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. :rolleyes: 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

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.

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.

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!

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.

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.

RLS and PN
 

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..

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.

There are two distinct disorders: RLS and PLMD (Periodic Limb Movement Disorder). They can be confused and while they use some of the same treatments for both they are still very distinct and different disorders...or so they say. To me they seem like the same thing. You may have PLMD rather than RLS.

ETA: Since I had a duh moment and didn't really answer your main question; According to the doctor, the expert on RLS and such, no, PN doesn't cause RLS. They don't know what causes it but they have ID'd some triggers. There doesn't seem to be a connection between RLS and PN. There are shared symptoms in all of these above mentioned disorders. It requires testing and a good doc to differentiate between what's what.

Now that you mention it...Periodic Limb Movement does sound familiar. I'll have to got back through the cobwebs of my mind, but maybe that was my diagnosis instead of the RLS. It seems to me that there was a discussion between the doc and the technician at the time of the sleep study about RLS vs. PLM....

Exactly! A sleep study is the only way these things can really be diagnosed. Some of the treatments may be the same. For me, Tramadol treats both the PN and the RLS symptoms as well. Mirapex worked wonders as well. However, Tramadol is much cheaper for me. And I have this odd little thing...why take two pills when one will do? :D I'm trying to remember what exactly works for PLM... I know the info is at the link I gave above. Yep, just checked... http://www.rlshelp.org/ Look in the left hand menu for RLS and PLMD treatments. The letters he gets and publishes from patients proved invaluable to me as well. I wrote to him and he's quick to respond.

Proven correlation between RLS and peripheral neuropathy?
 

I developed a large number of plantars warts (10) on my left foot two years ago and had them treated for the 2nd time yesterday. Within 1.5 hours of having the liquid nitrogen applied, not only was my foot swollen from the applications but my legs were so restless that I could only gain relief by walking, which of course hurt like crazy. To relieve my restless legs (some 7 hours later), I applied some fibromyalgia serum + ice gel and took to Advil pain tablets and was finally able to go to sleep. What this extreme onset of my RLS during the day (which is uncommon for me) made me think of was peripheral nerve damage as a result of the liquid nitrogen applications; seeing your not regarding peripheral neuropathy makes me wonder about any ongoing research that may be underway correlating 'pn' and 'rls'; does anyone know of any?

Normally I find that I only get restless legs (left leg only for me) during the night after having been asleep for about 1 hour and having had sweets (especially chocolate) after 6:00 p.m. that same evening --- I am a firm believer that sugar and RLS don't mix and I know, for me, if I indulge in sweets in the evening I have to be prepared to fight with a restless leg until about 6:30 a.m. the following morning.

RLS is very related to PN, if not a symptom of PN. Given you can tell it flares up with sugar consumption, I would say it is time to be worked up for metabolic issues related to glucose metabolism....diabetes or reactive hypoglycemia.

As to the flare up of RLS, I notice when I stress my legs, or even get emotional stress, I can count on my RLS flaring. I went for a short bike ride the other day, and for 3 days, my RLS increased.

RLS is the pits. :(

from feet to legs to groin
 

Hi Zayne,

I have not had RLS but I seem to have severe neuropathy though I only got a symptomatic diagnosis from the ER. I don't have health insurance so I have not had any tests run yet. I do have an appointment with a volunteer clinic in 2 weeks and I'm hoping they can get me in to see a neurologist quickly. It all started 3 years ago with tingling and occasinal numbness in my left foot after I smashed my little toe on a table leg. Now, in the last 4 months after a fall walking into a store with wet floors, I have intense burning or cold numbness in both feet, horrific pain, as if there are little hard shelled creatures rolling around in both legs and excruciating vise like pain in my genitals. I'm only assuming that all of this is related to the toe smash and the fall but I really don't know anything for sure. I have been on 900 mgs. of Neurontin for 3 weeks but it doesn't seem to be helping and is making me very irritable. I don't know whether to cut it out or double the dose as I read that other people are taking much higher doses, some with success. Does that mean I'll be twice as irritable? The overall pain is worse on my left side and I walk awkwardly with a definate limp. I have found that icy or hot circulating foot baths, depending on how my feet feel, with epsom salts, provides relief for a decent amount of time and sometimes light massage if I can stand it improves circulation. I take an extended relief opiate called Opama 2 or 3 times a day and I find it helps better than other pain meds I've tried and it doesn't interfere with sleep. I also take flexeril, a muscle relaxer, at bedtime to help with sleep, which is hard to come by these days. I find some relief but I do feel 'hungover' most of the time, but it seems a small price to pay compared to the relentlous pain. I have to wear something loose and comfortable on my feet at all times, either lined slippers or plastic clogs with socks, regardless of whether my feet are burning or freezing. I don't want to be bound to all theses medications for the rest of my life, but right now it's the best I can do. I am reading lots about vitamin B12 and other supplements that can be helpful. I'll be getting tested for deficiencies at the clinic.
I know I'm sort of rambling here but the severity of my condition has come on pretty quickly and I'm just relaying my experience in the hopes that it will be helpful to others and trying to learn as much as I can by hearing other peoples experiences. I hope some of this has been helpful to you. John

Oy! My RLS symptoms went completely away when I stopped taking Zyrtec, per the doctor's suggestion from the website I referenced further up. Now I'm on Xyzal (the "clean" version of Zyrtec) and it's much better. However, I have noticed that lately when I stress my legs in any way I will have an episode. The other day I was on my feet a good bit and sitting in a car and a wheel chair. I had a blood clot about 6 weeks ago so activity has been restricted until they tell me the clot is fully dissolved. Sitting in some chairs makes the issues worse it seems. I had a doctors appt for blood work that day and was in a wheel chair at two stores afterwards. It wore me out a bit. I piled up on the couch when I got home to put the bad leg up and the RLS was pretty bad. Worst it's been in a long time. Some other drugs, such as the main cough suppressant in most cough syrups gives me severe RLS symptoms.

Relationship of RLS as a sympton of PH
 

I am new to the group. I am a 65 year old Vietnam Veteran, who was exposed to Agent Orange. I have suffered with RLS for about 10 years, and first was on requip, and now on mirapex, which helps. I have to wear support hose to drive any distance or fly. I have been treated by a private doc for this, but have also begun treatment with the VA. I have been trying to find information on the relationship of RLS to PH, as PH is considered a presumptive disease by the VA-if you have PH and served in Vietnam you are presumed to have it caused by Agent Orange. It is a condition for which disability is paid. I plan to file for this and am interested if anyone else has experienced the same issues, or has seen any documentation that establishes the relationship.

hi
i have had Willis-Ekbom disease ( aka RLS ) since i was little and have been on requip sine it was approved for RLS treatment and has worked well most of the time. Like many others there are certain things that trigger it into high gear.
i recently started taking b12 and had to stop it got so bad nothing helped and i walked the floor for 2 days.I am now getting better and have stopped the b12.I was recently dx with small fiber neuropathy ( confirmed by skin biopsy). One of the first thing my neuro asked was did i have Willis-Ekbom disease. She then told me there has been some speculation of patients with sfn also having Willis-Ekbom disease. She said there was research going on in that area, so there may be a connection. I do know they have found a gene mutation for Willis-Ekbom disease and they are sure it can be passed in families (such is my case ) I don't know if this helps or not but there is a RLS org with much more info.

Restless leg syndrome--
 

--can be considered a sub-type of motor neuropathy, in a sense, though most motor neuropathies show definite damage to the nerves themselves, and that has yet to be found in RLS (or the new designation, Willis-Ekbom).

It seems to be more a condition of improper neurotransmitter balance than of nerve damage per se. (There are a lot of neurotransmitter or neuromuscular junction conditions out there that do not involve damage to the actual nerve CELLS or tracts.) The fact that iron imbalance may play a role might support considering it a neuropathy, though.

Mike
 

I was taking 300mg of Lyrica, then 2700mg of gabapentin along with 50mg of Tramadol three times a day. My concern is that the only way to really relieve, if not reverse, small and/or large fiber neuropathy is for a neurologist to find the etiology and treat the underlying cause. Instead, doctors prescribe a lot of medications that mask the problem and let the disorder spread and sometimes become autonomic. Not good.