Cha-a-a-a-nges! - Or the Good, the Bad and the Ugly of PN and RLS.

For awhile my life seemed to be in a bit of a tail spin. Physically and because physically, mentally and emotionally as well.

But I have HOPE!!! Just bear with me while I ramble. I have PN (Peripheral Neuropathy, non-diabetic and idiopathic) and RLS (Restless Leg Syndrome). One of these by itself is bad enough. One of these is not so strange or unusual to have. I saw recent statistical data that stated that approximately 1 in 14 people has RLS to some degree. Some start in childhood with growing pains or flat out RLS. I had growing pains when I was 5. *Bad* growing pains. The RLS first started with one of my pregnancies. I honestly don't remember which one. Prior to being but on Celexa in 2002 the RLS was very mild and very infrequent. Celexa was *my* trigger. After coming off Celexa the RLS seemed to subside a good deal. Enter Effexor a couple of years later. It got really bad on Effexor but suddenly I was having new sensations..... tingling and numbness at night. In the fall of 2006 I was diagnosed with PN. Wonderful. A neurological disorder with no known cause. And worse yet, no cure. Really? (I know now that SSRI's are a big no-no for people with RLS. They only make things worse.)

My symptoms have progressed to burning, tingling, a little guy with a map pin randomly poking my feet in various places, a dull - bone deep ache in and throughout my feet and a few other very fun symptoms. After doing some research I really began to wonder if I only had RLS and *not* PN too. Yet, a nerve conduction study and other tests on my feet and lower legs done in the fall of 2006 showed permanent nerve damage. Can one get permanent nerve damage from RLS? (Note to self, research permanent nerve damage in RLS) At any rate it's not been a fun ride. The worst of all of this is that the symptoms are at their worst at night. At their worst when I want to go to sleep. I don't do well with even minimal sleep deprivation.

My initial treatment for the PN consisted of Gabapentin (generic Neurontin) a standard treatment for both PN and, as I discovered later, RLS. I started at a low dose. It seemed to work 100% on the symptoms. There were some side effects with Gabapentin I was not happy with: Bloating and weight gain. Like I needed more weight gain after the SSRI's. Sigh. About a couple of months after starting the Gabapentin the Neuro had to up my dose to twice what I was then taking. I didn't feel this was a good sign. In between all this I was having carpal tunnel syndrome surgery on both hands, three weeks between each hand. After the left hand (second to be done) I was having problems with the hand....the surgery on the left hand had *not* gone as well as the right hand. The right hand was the worst one as far as symptoms, etc. I would have expected this kind of pain and such after the right hand surgery. But the left had me upset because it seemed the surgery hadn't gone as well as the right hand. I was awake for both....sorta, if you count being a bit zoned out on some heavy duty sedatives and such. The left hand did *not* go as smoothly as the right. The cuff they inflate on the upper arm to hold the local in place leaked or wasn't properly done and it
deflated. The local was wearing off part way through the surgery. That was fun.

The healing for the left hand took so long, the pain lasted way beyond what the right hand had done, I was looking for pain relief. The doctor seemed reluctant to give me more Darvocet. He gave me Tramadol instead which did little for that pain. Remember the Tramadol, it figures in a good bit later.

During the healing of the left hand I suddenly became suicidal. I've never been suicidal before. Even with the other problems I'd been treated for I'd never been *that* low. It was horrible and incredible to me because it came on so quickly. I began looking at the meds I was on. Effexor XR - 75mg/day, Tramadol, very sporadically - 50mg, Gabapentin - 300mg once a day an hour or so before bed (I'd only been on that dose for a few weeks). Ibuprofen - 800 mg twice a day. I was only taking it once a day. I began to go over what I was experiencing in addition to the suicidal ideation. I was beginning to feel like crap and what I was feeling, after some research, matched the Gabapentin sides *including* the suicidal ideation. At this point, feeling I had little left to lose I stopped the Gabapentin cold turkey and was afraid of the Tramadol and although I'd never really pinned any of the sides I was having to the Tramadol it still scared me. Was this the Gabapentin, the Tramadol or an interaction between the two? After much research I know now it wasn't the Tramadol...it most certainly was the Gabapentin. Within just a few days of stopping the Gabapentin I was fine. No longer suicidal, the bloating and other icky physical sides were gone. Just that quick. For good measure I ended up weaning off of *all* the meds I was on. Other than the Zyrtec which I may be on for life because of itching they can't find the cause for.

Ok, so now I was mostly pharmaceutical-free. That's when the real fun began. The PN symptoms came back worse than they were to begin with. Much worse. And all the things I was trying was having very limited success. This led to many sleepless nights. I couldn't go to sleep until early morning...about 4:00 am. The pain and discomfort was excruciating. It became so bad that they hid the machete because I was threatening to cut my feet off.

I spent many nights right here at the computer, in extreme pain and discomfort, crying, exhausted, desperate for answers and a solution. The information I was finding was not encouraging to say the least. Turned out I just didn't know the correct questions to ask Google to find what I *really* needed to find. One night I found a message board. That was the beginning. Here was an entire group of people suffering from what I had. And many of them, most of them were far worse off than I was. It almost made me feel like I was simply whining when their conditions were far worse than mine. But they didn't see it that way. Each of our pain is subjective. I don't have other conditions in addition to the PN that many of them have and live with on a daily basis. It didn't make *my* pain less or of less importance than theirs. That's what they told me. I was there looking for the same answers they all were.

A lady, called Rose, suggested I read the stickies at the top of the forum and also take a look at her website. Seems Vitamin B-12 (along with other B-vitamins and other supplements) was going to play a huge role in my future. By following the advice and trials and errors suggested by various members I can tell you that my pain was greatly reduced from just post-gabapentin to now, around 90%. Rose is my hero. :-)

Enter the Tramadol. At the beginning of the B vitamin course I was still having a lot of pain. That's to be expected. It takes time for the things I was told to use to start the healing process and during the healing process there would be periods of returned pain, but a different kind of pain as the nerves heal and/or regenerate and come back to life. Yes, I said healing process. More on that later... I'd asked questions about pain relief and read many posts and one thing that became clear was that Tramadol was the pain-reliever of choice for many people with my level and form of pain. I still had most of that bottle of Tramadol sitting high up on the shelf here. Did I dare take it? Again, I had little to lose. Took one Tramadol and it was like a switch had been flipped. NO PAIN. No RLS type symptoms. For the first time in a number of years I was symptom free. I couldn't believe it. I've been on Tramadol since that time. My PCP gave me 37.5 with Tylenol (Ultracet) (which I should never have been on the Tylenol, I don't need it and it only causes liver damage). I'd been taking that successfully for more than a year until just a few weeks ago. I was having to take two where before I only had to take one. So now I'm back to the 50mg's of plain Tramadol. That's cool. I'm still learning and just recently learned that I should take a 2-day drug holiday every two weeks with the Tramadol. That should prevent any further escalation of dose.

Things to consider: Tramadol does carry a small risk of addiction. But it's a *very* small risk especially for people like me, dealing with chronic pain, almost non-existent. I cannot use any opiate based pain relievers with Tramadol because for me the Tramadol completely cancels out the opiates. It's like I took nothing. Not sure how long I'd have to stay off the Tramadol before the opiate class would once again work.

Ok, now for the RLS. I've never been formally diagnosed with RLS. Partly because Dx depends on symptoms, not tests. There are no real tests for RLS other than sleep studies. No labs, etc. I'm still not sure where the PN starts and ends. That is, I'm not 100% sure which of my symptoms are strictly PN or are RLS or a combination of the two. RLS comes in many flavors.

I had a doctor's appt last week. New doc, old one left with nary a peep to me. I'm highly tickled as this new doc, actually a NP (Nurse Practitioner, which I prefer) is seemingly well versed in PN *and* RLS. She knew that Gabapentin depletes B-12 which would account for my worsening symptoms, increase in dose and the almighty horrible pain I had after stopping the Gabapentin. I mentioned that I have RLS type symptoms in addition to the PN. To me it's either the PN or I *do* have RLS along side the PN. I mentioned Lyrica, recently approved to treat RLS. I wasn't aware that Lyrica is related to Gabapentin. So that's out. She says let's try Mirapex instead. Since she actually listened to me and took me seriously, that I'm sensitive to drugs, she told me to stay at the starter dose of 0.125 mg of Mirapex. This is day 7 of Mirapex and for the first time in a very long time I didn't take any Tramadol at *all* yesterday. Was I going to go nuts last night with the PN pain? No. I was amazed. That's what's got me wondering if I really do have PN at all or are all my symptoms RLS?

I found a wonderful site in the past few days. http://www.rlshelp.org It was created by a doctor who specializes in treating RLS. Tons of good info there. This research has led me to the conclusion that I really need a more definitive diagnosis. I need more testing regarding what may or may not be PN. The Neuro Doc I saw to begin with, turns out he's not so good. Oh, I'm sure he's great with other things...but to tell someone that there's really no cause for their PN and that's it's pretty common in people as they get older was really just the lazy way out. No further testing. (see me rolling my eyes here?)

And no cure. Again, really?? Well, I beg to differ. There is increasing research about nerve healing and regeneration of nerves. Things they previously though impossible. And this regeneration is due to non-traditional therapies involving various supplements. On that same PN board there was a post made by Rose just a few days ago. She is to have some spinal surgery done and the team of neuro docs was running the whole gamut of tests and then some. They told her she had to have been misdiagnosed all those years ago because she doesn't have PN. I still laugh every time I think about that. She *did* have PN. She had extensive testing done. More than once through the years. Face it, docs. You don't have all the answers and neither do the drug companies. As a matter of fact the drug companies have much to lose to non-pharma treatments. Much to lose if this can be cured. And it can be cured. The rate of cure and of course how fully one heals varies person to person. It depends on the cause of the PN, how long one has had it as there seems to be a point of no return and other variables. But it can be healed!!!

So, I'm on my way forward. I feel great mentally and emotionally...for the first time in a long time... My pain is more than adequately controlled and that's pivotal. The Mirapex, so far, has been a (insert your god of choice)-send.

Anyone who suffers from any chronic pain has the *right* to adequate pain control. Many people with chronic pain are made to feel like drug-seekers when they ask about various treatments available especially when it comes to the opiate class of drugs. GP's and many other doctors are scared to give the stronger drugs or give any of the class of addictive drugs for long term. For people with chronic pain it's been shown over and over that very few of us ever become addicted. We're not taking the drug because it gives us a buzz. We're taking it so we can lead a semi-normal day to day life! One of the best treatments for severe RLS symptoms is Methadone. Gee, I'd like to see the look on the doctors face when he's asked for Methadone. I'm not anywhere near needing Methadone. But some day I could be. And I want to know that I will receive the treatment I'm entitled to. Severe, prolonged, intractable pain can lead to death....heart attacks, stroke, etc. It also leads to suicide. Add sleep deprivation to that level of almost constant pain and it's a volatile mixture.

So, for now, I feel really good. Physically, mentally and emotionally. I feel human again and no longer at the mercy of my chronic conditions. And best of all, I have hope for the future of my PN. That there will be no future with PN.