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

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.

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.

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.

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.