed me just how addicted I had gotten to narcotics, taking numerous pills a day, etc. I also didn't know at the time what I was taking for pain relief was actually making my pain SO much worse from Rebound, etc. I am feeling wonderful & I thank God for no one refilling them!

It has been a week and a day since going off the Oxycodone and tapering the addiction with Hydrocodone, however, I've noticed that since last Saturday, I've been plagued with RLS, something I rarely have experienced in my life. I know that RLS is a withdrawal symptom from the Narcotics & not "true" RLS.

I am wondering if anyone has gone through this same thing and if there was something NON-Rx they did to help. I know this isn't a board for Addictions, etc., however, I still wish to come to you folks for some help. The only thing I have not tried is the Doans/Advil combo, which I will be doing today. But everything else under the sun I've tried, done, blah blah blah. When I take 3 Lortabs 7.5/500, it fixes the problem right away, but that is what I'm trying to avoid. If it weren't for the RLS, I'd be off the Narcotics totally. The pain of Fibro can be treated many ways (which I NOW know) without narcotics, so I'm not worried about pain. I just want off these stupid Opioids SO bad and to get some kind of OTC or natural relief for the RLS, it's unbearable and I get it about an hour after getting up and always later at night. Any and all suggestions would be much appreciated. Thank you all!

Sincerely,
Shelley39

[Penguinrocks]

Hi Shelley

I have fibro as well as RLS/PLMD...My neuro has been "experimenting" with me with different combos of meds...Requip, Neorontin, (both stopped working). Then some opiod i can't remember the name of .... didn't work.

Anyway, nothing that I have been given by a Doc has worked for the RLS or the Fibro....

Pain? heck ya! I've got it.

What can I do? not much, but my neuro did suggest Aquatherapy. The rhuemy (who i've stopped seeing) suggested Physical Therapy...but I guess he doesn't understand that it hurts to be touched.

I've not yet tried the aquatherapy as I need to find out if my insurance will pay for it...if it doesn't, then I won't be trying it...

I don't know if I helped at all but, just wanted you to know you're not alone.

Penguin

[Shelley39]

Hello Penguin,

Thank you for posting and commenting, for which I do appreciate.

That is one thing I don't have the luxary of, is medical insurance. Ugh. Everything is out of pocket and I'm limited to what I can and can't do.

I think the best thing I can do is (I have to find a new Dr.) is see a detox Dr. who will give me the Oxycodone in "cut down" stages to just get off it the right way. If I can wean myself and not do the "rush" cut back with Lortabs (I had some left) I'll be ok.

The pain of Fibro can be unbearable, however, my pain has diminished now that I'm taking much less pain medication & I'm passed the rebound stage. I will just have to leave it in God's hands and work a little harder on this. Last night I started back on my Trazodone and had a great nights sleep and no RLS. Never made it to the store for Doans, yesterday was a BAD day. The withdrawal effects were the worst yet.

Thank you again SO much for your post and suggestions. I wish I could afford the aquatherapy or by one of those units, but until the ole Lotto #'s come up, that isn't going to happen, hee hee

Have a blessed day!
Sincerely,
S39

[mich711]

shelly.......I am sure that so-called rls is really nerve damage for many. It has resulted is chronic and extreme insomnia for me. I feel sensations in my legs throughout the night and get without meds between 20 minutes to 2 hours( of completely broken sleep. HEre is my deal below....

I hope others can somehow benefit from the realization that their rls mayb very well, is caused, by nerve damage. I have some to that conclusion regarding my rls and chronic and severe insomnia, the latter which I have had for over 5 years now. I am 34 years old, and never had rls until several years ago. My first sensations occured while I was on a benzo (benzodiazepine) -Ativan. Although it initially helped my sleep, it eventually pulled me out of sleep as its effects wore off (I build up a tolerance -which is normal on benzos). My sleep deprivation amounted to insane levels (down to 20 minutes a night)....needless to say, I went out of my mind. After eventually going on different meds and ending up in the ER, and after being placed on several other meds, I finally ending up realizing that the only med that worked was a benzo (eventually got on Klonopin). I have since tried to get off this last med, but after 10 days of excruiating withdrawal, the worst being almost complete absence of sleep or severe leg pain (I rarely had leg pain), I realized I had to go back on Klonopin. Some sleep was much better than no sleep at all. Now after several days of being back on this med, I have difference sensations in my leg (like a snake crawling up my outside left knee, and tingling in my toes and feet and lower legs (which I have had since the first time on a benzo). Originally my sleep disruption started with attending to my newborn baby, and then stress, but then after turning originally to over-the-counter sleep meds, then to Ambien, then to other meds, and then (overlapping) with a benzo, and now just on a benzo, I realize this is caused permanent damage to my nerves. After all, benzo (And other sleep meds) difrectly affect your nervous system. For many, they will be fine after finally getting off (good luck in getting off...benzos are one of the most addictive substance known to man), but for others like myself, there is permanent nerve damage. The shaking and nerve sensations will never stop. I am damaged for life. Hope others can benefit somehow from my story. Sorry if this is confusing....hard to some up 5 years of hell into a paragraph.

p.s. unisom, and mirapex made my condition worse ( mirapex causing extreme insomnia and when stopped made my "rls" far, far worse, and unisom made rls worse and exacerbated my insomnia too). For some help with sleep, a temporary aid is Valerian root (herbal remedy, foun donline or in health food stores, and widely used in Europe and for centuries). But, does seem to lose its effectiveness after a while...like EVERYTHING!

[Jitteryleg]

I have been on antidepressants(paroxetine hydrochloride) for 12 years and have been weaning myself off them. Now I am suddenly experiencing RLS, which I REALLY hope will eventually go once the withdrawal process works itself out.

[IrishVamp]

They had me on requip and I think it was working ok, but I was being stupid and took painkillers for a short time just for fun, then realized that that completely stoped my RLS and I slept better, but without it, it was like hell. I was afraid I had really messed something up and made things worse. I just went to a neurologist today and again all they did was increase my medicine which is doing anything anything, and I was completely honest with him, told him about the painkillers and he said he that it should not have caused adverse effects with my legs, but from the sounds of you guys, that seems to be the cause.

And to the person that made the comment about the benzo's, I would get so desperate and pump tons of em down just to try and sleep, but they never helped. And they had me on Mirapex too which I had the same reaction, insomnia, and worse RLS. I've seen so many Dr. and they just keep giving me a run around and except me to wait weeks and months with no sleep and terrible pain. I feel like I'm gonna go insane. Oh and oh coarse no one else understands how terrible it is.

[becat]

First of all Gotta love the name.
Welcome to the board Irishvamp,
I'm glad you've found us.
Couple of things about your post.
1. Painkillers work well for many and might be needed if you have painful RLS, I do. Thankfully I have a doc that will trust me with the medication.
2. You might not see a great deal of help from the Upped dose of ReQuip if your having augmentation from them anyway. Augmentation is worsing of RLS and symtpoms earlier in the day.
3. Mirapex can cause insomnia, kills me, I can't sleep and the meds make it worse. Go Figure?
4. I'd ask the docs to address the sleep and the pain. If they don't think the pain is RLS (likely could be, as long as it doesn't travel to different areas and is consitent (sp?) in the areas it shows up ans timing of the day).
If they are not willing to help you with medication, ask to further decide with ttesting what the problem might be. This puts them in a place to find out why you have pain and then treat it.
And IVamp, we understand what RLS does to your life, your welcome here anything and in any conversation going on this board.
Lynne

[Susan Pollan]

Hello Everyone, I have been reading many posts and see there are as many possible cures as there are problems with the RLS.

I have been suffering with RLS since 2001, following gall bladder surgery. Most doctors don't agree that was the cause, but I know my body and I know I didn't have RLS before that time.

I have tried every drug mentioned through your postings. All of them present their own set of problems. The most current with Mirapex.

I have read about drinking hot milk at night. Does anyone know of any other changes in diet that have helped?

I am growing weary of these heavy duty drugs I have subjected my body to and would love something less harmful to it.

Many thanks,

Susan Pollan

[IrishVamp]

Reply to mostly BeCat:

Thanks for your response, since stopping the painkillers, I've gotten a lot better. I don't understand why the Dr, wouldn't see that... but anyway, even though the RLS seems better, things are still really hard. I don't know if it's still RLS, but I don't really feel the need to move and kick etc now but my legs and arms now feel like real heavy and weird (it's really hard to pin-point the feeling) still a little tingly. I don't know if this means there's something else wrong or if it's a result of the painkiller use or what. Also no matter how hard I try I can't fall a sleep till at earliest 6am, even if I stay up the entire night and day. My insomnia's never been this bad. I'm getting so desperate that I'm starting to want to find a Dr that will put me on painkillers, it's the only thing that gives me any peace, but they are don't want to trust me at all, and I'm also not on insurance and $200 to see the neurologist that doesn't listen to me or even has enough common sense to know that painkillers can cause nerve damage or problems just doesn't seem worth it. My b/f gave me an Ativan last night because all this stress was given me an anxiety attack and I pretty much feel right to sleep. hmm...