No, I Don’t Want a Spinal Cord Stimulator

By Crystal Lindell, Columnist

There’s a word that my best friend came up with that we now use when someone is being obscenely awful: J-hole.

It’s a mix between a jack [redacted] and an [redacted] hole. Get it? J-hole. You’d be surprised how useful it is. Especially around kids.

And can I just tell you something? The pain specialist I saw yesterday? He was a real J-hole.

I used to think I just had a string of bad luck when it came to doctors and it was some weird coincidence that most of the ones I met were J-holes.

But now I’m starting to wonder if there’s something about the medical profession that has a way of attracting an above average number of J-holes.

Yes, there are good ones. I think I’ve met two of them — in six years with chronic pain. But most of the doctors I see? Well, they’re J-holes. And this guy was one of the ones that prove the rule.

He is obsessed with me getting a spinal cord stimulator. But I do not want to get a spinal cord stimulator. It’s created some friction.

This was only my second time meeting with him. He oversees a local pain clinic where I now get my weekly lidocaine infusions. It’s been great, because before I found this place, I had to drive two hours each way to the closest university hospital for the infusions. And I am too sick to drive afterward, so I was always begging people for rides. This place is about a half hour from my house, and right by my mom’s work, so it’s super convenient.

But every single time I go in, they try to sell me on this spinal cord stimulator thing. And I’m just not interested.

I usually see another doctor, a woman. Technically, I think she’s a nurse practitioner. And she at least has the ability to read a room. She presents the spinal cord stimulator every week like one of those cashiers at Kohl’s who is required by corporate law to ask if you want to sign up for a credit card, but who knows just as well as you do that you’re never going to be interested. And then we both move on. 

She’s in Mexico for Christmas though, so yesterday I had to see the J-hole guy. And he’s not someone who likes to hear the word no.

He asked me if I was interested in the stimulator, and I told him I wasn’t. Then he asked why not, so I told him I talked to my primary care doctor and he didn’t recommend it, which was true.

My PCP, who is an internal specialist at a university hospital — so you know, qualified — said I probably wouldn’t get much more relief than I get from the infusions, and that I would probably still need to take hydrocodone.

He also told me that a fair number of the patients he knows who got a stimulator ended up getting infections from it. And so for now, he recommends that I stick with the lidocaine infusions.

I trust this guy. He’s been my PCP for like five years and he has always taken my pain seriously. He’s one of the two doctors I’ve met who is not a J-hole.

And you know what this pain specialist said when I told him what my PCP said?

“Well that guy doesn’t know what he’s talking about.”

Ok. Cool.

So then I told him that I write for a pain site online and I’m pretty connected to the pain community and I have heard nothing but bad things about these stimulators. They’re hard to remove. The batteries die. They don’t work that well.

His response to that was, “You can’t believe everything you read online.”

Always a good thing to say to someone who just told you they write for an online publication, am I right? My sister was in the room and told me later she wanted to laugh in his face when he said that.

Then he tried to lecture me about getting weekly infusions and said insurance wasn’t going to be willing to cover those forever, and in my head I was like, OK, did my insurance tell you that? Or are you just annoyed that I come in here every single week and give you hundreds of dollars in revenue for what is basically a simple IV, and you would prefer that I stop? Because I can always go back to the hospital for infusions, where they at least offered me graham crackers every week.

His main selling point was that the stimulator would free up my life, so that I wouldn’t have to deal with the weekly infusions. It’s an argument that makes sense to healthy people, but what he doesn’t understand is that the infusions are what have freed up my life.

Before the lidocaine, I was lucky to get one good day a year. Now I spend one day each week dealing with an IV drug that makes me nauseous and tired and then I get the whole rest of the week to live my best life. It’s amazing! Plus, I get the added benefit of not having to have surgery on my spine.

Look, at the end of the day, the idea of getting something implanted into my spine just doesn’t sit well with me, even if complications are rare. Especially since I have a bad habit of having rare medical issues.

And it’s hard to take a doctor seriously when you know he stands to make thousands of dollars if I get the stimulator. But for now, I’m stuck going to this pain clinic for my infusions because everyone else in town says they are too risky to do.

But no, I’m not going to be getting a spinal cord stimulator. Maybe I’ll change my mind though. After all, you can’t believe everything you read online.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

4 Infusions That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist

I am so excited to finally be to my favorite letter – "I" -- in my series on alternative pain treatments. The “I” stands for infusions.

There are many different types of infusions, but the four I will cover are ketamine, immunoglobulins, lidocaine and stem cells. I have done 3 of the 4, and one of my good friends has done the fourth with great success. So I feel comfortable sharing what I know about infusions based on my personal health journey.

Ketamine

I was afraid of ketamine when I first heard about it. Ketamine was created in 1962, when it was first synthesized by scientist Calvin Stevens at the Parke Davis Laboratories. Ketamine is a potent anesthetic that blocks pain by acting as a N-methyl-D-aspartate (NMDA) receptor antagonist. It can also reset glia nerve cells in the spine and brain.

Ketamine is not appropriate for everyone. For me, I saw it as a chance to reverse the Reflex Sympathetic Dystrophy (RSD) that I had been living with since 2002.  My excitement was great, along with my family’s. My regular treating doctors were not so optimistic about ketamine, but were not discouraging it either.

I began receiving ketamine infusions in 2009. They put me into remission and I continue with booster therapy as needed. I still have flares, but ketamine got me through the biggest challenges of living with RSD. Here is a video of me after my initial infusion treatments, which many find motivational.

Before I started getting ketamine infusions, they wanted me off opioids completely so that my nervous system would reboot better. Research showed that ketamine patients on opioids were not getting the same good results as people who stopped taking them. Since then, I have also learned that opioids also set off glia cells, which is not a good thing for nerve pain patients.

Immunoglobulins

Intravenous Immunoglobulin – known as IVIg --  is used to treat various autoimmune, infectious and idiopathic diseases. One of my best friends, who has multifocal motor neuropathy, uses it to stay functional.

I have not had IVIg yet, but if ketamine didn’t work for me, I would give it a try, insurance permitting. The cost per treatment is between $5,000 and $10,000, so for many it is not an option.

If you have the cash, the FDA has approved IVIg for graft disease and idiopathic thrombocytopenic purpura (ITP). It is also used to treat patients with Kawasaki disease, Guillain-Barre syndrome, and polymyositis/dermatomyositis. I know a number of people who have used it for RSD.

One of the complaints I have heard from friends who use IVIg is that it takes time before your feel any benefits – sometimes days or weeks. If it is a viable treatment for you, there should be some changes in your symptoms and pain levels within 4 weeks.

However, some people do not respond to IVIg and it is very expensive to try just to see what happens. The cost is high because immunoglobulin products come from the pooled human plasma of a thousand or more blood donors, who have to go through an extraction process themselves before it can be processed and ready for use in infusions.

Stem Cells

Stem cell research could pave the way for an entirely new approach to chronic pain that reduces the current reliance on opioids and other analgesics.

I tried two rounds of stem cell infusions for gastroparesis, intestinal ischemia, heart valve dysfunction, cardiac ischemia, and temporomandibular joint disorder (TMJD).

The infusions reversed my gastrointestinal issues within 24 hours and my heart issues in 7 days, but it took longer for my TMJD to feel any relief. I did get some, just not as much as the other areas of my body. I also got improved function in my ovaries, with an increase in estrogen production I did not have before stem cell therapy.

The providers I worked with said it would take 6 to 8 rounds of stem cell infusions to help my nerve pain. I don’t have the money for that, so I stopped after two treatments.

Stem cell studies I have seen show great promise for multiple sclerosis patients, and I will be watching closely to see if it works for RSD and other neuro-autoimmune diseases. Stem cells could also be used as a tool to reverse opioid tolerance and opioid-induced hyperalgesia, two problematic side effects of opioid therapy.

Lidocaine

Although my providers told me that lidocaine infusions are practically pain free, I can tell you they are not. The lidocaine infusions I was given were in conjunction with my stem cell therapy. I felt everything and came away feeling that lidocaine was not a good option for me.

My step sister did have good results from her 7-day infusions of lidocaine, so it goes to show that you have to check to see what works best for you.

Lidocaine is an amide anesthetic and has a wide range of mechanisms of action. Research has shown that lidocaine, when given in a low dose intravenous infusion, has successfully provided pain relief for several chronic pain conditions that have failed other treatment modalities. A recent study in Pain Medicine found that lidocaine provided pain relief to 41 percent of patients, most of whom had neuropathic pain. 

According to providers at Stanford University, the success of lidocaine infusion is dependent on the specific cause of your pain. Some patients report immediate and long lasting pain relief, while others say relief came slowly and only lasted while the medication is being infused. Some patients also report unpleasant side effects.

The only adverse reaction I had – besides the fact it didn’t work for me – is that the infusion itself was extremely painful. Physicians have no way of knowing how you’ll react until you try it. By the time I was begging for help during the infusion, it was too late.

PNN columnist Crystal Lindell has been getting lidocaine infusions and they’ve helped Crystal reduce her use of painkillers. A recent study in Pain Medicine found that lidocaine provided long-lasting pain relief in 41 percent of patients, most of whom had neuropathic pain. 

I would be glad to share more of my experiences with infusions for anyone who has questions from the patient perspective. I would also love to hear your stories about infusions and whether they worked for you. 

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Getting off Painkillers With Lidocaine Infusions

By Crystal Lindell, Columnist

I keep telling myself I’ll write about my weekly lidocaine infusions when I finally have everything figured out. 

I just need to figure out how to pay the $80-a-week co-pay, figure out who can drive me two hours each way to the hospital, and figure out how to manage the extreme fatigue I endure for at least 24 hours after each infusion. And I need to figure out how I can possibly do this every single Friday for the rest of my life.  

And then, once I figure everything out, I can tell you guys how I solved all of it and you will think I’m awesome. 

But I can’t freaking figure anything out.

I started the infusions this summer at the suggestion of my pain management doctor. I did a trial run, which was completely insane, but actually worked to cure my chronic pain for six days. And then I decided to continue the treatments weekly, because that’s how long it lasts for me. 

The first infusion was intense. Symptoms included: randomly crying and laughing because I lost control of my emotions, my lips going numb, extreme fatigue, losing coordination in my legs, nausea, and not being able to make basic life choices afterward — to the extent that I couldn’t even pick out which rice I wanted at Qdoba.  

Thankfully, the symptoms seem to be less intense as you get more of the infusions. I’m still extremely tired after each one though, and unable to drive, and my heart always feels weak. Also, I still can never decide on which rice to get. But I don’t feel like I’ve lost my mind each time. 

Each one takes about two hours at the hospital from start to finish, but that also include a saline flush at the end. I also need a full 24 hours to recover from every single one. And it’s not like an “Oh, I’m so high and this is fun!” 24 hours. It’s more of a hangover/flu/fatigue 24 hours. 

Also, like I said above, I have an $80 co-pay every week that I cannot afford at all. But actually that’s a great deal because the total bill for each one is about $500. I’m blessed to work full-time from home and have great insurance that mostly covers it. As far as chronic pain patients go, I’m probably in the top 1 percent. But it’s still too much for me. 

Honestly though, the hardest part has been finding rides. It’s a two-hour drive each way I’m and way too out of it afterward to drive myself. I have not been able to find anyone locally who does the infusions because the treatment is relatively new for chronic pain. And my town is so rural that we don’t even have Uber. If I ever have to stop the infusions, it will probably be because of that.

At this point you might be asking, “Crystal, this sounds like A LOT! Why are you even doing this? Why not just stick with hydrocodone?”

Because it freaking works. Really freaking well. And I kind of hate that it works because it is a traumatic experience every time, and I literally lose a day of my life every week and have no money. 

But dang if I haven’t had the best summer of my (post-pain) life this year. I’ve lost 33 pounds. I’ve been walking about six miles a day, six days a week. And while I still have some flares, I have entire pain-free days with NO hydrocodone or any other types of pain meds. And that means I get to live my life AND have complete mental clarity. In short, my quality of life has improved dramatically. 

It’s been miraculous. And thus, I am highly motivated to continue this treatment. 

Since starting the infusions, I have discovered a few helpful things. For example, drinking a full-sugar Gatorade and eating a Snicker’s bar right before the infusion seems to help with the fatigue. And doing a longer saline flush also helps with the after-effects. 

Also, the less I do physically the day of the infusion, the easier it is for me to recover afterward. And it’s important to wear extremely comfortable clothes and a large sweater regardless of the weather because the medication messes with your body temperature. 

I have not figured out the transportation yet, obviously. I actually called my insurance company today to ask if they had any suggestions, and they literally said, “Have you tried Googling it?” 

Yes. I have tried Googling it. 

I also called the hospital and they told me the only transportation they do is with an ambulance. Cool. Thanks. 

I’ve called a million local pain doctors and infusion centers and had appointments with a handful of them trying to find a local provider. One pain doctor said he could do them for me once a month, but that’s not enough and I’d just end up going on and off hydrocodone all the time. 

Every time I talk to a new pain doctor I beg them to start or expand this treatment so that others with chronic pain can get the same relief I do. 

With all the anti-opioid hysteria you would think doctors would be begging patients to try treatments like this. But alas, they are still sticking to the classic list of things that don’t really work — mindfulness, Cymbalta, nerve blocks, epidurals, and my personal favorite: “You should be taking fewer meds but I have no alternatives to offer.”

In contrast, research is showing that lidocaine infusions can be very effective. In a study recently published in Pain Medicine, they were shown to provide long-lasting and adequate analgesia in 41 percent of patients with chronic pain, most of whom had neuropathic pain. 

I am holding out hope that treatments like this will become more common and less expensive. But there’s another part of me that does worry that pumping my body full of an intense drug every week could have long-term effects that haven’t been discovered yet. 

In the end of course, treatment decisions like this have to be made on an individual level. Only you and your doctor can decide if getting drugged every week is worth it for six pain-free days.

For me though, it definitely is. 

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What It’s Like to Get a Lidocaine Infusion

By Crystal Lindell, Columnist

So I’m kind of annoyed at the wellness people out there for making the word “infusion” sound like something vitamin-related that rich people get at the spa right before a couple’s massage and a facial.

That is not what an infusion is. At least, that’s not what a lidocaine infusion is. It’s also not a shot. That seems to come up at lot. Everyone thinks I went into the hospital, got a quick shot in the arm, and then went to Chipotle. Again, that is incorrect.

I recently got my first lidocaine infusion at the recommendation of my pain specialist and my primary care doctor. They were hoping it would help me with the daily pain I have on my right side from what they think is intercostal neuralgia —  basically I always feel like I have a broken rib.

I was really apprehensive about trying it though, and the only reason I agreed to do it was because my primary care doctor strongly encouraged me to try it and I trust him. We’ve been through some stuff together and he has always seemed to have my best interest at heart.

He said of the like five people he knew who tried it, all had found success with it. I’m pretty sure he also is hoping to get me off opioids because it’s a huge hassle for him to write a hydrocodone script these days — all sorts of government regulatory boards are involved and he has to check a drug database every time to make sure I’m not coming up with a red flags. But I get that — I don’t actually love being high all the time either.

The way the lidocaine infusion was explained to me was not super encouraging though. Basically, they give you an IV at the hospital infusion center, and you have to sit there for an hour while they slowly pump the medication into your system. Then, at least for the first visit, you have to sit there for another hour after that and get a saline solution to keep the line open. Then they do a blood test and send you home. Also, you have to bring someone with you the first time, in case you can’t drive home afterward.

If it works, you have to go in every month and do it again.

The doctors told me that they don’t even really know why lidocaine infusions work because the effects seem to last longer than the drug should even be in your system. But they think it somehow blocks pain signals in your body.

On a personal note, I was apprehensive because I spend most days dreaming of living in Paris, and I didn’t want to be dependent on something that I’d have to do monthly and that might not even be available in France. In fact, Paris is why I want to get off the hydrocodone in the first place. It’s harder to get opioids over there.

But, like I said, my PCP was all about this infusion, so I decided to do it. They told me I could expect things like numbness and tingling in my fingers, toes and my mouth, a metallic taste, lightheaded, and a feeling of cotton in my mouth.

And, depending on how it went, I also might get nauseous and dizzy. But, they made it sound like all the side effects would go away as soon as they stopped the infusion, and that I should be fine as soon as it was over.

They did not tell me I would feel like I had been drugged.

I mean, I guess, looking back, feeling lightheaded is kind of along those lines, but the feeling is way more intense than that. At least it was for me.

I brought my mom and sister with me, and thank God I did, because the whole thing ended up being a lot more traumatic than I was expecting.

When they started the infusion I was actually FaceTiming my best friend, who said she could literally see the effects of the lidocaine on me in the span of one sentence. My speech got slower, my head got heavy and I could not think clearly.

“I... don’t... think... I.... can..... talk....... anymore,” I told her. 

“Yeah, I know,” she said before wishing me luck and hanging up the phone. 

I don’t know why I was not expecting such an intense reaction, but I wasn’t. About 10 minutes in, I literally started crying for no reason. And the reason I know I had no reason to cry is that I remember telling everyone around me that I didn’t know why I was crying. 

When I started getting really nauseous, they did stop the infusion and give me some graham crackers, which helped. But as soon as they started again the drugged feeling came back. 

The nurse at the infusion center said a lot patients describe it as having too many cocktails. So it’s past that fun one-or-two-glasses-of-wine stage, but just shy of the blackout-drunk stage. Add in that it all feels like it’s happening against your will, and it’s not exactly a fun two hours.

Also, my legs turned to jelly, and I couldn’t think clearly at all. I was literally so naïve going in that I honestly thought I might be able to get some work done while they were doing the infusion. I was not. All I could manage was lying on my back, asking everyone around me if my lips were swollen, and closing my eyes. 

Overall, it was a lot more like going into the hospital for a small procedure than I was expecting it to be — traumatic, time consuming and hard on my body.

When they finished everything, they just let me get up and walk out of the hospital, but I should have had a wheelchair. My legs did not seem to work at all and my brain was in a fog. I felt like how people in action movies look when they’ve been drugged and kidnapped against their will. 

I was hoping to go home and sleep it off, but I woke up the next day still feeling pretty drunk. All told, it took about 15 hours after the infusion before I felt like I had my brain back. 

Did It Work?

Of course, none of this really matters. What really matters is whether or not this thing worked. And I have to tell you it did — for about six days. 

Then, on day seven I woke up at 1 a.m. feeling like someone was stabbing my ribs and I remembered how much chronic pain sucks. I spent the whole day on hydrocodone trying to get my pain under control. 

Those first six days were glorious though.  I would literally wake up pain free. Healthy even. And I got so much done around the house. I did the dishes, I vacuumed. I went for walks without any pain at all. My body felt like it did before I ever had intercostal neuralgia. It was incredible.

Today is day eight, and I haven’t taken any hydrocodone yet, but it’s early and who knows how I will feel later. 

Maybe day seven was just a fluke. Maybe it was the weather related, or maybe it was because I ate too much sugar and it spiked my inflammation. I don’t know. I’m seeing my pain specialist again in a couple weeks, and we’ll decide at that time if another infusion makes sense for me. I hoping she will tell me that the more infusions you get the longer they last, but I have no idea if that’s the case. 

Whether or not it makes sense for you is another matter altogether. It depends on what type of pain you have, what types of drugs you are already on, and what your feelings are on being drugged.

I will leave you with this though. The nurse at the infusion center said they are getting way more patients for lidocaine infusions for chronic pain and she thought it was directly related to the push to get people off opioids.  The nurse also admitted that the lidocaine doesn't work for everyone, and she was seeing lots of patients who had been managing their pain with things like hydrocodone for decades suddenly being forced to get off them. She said it was hard to watch patients suddenly lose access to drugs that had been helping them. 

But, she also said that for some patients the lidocaine infusions were life changing and a miracle. 

Pain is complicated and how we treat it has to be complicated as well if it’s going to be effective. Maybe lidocaine can help some people, but maybe opioids are the only thing that help others. And maybe, as most of us already know, everyone is different. 

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.