Lyrica, Nerve Pain & Side Effects

A little over a week ago, I cut back on my dose of Lyrica. Shortly before that, my pain specialist increased it from 100mg to 150mg per day in the form of 75mg capsules twice per day. The increase was to address a recent increase in nerve pain in my legs and lower back. It definitely helped. Although, I'm still not quite sure why it got worse recently in the first place. When I talked to my pain specialist, I asked if there was anything else I could do to manage nerve pain. Ice and heat both just seemed wrong. The only things I knew to do were to try to shift positions to reduce pressure on the affected area. Even that didn't really help much. She said no, that there wasn't much I could do expect to try more Lyrica. I was fine with that because at least I knew what to do or, rather, I didn't have to wonder anymore if there was more I could be doing to help. As it always does for me, the Lyrica worked fast. It made a huge difference in the nerve pain. 

Unfortunately, Lyrica comes with a certain amount of problems. First of all, it can be expensive. It started out between $50-60 per month with my insurance and that was with the discount for mail ordering it. Which, by the way, you absolutely must look into if your insurance offers it. I have a pretty good PPO with United Healthcare. They use a mail order pharmacy called Medco. They require you to use Medco for prescriptions you will take regularly and limit the number of times you can pick up those prescriptions at your local pharmacy. This rule, however, does not apply to controlled substances or any medications that you cannot refill for whatever reason. The wonderful thing about mail ordering your prescriptions is that they come in 90 day supplies but you only pay 2 co-pays instead of 3. It saves you one full co-pay every 90 days. That can mean the difference of hundreds of dollars per year for some medications. Anyway, the price of Lyrica has come down significantly for me over the last 6 months. But, when I increased the dose, the price increased too. Another problem is its many, many side effects. The biggest side effect is drowsiness. And it is not messing around. I get seriously, disastrously tired when I take it. When I was working full-time, I could only take it at bed time because I simply couldn't function through the fatigue if I took it during the day. When I stopped working, I immediately began spacing out my doses and taking it during the day. I think it made a difference in the amount of relief I experienced because a certain amount of it is release shortly after you take it. It is meant to provide continuous relief but I believe its bioavailability is such that a small amount is released shortly after you take it for immediate relief. Since I wasn't working, fatigue or drowsiness wasn't an issue and I was able to maximize the benefits of Lyrica. Another thing to consider is the benefit of keeping a drug like that at a constant level in your bloodstream by taking it at the same times every day. That is another way to really get the most it has to offer. 

Of course drowsiness is not the only major side effect of taking Lyrica. Other side effects that I experienced included weight gain, dizziness, trouble concentrating (though it's hard to blame Lyrica for that one since just about everything cause it) and dry mouth. Then, there is the risk of disrupting neurological processes. This isn't listed anywhere in the drug information but I think it's a fairly obvious one. Lyrica works on your brain and how it perceives pain. It deals directly with pain signals that go back and forth between your brain and nerves. So, it makes to me to think that it could possibly affect the brain in other ways too. It could be muddying the neurological waters and I can't really afford to do that. In my case, I've noticed a huge increase in what I believe are neurological problems like twitches, visual disturbances and cognitive impairment (again, who the hell could sort that one out from all the other possible causes). The twitching has gotten much, much worse in recent months. I do not yet know if it is truly neurological, why it has gotten worse or how it relates to Lyme. I do know that neurological impairments of all sorts come with the territory in Late Stage Lyme. However, I'm not certain that the twitching is included in that or if the fact that it's gotten much worse is an indication of something more. It is far worse at night. It happens throughout my entire body. It is constant and varies in severity. It cause everything from my legs, feet, arms and hands to my head and neck to twitch. Sometimes the twitch or spasm is mild. Sometimes, however, it causes an entire limb to move suddenly. When it is the worst is when it jumps around causing one part of my body to twitch then another and then another, in rapid succession for hours. I'm growing more and more concerned about it by the day. I really want to understand it and make sure that it is not an indication of something more serious. So, I was wondering if Lyrica could be connected somehow to the presence of new or worsening neurological problems. That was one reason that I thought cutting back might be a good idea. Plus, there's something a little unsettling about it, always has been. It's too new and no one knows what the long term effects could be.

Even still, the biggest reason I decided to cut back was to test a theory I had about urinary hesitancy. Until very recently, I've only ever had to deal with urinary hesitancy on a few occasions, both a result of medications. The first time was when I took Oxycontin for a few months last year. It was the first extended-release pain medicine I ever took. It caused noticeable urinary hesitancy but it was not nearly enough of a problem to stop taking it. Then there was the time I had my gallbladder taken out and suffered from a problem called "neurogenic bladder". Basically, the anaesthesia during surgery can cause a disconnect in communication between the brain and bladder. You feel the urge to go and can feel when your bladder is full but you are unable to actually empty your bladder. It is temporary and most common in men. That is why men are usually catheterized during major surgery and women are not. As with everything else, I was the exception. Lucky me. My bladder just shut down. Nearly 72 hours after my surgery, my bladder had still not kicked into gear and it was full that I looked like I was several months pregnant. It was at capacity and the pressure was intense. I called my surgeon who didn't listen to me and dismissed it as an infection. He called in antibiotics, which I never picked up, for a bladder infection I never had. I know that because I finally went to a local urgent care facility where they tested me for it and the result was negative. To my horror, they had to use a catheter and empty my bladder. I had to take a Xanax because I was freaking out. It is still, by far, one of the most humiliating experiences of my life. By the time I got there, my legs were swollen and I weighed nearly 8 pounds more than usual. They ended up drained nearly 2 liters from my bladder and told me that it could have ruptured. I was horrified but so relieved. I couldn't believe it. Think about it, 2 liters, as in a 2 liter of coke. Picture that in your bladder. Not fun. Worse than that, they told me that if it didn't start working on its own within 2 days, I would have to come back in and get setup for a catheter to be sent home with me. I wasn't having any of that! They gave me a few suggestions for how to kick start it and I took all of them. They said to exercise, avoid any medications with sedative effects-pain pills, muscle relaxers, lyrica, xanax-and drink plenty of fluids and monitor the situation. So, for 2 days I couldn't take much medicine for the pain which was a nightmare. I spent those days pacing around the house in an attempt to exercise. I hadn't exercised in years and it was miserable. It made the joint pain unbearable. But, it worked and my bladder finally came back to life. So, when I started having problems with urinary hesitancy a few weeks ago, I didn't waste anytime figuring it out. Lyrica was the only medication I had changed around that time. I wondered if the increase caused too much of a neurological disruption and somehow interfered with my bladder the way that anaesthesia did after my surgery. Shortly after I cut back, the problem went away. Now, I have no scientific evidence to support this, but I really do think it was causing the problem. Also, I lost a couple pounds right away when I cut back. Nice! 

My plan for cutting back was to see if doing so would relieve some of the side effects but still be enough to keep the nerve pain manageable. I decided to cut out my bed time dose and take only one 75mg capsule in the morning. I wondered if it was necessary to take it at night and if it might be a waste while I sleep. So far, things have been just fine. The nerve pain is reasonable most of the time and some of side effects have gone away. I'm going to stick with it and see if I can handle the lower dose. I figure that it's always worth trying to get by on less medicine. And again, it just makes me uneasy to take such a new medication. I'll be glad when I get to stop it for good. 

Now, don't get me wrong, Lyrica is a miracle drug. It works immediately and completely for me, like actual magic. You can read my testimony in the "How the Pain Started" posting next time you've got several hours to kill and a box of tissues. It's incredible stuff. As you'll see if you read that post, it pretty much saved my life once.

How the pain started

My joint pain became a problem in August of 2007. Until that time, I only experienced joint pain if I was on my feet for a while or did too much walking. That changed with the first of a series of pain episodes that started suddenly. I was recovering from an ordinary sinus infection when the unprovoked pain started. At first, it was difficult to describe the pain. Without being able to see it or identify an injury or obvious cause, I did my best to piece together where it was and what it felt like. Not knowing all that much about anatomy, I described it as pain in the lowest joints in my lower back. The pain was constant and unprovoked. When I moved, it felt like pulling at a deep cut. I pictured an open wound in my joints being twisted and stretched. The pain was throbbing, intense, and devastating. I began using ice packs to reduce the inflammation. They provided only temporary and marginal relief. Unfortunately, this was all happening during my first week of class at the local university. I was not yet acquainted with the layout of the school and found myself wandering around this enormous campus lost and in pain. The only way I could stand the 45 minute drive to class was to have ice packs in the car. Half way through my first day of class, I gave up and went home because I simply couldn't walk anymore. 

After about 4 or 5 days of that, the pain spread and became less intense. It spread to the muscles and soft tissue around my lower back, hips, and thighs. The muscles were sore to the touch, as if I had done an intense work out. I couldn't cross my legs or bend down to pick things up. By the end of a week, even the skin over my joints hurt to touch. Even using a washcloth in the shower hurt. The whole episode lasted about a week. Somewhere in that week, my primary care physician, Dr. K, gave me pain pills and put me on an anti-inflammatory diet.

Identifying this experience as an episode was not possible at first. When it began, I had no way of knowing when or if it would stop. It would be months before I got the Lyme diagnosis and learned about the 4 week cycle of symptom flares. I quickly learned that the pain did not go away when the episode was over, it was only reduced. After that first episode, every 4 weeks or so, I would have another. None of the episodes were as intense as the first, but they all followed the exact same pattern. By this time, ice packs, Biofreeze, pain pills, and disabled parking had become a way of life. I found that I could manage the pain between episodes with these coping mechanisms. During an episode, however, there was little I could do to get relief. Each episode that Fall was more depressing than the last as I began to realize that they weren't going to stop. For the first time in my life, I had thoughts of suicide that mirrored the intensity of the pain. By the end of Fall, I was on stronger pain pills and was more frustrated and than ever.

About a week before Christmas, I went to see my other primary care physician, Dr. B. She is an internist and shares a practice with her husband, who is a rheumatologist. I had been to see the rheumatologist that summer, before the episodes began. My lab work and exam showed no evidence of arthritis. Of course, joint pain was only one of many symptoms I was experiencing and the Lyme diagnosis was still more than 6 months away. So, I was on the specialist circuit looking for answers. The rheumatologist told me that there were too many directions to go in and that we would have to wait for me to get worse in order to get more clues. He told me to meditate and then sent me on my way. When I saw Dr. B, she told me a version of the same thing. She half-heartedly diagnosed me with Fibromyalgia and offered to give me cortisone injections for the pain. It turns out that I had correctly identified the location of the joint pain. It was in my sacroiliac joints which are the lowest joints in the lower back. She told me that the injections wouldn't be very painful and should provide almost instant relief. Unfortunately, that was not the case.

The first injection was so intensely painful that I started sobbing immediately and a nurse had to catch me and hold me up. I don't know why I agreed to the second one. Not only did they not provide instant relief, they caused a solid week of the worst pain I've ever experienced. Within an hour, all of the muscles in my back had seized up. My sacroiliac joints were swollen, aching, and throbbing. By that evening, the pain had taken over my entire midsection and I couldn't move. I called Dr. B's office the next morning to ask if this was normal. They were very surprised to hear that I wasn't feeling better and shocked to hear that I felt worse. They told me to use ice packs and call back in 2 days if the pain didn't improve. Nothing helped the pain. No amount of pain pills, ice packs, or biofreeze helped. It felt like my joints were full of shards of glass. Sitting was impossible and laying down was worse. Because these joints are so central, you simply cannot move without using, or agitating, them. The only way I could get even the slightest bit of relief was to stand up or pace around. Of course, I could only do this for a few minutes at a time because I was so fatigued and because it aggravated my other joints. Even when I tried not to move at all, there was still a sensation of burning and stinging. I can't describe the devastation. To say I was suicidal is an incredible understatement. I was certain I was going to have to kill myself. It was not worth living like that and I was starting to make plans. It was the worst thing that had ever happened to me.

After a week of that, I somehow managed to drive myself down to Dr. B's office and beg for help. I could barely move and driving caused excruciating pain. I needed immediate relief and I decided I wouldn't leave until I got it. I expected to leave the office with even stronger pain pills but instead was given a sample of Lyrica. I was furious because the bottle said it could take up to a week to work. I did not have a week. I took the first dose as soon as I got home. Except for making me feel drowsy, it didn't do anything. So, I went about my day pacing and crying. As I said before, sitting was nearly impossible. I couldn't stand the pain of settling all the way into the chair, so I had to hold myself up with my arms. After a few minutes, however, my arms were weak and shaking and I'd have to change positions. Later that night, I took the second dose of Lyrica. About a half an hour later, I felt this bizarre sensation in my joints. It felt like tingling, the way hydrogen peroxide feels on a new cut. Then, suddenly, the pain stopped. Just like that. Like magic. One minute I was shaking and crying and struggling to hold myself up and the next it was over. I sank into a chair for the first time in a week. I stood up and walked around. It didn't seem real. I tried lying down. I could do anything. I was in disbelief. I was so overwhelmed and relieved that I started crying. It was finally over.

I later learned that Lyrica is the only medication that is FDA approved to treat Fibromyalgia. It's also used to help relieve nerve pain, especially in diabetics. I'm not sure exactly how or why it worked. The injections definitely irritated nerves in my SI joints as well as the nerves that run down the back of my thighs. So, that part makes sense. But, how it helped the rest of pain, I just don't know. But, I really don't care. All I know is it worked. I continued taking it for the next few weeks and finished the sample bottle. After that, I didn't need it anymore. Things went back to normal. The only permanent damage seemed to be nerve related.

The following week, Dr. B ordered x rays of my back. The x rays showed muscle spasms but nothing that indicated that an MRI would be necessary. Again, this was all before the Lyme diagnosis and definitely before the pain moved to my hips and became completely debilitating. If I knew then what I know now, I would have insisted on an MRI. I would have demanded that someone look at the problem instead of sitting back and watching it get worse.

No one really seems to know why I had such a bad reaction to the cortisone injections. I did some research and found information on how cortisone can crystalize in the joints of Lyme patients. This seems consistent with my description of feeling like there was glass in my joints. Whatever caused it, it was enough to finally convince me to pay the $400 out of pocket to get the Lyme test through Igenex. Dr. B agreed that this was a good idea. She told me she was out of ideas and that I should pursue Lyme with Dr. K. And that's what I did.