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RLS and peripheral neuropathy

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Unread 04-18-2008, 02:06 PM   #1
jarrett622
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Default RLS and peripheral neuropathy

I'm finding much info that states there's often a bit of both going on for many people. Since I started taking the Mirapex I'm having less and less symptoms of a certain type. Some of the symptoms I still have may or may not be because of the PN. They could still be RLS (Restless Leg Syndrome) and I'm simply not taking enough of the Mirapex or they could be PN symptoms. Really no way to know for sure.

Something I found that has answered many questions I've been having is a site that has letters from patients and medical answers posted. It's answered some things for me that I knew to be true for me that my previous doctor stated couldn't happen. Such as Celexa and Effexor making my RLS symptoms *much* worse. When I was taking Celexa is when the RLS got *really* bad. Coming off Celexa go rid of the RLS. Effexor made it bad again but not as bad as the Celexa did. The RLS symptoms were still present after stopping Effexor but not as bad as they were while taking the Effexor.

This site also eased my fears about one of the possible sides of the Mirapex. Namely, suddenly falling asleep while being totally alert and awake just prior to the falling asleep incident. At the dose I'm on it's not going to happen. What I read stated that this happens in Parkinson patients taking *much* higher doses of Mirapex than I'm currently taking. *That* was a huge relief! There's no way you can prepare for that kind of side effect. It's not like you feel sleepy or groggy just prior to falling asleep.

Anyway, here's a link to the page I'm talking about.

http://www.rlshelp.org/rlscomp23.htm
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Unread 04-20-2008, 07:29 AM   #2
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Default I also have RLS and PN

When I was first diagnosed with PN in 2001, the doctor also put a name to my leg problems - RLS. I was put on Neurotin and Requip. While the Requip worked, I did not like the way it made me feel.

Fast forward to Spring 2006 when I went on Lyrica. At this point, I was only taking the Requip occasionally. One day I realized that I did not seem to have the symptoms of RLS anymore.

At the end of January (this year), I asked the doctor if we could replace Lyrica with something else as the Lyrica was starting to put weight on and I wanted to see if I could lose some. He put me on Elavil which seemed to work somewhat. I did find that I was taking more Tramadol than I normally was and that the one pill at night was in no way lasting 24 hours. I found I was taking my night pill earlier and earlier to get some relief.

Also, my RLS came back big time. The real test came when I went to a Motocross track with my daughter and grandchildren. My oldest granddaughter (age 10) has raced dirt bikes since she was 5. Anyway, there is a lot of walking involved and it was painful and I was just miserable. The next day I called the doctor for an appointment to see if I could go back on the Lyrica. Thankfully he agreed to it, starting out on 50mg three times a day. I got the prescription locally. He also gave me a prescription to send away for 100mg two times a day. I had been on 150mg three times a day.

I only had to take the first couple of pills and I felt better almost instantly. I had become irritable on the Elavil and did not want to do anything. I had started out on 10mg and then upped to 20mg. So, for a couple of months of experimentation, I found it best to stay with what is working.
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Unread 04-20-2008, 09:00 AM   #3
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Originally Posted by dlshaffer View Post
When I was first diagnosed with PN in 2001, the doctor also put a name to my leg problems - RLS. I was put on Neurotin and Requip. While the Requip worked, I did not like the way it made me feel.

Fast forward to Spring 2006 when I went on Lyrica. At this point, I was only taking the Requip occasionally. One day I realized that I did not seem to have the symptoms of RLS anymore.

At the end of January (this year), I asked the doctor if we could replace Lyrica with something else as the Lyrica was starting to put weight on and I wanted to see if I could lose some. He put me on Elavil which seemed to work somewhat. I did find that I was taking more Tramadol than I normally was and that the one pill at night was in no way lasting 24 hours. I found I was taking my night pill earlier and earlier to get some relief.

Also, my RLS came back big time. The real test came when I went to a Motocross track with my daughter and grandchildren. My oldest granddaughter (age 10) has raced dirt bikes since she was 5. Anyway, there is a lot of walking involved and it was painful and I was just miserable. The next day I called the doctor for an appointment to see if I could go back on the Lyrica. Thankfully he agreed to it, starting out on 50mg three times a day. I got the prescription locally. He also gave me a prescription to send away for 100mg two times a day. I had been on 150mg three times a day.

I only had to take the first couple of pills and I felt better almost instantly. I had become irritable on the Elavil and did not want to do anything. I had started out on 10mg and then upped to 20mg. So, for a couple of months of experimentation, I found it best to stay with what is working.

Certain AD's make RLS worse. SSRI's are a big culprit (which I experienced first hand). From that site I was talking about in my first post:

Amitripylline (Elavil) tends to worsen RLS so I would not recommend that drug. You should see a doctor who can treat your RLS more effectively.

That doctor's specialty, at that site, is RLS. He recommends Tramadol and opiates to treat severe RLS. Even with Requip, Mirapex, or Lyrica. From what I've been reading the Requip doesn't help as many as the Mirapex does. And there's more augmentation related to Requip.

Lyrica is closely related to Neurontin. Which might explain the success you had with it and also the weight gain issue. The Requip seems to not work well for many people, sides - like you stated - and of course the augmentation.

Yes! I'm beginning to find a balance for what works and what doesn't. And it's different for each person. I'm beginning to be able to differentiate between what's RLS symptoms and what's PN. The Mirapex seems to be doing the job wonderfully for the RLS symptoms and the Tramadol bails me out from the PN pain when I need it.

On that site he constantly stresses the need to take a holiday from the Tramadol and the opiates. He states 2 days every 2 weeks. With some opiates it's a different time frame and for a longer period. This prevents addiction and tolerance. Most of the time the doses people are on are small enough not to cause problems with proper precautions. The problem I have is I don't have 2 days every 2 weeks with no pain. So what do you do....just bear the pain and pray for the 2 days to go by quickly? I'll have to ask my doctor about that...

I'm so glad you were able to find relief, something that works well for you. I can't take Lyrica because Gabapentin (generic Neurontin) made me suicidal.
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Unread 04-20-2008, 03:01 PM   #4
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Hi. When I was at Cleveland clinic they talked about how the opiates make your body precieve more pain. Now this could be off a little cause I was in a fog of pain while I was there. So I would assume too that if you are using them every day you are going to experience those days off at the start more painful. Maybe there is something to help you that is not narcotic/opiates. I know many at CC were going through withdrawl and were trying different things but also had to experience more pain. Of course check with your doc. Feel better
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Unread 04-20-2008, 04:21 PM   #5
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Quote:
Originally Posted by daniella View Post
Hi. When I was at Cleveland clinic they talked about how the opiates make your body precieve more pain. Now this could be off a little cause I was in a fog of pain while I was there. So I would assume too that if you are using them every day you are going to experience those days off at the start more painful. Maybe there is something to help you that is not narcotic/opiates. I know many at CC were going through withdrawl and were trying different things but also had to experience more pain. Of course check with your doc. Feel better
From what I'm reading using low dose opiates for RLS is a bit different than treating most other kinds of pain. For some people with RLS the opiates don't work at all...I seem to be one of them. Tramadol, though it acts like an opiate, isn't one in the strictest sense of the word. This doctor from that site uses methadone quite a bit for the most intractable cases of RLS pain with good results.

Treatments for RLS in general seem to be limited to Parkinson type drugs. Neurontin works for some, and now there's Lyrica, which is related to Neurontin. Requip and Mirapex or Lyrica with the addition of Tramadol or opiates seems to be the best and most consistent treatment for severe RLS. However, most GP's are hinky about giving opiates. So most severe RLS sufferers are not treated adequately. And a lot of it is that most doctors are not familiar enough with RLS treatments to do what's necessary for their RLS patients. Kinda sounds like PN, eh? LOL!
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Unread 04-21-2008, 05:13 PM   #6
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I have used Mirapex for RLS for almost 10 years. I have the irresitable urge to move a limb....it can be legs and arms at times...classic RLS.

I have had RLS since childhood...it just got worse and worse as I aged.


Any cold medication, antihistamines, benadryl etc makes it worse, all these things that are anticholinergic,
also amitriptyline, nortriplyline etc..(tricyclics)
Anything that contains SSRI makes it worse.
Any antidopaminergic makes it worse. (Reglan, risperdal etc)

If you take opiates, as they wear off, RLS will kick up for a few days, if you do not take Mirapex.

Things that have helped:
Mirapex
Opiates
Beta blockers
Lyrica

I can not take tramadol due to severe autonomic reactions which required hospitalization...it has SSRI.

I also have paradoxical excitation with opiates, benadryl, chloral hydrate etc. I take an opiate for pain but, as a result don't sleep well. (I have other issues besides PN.)

Have your ferritin checked. I was never able to get my ferritin high enough until lately to stop RLS.

You can be genotyped to see if your 2D6 enzyme makes you a rapid metabolizer or non-metabolizer of many of the drugs I mentioned. Many psychiatrists now are doing it to avoid adverse reactions as so many meds are in the 2D6 family...Mirapex is metabolized by the kidneys not liver.

wemove.org and rls.org have a lot of info. There is also a site out of southern california...can't think of the name...it has a lot of info too.
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Unread 04-21-2008, 05:45 PM   #7
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Quote:
Originally Posted by cyclelops View Post
I have used Mirapex for RLS for almost 10 years. I have the irresitable urge to move a limb....it can be legs and arms at times...classic RLS.

I have had RLS since childhood...it just got worse and worse as I aged.


Any cold medication, antihistamines, benadryl etc makes it worse, all these things that are anticholinergic,
also amitriptyline, nortriplyline etc..(tricyclics)
Anything that contains SSRI makes it worse.
Any antidopaminergic makes it worse. (Reglan, risperdal etc)

If you take opiates, as they wear off, RLS will kick up for a few days, if you do not take Mirapex.

Things that have helped:
Mirapex
Opiates
Beta blockers
Lyrica

I can not take tramadol due to severe autonomic reactions which required hospitalization...it has SSRI.

I also have paradoxical excitation with opiates, benadryl, chloral hydrate etc. I take an opiate for pain but, as a result don't sleep well. (I have other issues besides PN.)

Have your ferritin checked. I was never able to get my ferritin high enough until lately to stop RLS.

You can be genotyped to see if your 2D6 enzyme makes you a rapid metabolizer or non-metabolizer of many of the drugs I mentioned. Many psychiatrists now are doing it to avoid adverse reactions as so many meds are in the 2D6 family...Mirapex is metabolized by the kidneys not liver.

wemove.org and rls.org have a lot of info. There is also a site out of southern california...can't think of the name...it has a lot of info too.
Thanks so much for this. The sites you mention, two of them I believe, are the same site and is the one I'm currently exploring that has been *so* very helpful. rlshelp.org

I'm currently taking Mirapex which seems to be helping much. No Tramadol needed for the first time in months, last night. Will go without tonight as well for a drug holiday as the Doctor at the rlshelp.org site suggested. Pray I make it through the night. I was fine all day yesterday and through last night. However, today I'm having symptoms of the burning raising it's ugly head once again.

I think I've been to wemove.org but will visit just to see.

I can't take Lyrica. Related to Neurontin and that made me suicidal.

The Tramadol was a miracle for me. The opiates don't seem to help me much. Tramadol acts like an SSRI but is different and for most people doesn't cause a worsening of RLS symptoms. SSRI's did a big number on me. Tramadol has not caused that.

All my life my iron has been closer to high rather than depleted. I came close with my third pregnancy though. That having been said I do plan on asking my
NP to check my ferritin levels rather than iron levels. There is a difference.
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Unread 04-21-2008, 06:44 PM   #8
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Lightbulb just a short comment...

I think RLS is a boatload of many different metabolic problems.

That site was interesting. I did research that doctor and he is a pulmonologist, and has a professional connection to a drug trial company.
That company makes money testing drugs.

His pervasive recommendation for Mirapex IMO may be linked to his
income.

Sorry...but I will not put up the links. But anyone can find them on Google.

RLS is a movement disorder and as such, when I see almost every drug known to man
listed on his site as helpful...I have to wonder what the real cause(s) is/are.
(most of the drugs he lists as helpful are NOT related to each other)

ReRead the Magnesium info... his recommendation for mag oxide is OLD OLD
and ill advised. But the bottom line? He says try it. Just don't use the old
cookbook medical recommendation, and use the newer agents...the chelates.

So RLS may be a circulatory disorder.
It may be due to low Iron.
It may be due to LOW DOPAMINE? But he really trashes Sinemet, which has
been used for ages for this.
It may be due to SSRI overload...which over 6mos of time depletes dopamine.
It may be due to low blood sugar.
It may be due to hypertension.
on and on and on.

I am just saying...be open minded and careful.
Drugs that affect neurotransmitters are not innocuous. They may do far more
than help.
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Unread 08-24-2008, 07:56 PM   #9
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Quote:
Originally Posted by jarrett622 View Post
Thanks so much for this. The sites you mention, two of them I believe, are the same site and is the one I'm currently exploring that has been *so* very helpful. rlshelp.org

I'm currently taking Mirapex which seems to be helping much. No Tramadol needed for the first time in months, last night. Will go without tonight as well for a drug holiday as the Doctor at the rlshelp.org site suggested. Pray I make it through the night. I was fine all day yesterday and through last night. However, today I'm having symptoms of the burning raising it's ugly head once again.

I think I've been to wemove.org but will visit just to see.

I can't take Lyrica. Related to Neurontin and that made me suicidal.

The Tramadol was a miracle for me. The opiates don't seem to help me much. Tramadol acts like an SSRI but is different and for most people doesn't cause a worsening of RLS symptoms. SSRI's did a big number on me. Tramadol has not caused that.

All my life my iron has been closer to high rather than depleted. I came close with my third pregnancy though. That having been said I do plan on asking my
NP to check my ferritin levels rather than iron levels. There is a difference.
Hey gang -

I have been reading through some of the back threads and have a question about RLS and PN? Can RLS sometimes be a cause/contributor of PN? If so, does it need to be a severe case? I had a sleep study many years back (about 14) and was diagnosed with sleep apnea and RLS. I do agree that I have sleep apnea but if I have RLS it is a very minor case. I do not have the symptoms that you all are citing. Once in the past, while laying in bed with hubby watching, TV my leg did involuntarily react and hit his leg. That is the one and only indicator we have ever had of RLS.

However, since the PN started I am twitching like a son of a gun. My 3 yr old grandaughter thinks the twitching is wonderful. She thinks I do it on purpose and has the most wonderful laugh when it happens...

Just wondering..
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Unread 08-24-2008, 11:12 PM   #10
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Leslie my legs did a lot of twitching way back when. It happened so often and it reminded me of the same feeling I would get when my cat walked gently up the covers the same way the cover would feel.

It went away as it moved up my legs .

Or so I thought it would be the best, only it wasn't as it kept going up my legs. The higher it went towards my knees, the less difference I felt. .

But I still walk great. It is amazing to my really how well I do walk with dead feet and it all the way up almost.

I'm just worried about when it goes over the knee now and would like to hear in another thread if needed, how they manage if it is over their knees.

It is in hands bad now but I know it will get orse from how my feet did.

It is still managable but I have to keep myself thinking of the better things in my life now. I sure can't lose focus on the good things.

I have been under a lot of stress lately and denying that I am worried and my whole body, especially arms, is doing that bit that feels like my nerves or muscles are switching back and forth, really fast. I don't like it as I've started wondering how Parkinson disease does a body.


After injury, fibromyalgia. More life denenerative disc and then idiopathic peripheral neuropathy. I hope it ends there.
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